Is Topamax a Wonder Drug?
Over the past week alone, I have talked to several people about their doctor visits. Each one of them had a different illness and each one of them was prescribed the drug Topamax. I cannot help but wondering, how it is possible that one medication can treat so many disparate illnesses. I suspect it cannot and the overreach is driven more by marketing than medicine. This led me to do some digging into Topamax.
What I found is not good. Topamax is prescribed for a broad scope of illnesses for which there is likely little evidence of its efficacy. Take a look at the list below.
Illnesses or Conditions for which Topamax is Prescribed
- Obesity1. Medicine: Topamax
- Seizures1. Medicine: Topamax
- Migraine1,2. Medicine: Topamax
- Impulsivity3. Medicine: Topamax
- Diabetes with nerve damage4. Medicine: Topamax
- Bipolar disorder5. Medicine: Topamax
- Depression6. Medicine: Topamax
- Alcohol addiction7: Topamax
- Fibromyalgia8. Medicine: Topamax
I would like to add a 10th to that: I have broken a nail…can I get Topamax?
Honestly, off-label prescribing has gone too far! Does Topamax really treat so many disparate conditions that doctors prescribe it for everything, even when it is not FDA approved for these conditions? I must add that Topamax is one of the most dangerous drugs in the prescription market today. Not only is it a diet pill made from sugar derivatives (actually a sugar substitute) but it uses two dangerous methods (blocking both voltage dependent calcium and voltage gated sodium channels at once) to achieve what several classes of drugs normally do separately; and thus, with one medicine it affects and potentially damages the two circuits that are critical for brain function. Topamax (an anticonvulsant under additional name Topiramate (generic) and in time release Trokendi XR) is important to discuss because it was initially formulated as a diet pill. Yet over 50% of the new members who join my migraine group arrive with Topamax on their prescription list.
I have yet to find a single person on this drug who is not seriously considering dropping it due to its adverse effects, not to mention that it does not appear to work as a pain killer. Unfortunately, Topamax is difficult to quit. The most difficult problem is that doctors are under the false impression that a drug that blocks the voltage dependent calcium and potassium channels can just be easily stopped by a few days of reduction. However, since the voltage dependent calcium channel is a high voltage channel, for some people the discontinuation may end in seizures.
Evidence is also accumulating that Topamax can cause brain damage 4. Personally, I have heard of many cases where it in fact has done just that.
Topamax is a sugar substitute that failed as a diet pill but is somehow permitted by the FDA to be used for epileptic seizures. It also received approval for use against migraines. The reasons for such a turn of events is unclear; how can a drug that fails approval for a diet pill suddenly be a perfect match for seizures and migraines? Don’t we all wish for sugar pill to be a pain killer? Unfortunately, sugar or sugar substitutes do not have such serious adverse effects as Topamax (they happen to have different ones).
Adverse effects of Topamax
If we look at the list of adverse effects associated with this drug (as provided by Wikipedia – Topamax), it is clear that Topamax is not very safe. Indeed, the list is very long.
Dizziness, Weight loss, Paraesthesia (pins and needles), Somnolence, Nausea, Diarrhea, Fatigue, Nasopharyngitis – common cold, Depression, Weight gain, Anaemia, Disturbance in attention, Memory impairment, Amnesia, Cognitive disorder, Mental impairment, Psychomotor skills impaired, Convulsion, Coordination abnormal, Tremor, Lethargy, Hypoaesthesia, Nystagmus, Dysgeusia, Balance disorder, Dysarthria, Intention tremor, Sedation, Vision blurred, Diplopia, Visual disturbance, Vertigo, Tinnitus, Ear pain, Dyspnoea, Epistaxis, Nasal congestion, Rhinorrhoea, Vomiting, Constipation, Abdominal pain, Dyspepsia, Dry mouth, Stomach discomfort, Paraesthesia oral, Gastritis, Abdominal discomfort, Nephrolithiasis, Pollakisuria, Dysuria, Alopecia (hair loss), Rash, Pruritus, Arthralgia, Muscle spasms, Myalgia, Muscle twitching, Muscular weakness, Musculoskeletal chest pain, Anorexia, Decreased appetite, Pyrexia, Asthenia, Irritability, Gait disturbance, Feeling abnormal, Malaise, Hypersensitivity, Bradyphrenia, Insomnia, Expressive language disorder, Anxiety, Confusional state, Disorientation, Aggression, Mood altered, Agitation, Mood swings, Anger, Abnormal behavior, Crystal urine present, Tandem gait test abnormal, White blood cell count decreased, Bradycardia, Sinus bradycardia, Palpitations, Leucopenia, Thrombocytopenia, Lymphadenopathy, Eosinophilia, Depressed level of consciousness, Grand mal convulsion, Visual field defect, Complex partial seizures, Speech disorder, Psychomotor hyperactivity, Syncope, sensory disturbance, Drooling, Hypersomnia, Aphasia, Repetitive speech (stuttering), Hypokinesia, Dyskinesia, Dizziness postural, Poor quality sleep, Burning sensation, Sensory loss, Parosmia, Cerebellar syndrome, Dysaesthesia, Hypogeusia, Stupor, Clumsiness, Aura, Ageusia, Dysgraphia, Dysphasia, Neuropathy peripheral, Presyncope, Dystonia, Formication (the sensation of insects crawling under the skin), Visual acuity reduced, Scotoma, Myopia, Abnormal sensation in eye, Dry eye, Photophobia, Blepharospasm, Lacrimation increased, Photopsia, Mydriasis, Presbyopia, Deafness, Deafness unilateral, Deafness neurosensory, Ear discomfort, Hearing impaired, Dyspnoea exertional, Paranasal sinus hypersecretion, Dysphonia, Pancreatitis, Flatulence, Gastrooesophageal reflux disease, Hypoaesthesia oral gingival bleeding, Abdominal distension, Epigastric discomfort, Abdominal tenderness, Salivary hypersecretion, Oral pain, Breath odour, Glossodynia, Calculus urinary, Urinary incontinence, Haematuria (blood in urine), Incontinence, Micturition urgency, Renal colic, Renal pain, Anhidrosis, Hypoaesthesia facial, Urticaria, Erythema, Pruritus generalized, Rash macular, Skin discolouration, Allergic dermatitis, Swelling face, Joint swelling, Musculoskeletal stiffness, Flank pain, Muscle fatigue, Metabolic acidosis, Hypokalaemia, Increased appetite, Polydipsia, Hypotension, Orthostatic hypotension flushing, Hot flush, Hyperthermia, Thirst, Influenza like illness, Sluggishness, Peripheral coldness, Feeling drunk, Feeling jittery, Learning disability, Erectile dysfunction, Sexual dysfunction, Suicidal ideation, Suicide attempt, Hallucination, Psychotic disorder, Apathy, Lack of spontaneous speech, Sleep disorder, Affect lability, Libido decreased, Restlessness, Crying, Dysphemia, Euphoric mood, Paranoia, Perseveration, Panic attack, Tearfulness, Reading disorder, Initial insomnia, Flat affect, Thinking abnormal, Loss of libido, Listless, Middle insomnia, Distractibility, Early morning awakening, Panic reaction, Elevated mood, Blood bicarbonate decreased, Neutropaenia, Apraxia, Circadian rhythm sleep disorder, Hyperaesthesia, Hyposmia, Anosmia, Essential tremor, Akinesia, Unresponsive to stimuli, Blindness unilateral, Blindness transient, Glaucoma, Accommodation disorder, Altered visual depth perception, Scintillating scotoma, Eyelid edema, Night blindness, Amblyopia, Calculus ureteric, Renal tubular acidosis, Stevens-Johnson syndrome, Erythema multiforme, Skin odour abnormal, Periorbital oedema, Urticaria localized, Limb discomfort, Acidosis hyperchloraemic, Raynaud’s phenomenon, Face edema, Calcinosis, Mania, Anorgasmia, Panic disorder, Disturbance in sexual arousal, Feeling of despair, Orgasm abnormal, Hypomania, Orgasmic sensation decreased.
The FDA Black Box on Topamax
According to the FDA and their listed label update in 2014, Topomax includes a black-box warning that has the following known adverse effects:
- Acute myopia and secondary angle closure glaucoma: Untreated elevated intraocular pressure can lead to permanent visual loss. The primary treatment to reverse symptoms is discontinuation of TOPAMAX as rapidly as possible (5.1)
- Visual field defects: These have been reported independent of elevated intraocular pressure. Consider discontinuation of TOPAMAX (5.2)
- Oligohidrosis and hyperthermia: Monitor decreased sweating and increased body temperature, especially in pediatric patients (5.3)
- Metabolic acidosis: Baseline and periodic measurement of serum bicarbonate is recommended. Consider dose reduction or discontinuation of TOPAMAX if clinically appropriate (5.4)
- Suicidal behavior and ideation: Antiepileptic drugs increase the risk of suicidal behavior or ideation (5.5)
- Cognitive/neuropsychiatric: TOPAMAX may cause cognitive dysfunction. Patients should use caution when operating machinery including automobiles. Depression and mood problems may occur in epilepsy and migraine populations (5.6)
- Fetal Toxicity: TOPAMAX use during pregnancy can cause cleft lip and/or palate (5.7)
- Withdrawal of AEDs: Withdrawal of TOPAMAX should be done gradually (5.8)
- Hyperammonemia and encephalopathy associated with or without concomitant valproic acid use: Patients with inborn errors of metabolism or reduced mitochondrial activity may have an increased risk of hyperammonemia. Measure ammonia if encephalopathic symptoms occur (5.10)
- Kidney stones: Use with other carbonic anhydrase inhibitors, other drugs causing metabolic acidosis, or in patients on a ketogenic diet should be avoided (5.11)
- Hypothermia has been reported with and without hyperammonemia during topiramate treatment with concomitant valproic acid use (5.12) (FDA Topamax Label)
According to the label, Topamax is only indicated for seizures as a secondary medication in support of a primary kind and for migraines and nothing else (not even for diet anymore). Yet, I see people being prescribed this drug for all types of off-label use that are unrelated to either seizures or migraines. The large migraine group I run on Facebook grown to over 4000 migraineurs in the past two years.
Because I have found that Topamax is the #1 prescribed medicine to migraineurs when they join the group in despair and hopelessness, I have decided to designate Topamax also as the #1 medicine discussed on the series titled drugs of shame. This is apt because it affects (and often damages) the neurotransmitters (hormones of the brain) and thereby puts the whole hormonal structure of the body in chaos.
The Problem: Brain Slowing
Topamax may cause brain function slowing. Why? Topamax is a voltage dependent calcium channel blocker (also called voltage-gated calcium channel blocker), which is a key channel for neuron communication via neurotransmitter release. Topamax is systemic, meaning it doesn’t just act on a particular type of neurons but all neurons. This means that neurons that are responsible to organize how the heart beats, how the lungs function, how you blink, and how you digest are all affected by Topamax in a negative way: the neurons cannot release neurotransmitters and so the communication between hormones of the brain and the hormones of the body are broken. Many of the side effects of Topamax are so strong that migraineurs who start Topamax stop within weeks (some on day 3) of initiating this medication. The drawing below shows how voltage dependent calcium channels work and what happens when they cannot work because they are blocked.
Voltage Dependent Calcium Channel Blockers
Figure 1. How Voltage Dependent Calcium Channels Work
In figure 1 you see a simplified neuron on the left and the axons of another neuron on the right. In the synaptic cleft normally neurotransmitters work like a domino effect. One neuron receives a signal from a sensory organ that stimulates the release of neurotransmitters that are specific to the type of stimulus. The neurotransmitters then get to be picked up by the neuron connected to the releasing neuron and pass the signal along. When the signal volume, intensity, frequency reaches a particular threshold, the brain sends a command to the body: wipe nose, for example.
Blocking the voltage dependent calcium channels from firing means that no neurotransmitters can be released and thus no message is passed on to the necessary number of neurons to reach the threshold. Since Topamax is systemic, every function of the body is hampered to some degree.
Neurons have five types of voltage dependent calcium channels based on voltage requirements:
- L-type that directs skeletal muscles, cardiac related muscle cells, endocrine cells, adrenal, etc., associated with contraction, hormone release and synaptic integration (neurons working together)
- P/Q-type that activate neurons and neurotransmitter and hormone release
- N-type works at the nerve terminals similarly to P/Q for neurotransmitter and hormone release
- T-type think of it as the pacemaker of the brain for firing with a particular frequency
- R-type that works with cerebral cells and some neurons
For each of these, the current required is different so fine-tuning is necessary. The calcium channel must go through all stages of voltage levels to be able to perform all five types of actions, as the body requires all of them. Note that when the voltage gated calcium channels are blocked, none of these 5 types of actions can properly function. The body will utilize its reserves to maintain vital functions. People who take Topamax can still breathe and their hearts beat – but they have serious issues, for example, with body cooling, which is a pretty basic, built-in automatic motor function. People who take Topamax overheat and cannot cool themselves. Most interestingly Topamax prevents the very functions a migraine brain needs for relief the most because it blocks those channels that would instruct the brain to cool the body.
In addition, Topamax blocks both voltage dependent sodium-potassium channels. I have written extensively on voltage dependent sodium-potassium channels in previous articles so here I just present a short summary. Voltage dependent (or gated) sodium-potassium channels have the critical function of sodium and potassium exchange in the cell to ensure that proper voltage is created in the cell membrane. Proper voltage is required so that the channels can open and close their gates, nutrients can enter and waste products can leave. Neurons cannot manufacture neurotransmitters without the availability of various minerals, many of which must be able to enter the neuron via voltage gated sodium-potassium channels. When these channels are not able to generate the proper action potential, nothing moves in or out of the neuron. By blocking voltage dependent channels, the high voltage needed to release the neurotransmitters is dulled as well.
Topamax robs the brain from its most important vital roles: making neurotransmitters that transmit messages and regulate brain and important autonomic body functions such as, cooling the body when it is too hot, maintaining and appropriate heart beat, or simply making a decision1. I think, Topamax is one of the more dangerous drugs on the market. From what I can gather from the research and my work with migraineurs, Topamax does not appear to work for pain. It only slows brain function. I would not be surprised to see researchers soon showing a connection between Topamax use and dementia. Until then, proceed with caution.
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1 Sommer, B. R., Mitchell, E. L. & Wroolie, T. E. Topiramate: Effects on cognition in patients with epilepsy, migraine headache and obesity. Therapeutic Advances in Neurological Disorders 6, 211-227, doi:10.1177/1756285613481257 (2013).
2 Nelles, G. et al. Prevention of episodic migraines with topiramate: results from a non-interventional study in a general practice setting. The Journal of Headache and Pain 11, 33-44, doi:10.1007/s10194-009-0163-x (2010).
3 Navarrete, F., Pérez-Ortiz, J. M. & Manzanares, J. Pregabalin- and topiramate-mediated regulation of cognitive and motor impulsivity in DBA/2 mice. British Journal of Pharmacology 167, 183-195, doi:10.1111/j.1476-5381.2012.01981.x (2012).
4 Garvey, W. T. Phentermine and topiramate extended-release: a new treatment for obesity and its role in a complications-centric approach to obesity medical management. Expert Opinion on Drug Safety 12, 741-756, doi:10.1517/14740338.2013.806481 (2013).
5 Geddes, J. R. & Miklowitz, D. J. Treatment of bipolar disorder. Lancet 381, 10.1016/S0140-6736(1013)60857-60850, doi:10.1016/S0140-6736(13)60857-0 (2013).
6 Campayo, J. G. et al. Effectiveness of topiramate for tobacco dependence in patients with depression; a randomised, controlled trial. BMC Family Practice 9, 28-28, doi:10.1186/1471-2296-9-28 (2008).
7 Johnson, B. A. & Ait-Daoud, N. Topiramate in the New Generations of Drugs: Efficacy in the Treatment of Alcoholic Patients. Current pharmaceutical design 16, 2103-2112 (2010).
8 Pereira, A. G., Michael J.; Gross, Robert A.; Posner, Kelly; Dworkin, Robert H. Suicidality associated with anti-epileptic drugs: implications for the treatment of neuropathic pain and fibromyalgia. Pain 154, 345-349 (2013).
This article was first published on September 10, 2015.
Hi, I have IIH (Idiopathic Intercranial Hypertension). One of the major symptoms is severe migraine. I’m on Acetazolomide 1000mg daily to reduce my CSF pressure, which has really helped. I had evidence of Papilladema but I lost 19kg/42lbs and that is no longer present. I attempted to wean off Acetazolomide to see if the IIH had completely gone but 2 days into a reduced dose I ended up in agony again and have since resumed my medication again since the IIH is still present. I have been getting migraines again lately and I know that my neurologist will suggest Topiramate next. I’m now looking for alternative solutions because i am sick of being exhausted and in pain. I’m sick of pain killers and expensive migraine wafers that are minimally effective, if at all.
My question is, do you have any helpful info on how to reduce IIH migraines without medication?
Also, are there any alternative ways to reduce my body’s production of CSF fluid? Since that is in fact the cause of the migraines.
I am very sorry about your IIH. Indeed, IIH comes with very big headaches–not migraines though. Migraine is a genetic condition that need not even come with a headache, so having IIH with a big headache doesn’t make that headache into a migraine. This distinction is important, since migraine is caused by an electrolyte imbalance and not by increased pressure in the head. IIH has a “genetic predisposition” profile, but it is invoked by lifestyle and environmental factors, whereas migraine is 100% purely genetic.
If your IIH was not caused by Chiari malformation or similar birth defect, and it was not caused by head injury, then it is said to be caused by lifestyle. Some of the conditions that can initiate IIH is excess weight and, in general, eating foods high in carbohydrates because they cause edema. It is generated by your own body, which is making excess spinal fluid for some reason.
I don’t recommend that you quit your medication(s) since that may cause a “rebound” edema inside your brain, potentially even placing your life at risk from the pressure. To my understanding there are no medications that can remove the pain from a built-up pressure. Your skull is limiting how much its contents can be, and the extra fluid is pressing on your brain. The problem is not just the pain caused by the pressure but the pressure itself can cause brain damage.
For a non-medicinal approach you can have your spinal fluid drained–I mean it is medical but without medicines–and if you have too much fluid buildup, they can place a shunt into your brain to drain the fluid out of your brain. Also, the ketogenic diet can help IIH, I suspect it helps because it is low in carbohydrates and therefore reduces edema.
As for changing how much fluid your spine makes: unfortunately with today’s technology we cannot control that, except with diet, which may reduce the production of fluids. There are several studies discussing how the state of ketosis and ketones themselves can modify gene expression. Meaning that in some cases–and I don’t know if IIH is one of those–the genetic condition can be reversed or stopped by ketones.
I hope you are able to find a solution that will work for you.
Best wishes to you,
Topamax ruined my life for nearly 2 years. I was diagnosed with epilepsy in April of 2018 after having a 7 minute grand mal seizure. At first I was given Keppra and for 3 years and 17 seizures later (with horrible CA treatment I may add) I finally had the “big one” and seized in the shower and nearly drown. I got bacterial pneumonia and was almost declared dead. I went into status epilepticus for 2 hours and woke up screaming in an MRI machine.
They gave me topamax that night, boy did my life go into a black hole after that.
The first 6 weeks were so horrible I wanted to die. I couldn’t talk right, I couldn’t think right, and the burning tingling feeling in my feet were so bad I couldn’t walk type or hold a pen. I would think one word and another word would come out of my mouth. I slurred my words so bad I stopped talking. I was a fast talker but I slowly turned into a slow talker. I stuttered and my lisp from childhood came back. I wanted to die. Thoughts of suicide were rampant. Food smelled like dirt or rotten meat and when something did smell good or taste good I’d binge on it. I wound up gaining weight before losing it because of the binge eating. Then there would be days where I’d forget to eat entirely and wonder why I was so exhausted. Water tasted like dirty slate water so keeping hydrated was hard. Soda drinks/fizzy drink tasted flat. Veggies tasted bland and like dirt. After nearly two years of being on it I had a breakdown. We passed a BBQ place and my boyfriend said it sounded good. All I could envision was a rotten dead animal on the side of the road with green goo coming out of it and the smell of rotten meat. It was so bad I couldn’t go into the meat section of the store to get groceries. For hours this was the recurring thought in my head. The next week I kept thinking something was in my back trying to cut my kidneys. I can’t really explain it better than this but imagine the snip sound you hear of sharp scissors on string and from trying to upkeep with water and knowing the kidney side effects of this medication, mixed with the disassociation, I thought someone was trying to snip my kidneys. The next week it felt like someone was peeling my skin off of me and I just broke down and cried my eyes out. I had to go for a walk just to get my heart rate up and get my blood moving to get the thought out of my head.
My anxiety and panic were so bad I had to start work early before I took the medication just to get some work rolling so I could have downtime to work through my anxiety and panic attacks. I’d freeze up and not be able to function.
Finally I got to see my new neurologist and she even said “I can’t believe you’ve mentally survived on this medication for 2 years, most of my patients can’t do 2 months”. I’m weening off it now and on lamictal and I think I’m having an allergic reaction coming off the topamax with the lower dose and different manufacturer but we will see within the next week.
I feel so much better being off it and after speaking to many of my friends they said they couldn’t last more than a few months on it.
Wow what a nightmare of a story! I am glad you now have a neurologist who seems more caring and knowledgeable. I hope your new medication will be helping you.
Please help me. I am suffering from memory loss and cognitive decline from 10years after taking Topamax for 8months.
And its side effects are still there even after 10years of stopping it. Please help me if you have any idea how to reverse the effects of topamax
Thanks for reaching out. After so many years, I am not sure how much improvements can be done, but you will get the best results if you “eat for your brain” so to speak.
What does it mean to eat for your brain? You need to eat those foods that your brain is made from and what it uses for its functions.
The brain is 85% saturated fat and cholesterol. That’s right! Rather than listening to the low-fat and eat more veggies talks, eat high fat and much less plants. Focus your diet on animal products.
In addition, if I were in your shoes, I would supplement TTFD B1, such as Allithiamine or Lipothiamine (only these two types of TTFD B1 work), take high EPA/DHA fish oil–your brain needs 900 mg DHA a day! So look for fish oil with high DHA. Make sure you are well hydrated and hydration is water with a small amount of salt–like a dash from a small salt shaker. And I’d eat lots of meat!
In fact, this is how I eat even without Topamax damage. It’s the healthy human diet and if anything can help the human brain recover from damage, it is eating the real original human way.
If you would like to join my migraine group on Facebook, we admit non-migraineurs as well who wish to heal. You will find my group here and feel free to join.
I was in status epilepticus for 73 hours after being resuscitated from a sudden cardiac arrest.
I’m a Canadian citizen still trying to be heard how it got to that.
Wow Nathalie, you could have died in that one. I ma glad you survived. Was this from taking a Topamax?
I wish you well,
This is a great article.
I found it when trying to find information about withdrawal.
I’m 32, I have general epilepsy and I’ve been on Topamax for 3 years now, brought up to 350mg a day in my first year, but started tapering down about 8 months ago. My neurologist added it to my Lamotrigine. At first it was great because I lost lots of weight (looking good is desirable for a young lady)! And it gave me an aversion to alcohol at first, which helped with my struggle with addiction. But I started noticing that talking was difficult, as though I had a speech impediment… I had memory problems, anxiety, fatigue. It’s hard to describe the confusion, but i really felt as though i had dementia. I started tapering down to 25mg a month at first, then every three weeks. I’m currently at 150mg a day, and withdrawal is awful. I was going seizure-free for months, and I’m having more seizures now. Moreover, i have to warn my friends and husband to stay away when im going to taper down again. I become a monster. And I’ve put on so much weight around my stomach. Even though I’m sober, on a very controlled diet (veggies, lean protein, berries), and do cardio and weights… and my job is commercial wallpaper installation, I’m very active! So I should be losing weight. My doctor did blood tests and ultrasounds and nothing is wrong. Could Topamax have affected my general metabolism in some way? My body and weight management has never been like this. And to avoid seizures from “lack of Topamax”, I feel so helpless. I tapered down another 25mg two days ago, bringing me to 150mg, and had a tonic-clonic seizure 24hrs later. My neurologist wants to prescribe more meds but I’m just sick of meds. Can the brain heal? Return to its pre-Topamax state?
A lot of websites, articles, and people say “talk to your doctor”. Easier said than done… My neurologist is a huge fan of T-max! However, I would love your feedback.
Thanks for writing about your story. I understand your struggles; I see many people struggling similarly.
Let me add an important point to what you suggested. You wrote: “…I’m very active! So I should be losing weight…” A few years ago I had the same question about the many gardeners I see–I live in Southern California where gardeners are always out cutting trees, trimming this and that. moving grass, and they go from house to house, doing such heavy physical work all day long. Yet when I see them, they are all overweight. And I asked the same question you just did.
And then I started thinking: why would activity help you lose weight? Calories (in the food you eat) have no relation to the weight you are. What you are referring to is what has become known as the CICO (calories in equal calories out), but which is incorrect. I recommend you read this article for a good (albeit lengthy) explanation. The way Calories are defined is associated with the amount of heat released in certain substances burning in fire in a 100% oxygen chamber, at sea level in a completely isolated sealed “closed” container. Your body isn’t burning anything in fire, you are not in a 100% oxygen environment, and we are not in a closed space–the universe is not a closed space. So the laws of thermodynamics your sentence was based on is invalid for humans and is not applicable how we lose weight. In fact, being physically active, like you are, may make you eat more. But even eating more or less has no direct relation to your weight.
In a later article I will examine this issue better. But here I just wanted to point out that just because you exercise or lead a very physically active life, it does not follow that you will lose weight.
In terms of Topamax and seizures: are you aware that for centuries (in fact starting in biblical times) seizures were treated by ketosis.
A very large percent of people with seizures at all ages are placed on the ketogenic diet–this is not the common everyday ketogenic diet but a therapeutic one with very high fat–are seizure and medicine free.
I recommend you contact the Charlie Foundation and ask for referral to an adult nutritional seizure specialist.
It works for over 80% of the people starting therapeutic ketosis for seizures and they can be medicine free. So try it.
Best wishes to you,
Angela, I am finding these conversations so interesting, I am trying to also titrate off of Topiramate. I have been on it in combination with Oxcarbazepine for Years. OX for 10, Top for 5. I would like to reduce both. I have developed “buzzing” and “pulsing zapping” to the right of my left eye up into my brain area over the same side. I have Trigeminal Neuralgia on my Right Side and ON. Everytime I try to go down just 2 days a week by 50 mg. on the OX I develop terrible Jekyll and Hyde Syndrome brain pain. I tried to drop the Top down by only 25mg 1 x a week and was reeling in a black hole from that . I don’t understand some of these other responses -“I only have tingling in my hands” …. I am so concerned I will not be able to remove myself of one or both of these meds. TN pain is a bit different than those you have discussed here. But I am looking for MED free answers. No Neurologist or Pain Management Doc has provided direction.
Everyone has different responses to starting or tapering off of serious medications. How you manage greatly depends on genetics and the type of health condition in addition to general health. Both of these drugs block sodium channels and Topamax also block calcium channels. Sodium channels are the most important channels in the brain because voltage is generated in the neuron by sodium entering the cells. If the sodium channels are blocked, the neurons are unable to generate action potential, and the neurons cannot communicate. The calcium channels are responsible for releasing the neurotransmitters from the neurons to have neurons communicate. When they are blocked, there is no neurotransmitter release. In effect the brain is prevented from working. And it is degenerative because those neurons that cannot communicate are trimmed and disconnected from other neurons, reducing what your brain is able to do, blocking memory, etc.
With all this said and done, this may be desirable over having seizures every minute of the day. I am not sure for what condition you are taking these two medications, because although they are primarily used for seizures, they are also prescribed for migraine, weight loss, depression, and god knows what. If you have seizures and would like to taper off these drugs, please discuss with your doctor a nutritional alternative, which is a therapeutic ketogenic diet. It is a very successful way of treating most people but not all. And you need medical supervision.
If your concern is migraines, please join my migraine group and we can help you change your lifestyle so you can become migraine free. And once you are migraine free, there will be no need for these medications and with your doctor’s help, you can taper off very slowly.
It is not possible for you to come off of these medications without a lifestyle change.
I hope you find this helpful,
I have been taking Topamax for an off-label purpose for 2+ years now, and out of the two DOZEN medications prescribed to me over fifteen years, it has produced the most-extremely satisfactory results, including stabilized mood, weight, energy levels, and emotional regulation, with minimal side effects. Yes, I drink more water now and take breaks at work to keep from getting overheated in the sun. No, I do not struggle with migraines.
Every medical case is different, especially involving the complex biochemistry of the brain. I have my own hypotheses about how and why the brain gets dysregulated and why tailored chemical interventions are sometimes necessary from person to person. We all have our own medical journeys and fascinations with our own cases, and I found your material about the slowing of neurotransmitters to be very helpful.
I would say, please especially be careful about suggesting to bipolar people–who are notorious for finding any excuse to bail on their prescribed medications on any whim, and who sometimes enter into extremely suggestible and excitable states–that their clinically-licensed doctors are unqualified, or shame them for relying on widely-used medications, or suggest that if they just radically changed everything about their lifestyles, their life-long medical problems would evaporate like magic. Advice like this can produce really dangerous personal situations, with chaotic consequences that impact children and spouses in unpredictable and harmful ways.
Best of luck with your book.
I am very happy that Topamax is working for you. It is obviously a good medicine for some people for some health conditions, which are quite limited unfortunately.
I don’t know what illness you have, so I cannot comment on the benefits of nutrition, but I can make a general statement for people with bipolar and various depression conditions!
While clinical trials aren’t likely to be forthcoming any time soon–probably not in this Century because the whole nutritional system is set up to basically “encourage” (I am putting it nicely) illness that is “managed” rather than cured, many people have found on their own n=1 experiments that nutrition works better than medicines.
Rather than belaboring the subject all over again, since I have very many articles discussing nutrition, the various completely misanalysed (again, using kind words) nutritional studies, including the very first one by Ancel Keys, which got us the lovely horrible dietary guideline pyramid, setting the stage for what is now a global epidemic of obesity and metabolic disease (cardiovascular disease is part of metabolic disease), I link you here to my other blog where I discuss these articles in detail at an academic level.
I am also including here a link to a very famous person, whose life had been living nightmare from a very young age, including having severe autoimmune arthritis (hips and ankles replaced by age 16) and also suffered from bipolar, depression, anxiety, and a host of other conditions, taking a ton of medications, including a handful of psychotropics, and got rid of all of her (and her father’s condition, suffering from the same psychological conditions) diseases by simply eating nothing else but red meat, tallow, salt, and water for the past 5 years.
I recommend that rather than jumping into the same conclusion that most doctors do based on pharmaceutical manipulations, you spend a little time reading a broader base than what you are used to. Add some videos and podcasts as well, and who knows, you may also find yourself healthy without having to take any medications. I know I have cured all my ailments, including GAD and panic disorder and am not taking any medication, doing great! It’s hard to accept that we are what we eat… but it’s true.
I was prescribed 50mg Topamax August 2022 for PTSD and Bipolar. Since then I have experienced significant hair loss, days of insomnia followed by days unable to get out of bed. My brain is constantly spinning. I am c computer programmer for a large defense corporation so this is not my norm. And, yes this has effected me professionally significantly. I have developed a very unhealthy obsession with parasite infection. I just recently went to the ER proclaiming I had scabies and ultimately left with and eczema diagnosis. I do not want to jump to its the meds fault, it may be that my condition is just progressing.
It is possible that your condition is progressing but wouldn’t it be nice to find out if that was the case? Topamax is really not a drug to help PTSD and bipolar. In fact, this is the first time I hear of it being prescribed for these conditions. Please consider visiting your doctor and request a medication more specifically tailored to your health conditions.
So grateful I found your article. I began Topiramate two months ago and was thrilled it seemed to be working. I have had Relapse Remit Multiple Sclerosis for 43 years. I tried the usual meds and the side effects were worse than the disease. I deal with it on my own. Meditation. Acupuncture. Yoga. Nutrition. My hearing has become so sensitive I have to wear ear plugs just to survive. My head explodes from the slightest loud noise. My neurologist said the condition was migraine. I agreed to try Topiramate. I am two months in and have had some relief. Still wearing ear plugs but more relaxed since the startle reflex is less pronounced. The downside is episodes of tachycardia mid morning almost every morning. No caffeine, no stimulants, no other medications, no herbs, no essential oils, nothing to cause the tachycardia. The episodes last a couple hours. Cardiologists have no answers. No functional cardiac issues. So I am gradually cutting back to 25 mg. once a day from the current 50 mg. a day. Cannot find information about cardiac issues except in conjunction with metabolic acidosis. Any ideas?
Dear Dr. Stuart,
Yes, I have a lot of information that may help you. Let me grab each problem as you have listed one by one.
1) MS: are you familiar with Dr. Terry Wahls? I recommend you watch this YouTube video that was originally on TEDx.
She literally reversed her MS by removing all sugars, starches, processed foods, grains, seed and vegetable oils from her diet. She is not yet 1000% becuase she insists on eating a variety of plants, and plants are full of antinutrients that block nutrient absorption. Many researchers discuss openly that if she would only be willing to give up those plants and move to a complete carnivore diet (only animal products) she would be 100% cured. As you know, MS is an autoimmune disease, and an “autoimmune disease” is not a disease but a condition in which the immune system is trying so hard to get rid of the things one eats that it is starting to destroy self. It is preventable and reversible.
2) Migraine is a genetically different brain that is extremely intolerant of carbohydrates and is anatomically different as well. I wrote up a short explanation of what migraine is on my blog that I recommend you read. This particular short article I wrote for doctors. I also teach continuing education to healthcare professional by some online institutions–I will include the links so you can take them if you are interested. They are not free but all funds go to the institutes presenting them; I don’t get paid. In addition, I have dozens of YouTube and podcast interviews, many by doctors or other healthcare professionals interviewing me on migraines. I include links to some of those as well.
3) The tachycardia: I suspect you are not hydrating properly. Underhydration (even if you drink enough “fluids” but not water and not salted water, in particular) causes tachycardia and often also hypertension. Contrary to medical practice, salt doesn’t actually increase blood pressure, unless it is mixed with the standard American diet (SAD) or a plant-based diet. It increases blood volume temporarily–the kidneys clear the excess salt from the blood within 12-15 minutes depending on how well your kidneys function–and once you understand migraine better, you will see that migraineurs need a lot more salt than non-migraineurs. You will find the link to my book below as well as a link to my free Facebook group where we help thousands of migraineurs learn how to prevent their migraines without a drop of medicines.
Here are a ton of links for you to read, watch, and listen to:
You are invited to join my free Facebook migraine group https://www.facebook.com/groups/MigraineSufferers
Read my book: https://www.amazon.com/Fighting-Migraine-Epidemic-Migraines-Medicines-ebook/dp/B076BZG2V3
Here you see hundreds of testimonials taken from my Facebook group: https://stantonmigraineprotocol.com/testimonials/
The following links are lectures I gave specifically for healthcare providers (these are for a fee by the respective institutions and offer CED credit) and free videos and podcast interviews that you may also find informative:
Classes Taught–these are for CED credit and the organizations charge a fee:
Masterclass on Migraines: Neurological Conditions: Migraines, released September 21, 2022 offered for CED credit, sign up here: https://courses.nutrition-network.org/ and you will find the course here: https://community.nutrition-network.org/c/new-content/masterclass-by-dr-angela-stanton-neurological-conditions-migraines
Nutrition Network, 3 lecture hours on migraine plus an hour of personal interview. These classes are for healthcare providers, and offer continuing education credit: https://nutrition-network.org/neurology/ This class requires payment to the organization of Nutrition Network.
You can see an introduction here: “Angela Stanton, PhD & Jayne Bullen – Neurology” https://www.youtube.com/watch?v=o8wJFImo0XA
World Nutrition Summit 2022: Migraine Treatment and Prevention by the Stanton Migraine Protocol® https://courses.nutrition-network.org/p/wns2022
Nutrition Coalition in the UK: The Stanton Migraine Protocol®: A Masterclass https://nutritioncollective.co.uk/courses/the-stanton-migraine-protocol/
Free Videos for the General Public:
Kick Sugar Summit interview by Florence Christophers: https://www.florencechristophers.com/deliveries/LYnFc6PAlXvieDCh?play=asset_6572794
MIGRAINES AND KETO – BENEFIT OR LIABILITY? Dr. Robert Cywes MD, PhD interviews Angela A Stanton PhD, part 1: https://www.youtube.com/watch?v=tDH0udMBPXA
MIGRAINES AND KETO – BENEFIT OR LIABILITY? Dr. Robert Cywes MD, PhD interviews Angela A Stanton PhD, part 2: https://www.youtube.com/watch?v=mW8wjgYHTwE
A Complete Guide To Migraines with Angela Stanton, Ph.D. on Boundless Body Radio! https://www.youtube.com/watch?v=ke991DgOukg
The Low Carb Lifestyle Podcast by Tracey McBeath https://www.youtube.com/watch?v=RBD0VZoEhYg
“Everything you need to know about Migraines.| Angela Stanton PhD | part 1” with Astrid Naranjo Accredited RD & Nutritionist https://www.youtube.com/watch?v=jHIo44QroF4&t
“The Stanton protocol for dealing with migraines| ft. Angela Stanton |PART 2” with Astrid Naranjo Accredited RD & Nutritionist https://www.youtube.com/watch?v=-jNt5J_UABg&lc=
“dLife.in Podcast: Angela Stanton on Migraines and Low Carb LCHF & Keto Diet” https://www.youtube.com/watch?v=w4To7hzK7FA
“LLVLC Podcast with host Jimmy Moore: Angela Stanton Takes Us To School On Migraines, Hormones, & Keto Carnivore Diets” https://www.youtube.com/watch?v=SWeS3X8gbG0
“Stop Migraines On Demand”–Dr. Angela A. Stanton with Dr. Pete’s Keto Club: https://www.youtube.com/watch?v=WEc6oAOfM7c
“MeatRx Carnivore Community Meeting with Angela Stanton, PHD” with Dr. Shawn Baker: https://www.youtube.com/watch?v=S3Y9I9YdRz8&feature=youtu.be
Nutrition with Judy (Part 1): https://www.youtube.com/watch?v=TdV7_-rvWoE&t
Nutrition with Judy (part 2): https://www.youtube.com/watch?v=5pvCsrb2k2A&t
Dr. Shawn Baker and Zach Bitter: Episode 109: Angela Stanton – Is Your Diet Giving You Migraines? https://youtu.be/Y-BcsGllgmU
The Ketogenic Girl: Keto & Carnivore: Electrolytes, Water Retention & More with Dr. Angela Stanton https://www.youtube.com/watch?v=eZHNRlS6qj4
MeatRx with Dr. Shawn Baker: Dr Angela Stanton – MeatRx Community VIP https://www.youtube.com/watch?v=u6ppkOujM00&t
The Ketogenic Girl #2: https://www.youtube.com/watch?v=0zVqWX9-RHw
Biohackers Lab: Natural Migraine Relief (Stanton Migraine Protocol Review) • Dr Angela Stanton PhD https://youtu.be/AjyTLCk73gM
Channelopathy: The Breakthrough Scientific Discovery You Have Never Heard About with Dr. Angela Stanon: https://podcasts.apple.com/us/podcast/118-channelopathy-the-breakthrough-scientific/id1544110832?i=1000580733189 With Dr Katinka at the Spero Clinic
Fitness Confidential with Vinnie Tortorich: https://open.spotify.com/episode/2LAlREgTZyXMxeIt0tu9c9
Podcast with Vanessa Spina on protein:
Boundless Body Radio: https://www.myboundlessbody.com/podcast-1/episode/4bd47d19/fighting-the-migraine-epidemic-with-dr-angela-stanton-070
by Carnivore Cast:Dr. Angela Stanton – Migraine Relief, Electrolytes, Keto/Glucose Brain Metabolism: https://www.youtube.com/watch?v=9EHUUOC8zVk&lc
Bisu: Preventing electrolyte imbalances – how to beat migraines, keto flu & Bloat – Angela Stanton, Ph.D. https://podcasts.apple.com/us/podcast/preventing-electrolyte-imbalances-how-to-beat-migraines/id1513190058?i=1000484946679
THE MORNING SHOW with Patrick Timpone: Angela A. Stanton PhD: https://oneradionetwork.com/health/angela-stanton-phd-author-fighting-migraine-epidemic-treat-prevent-migraines-without-medicines-insiders-view-february-2-2017/
Articles based on Interviews:
Hoofdpijnet (Netherland Migraine Association): “Treating and Preventing Migraines without Drugs According to Dr. Angela Stanton: ‘More Salt, Less Sugar, Enough Water”: https://allesoverhoofdpijn.nl/migraine-behandelen-en-voorkomen-zonder-medicijnen-volgens-dr-angela-stanton-meer-zout-minder-suiker-voldoende-water/
The Daily Mail (UK): “Can you cure migraines by eating more SALT? That’s the controversial suggestion by one US neuroscientist – but what do leading experts think?” Can you cure migraines by eating more SALT? That’s the controversial suggestion by one US neuroscientist – but what do leading experts think? https://www.dailymail.co.uk/health/article-6008119/Can-cure-migraines-eating-SALT.html
Thank you kindly for the wonderful information. You certainly went far above and beyond my wildest expectations. I shall begin my education and hopefully be able to pass this information on to others. Again, thank you.
I went on this medication for migraines in early 2019, taking around 50mg, then up to 75mg for a while, then down to 50mg, 25mg before stopping altogether in November of 2019. I can cite these dates fairly accurately because I mentioned it in my journal occasionally. I was getting zombified there for a while and wasn’t warned about the side effects, especially the aphasia. I love to read, but while I was on it I read one book in that entire 10~ months stretch. After I went off it the migraines mostly stayed away, although they do crop up from time to time. But the worst thing is that even all these years later I’m still experiencing some aphasia, mostly during conversations, or when I’m writing something and wanting to use a word that’s maybe not especially common.
I have seen some people report they were able to get some cognitive function back with taking L-Tyrosine, but I have no idea if that’s true. The only thing I’m really thankful for is that I got off it before it wrecked my physical health as well. I would say my emotions are still pretty flattened out by it too, it’s like it cut out the highs and lows, but considering how depressed I was sometimes, maybe that’s a blessing in disguise.
I am happy to hear that you came off this medication and doing alright, albeit with some damage. I don’t know if L-Tyrosine is any good for recovering your brain connections–those are the ones lost by taking Topamax–but there are other ways to regain your cognitive functions. The most important way is to “eat for your brain” so that it can recover. There are some things that popping a pill (even if that’s just a supplement) is not the best solution.
Let me explain a bit about migraine and also Topamax and connect the dots for you. Migraine is a condition in which the sensory neurons (eyes, nose, ears, touch, taste) are enhanced, by having more neuronal connections. This is very well known and is published in many academic literature. What this means is that these sensory neurons work harder, release more neuropeptides, generate more voltage for these, and so need more sodium–sodium is what generates the voltage. There are many factors in migraineurs why there is not enough sodium in the brain, with 2 very important factors:
1) In migraine brain, the voltage gated ionic channels (the ones generating the voltage) are mutated
2) When glucose (from eating carbs) enters the cell, glucose removes both sodium and water from the cell. So as you eat carbs, you reduce sodium in your brain.
Understanding this, if you stop eating carbs and increase salt, your migraines will be prevented. You can join my Facebook migraine group to learn more and we can help you apply our methods (all free) here.
In terms of what Topamax does and why your brain is still not back to “normal” is that it blocks the voltage gated ionic channels, preventing your neurons from working, which then leads to the trimming of the connections between the sensory neurons (this is why you now don’t have migraines!), which is basically brain damage–it is brain degenerative.
To rebuild your brain to its best, you need to eat the foods that support your brain. The human brain–the solid parts–is 85% fat and cholesterol, the rest is protein (understand animal protein). There are no carbs in the brain and the brain doesn’t need any carbs either. To help your brain to recover to as good as it can, you need to eat an animal-based diet of animal fats, animal proteins (meat, fish, poultry, eggs, dairy, seafood, etc.,), and if you must eat any carbs, make it non-starchy leafy or cruciferous veggies. Drop all other kinds of foods, especially sweeteners, grains, seed/vegetable oils, processed foods, and junk foods.
Best wishes to your full recovery,
I am so relieved to have found you! Earlier this year I had a hysterectomy and the drastic change in hormones, mixed with my anti-psychotics, and my EDNOS created the perfect environment for dramatic weight gain. My family doctor deemed my heart healthy enough to handle the Topamax and I quickly lost 20 pounds. However, I am also slowly losing my grades and my marriage. I am failing my law classes when I am used to maintaining a 3.96 GPA and I am constantly thinking of leaving my husband of almost 15 years. I honestly felt like I was losing my mind. I can trace all it back to the time I started to the Topamax and yet on social media I could only find positive reviews. Thank you so much for writing these articles! You have saved my life!
I am glad you bumped into this article as well! 🙂 I hope that you are now back with your family and are returning to your studies as well with success.
I encourage you to search social media for ways to lose weight without medications. It is quite well known by now that millions of people are on the ketogenic diet or the carnivore diet and not only are they losing all excess weight, they also regain their health in every which way–this includes me as well. I also encourage you to look into hormone replacement therapies, such as supplemental estrogen after your hysterectomy.
Best wishes to you,
I took this years ago. At the time I was happily married with an 18 month old and a job I enjoyed. I did suffer from migraines. After 2 months on this, I hated my job and was ready to take my daughter and leave my husband because I couldn’t stand him. Fortunately I realized it was this drug and stopped taking it before it wrecked my life.
KC, I hope you have found the nutritional alternative to medicines. Please join my free Facebook migraine group to learn what to do and how to become migraine and medicine free.
Hello Dr. Stanton,
First I want to thank you for your blog. I think it’s doing an important service to those of us that have been prescribed this drug. Now to my issue. To be frank, I very, very worried about my mental state currently. I was prescribed Topiramate about four weeks ago for binge eating disorder, 25 mg/day. I began the first week at this dosage, but like the reckless idiot I normally am (I’m low-impulse control, BPD as well), I didn’t see any changes and upped the daily dose myself, first to 50 then about 100 mg by the end of the first week. Severe anxiety and panic ensued at which point at went back to the 25 mg/day along with 50 mg of Bupropion. The rest of my stack was relatively routine (synthroid, propecia, glucosamine chondritin, calcium, occasional melatonin @ 3 mg). I tried upping the dose later in the second week once again, but got the same side effects and quit cold turkey (yes, without consulting my doctor who’s really just a nurse practitioner w/ the VA). Now I’m trying to detox the best as best I can.
The first week off it were OK. But now, around ten days after discontinuing it the cognitive issues seem unbearable. Memory loss, inability to recall anything I used to, dumb-ness in conversation, difficulty concentrating on higher-level tasks, tingling in hands when I use a mouse, psychomotor problems (it’s a very discouraging thing to not be able to type AND spell like I used to), brain fog like never before. The worst is the lack of recall. I used to be able to remember very obscure details about things, but now I can’t think of it right away and sometimes not at all. My question to you is do you think that I have permanent brain damage? Reading your site and some others is not so encouraging, but I can’t think the time I was one it, or even the dose and uneven taking of it could be so problematic. Am I doomed? Is there any way back to what I once was? I couldn’t any side effects to any drug could be this debilitating.
Thank you for reaching out. First, let me say this: NEVER GIVE UP! It’s completely outside of my scope to accept giving up in anything, ever. So keep working at it will help. There is no guarantee but if you do most of what I would do, there is a good chance of some recovery and perhaps complete recovery. However, it will take a tremendous strength on your part.
In looking at the medications you listed, I can see that you are eating an unhealthy diet—meaning the way you eat is unhealthy for you. It may be completely fine for another person, but not for you. I don’t know how old you are, but having to take a thyroid medication, a medication for thinning hair, glucosamine chondroitin likely for arthritis, calcium to prevent bone loss, melatonin @ 3 mg for sleep (3 mg is VERRY large, it is about 300 times the size the body needs, bupropion that is a norepinephrine–dopamine reuptake inhibitor used in many conditions, and also topiramate that is a voltage gated calcium and voltage gated sodium channel blocker without you having seizures, I am thinking the way you eat contains a lot of grains, veggies of all sorts, lots of starches like potatoes, rice, quinoa, legumes, and similar, processed foods and sweets. While there may be some people eating this way won’t have trouble with their health.
I think the binge eating is a symptom of the carbohydrate addiction and it is the wrong thing that is being treated. So let me explain what I think you are going through and what I woudl do if I were you.
What is happening to you:
The whole world is pushing the eating of more and more plants–plants are carbohydrates and carbs are sugar only for our body and there is not much nutrition in them–the much carbs create a couple of generations of sick people who are completely addicted to carbohydrates so they can’t stop them but they damage their bodies. Here are a few articles about what carb addiction is and why: here, here, and here. In my opinion, based on the medications you are taking, you are suffering from carbohydrate addiction, and so the medications you are taking to reduce your binge eating won’t help. Binge eating is caused by what you are eating, so to change your behavior, you may want to consider changing what you are eating.
Many people by now have discovered the connection of eating too much carbs and also processed foods, which includes all grains, all precooked, canned, or boxed foods, and eating disorders. In addition, most people end up getting the kind of conditions you have because so many take the same medications you listed–except it appears you don’t yet have heartburn and/or constipation, since you didn’t mention taking medications for these. But if you aren’t yet taking them, they are already waiting for you. And that’s because the foods you eat aren’t good for you or for most other people, for that matter.
I had similar health conditions to you, with diabetes, and what I did was amazingly difficult but I have been completely medication and disease free for over 8 years, diabetes, arthritis, allergies, asthma, neuropathy, stomach issues, IBS, psoriasis, etc., all reversed and am medication free. The trick: I changed what I ate by quitting all sugars and other sweeteners, even zero calories sweeteners went into the trash, quit all grains (this was hard because they are loaded with morphine-like substances that release and cause addiction), quit all starches (this was hard because all my comfort foods went out the window), all processed foods, all vegetable and seed oils were trashed and all juices and sweet fruits also went to the trash. Later I also quit all vegetables completely and just retained a few fruits types that I eat.
The foods I started eating: all animal products, dairy, poultry, eggs, fish, seafood, only animal fats. Over time I increased these foods and for 6-8 months I went on the carnivore diet (CD) in which I ate zero plant products at all. None. It was the best time of my life in terms of healing everything, but I returned to eating also some fruits for the fun of it. Today my diet is 90-95% animal products and 5-10% fruits.
Now, in terms of the recovery of your brain power: once you quit eating all carbs and you are eating only heavy duty animal products, you will stop craving carbohydrates. Your insulin will lower so you won’t feel hunger either. At this time you can start therapeutic fasting! Fasting for 1-2 days (just take salt and water and your medicines and vitamins) once a month, for example, initiates a special autophagy, during which your body fixes or replaces damaged cells and mitochondria. While brain cells don’t ever get replaced, the mitochondria in them do and also the connections between cells can renew. If the connections renewed, your memory will return. That is your goal.
But: if you try this method, be aware that it is going to be very hard because of carb addiction and because all your friends and family will have an unchanged lifestyle and that may trap you back into the circle of trouble with carbohydrates. So be prepared. It is possible to help yourself but it requires a complete lifestyle change.
Good luck to you,
Thank you for the prompt and comprehensive reply,
And you are correct in your supposition: I have been very bad with my diet and eating habits, so much so that I normally never tell anyone the true nature of it. I’ve been binge eating, usually once to twice per week, now for at least ten years. Not just a cheat day, but severe overeating sessions. On top of that, I’ve been a diet cokehead for a good 15 years. This hasn’t bothered me so much until now, in fact just before I started on the Topiramate. But around six months ago I noticed my mouth and jaw were aching or would feel loose with clicking sounds. I also began getting bad arthritic pains all over my body, mostly arms and hands. I still feel like the Topiramate is responsible for my, well, permanent brain damage (I can’t even type this sentence without severe problems finding a word, much less typing it fast like I used to). But I wonder if much of the issues started before.
I’m extremely devastated by all of this. I’ve made the commitment to your suggestion of the keto diet, but I’m concerned about my own willingness to adhere to it. In the event (somewhat likely I’m afraid) that I simply can’t stick to it, do you have any idea about nootropic or other effects-reversing agents that might help? I was thinking of trying Eutropoflavin/4’-DMA-7,8-DHF. I’ve also read of Memantine as a neuroprotective has been taken with Topiramate, and there is of course Piracetam. These may go against the eliminate-all-drugs idea of treating things, but I would appreciate your thoughts.
Acceptance and admission, and knowing your own weaknesses, are part of the course for your recovery. It’s really not your fault that you ended up the way you did. The food pyramid, which is the recommended way of eating, causes this to everyone to some degree. Those more susceptible for addiction (this is genetic) will have a tougher time with changing their lifestyles. You have fallen into this group. But you must change if you want to stay alive and “have a life” so to speak.
Unfortunately, since I am a PhD rather than an MD, I cannot recommend any medications–I am not familiar with them.
I would recommend that you contact a fantastic doctor who is in full support of low carbohydrate diets: Dr. Robert Cywes, MD, PhD. He openly gives his contact information on YouTube: https://www.youtube.com/c/DrCywesCarbAddictionDoc/videos (the last two interviews are with me actually). Look in the show notes on how to contact him and make an appointment with him. He specializes in obesity and eating disorders and may also have additional referral help, and he most certainly can help you with the right medications–if such exist. He take appointments for online consultation.
Best of luck to you! And let me know how things go!
As expected I was unable to sustain the keto protocol much past a month. So, for about three months now I’ve not been doing the diet; in fact, the binge eating returned after Christmas with a vengeance. With it so too did many of the same side effects I’d originally associated with Topamax (things did seem to get better for a while). I’ve now resumed the diet, this time in earnest, and will begin going OMAD with intermittent fasting and only water (no diet coke) this time.
I’ve been seeing a neurologist and had some tests done (MRI and PET). These did reveal a little damage to the frontal lobe and slowed uptake into the left cingulate. So I wonder if the Topamax experiment caused permanent damage . . . after only around 15-20 pills of 25 mg over a two-week period! I’ve also learned I’m gluten sensitive (have the gene) and may have Celiac Disease. In the last year or so, I’ve also developed pretty severe inflammation problems, severe jaw pain/TMJ and other neuropathy-type things that I’d never had before. I’m now 42.
My question is, do you think the damage is permanent? I’m resolved to continue this diet/protocol and will likely keep it going for a while, as much to heal my inflammation as to help with brain/neurology stuff. Also, with regard to my food/vitamin stack. Would you be able to take a look at it?
Thanks for following up. I am so sorry that you fell off the keto protocol–I suppose you proved that you are a human. 🙂
No worries. Returning to keto and taking it seriously will be helpful. Let me address a couple of important points and then your question about damage permanence.
OMAD: when you eat OMAD, this causes and overload of food in one sitting and this can cause trouble in terms of your hunger, insulin, etc. I have tried OMAD and know many other people who tried and it rarely has any positive outcome. In fact, if women go OMAD, they usually lose their menstrual cycles! OMAD is a huge stress on the body. I don’t recommend it.
I much rather recommend that you eat twice a day. I ended up naturally eating twice a day and have been doing that now for several years. It doesn’t matter which meal you skip. The benefit of eating twice a day is that it allows for protein synthesis twice a day and so you heal faster.
In terms of the ketogenic diet: it is not possible to eat OMAD on the ketogenic diet because you will end up losing lean muscles. The ketogenic diet is high in fat, medium in protein, and low in plants. To keep your health up, you need to eat sufficient amount of protein to allow your body recycling old cells and creating new ones from scratch. This requires protein synthesis. Eating OMAD doesn’t all for much protein synthesis since 80% of protein is glucogenic (meaning it turns to glucose) and in such large amounts as you need to eat it in OMAD, your insulin will be spiked too much and the protein will turn to glucose. This won’t help you stay in ketosis, plus because you can only synthesize protein for a very short time, you cannot generate new cells. It won’t allow for enough healing.
So here I come to responding to your question on permanence: it is not clear if any of that damage is permanent or not since you have taken Topamax for such a short time. In order to get the benefits of the healing powers of ketosis, it needs to be sustainable and healthy. You need to eat a high fat diet with just enough protein to start protein synthesis and almost zero plants–I would recommend zero plants actually. If your brain has a chance for recovery, it will do so only under ketosis. It is important that if you get kicked out of ketosis, it is only for the period of protein synthesis and then go back into ketosis immediately.
I hope this makes sense. If I were you, I would eat a keto-carnivore diet of just animal products with 60-70% fat and 30-40% protein and eat twice a day. I would also keep some fasting days here and there when I eat nothing for 1-2 days, maximum 3 days and no more, drinking salted water only.
Good luck and keep us posted!
Do you have the citations for any clinical evidence showing that Topamax can be permanent? I’ve yet to find anything that for sure states it causes cell death or can permanently destroy synaptic connections.
No Phil, there is no drug on the planet that would be approved by the FDA is there was clinical evidence of permanent brain damage from its use.
With this said and done, the Topamax label itself states the following:
This is the list on the official label.
This list is nearly as damming as proof of permanent brain damage. For possible glaucoma it does state possible permanent damage… this is how far it is willing to go.
In terms of destroying synaptic connections: the very statement of “inhibiting” various voltage gated channels means the disconnection of synapses. That’s within the name.
I hope this helps,
I was prescribed Topamax for migraines, and while the medication worked for that purpose, I gradually stopped being able to comprehend complex, and sometimes even simple, information. I was in graduate school at the time, and I found I couldn’t understand what I was reading in textbooks. I had also descended into a noticeable (to other people) fog, would forget common words, and had difficulty communicating. I had to request a medical leave from graduate school for a semester to come off the medication and recover.
If I hadn’t been in grad school and realized I wasn’t understanding or retaining anything I was reading I don’t know how long I would have stayed on this medication, which was working, and been unable to really function in my daily life. Grad school was good for something. : )
I am glad you have discovered your troubles from Topamax and glad you were able to finish your graduate studies. Indeed, grad school was definitely good for something!
In my opinion and experience, migraine has been just as useful for me (and for the thousands of migraineurs who follow my protocol) because it helps us navigate what is healthy for us to eat and do and what isn’t. If it weren’t for my migraines, today I would very seriously be type 2 diabetic, likely on insulin and already having lost at least a toe. My body was telling me to stop eating carbohydrates, sugar, cereal, breads, pasta, potatoes, rice, beans, quinoa, fruits, and smoothies by giving me migraines all the time after I ate them, but I didn’t understand the communication “language” (the pain) well enough for a very long time. I also got my doctorate while having daily migraines every day of the week. And I didn’t listen.
Then one day I figured it all out, stopped eating what gave me migraines, increased my salt, and wow, no more migraines! And just like that, I was medicine and migraine free–plus I reversed my diabetes and about a dozen other health conditions. Migraine prevention without medicines is completely possible. If you still get migraines, I recommend you join my Facebook group–link is above.
Best wishes and congratulations for listening to your body,
I was very fortunate to stumble upon here text at the bottom of this article I just started tapering off of my topamax from 150 mg twice a day to 100.
I was wondering why I was making so many mistakes and my brain was so foggy, I never wanted to make excuses, wanted to find a reason and I think I found one maybe 5 years of being on these pills topamate being of them will or maybe reducing it to 50 mg once a day you know will do the trick or going back to neurontin thanks for sharing.
I am very happy that you have bumped into my article and that you are considering your options. Good luck with your tapering–taper very slow, slower than the pharmaceutical instructions because tapering that way will cause trouble.
This medication helps a great deal more of the people than the number it’s hurting, hence why it’s still being used. I know for me personally, the only side effect I have is the tingling, and that’s occasionally. I take 300mg daily for bipolar disorder. You might want to look up the side effects again on accredited sites and not just your little blog because 75% of what you have listed literally sound like the dose was too high.
Just because a medication works for you and you haven’t experienced any adverse effects, it doesn’t make the drug safe for others. I recommend that you ask for the official label (for physicians) next time you refill your medication. Here is the latest label (see it here the actual FDA document) from which I copy-pasted here the current list of warnings:
———————–WARNINGS AND PRECAUTIONS———————–
• Acute myopia and secondary angle closure glaucoma: can lead to
permanent visual loss; discontinue TOPAMAX as soon as possible (5.1)
• Visual field defects: consider discontinuation of TOPAMAX (5.2)
• Oligohidrosis and hyperthermia: monitor decreased sweating and increased
body temperature, especially in pediatric patients (5.3)
• Metabolic acidosis: baseline and periodic measurement of serum
bicarbonate is recommended; consider dose reduction or discontinuation of
TOPAMAX if clinically appropriate (5.4)
• Suicidal behavior and ideation: antiepileptic drugs increase the risk of
suicidal behavior or ideation (5.5)
• Cognitive/neuropsychiatric adverse reactions: use caution when operating
machinery including cars; depression and mood problems may occur (5.6)
• Fetal Toxicity: use during pregnancy can cause cleft lip and/or palate and
being small for gestational age (5.7)
• Withdrawal of AEDs: withdraw TOPAMAX gradually (5.8)
• Decrease in Bone Mineral Density: has been shown to decrease bone
mineral density and bone mineral content in pediatric patients (5.9)
• Negative effects on growth (height and weight): may slow height increase
and weight gain; carefully monitor children receiving prolonged therapy
• Serious skin reactions: If SJS or TEN is suspected, discontinue
• Hyperammonemia/encephalopathy: measure ammonia if encephalopathic
symptoms occur (5.12)
• Kidney stones: avoid use with other carbonic anhydrase inhibitors, drugs
causing metabolic acidosis, or in patients on a ketogenic diet (5.13)
• Hypothermia has been reported with and without hyperammonemia during
topiramate treatment with concomitant valproic acid use (5.14)
Epilepsy: Most common (≥10% more frequent than placebo or low-dose
TOPAMAX) adverse reactions in adult and pediatric patients were:
paresthesia, anorexia, weight loss, speech disorders/related speech problems,
fatigue, dizziness, somnolence, nervousness, psychomotor slowing, abnormal
vision and fever (6.1)
Migraine: Most common (≥5% more frequent than placebo) adverse reactions
in adult and pediatric patients were: paresthesia, anorexia, weight loss,
difficulty with memory, taste perversion, diarrhea, hypoesthesia, nausea,
abdominal pain and upper respiratory tract infection (6.1)
To report SUSPECTED ADVERSE REACTIONS, contact Janssen
Pharmaceuticals, Inc. at 1-800-JANSSEN (1-800-526-7736) or FDA at 1
800-FDA-1088 or http://www.fda.gov/medwatch.
• Oral contraceptives: decreased contraceptive efficacy and increased
breakthrough bleeding, especially at doses greater than 200 mg/day (7.4)
• Monitor lithium levels if lithium is used with high-dose TOPAMAX (7.7)
As you can see, this drug has quite a bit of a problem, and a lot more now than before. This is the latest update in 2022.
If the drug works for you: great. But being informed with what a drug does has not hurt anyone. It is better for you also to know what you are taking, since in time it may cause problems, and you may want to know if your troubles are caused by the medication or something else. Keep informed! Always!
Agree with you Lynn Harris. I’ve been on it for years and I have slight tingling in my hands and the benefits far outweigh the tingling. I went off it for a trial period and my migraines came roaring back.
Topamax is a life saver for me.
This list of side effects sounds like you’re listing everything you can find to scare people. I’m sorry you’ve had a bad experience. But don’t post as an expert.
I would like to turn this around: a professional can always (in fact, a professional is obligated to) tell the full facts that are on the label and the adverse events reported by many people and also in the adverse events reporting database. Those who are using it, and have no adverse events, should not be trying to hide or lessen the facts that this drug hurts more people than it helps. The true facts must be out so people don’t end up handicapped for life from this drug–many do.
Another note of importance: migraine is 100% preventable by the proper way of eating and increasing salt. No medicine is necessary at all.
Those not willing to part with their love for carbs and are willing to take long-term negative effects from the brain degenerative effects of Topomax: by all means! It’s totally your decision what you choose to accept in life.
But don’t think that your way is the normal way of going about life for others.
It is far healthier to eat right and, therefore, have no need for medicines, because one has no migraines.
I hope you can see the sad irony and the tradeoff. Reaching for drugs is always the easier way but is it the better way? Hardly.
Thank God you are not my Dr. You say eating salt and eating proper stops migraines? Hogwash! Maybe if you want high blood pressure…eat salt! I’ve suffered migraines my whole life since I was a teen. I’m now 52. I’ve had 3 Tia’s ( mini-strokes) since I turned 50. I’m 5’8” and always been a bean pole. Very active. My problem is the arteries I was born with. Very tiny. Cranial pressure doesn’t help matters either. Topamax has gave me my quality of life back!! Only side effect is the prickly numb feeling in hands n feet. Wake up at 5 am every morning. It does nothing for pain. It’s job is to stop the migraines from happening and so far it has done just that. I’ve only had to take 2 ibuprofen since starting on the topamax. I hate that others have had bad side effects from this drug. Not disputing that. Just disputing what you said about the salt!
I am not anyone’s MD since I am a scientist and not a medical doctor. Since I am a scientist, I have full understanding of physiology and also access to a ton of academic articles that show that salt doesn’t increase blood pressure–for those with healthy vascular system and healthy kidneys–and for those whose blood pressure it increases, it is very modest of a few points in systolic! Here are some articles for your enjoyment on the topic: “Relationship Between Nutrition and Blood Pressure: A Cross-Sectional Analysis from the NutriNet-Santé Study, a French Web-based Cohort Study” (American Journal of Hypertension); “The wrong white crystals: not salt but sugar as aetiological in hypertension and cardiometabolic disease” (BMJ); “Severe Headache or Migraine History is Inversely Correlated With Dietary Sodium Intake: NHANES 1999-2004” (Journal Headache) This last one is especially fitting since the (rather famous) authors found in a very old database the very thing I am suggesting.
Your ignorance of the benefits of salt, how it is utilized by your body and that there is not a cell in your body without salt, is totally understandable given your health conditions, which are unique and represent only you. For everyone, including you, if you don’t eat salt, your kidneys recycle salt all the time! your body cannot function without salt at all. Reduced salt leads to damaged kidneys and heart (yep, the heart beat is the outcome of salt combined with calcium–no salt, no heart beat). If you have healthy kidneys and you happen to overindulge in salt, the excess sodium is removed from your body within 12 minutes! Such is the job of healthy kidneys.
Most people don’t know this and most doctors also forget that the kidneys are responsible for electrolyte homeostasis (salt and potassium balance for proper osmolality in the blood and thereby blood pressure) and there are much more problems associated with not eating enough salt than eating too much.
Of course, what one eats, in general, is the most important component here. If a person eats a lot of carbs, lots of grains, seed oils, and other processed, junk, or fast foods, then there will be vascular inflammation (not from salt but from the foods consumed) and damaged kidneys will follow as well as a result. Those whose blood pressure increases from salt are overweight, metabolically ill, and have reduced kidney functions.
I have also started migraines when I was about 10-11, and I am old enough to be your mother by the way. And I must say that after a decade of having increased my salt massively (minimum 1/8th teaspoon salt per 8 oz cup of water with all water every day, and now 1/4 teaspoon of salt per cup for the past year), not only have I done away with my migraines completely, but also all my medications–even those I was taking for other condition than migraine, such as asthma, allergies, arthritis, and a host of others, as a result of my changed of diet and vastly increased salt intake! I have never been healthier in my life. And those I help with their migraines, all report the same–by now I have worked with and helped more migraineurs than any neurologist or other migraine specialist in their entire practice, and I have only been helping people for 8 years. Others, not migraineurs who had high blood pressure, upon adding salt into their waters and increasing the amount of water they drank, all had a reduction of blood pressure in response to increased salt intake, so the exact opposite you believe.
Your stroke is a consequence of damaged vascular system, be it from genetic variant, birth defect, or for whatever reason. Your case is not “the norm” by any standard and no doctor would ever consider your example as a case study upon which a rubric should be created for others! You also have intracranial pressure (pseudotumor cerebri), a special phenomenon of excess fluid buildup in the brain causing hypertension in the brain–not elsewhere in the body. Don’t hold salt responsible for something it hasn’t done! You didn’t have a stroke because of excess salt; you had a stroke because of genetic health conditions and also potentially you are eating the wrong nutrients for full body health! For reference, IIH improves massively when carbohydrates (all) are cut from the diet. Part of the reason for the fluid buildup is the excess carbohydrates.
So basically, your rather angry comment here comes from looking at the world from the narrow vision of your own disease and experience that are independent of salt, and are different from a person without these same health conditions, which is basically most people out there. In addition, as I noted earlier, I lecture healthcare professionals, including medical doctors, about salt, change of nutrients, and that migraine is preventable–even in your case. I work with several other people who have intracranial hypertension and they are doing super on the protocol and even IIH is reduced!
Best wishes to you and I hope you open your mind a bit more so that you can help yourself,
Just WOW!!!!! That’s all I can say!!! Just WOW!!! To say that reaching for drugs to someone who suffers with migraines and actually surfing the web to try to possibly find a better way to deal with them and you have the audacity to tell them all they need to do is EAT BETTER AND TAKE VITAMINS!!!!! JUST WOW!!!!! I have been on Topamax for YEARS!!!! I am actually trying to wean off and am now DOWN TO 400 mg/day yep down from 800 mg/day!!!!! However, I would choose this and the HORRIBLE side effects that I survived in the beginning to the debilitating headaches I have suffered since I was in the third grade. I will be 60 next month.
Yes nutrition is essential! Yes exercise is essential! However, medications are part of life as well.
I wish you well. Maybe one day we will have a cure for these headaches. Until then, we will just have to preserver.
Migraine is completely preventable by nutritional methods. By now this has been proven thousands of times over and over again.
You write “…medications are part of life as well”: actually no, medications are not part of life. Humans lived for a couple of millions of years without a single medications! Medications are needed in cases of infections and that’s about all. I have been a migraine sufferer from about age 11 or so and have learned to be migraine free by simply changing my lifestyle and eat more like my ancestors would have. It’s really simple. The understanding of what migraine is helped me see free avenues, which most certainly create financial havoc with the pharmaceutical companies whose medications I don’t take, and medical offices, emergency centers, and hospitals, whose services I no longer need all suffer the financial consequences. But I am healthy, as are those thousands who follow what I do. I recommend you read the many testimonials that show you the possibilities of living a happy and pain-free life for migraineurs by changing what they eat. These testimonials were copy-pasted (with permission) from my Facebook migraine group, where you can find all of the originals.
Lest you think I am talking hot air: I actually teach this to healthcare providers for continuing education credit through several institutions that offer CED for doctors and other health care professionals. I am posting these here for you so you can see that my solution is not hogwash but real:
Masterclass on Migraines: Neurological Conditions: Migraines, released September 21, 2022 offered for CED credit, sign up here and you will find the course here.
Nutrition Network,3 lecture hours on migraine plus an hour of personal interview. These classes are for healthcare providers, and offer continuing education credit. This class requires payment to the organization of Nutrition Network. See mine here.
You can see a free introduction here: “Angela Stanton, PhD & Jayne Bullen – Neurology”
Nutrition Coalition in the UK: The Stanton Migraine Protocol®: A Masterclass.
Since the above links are expensive and are for healthcare providers, which I am sure you are not, I include a lot of links for you here that take you to YouTube interviews I had in the past few years. These are free and explain migraine and the protocol very well–note how many are interviews by medical doctors!
Free Videos for the General Public:
Kick Sugar Summit interview by Florence Cristophers
MIGRAINES AND KETO – BENEFIT OR LIABILITY? Dr. Robert Cywes MD, PhD interviews Angela A Stanton PhD, part 1
MIGRAINES AND KETO – BENEFIT OR LIABILITY? Dr. Robert Cywes MD, PhD interviews Angela A Stanton PhD, part 2
A Complete Guide To Migraines with Angela Stanton, Ph.D. on Boundless Body Radio!
The Low Carb Lifestyle Podcast by Tracey McBeath
“The Stanton protocol for dealing with migraines| ft. Angela Stanton |PART 2″ with Astrid Naranjo Accredited RD & Nutritionist
“Everything you need to know about Migraines.| Angela Stanton PhD | part 1″ with Astrid Naranjo Accredited RD & Nutritionist
“dLife.in Podcast: Angela Stanton on Migraines and Low Carb LCHF & Keto Diet”
“LLVLC Podcast with host Jimmy Moore: Angela Stanton Takes Us To School On Migraines, Hormones, & Keto Carnivore Diets”
“Stop Migraines On Demand”–Dr. Angela A. Stanton with Dr. Pete’s Keto Club: https://www.youtube.com/watch?v=WEc6oAOfM7c
“MeatRx Carnivore Community Meeting with Angela Stanton, PHD” with Dr. Shawn Baker
Nutrition with Judy (Part 1)
Nutrition with Judy (part 2)
Dr. Shawn Baker and Zach Bitter: Episode 109: Angela Stanton – Is Your Diet Giving You Migraines?
The Ketogenic Girl: Keto & Carnivore: Electrolytes, Water Retention & More with Dr. Angela Stanton
MeatRx with Dr. Shawn Baker: Dr Angela Stanton – MeatRx Community VIP
The Ketogenic Girl #2: https://www.youtube.com/watch?v=0zVqWX9-RHw
Biohackers Lab: Natural Migraine Relief (Stanton Migraine Protocol Review) • Dr Angela Stanton PhD
Fitness Confidential with Vinnie Tortorich
Podcast with Vanessa Spina on protein:
Boundless Body Radio: https://www.myboundlessbody.com/podcast-1/episode/4bd47d19/fighting-the-migraine-epidemic-with-dr-angela-stanton-070
by Carnivore Cast:Dr. Angela Stanton – Migraine Relief, Electrolytes, Keto/Glucose Brain Metabolism
Bisu: Preventing electrolyte imbalances – how to beat migraines, keto flu & Bloat – Angela Stanton, Ph.D.
THE MORNING SHOW with Patrick Timpone: Angela A. Stanton PhD
Articles based on Interviews:
Hoofdpijnet (Netherland Migraine Association): “Treating and Preventing Migraines without Drugs According to Dr. Angela Stanton: ‘More Salt, Less Sugar, Enough Water”
The Daily Mail (UK): “Can you cure migraines by eating more SALT? That’s the controversial suggestion by one US neuroscientist – but what do leading experts think?” Can you cure migraines by eating more SALT? That’s the controversial suggestion by one US neuroscientist – but what do leading experts think? https://www.dailymail.co.uk/health/article-6008119/Can-cure-migraines-eating-SALT.html
I think I have provided substantial evidence for the lack of need for any medicine and support that nutritional methods are the “New Thing” you may want to pay attention to. Of course, if you’d rather suffer the consequences of long term damage by terrible medications controlling your brain, instead of a simple diet change, that’s your choice.
Also maybe the drug works different for me because I have many types of seizures, not just one or two types. I also realize that each individual is different.
On a sidenote, I have often wondered if there is any type of data on women taking topamax going into menopause who have experienced increased seizure activity similar to that experinced with the hormonal changes in adolesence? If you know of any studies on that I’d be interested in reading up on it. Many thanks.
I see you have 2 posts so let me respond to both with this one response. The first thing I want to be sure is clear that I don’t support honey for anyone at all. While in an evolutionary sense honey (for some tribes) most certainly had its purpose and function, in our modern life full of too much food energy, it is not only unnecessary but counterproductive. It is also high in fructose–higher than table-sugar. Here is what 1 tablespoon of honey contains (from USDA here):
It has next to zero other nutritional value. Coconut oil has significant value because it is mostly saturated fat and much of that fat is used by our body as ketones, which has significant benefits–particularly for a person with seizures. There are hundreds of research showing amazing success stories using only the ketogenic diet for seizure prevention. This is nothing new, if fact, there is some knowledge that it has been used in ancient times, potentially BC.
All drugs have long-terms side effects, whether you feel them (now) or not. Nutritional methods for seizure prevention have been so successful that there is really no reason to not try. The other coincidental positives is a healthier body and a longer, healthier, and more youthful body, when such lifestyle changes are made.
So, while I appreciate that you are comfortable with Topamax and so far had no adverse effects, the likelihood of this changing in you future is pretty strong. So I recommend you prepare and try to see what works as an alternative!
Will you please comment. Did you know gadolinium is a calcium channel blocker? Your explanation regarding topamax explains what I know about gadolinium. For those who are unsure, gadolinium is the injected heavy metal “dye” used for MRI’s. It can deposit anywhere in your body including your brain.
While I understand your concern, and I have heard bad things about gadolinium in some cases, the proper chelated gadolinium appears to be safe. Gadolinium is an ionic material–ion means it is electrically active, and it will steal an electron or attach to another atom, and this “marriage” may not be to the benefit of the patient. So some issues will present in terms of its use.
It is used as an agent in scanning to be able to trace damage to blood vessels, for example, When it is used, the benefit of finding out about the location of a nasty blood leak, which can be lethal, outweighs the risks of gadolinium attaching to the calcium ionic channels. Gadolinium is an ionic metal and risks are definitely associated with it. However, if my options are potential death from a blood leak versus a potential damage to some of my calcium ionic channels but stay alive and well enough to live, I will still choose the gadolinium route. It may save my life.
It is up to each individual to make the decision about how much risk one is willing to take, and I think that advising anyone against getting a gadolinium dye is not our job. I edited your post and removed the link because I don’t think it is this blog’s job to advise or scare people against a procedure that may help save their lives.
Interesting article but not entirely accurate. I was part of the clinical drug study back in the 1990s when Topamax was undergoing FDA approval. It is used as a monotherapy for epilepsy. The statement in your article that it is recommended as a secondary drug is not correct.
The primary approved purpose of the drug is anticonvulsant so the diagram you showed of neuron blocking and whole body effects demonstrate just how effective it is in ending grand mal convulsive seizures which affect the whole body – not just the brain. Your own argument proved its efficacy beautifully.
The fact that it has also shown applicability to other patients struggling with life-altering medical conditions is a benefit yet this article demonizes it.
Is it a powerful drug? Yes. Are there major side effects? Yes. Whenever you are ingesting a medication to affect the brain it’s expected there will be side effects. Do people ingest alcohol and get upset when they get intoxicated?
During the clinical trials people were dropping out left and right due to the side effects. I had been having breakthrough seizures like clockwork for years on multiple drugs. Couldnt drive. Injuries, ER visits.Topamax ended all of that and I am forever grateful for the amazing quality of life I have been given over the past few decades. There are no side effects that Topamax can throw at me that even remotely compare to the seizure free life I have lived for nearly 30 years. And… the side effects change over time. They are not the same in my 20s, 30s, 40s. It is truly a wonder drug. I work, I drive, I have a family, I kayak. As a PhD I’d challenge you to be a bit more objective in your article and at least be accurate about its FDA use because the data is out there. There was also a registry, I believe of people who were in the clinical trial and it was tracking long term effects.
Thanks for your comment but it is your comment that is inaccurate. Topamax was approved in 1996, but as a monotherapy (for seizures) it was only approved in 2005. However, to this date it is rarely–if ever–used as the “first and only drug” of choice for even seizures. After trying a mix together with Topamax, often they switch to monotherapy (for seizure) and it may be Topamax. The most typical medications used for seizures–in combination or as monotherapy (from here):
It is used as monotherapy for migraine, weight loss, and some of the other conditions I listed in the original article–none of which is warranted!
The side effect list of Topomax (from here):
In terms of its effectiveness for seizures: 100% agree with you. However, if one has no seizures, but has other conditions, such as migraine or obesity or a host of other conditions for which they prescribe Topamax, the outcome of the brain degeneration it causes takes on another meaning. Seizures damage the brain, and Topamax also damages the brain. In the proper context of the potential dangers associated with not taking Topamax versus taking it, the trade-off is clear and is well worth it. But people who have no seizures, the ensuing damage to the brain from blocking several voltage gated channels, thereby initiating trimming of valuable connections, is a devastating error that can totally be prevented by simply not using this drug! That’s what this article is about. It’s not about those whose brain would be damaged without it–obviously.
I need to talk to you. Privately if possible:)
Thanks for your reply. As long as I’ve been on Topamax it’s been the only drug I’m on. Before Topamax it was combinations of drugs that didnt work effectively.
I was only ever proscribed Topamax as a monotherapy. First in my hometown of DC where I had originally participated in the clinical trial at George Washington University Medical Center. Then later when I moved to the Philly area and I came under the care of the Chief of Neurology for the Main Line Health System. He also proscribed it as a mono therapy and he has treated me for 20 yrs. I only switched off the drug once to plan a pregnancy which was successful – then transitioned back on. My son is now a sophomore in high school.
I do experience about 75% of the side effects you listed. Those were known ahead of time. As I said before for me personally I’ve made peace with this amazingly powerful drug. I embrace it.
I find other natural healthy ways to soften the side effects a little. It was actually through reading about raw honey and coconut oil that I came across your article in the first place.
You haven’t found a single person who isn’t considering quiting Topomax due to side effects? Not one? Well here’s one: me. Only side effect I’ve noticed is intractable hemiplegic migraine isn’t wrecking my life anymore.
Oh I am sure there are plenty of people who take Topamax in spite of the side effects! However, for certain conditions–such as what you have, migraines–there is a solution that is medicine free. Only not all people know bout it. I have been a migraineur all my life (from age 10 starting with cyclical vomiting) with classic as well as hemiplegic migraines. However, after over 10 years of research and experiments on myself, I learned how to prevent my migraines. I can create migraines and stop migraines on demand. I figured out the cause of, what I then thought, were only my migraines. We all are different and I thought what I do may only works for me. But then I wrote a book about it, and pretty soon thousands read it, tried it, and it worked for them as well.
Since then I wrote the 2nd edition of that book, which now incorporates much more information (a complete guide by now) and a ton of information from other migraineurs who tried what I do. Today, it is called the Stanton Migraine Protocol(R) and it has been used by several thousand migraineurs from all over the world, for all types of migraines, by all age groups and genders. It works for all! The protocol still needs custom tailoring to each person since we still are all different, but the basic approach is the same for all.
You can find my book here and my protocol migraine group (I have more) on Facebook here if you wish to join.
As a 20 year migraine patient I’ve never been prescribed your book. You really should get it FDA approved. Seems like it would work miracles. When do the clinical trials start for your book? I’d love to sign up for them.
Every person doesn’t suffer just migraines or just seizures. Our bodies are multifunctional systems of bacteria and disease. We are all dying. Can we live our best life? For sure, for some topamax may be the 15th drug they have tried (where previous year’s of going drug free, hormones, diet changes, miracle books and other drugs failed) and it has taken their monthly migraine days from 20 per month down to 15. 5 LESS MIGRAINE DAYS! That’s fn GREAT! Plus maybe they have MS and the topamax numbs the pins and needles in their legs? Great fun side effect. This is me. Do I still have a list of triggers, be sure to get good sleep. Of course. But topamax also helps me live a more fulfilled life.
All drugs and natural supplements and even foods have the ability to heal or harm. They all have side effects.
We each live our own lives and until you have every medical condition and body chemistry down to the dna it is up to each individual and their care team to make the decisions that are best for them.
No one should be shamed for taking topamax. Trust your own doctor, not someone on the internet.
No one is shaming anyone as a result of them taking Topamax. This article is not about shaming. It is about information so that those prescribed Topamax (Topiramate in generic or Trokendi in time release) are aware of the dangers associated with this drug and can make informed decisions.
You mention that people have other “diseases” and, like you, have multiple sclerosis (MS). But has anyone ever told you that MS is an autoimmune “condition” that can be put to remission and may even be reversed by changing your diet to one without vegetable/seed oils, grains, processed foods, and sugar? There are only 3 types of diseases on this planet:
1) Genetic congenital diseases, such as hole in the heart, cleft lip, some genetic cancers (there are very few of these and usually these appear in children), etc. These may or may not be curable and often people die from them at birth or very young.
2) Transmittable diseases, such as the flu, tuberculosis, or Covid of most recent. I also place into this category tick and other bug-borne diseases, such as dengue fever and malaria. These are often very serious and can be fatal–as we have seen.
3) Lifestyle diseases. I place into this category those that are caused by our diet and are completely preventable and usually fully reversible or can be placed into remission. This is a very large class, representing over 90% of all diseases today. The most commonly known ones that fall into this category are: most cancers, MS, Parkinson’s disease, Alzheimer’s Disease (often referred to as type 3 diabetes) and other dementias, type 2 diabetes, heart disease, cardiovascular disease, stroke, obesity, arthritic, colitis, IBS, Lupus, hypothyroidism, Hashimoto’s disease, dandruff, seizures, Guillain-Barre syndrome, migraine, Chronic inflammatory demyelinating polyneuropathy, psoriasis, PCOS, asthma, allergies, etc. There is a long list here.
The categories of diseases I listed under 1 and 2 are real diseases that are often neither preventable nor curable. All of category 3 are autoimmune “conditions” and not diseases. “Autoimmune condition” means that the body attacks itself as a result of trying to get rid of something very hard and, in the process, starts attacking self. The most well-known type of such autoimmune condition is celiac, in which the body is trying very hard to get rid of gluten, a plant protein in the prolamin family, but because it attaches itself to important human proteins, in order to get rid of it, the body must attack its own self and get rid of the human protein as well.
As in the case of celiac disease, if the person stops eating grains, the condition stops, and the body can completely reverse all damage that was done and recover. I know: I am a celiac. I have (had) other autoimmune conditions: migraine, arthritis, IBS, allergies, etc. I had a ton of them… How many do I have now? Zero… How many medications am I on? None.
It is fair enough that you tried to make a joke out of a protocol in my book that doesn’t clinical trial and FDA approval. But it needs neither clinical trial nor FDA approval. Why not? It has no medicines! It is just eating the right foods for the person. So there is nothing needing to be approved! All of what is in the book is already approved, and everything you need is in your neighborhood grocery store!
All foods have the ability to harm and heal! But medicines prescribed for Lifestyle Conditions, like your MS, don’t heal. The question of importance is this one: are you sick with MS because you have a Topamax deficiency? Because MS is a nutrient deficiency.
Do you consider Topamax a cure? If yes, why do you still have symptoms?
Or is Topamax a symptom treatment? Your still have symptoms and still are sick.
MS can be put to remission. Read Dr. Terry Wahls protocol and watch her TED talk in which she shows how strong MS she had and how she recovered. And she is an MD!
So, in my closing, before you attack anyone’s work that helps tens of thousands of people without the use of any medicines at all, like my work does, study up on it. You may just learn a few things that may help you. Be open to alternatives! You can lengthen your healthy life by keeping an open mind instead of dooming everything you don’t understand.
…[comment part deleted]… People in pain with chronic illness are desperate to find solutions and you prey on them to give them “you” miracle cure. For a fee. …[comment part deleted] But yes, unfortunately, no treatment comes without side effect. Such is life…
I deleted part of your comment.
Secondly, I don’t charge anyone anything and offer no miracle cure for anything. I am not sure what you are talking about.
And lastly: your last 2 sentences are: “unfortunately, no treatment comes without side effect. Such is life…” not exactly true. Lots of treatments come without side effects. The question is “what treatments are chosen” and for what?! This article is about Topamax and the best way to avoid migraine is by nutrition. So it’s preventable. Nearly all modern “diseases” of the Western World are preventable. So I focus on prevention and help people learn how to prevent it. And my help is completely free!
I think you need to do some fact-checking before you post a comment on an article,
Is neurontin as dangerous to the brain as tapamax? I take it for severe arthritis. I’ve took for about five years now.
There is very little difference between Neurontin and Topamax. They both are anticonvulsants, blocking voltage gated calcium and sodium channels. Neither is a pain killer, both block the release of neurotransmitters, which may act as pain sensory information, thereby blocking some pain, but they also block vital communication among brain cells. As a result, with the breaking of the communication, these drugs degenerate the brain.
In terms of arthritis, I recommend you read up on how many people recovered from arthritis completely after they stopped eating grains–me included in that list. Arthritis is an autoimmune disease. Autoimmune diseases are caused by the body reacting and damaging its own self in the process of trying to get rid of irritants. So arthritic damage is caused by your immune system attacking your joints and bones.
When I stopped all grains–not just gluten but all grains, read one of my articles here, you can see what are grains and how they cause damage–it took about 3-6 months to notice that I stopped hurting. By about a year after I stopped grains, some of the finger joints that were distorted from arthritic inflammation have actually reversed the damage. I have only one finger left now on which I can see enlarged joint but it has not hurt for years by now. I have not touched any grains for 5 years by now.
So there is an alternative that you should read up on! I recommend you read this book–this is the one (in an older edition–that turned me against grains.
Hi Angela, I stumbled across this while trying to figure out what could be going on with me. I’ve been taking Topamax since 2007. Currently at 100mg per day, but the dose has varied through the years. I take it for migraines. I am nearly 40 y/o. I have recently (2-3 weeks) developed a slight stutter and almost the feeling like the words are getting stuck in my mouth. I have never had problems with Topamax in the past, with the exception of very slight tingling in my fingertips and toes at the increase of dosage. I was lucky. I’m curious if this is the onset of a side effect. I’m not feeling so lucky, if so. I haven’t suffered any head trauma or been in any type of accident. My health is good (other than the occasional migraine). If you have time to respond, thank you.
Yes, it can very well be signs that this drug has exceeded its welcome… You know you can be completely migraine free by changing your lifestyle. Here is my Facebook migraine group you should consider joining.
Migraine is a genetic condition, which sets up an extreme sensitivity to carbohydrates and a need for much higher sodium content of the electrolyte than typical.
Migraine is caused by an electrolyte imbalance as a result of the over-activity of the sensory neurons. In a migraineur’s brain, the sensory neurons have much more connections than the same neurons in a typical non-migraine brain. This is why migraineurs tend to be overstimulated by strong bright lights, strong odors, loud sounds, more sensitive to touch, and some (like me) also are super-tasters, so more sensitive to spices.
Because of the hyper-reaction of the brain to sensory stimulus, it generates more voltage—voltage is communication in the brain—and that extra voltage uses more sodium. Migraineurs need more salt in their diet to counter this effect. Migraineurs are also glucose sensitive (carbs intolerant) because glucose removes sodium and water from cells—therefore, carbs reduce sodium even more, causing a migraine.
Read this article: Migraine Cause and Treatment and Functional Prodrome in Migraines.
Read my book about migraines and you will find answers all your questions. I discuss the cause, the mechanism, and how to prevent migraines in great details.
There are several video interviews on which I have discussed the cause, prevention, and treatment of migraines without medicines. Here are four of them:
Dr. Shawn Baker and Zach Bitter: Episode 109: Angela Stanton – Is Your Diet Giving You Migraines?
Biohackers Lab: Natural Migraine Relief (Stanton Migraine Protocol Review) • Dr Angela Stanton PhD
The Ketogenic Girl: Keto & Carnivore: Electrolytes, Water Retention & More with Dr. Angela Stanton
MeatRx with Dr. Shawn Baker: Dr Angela Stanton – MeatRx Community VIP
The Ketogenic Girl #2
Dr. Stanton: I was a part of Topamax’s FDA study for migraines. At my zenith, I was at 400 mg per day. Today, I’m at at 200 mg. Historically, I have reactions to most meds. Ironically, I had no obvious side effects with the Topamax. However, over the last two years, I have noticed my recall and my ability to remember something simple is not always there. I use to pride myself on a wicked good memory. Can, after all of these years, Topamax cause this effect? Full disclosure, I did try to reduce from 200 to 100 mg, but the breakthrough headaches were intolerable. Thank you for your time.
I am very sorry about the changes Topamax has caused–hopefully not irreversible. Have you given a try to nutritional change? By headaches I presume you are referring to migraines? Unsure. But if migraines, join my Facebook migraine group here and read my book here to help you learn how to prevent your migraines. The nutritional methods is 100% effective–though it takes some time to reach that level. All the migraine sufferers whom I so far worked with (over 7k) have been able to come off all of their medications and prevent migraines completely. The length of time reaching that stage varies from 1 week to over 2 years.
I am looking forward to seeing you in my group,
I have been on Topiramate for just over a year. I started out on Diamox for treatment of Intracranial Hypertension, but had terrible reactions to it. So my neurologist decided on Topiramate. I was given 100 mg. After a second puncture the pressures had not changed so he upped the dose to 200 mg (I also lost 40lbs). The surgeon doing the puncture was unimpressed by the diagnosis as he felt that I didn’t ‘fit’ the typical case for IIH. So here I am at 200 mg of Topiramate, 40 mg of Hydrochlorathiazide, 50 mg of Pristiq, and 25 mg of Tecta…now they’ve thrown in 2000 mg of Vitamin D3 as my D count was at 54 and my parathyroid was high. I am losing hair, my legs will spontaneously go numb and fall down, my eyesight is deteriorating, my ears hurt, my head feels like it’s on fire, I feel like there are a million electrical currents going off throughout my body, and I’m itchy…I scratch but there’s no relief. I shake and drop things, my head moves and shakes, I can ‘feel’ my heartbeat through my eyes (if that makes sense), I’ve told my neurologist this but he just just speaks ‘down’ to me. At one visit he actually threw his hands in the air and walked out. I was sent to a psychiatrist who told me I had PTSD. So now, my left arm is swollen but I’m scared and frankly, why bother going to the doctor. They treat me as though I’m an overweight, older woman who just overreacts to everything and it’s all in my head. I’ve endured three family deaths in 2 years. So yes, I cry a lot. But my symptoms are real. And has been for over 2 years. And it’s only getting worse.
I was cringing as I read what you wrote! I am so sorry! IH can be temporary. Have your doctors considered a non-medicinal treatment? You may find this article enlightening.
I cannot advise you vie internet and I am not a medical doctor, but there are things you can do. One of the most important factors in IH is obesity. I don’t know your level of obesity. If you lost 40 lbs, you definitely were obese at that time. Reducing weight is not easy because everyone has a a different idea about what the ideal diet it. So while I am not going to recommend any particular diet, I will explain what humans should eat based on their digestive organs. You may find this helpful.
The modern lifestyle of being busy, always running somewhere, lots of technology, noises, etc., suggest that we have little time to figure out what to cook and eat so we eat processed foods. Processed foods (everything that comes in boxes or or packaged in some form) have no nutrients in them–they are empty calories, which make one gain weight for reasons too long for this comment. The human digestive system is nearly identical to that of a wolf. I am not suggesting that humans should hunt a buffalo and eat that raw. But I am suggesting that wolves don’t eat grains, sugar, fruits, vegetables, smoothies, shakes, juices, etc.
For humans too, the essential nutrients are protein and fat. It follows that eating carbohydrates is a pleasant tasteful unnecessary item that is not food for humans–based on the digestive organs. Again, because it would take up a book, I will not go into more details, but carbohydrates, when combined with fat–as these are always together in processed foods–are inherently fattening, unhealthy, and may be responsible for many of our illnesses, including IH. So I recommend you look into nutritional options and change your lifestyle–if you haven’t yet–to one that is healthier for your body. That will eliminate the need for medicines and doctors and there will be nobody to talk down to you and take advantage of you.
I used to be a person always calling my doctor, ending up in the emergency several times each month. I think my doctor likely wished to hide when my name showed up. I was even called a hypochondriac by one doctor–that doctor is no longer with the medical institution I belong to. In any case, since I changed my diet (I eat ketogenic), I only call my doctor for a blood test request once a year!! I have not seen him for 3-4 years. 😉 Things like this can happen to you too if you change your lifestyle. I totally agree with literature that suggests that the majority (if not all) of our diseases today are the result of what we eat. Easy enough to change.
Hello, I just came across this article today. Unfortunately I have a problem with being physically exhausted, episodes of being extremely sleepy, and not always able to think clearly and comprehend information to the level of detail that I used to prior to surgery for a benign brain tumor in 2013. (I have not been able to read and understand very much of the article but will definitely try to do so on my next “clear” day.) Since that time I have also struggled with nerve pain, depression and anxiety. I was prescribed Topomax by a pain doctor to take each night before bed in addition to the 10mg of methadone and 900mg gabapentin. It was also prescribed for the morning but I made the decision on my own to discontinue the morning dosage in and attempt to decrease the excessive sleepiness I struggle with each day. My doctors insist the reason for this is either drowsiness as a side effect of my medications or my depression and I firmly believe there is more to it but have been unable to convince any doctor to investigate any further than blood tests. Nothing is showing up there (they say) and they fall back on the previous excuses. I’m at the point of trying almost anything – including cutting out different meds for their side effects. Topomax is the most recent prescribed and the most likely culprit, also the easiest to stop so it will be at the beginning of August unless I can come up with a reason why not. At that time I will also be starting a journal to track my symptoms, meds, nutrition, sleep, and anything else that might impact my health.
I am very sorry about your condition and hope you can find a way to improve it. may I ask why you were placed on two anticonvulsants? Topamax and Gabapentin both do the same and are usually prescribed for seizures. If you have seizures, I would urge you to discuss this with the Charlie Foundation before you come off of any medicines. Their seizure experts will help you navigate and also change your diet to see if that helps.
I would strongly recommend that you get a full blood test that includes all vitamins and minerals as well. You need to understand what was affected by your tumor and where you are struggling. I also recommend you read some of the articles on Thiamine at this website. There are terrific articles that explain its importance. I cannot make any recommendations to you, obviously, but I strongly urge you to discuss thiamine with your doctor and check all the rest by blood test.
Best wishes to you,
Hi took Topamax for 6 days for migraine. I had horrible side effects and the one that scared me the most was shortness of breath and a feeling like my throat was closing. I have stopped and been off for 2 days but every now and then I still get a panicked feeling, shortness of breath, and heart racing or feeling like it jumped a beat. I also still can’t stand to drink soda. Do these horrible side effects go away? I was only on the drug for 5 days. I was hoping to be back to normal by now.
Some side effects of Topamax may stay for life. It is really hard to tell and you were only taking it for 6 days so perhaps too short for bad things to have happened but one never knows. In terms of soda: why would you drink a soda? The point about stopping a drug for migraine treatment is that you have migraines. The things that cause migraines is what you need to stop eating and drinking and sweetened drinks are very high on the list of “migraine-makers”.
I recommend you join my Facebook migraine group to learn how to prevent migraines. You can definitely prevent migraines, but you need to change your lifestyle.
I hope to see you there,
Hi, i was prescribed topiramate for weight loss. I took 25ml 27 hours ago and i still have horrible side affects that just won’t wear off. My brain is on fire, my vision is blurry, i feel disoriented and dizzy and restless and i can’t stop something that feels like, Idk, a panic attack? I can’t even properly describe the side effects because i have never experienced anything like this before. And i am not someone who tends to be sensitive to medications at all. I just want to know if this will ever go away or is it some kind of permanent disballance caused by medication. The half life of this drug is stated to be 21 hours so i am hopeful that in 42 hours it will wear off but my mind is so fogged that it really feels like this is forever at the moment. Is it possible that the effects are permanent? Thanks!
Wow Marina, I hope you will recover. 21-hour half life means that it will take about 5 days for the drug to completely clear. 21 hours first half. The next 21 hours, half of the remaining half… and so forth.. so in 4-5 days most of it will be out of you. Good luck! I hope all will clear!
I was on topamax about 4 years ago, can’t exactly remember. I was on it for a few months. I was taking it for migraines and within a few weeks of being on it I was taking 200mg. The side effects were horrible. My taste buds were messed up, my hands went numb all the time but the worst was my speech and it was like I could not think right or even respond to questions correctly. I do suffer from long term effects with my speech and thought process. I struggle with being able to say words correctly or even being able to say the correct word. Usually, I just give up after running through a few words and the right one has not came out of my mouth. Thankfully, my family understands and helps me when I can’t get my words right.
I am so sorry that you seem to have some permanent damage. I hope you have reported your adverse reaction to the FDA adverse events reporting system. I hope you will consider joining my Facebook migraine group, where we focus on helping you learn how to prevent migraines. We have also seen tremendous improvement in terms of cognition and otherwise in all of us (I am a migraineur as well). So I recommend you join us and let’s try and see how much improvement we can achieve! 🙂
Best wishes to you,
I get this, more than you know. I was put on Topamax for severe headaches that only started with menopause. I mentioned the horrible brain fog I was having. Not one Dr .tied it to this drug. One wanted to send me to a psychiatrist. I finally realized that it started when the drug started, researched. And stopped taking it. I was on 200mg.
It’s been 2 weeks, and no improvement. I’m job hunting, and have yet to make it through an interview without awful brain fog kicking in. Its beyond embarrassing and obviously, I’m not being offered jobs. I don’t know what to do.
This drug can cause damage to the brain–often permanent. There is more you can do though. To help your brain recover, you should try the low carbohydrate diet–best is the ketogenic. It is used even for Alzheimer’s disease with great success. So try it. 🙂
I was prescribed this to “quit” drinking, was not told about any side effects. I was asked if I wanted to try a medication to quit drinking and I was like, why not. I’ve had it for over 2 weeks but I’m always hesitant about taking any meds when I first get them, so I finally took the first pill last night. Confusion, disorientation, inability to focus at all, drowsiness, dark thoughts which made me really anxious, so I decided to sleep it off. 2.5hrs later I woke up with a headache, came online looking for answers and found your article. Thank you so much for posting this article. I had no idea this was prescribed for bipolar disorder, weight loss, migraines, and to quit drinking, how can one pill do all that! That’s ridiculous and insane.
For those that have benefited from taking topiramate/topamax. I’m glad it’s helped with whatever health problem you’re dealing with. But this is not a “one pill cure all”. I’m definitely not taking this again after the side effects I experienced.
Thank you for the information Angela!
Wow Carlos, thank you for your comment! You are completely right: one drug cannot possibly do all these things! In fact, it is not really working for any one of those things… I am glad you stopped.
I am very sorry about your case of possible alcoholism, for which you need help. I am not a specialist in this field but I understand that alcohol (like sugar) uses dopamine receptors to make you feel good. It follows that eating foods rich in dopamine may be helpful. Here is a list of foods that may help:
Dairy foods such as milk, cheese and yogurt, unprocessed meats such as beef, chicken and turkey, Omega-3 rich fish such as salmon and mackerel, eggs. This I took from here. Most articles recommend eating lots of protein–and make that animal protein, since they are complete (meaning all essential amino acids are in hem). Two amino acids are used by our body to create dopamine: the essential amino acid phenylalanine and the non-essential amino acid tyrosine. Every food has tyrosine but only animal products are guaranteed to have phenylalanine.
I hope you find this helpful.
I’ve been on Topamax for around 13 years – since I was 36 – prescribed for migraines. Initial side effects lasted a month or so and migraines were controlled. My dose went gradually from 25mg up to 100mg daily. About 6 years ago I started experiencing MS-like symptoms as well as a multitude of other systemic problems (GI, sinus/respiratory, chronic fatigue, fibromyalgia, cholinergic urticaria, exercise intolerance, weird visual disturbances including permanent migraine aura). Dozens of tests and specialist consultations failed to deliver a diagnosis. One neurologist said the neuro symptoms were a different type of migraine and my Topamax dosage increased to 200mg. Progressively, I have become worse since then. Most recently I have been dx’d with delayed gastric emptying/gastroparesis, gastric and esophageal dysmotility, reflux aspiration. Currently I am experiencing severe difficulty swallowing (I am also on 20mg Baclofen daily). I was searching for links between my meds and long term side effects and came across this. I’m not sure if Topamax could or is known to affect gastric motility and/or swallowing function but I’m starting a tapering as of today.
If you read the history of Topamax, its start in pharmaceuticals was as a diet pill. So it does affect the GI tract. the stomach, and your entire metabolism. The effect differs and some people lose a lot of weight, so gain a lot of weight, and other get serious stomach issues. Gastric delayed emptying (gasteroparesis) has several possible causes. One is associated with the pincers not working properly but the there is more important: the reduction of the acidity in your stomach to the point that digestion is impossible. This is the time when food simply doesn’t digest.
As you know, I am not an MD and provide no medical advise or recommendations, but I can tell you my experience with others who have been through similar and were also migraineurs so they were following my migraine protocol. The protocol itself is a major nutritional change and what we found is that in those cases where gastroparesis was caused by drugs (as opposed to genes or illnesses), it is reversible. What is needed is a different nutritional approach.
Since you are a migraineur, I recommend you join my Facebook migraine group and learn how to prevent migraines and medicines by nutritional means and hopefully the delayed emptying is reversible.
And please do not quit Topamax cold turkey. You may end up with seizures. Please reduce slowly–taper according to doctor recommendations or slower.
I am looking forward to seeing you in my group,
I agree. I’ve been on it 5? Years with a cocktail of Botox. I had the worse acid reflux but I was also obese. I started losing weight too fast and couldn’t stop it between the throwing up nightly and topamax. Then I started to level off them would go through spurts. They sent me to get some test done by a neuro and he upped my topamax too high. I was in a fog. For 2 months. My doctor made him lower me back down and took me away when the test were done. But I lost over 100 lbs. and between the Botox and topamax I went from everyday extreme pain to maybe when it rains.
I learned to adjust to the side affects and work through the ones I can’t control.
But they are winging me off now. And if I need something other than the Botox we will look at other options including homeopathy
Sometimes you have to out weigh the side effects if it works. And not everyone gets all of those.
I’m no MD. But most of those items you mentioned work with the brain in one way or the other correct?
The problem is doctors prescribing them incorrectly. Not because it won’t work. I have a friend her doctor gave it to her as a sleeping pill as needed and to take as needed for headaches. ?♀️
You wrote “Sometimes you have to out weigh the side effects if it works” but this is the wrong attitude. A drug–if it works–should not cause damage first. Just think for a moment: why woudl something have to cause damage to make you feel better? Does that make any sense? Not to me. Plus, there is an alternative. Most of our diseases that are not infectious diseases are caused by our lifestyle. If changes in our lifestyle can reduce and even prevent a condition that causes pain or depression or even cognitive decline, than why wouldn’t we just simply change our lifestyle?
The inability to sleep, headaches, and a host of other conditions for which people take drugs for are all preventable by changes to what we eat and drink and how often, how much exercise we get, how much time we spend on the sun and relaxing, etc. We cannot change everything but we can change enough to be able to live a life without pain–even migraine is preventable. So why not just prevent it?
Angela, I agree. I much prefer to not be on medications! I have trigeminal neuralgia I try desperately not to take any medications I am on Oxcarbazapine and Topiramate now for about seven years. It’s odd because I now recently I’ve gotten a rash around my flank area. I have gotten rashes in my life I do have dermatitis issues. So this incident is hard to follow. I know both of these drugs have skin allergies but I can’t imagine I would all of a sudden have A skin rash outbreak this many years later. I definitely would like to taper off of these beds but I am on the lowest dose of both. I am afraid of getting kidney disease and eye vision loss as the long-term permanent damage. I’ve tried to wean myself off one or both of these a different times but my pain has come screaming back. I am purposely on the lowest possible introduction dose as possible. I I am intrigued by the science of your toast and would like to join your FB group. It seems we are always left to our own research. Would love to find a physician that practices holistic health in addition to MD science.
We would love you to join us in my Facebook group, which you can find here. We can help you with trigeminal neuralgia–this is something many migraineurs have. It may not fully disappear, but it may. It will most certainly be much better than what it is now. And we can most certainly help you get rid of those rashes and any skin problems. All migraineurs also seem to improve their kidney status, so that’s one additional thing that we can work on.
I am looking forward to seeing you in the group,
Did you experience hair loss well?
From the reports I get from migraineurs who used to take Topamax, hair loss was a common complaint.
I’ve suffered from migraines for 30 years. For the most part they were manageable (with rescue medicine, going to bed) and sporadic with only a few headaches a year unless I had periods of a lot of stress or major hormonal changes. That all changed about 18 months ago. My headaches increased in frequency to 2 to 3 per week. I am unable to function when I have a headache. I had tried topamax in the past and experienced the unpleasant side effects, brain fog, etc. I am now on Trokendi XR, it is much better tolerated, there was some unpleasant brain fog at first, whicH has lessened over time. But my headaches are gone. I am able to function. I have my life back. I will take some mild side effects to be able to keep my job and be there for my family.
I understand that you will accept a little side effect–which you hope will reduce over time–in exchange for a pain free life. But you can have a pain free and medicine free life. Thousands already do. Why not see what we do in the migraine group on FB and see if you want to try? You may also want to check out the testimonials page. The group is completely free and you have nothing to lose by checking it out. 🙂
Thank you so much for writing this article. I was prescribed Topiramate for weight loss and have had too many issues to count. I talked to my doctor about the side effects and she told me to stop cold turkey. She didnt give me any information about this drug, so I didnt question it and had horrible withdrawal symptoms for days. I’m glad to see I’m not going crazy and these things happening to me are real.
Wow, so sorry that your doctor told you to quit cold turkey. It is definitely not the way to go. If this was just very recently and you still have some Topiramate, it is best to return taking it at a lesser dose. Normally I would suggest you discuss an easier tapering with your doctor, but clearly this doctor has no knowledge about this drug. Are there any other doctors you can talk to who will help you taper slower?
I wish you well,
I’ve been on Topamax for over 19 years and I’ve never had any problems with it. (Knock on wood) I take it for both seizures and bipolar disorder. I also suffer from migraines but I really don’t think it helps with those. I tried every other medicine and nothing worked. So I get there are people that are angry about Topamax. But it’s helped some of us also.
I am sure it helps people with seizures. The drug is an anticonvulsant and that is very specific to seizures, so if you have seizures, Topamax may be wonderful! The problem is that it is prescribed for all kinds of other things that it is not meant to work for–such as bipolar or migraines. It is in cases like this that Topamax becomes very harmful.
I’m on it right now for Hemiplegic migraines….
Very sorry that you are taking it, given how much trouble it causes.Should you decide to change, join us in the Facebook migraine group.
My goodness, am I glad to have found this article today!
As of a week ago, I finished weening myself off of 100mg a day, after what felt like months of torture full of confusion, lack of understanding, pins/needles, stuttering and not being able to find my words. And I was prescribed this by a doctor who I had never seen before and most likely didn’t even look into my history… but at first I took her word for it because she is the “Professional” who was taking my usual Doctors place, (quite randomly I may add). This was at a Pain Management facility. She prescribed it for my migraines and back pain.
What made it all so hard was I was in the end of my second semester of College, so by the time I started the third semester, I was at the 100mg per day and could NOT focus. I could barely function what so ever and NOTHING that anyone would say to me, would stick with me or barely make sense. And I have ADD already as it is… I thought I was losing my shit! And in the first 3 weeks or so of being on the medications, it was as if I was Bipolar!
I am disgusted by all of this. Yes your article is not a “one size fits all”, and hopefully it helps more than not (for peoples health and sake), I don’t see much of that happening. But I truly believe that your article is n point! I had SO MANY of those symptoms and honestly for the first time in my life, I contemplated very dark moments because of how this drug affected me! And that says something, considering the fact that I have depression, anxiety, panic disorder and PTSD.
One of the classes that I am in is “Understanding Substance Abuse”, for my Associates in Human Services, and your article couldn’t have come at a better time considering my own research into the medication for in AND outside of the class. (Well, maybe a better time would have been BEFORE I took the medication and the Doctors word for it.)
I am sorry about all the trouble you went through and am glad you found this article. I most certainly hope that you will join my migraine group on Facebook, which can help you learn how to become migraine and medicine free! Migraine is preventable. Please join us!
Reading your article and all the negative comments I was convinced to never take this medication until my MS symptoms became so bad I decided to take the chance and ever so glad I did.
There are many, many reasons why this might not work for some. Current medications or undiagnosed health issues or deficiencies.
Sitting in a brand new car everyday breathing in bromide is bad for you in many ways and yet you still do it. Along with laying on a mattress, eating white bread, using fluoride, having x-rays, mammograms and so on. This article is ridiculous in so many ways. For you to say this medication only benefits a few is a stupid statement. You are scaring people that could potentially benefit from this medication. I was almost one of them. This medication took away a constant headache that never went away for 8 months and was worse when laying down. Constant muscle twitching all over my body for 8 months along with painful lower leg muscle cramps, sharp stabbing pains all over my body, loss of feeling in legs and hands, pins and needles all over my body, and ringing in my ears. The only thing it hasn’t helped with yet is the double vision but I’m still hopeful. This medication has been a blessing to me. Yes, I had a loss for words in the beginning but backed off the initial dose a little and started slower and it was better. I do feel a little more cold than usual and sometimes my hands and feet get a little tingly and soda is flat tasting. Small price to pay for how much it’s helped me.
There are a few people for whom the drugs made do wonders. They are the lucky few who should continue taking them. This though doesn’t represent the majority and they should be informed. Your examples are perfect, because, as you state, you know the danger associated with those activities. If you still choose to drive in a car and dare taking a breath, etc., you are informed. And this is a very important point. People starting drugs–like Topamax–are more often than not are not informed. If you get harmed by something you did based on your conscious decision is very different from getting harmed by something you could have prevented, had you been told the dangers.
Best wishes and I hope you continue your recovery and well-being,
Just like with anything, one size does not fit all. This article is very good for those of us that received a bad reaction to this medicine. If I had known about these side effects prior to taking it I would not have gone near it. Who wants to deal with cognitive or vision issues. You are very fortunate that you don’t have to deal with what I and many other sufferers are going through. It is definitely no fun and I truly regret ever taking it. So for anyone to say the article is stupid or it’s stupid to provide the information is not good especially when so many can and have benefited from the information.
Thanks TJ. Indeed, the majority of people do benefit from my articles warning of medicines and their adverse effects.
Some people who do not have adverse effects and benefit from the drugs tend to see through a narrow window around “self”. They feel that if they are well, everyone should be, and all else is silly and stupid. Over the years I have come to accept these statements to the point that I didn’t even notice that Amanda wrote
which, indeed, was a rather self-centered comment. Thanks for pointing that out and I hope Amanda reads your comment. <3
Reading this article made me so angry but I’m so glad that someone is putting the information out there. 9 months ago I was in the hospital with vertigo and potentially a migraine and neither were responding to medications. My ENT then told me about topamax like it was a miracle cure all drug that would fix all my symptoms if we just found the right dose. The only side effect he ever said I would have is possibly some tingling in my hands and feet. Fast forward many dosage increases and multiple specialists later I’m worse than before. My ENT has decided there is nothing he can do to treat me and so I should continue with the drug but go to other specialists for answers. Fast forward to january 2020 and with all the new fun symptoms (turns out they’re side effects) I am now considered disabled and spend 20 hours a day in bed. All my many doctors tell me it’s the progression or worsening of whatever I have which a slew of tests and retests over 9 months hasnt diagnosed. Theres been many theories but theyre still “ruling out” options and cant treat any of the symptoms, cough side effects, or pain in the meantime.
Then, logic happened. I decided if I’m only getting worse and doctors dont seem to want to help me I need to help myself. I decided theres no reason to keep taking this “miracle” drug topamax anymore, it’s obviously not living up to the hype. I started tapering off it 25mg a week on my own- which I dont recommend but my doctors see me nearly weekly anyways. Now I am down to 50 mg a day and 75% of the debilitating symptoms I had are gone. I still have a few but I genuinely think once i fully come off this drug and detox I will be fine or be left with a managable or treatable level of symptoms.
Topamax ruined my life. In 9 months I lost my job because I was unable to work, fell into near financial ruin, lost my ability to drive, failed 3 classes in college (goodbye 3.9 GPA), and fell into the deepest depression of my life. All of this because a doctor prescribed Topamax as a Hail Mary when they couldn’t diagnose what was happening to me.
Doctors- dont do this to people! This is doing harm! You took a f$&%/g oath, try to remember it before you give something to someone that isnt intended to treat what they actually have. My body is not your experimental playground.
Thank you for your amazing note on what happened to you. Congratulations for having the strength to go through that and for tapering off this monster drug. My question to you is this: have you contacted that ENT to tell him what you discovered? And why did an ENT prescribe anything for migraine? It’s not within the scope of an ENT to do that. How odd from the start! I am glad you are recovering.
One more thing: migraine is 100% preventable. I have a couple of Facebook groups with thousands of people doing just that–I myself am a migraineur and have not had migraines for a long time–I only do if I change my lifestyle. So why don’t you join us in our main group? You can find it here. Our service is free and it includes no medicines or supplements (unless you blood test shows you need to supplement something). We have had great success over the past 5+ years. Look at some of the testimonials.
I am looking forward to helping you in the group,
Hi! I went through the same thing, but was not prescribed topamax. It turned out that I was battling at an active Lyme disease infection—the neurological kind. I’d highly recommend you find a Lyme Literate MD just to rule that out. I’m so sorry to hear about all the pain you have been through in the last year.
I agree. As you said, you are NOT a doctor. However, I didn’t see that little fact until after reading your entire article which was pretty scary and where you made sweeping generalizations. You should have stated over and over that if people stop this spontaneously, they can have seizures. Big-time seizures. Please, you are not a medical professional. I see you are a PhD but you are not a Doctor, Doctor. Please watch what you say. I know a lot of people who have been helped greatly on topamax. I know many people on this drug who are very aware of the side effects and have to make the decision of whether to continue or not if side effects become an issue. These decisions are made with their doctors. Maybe you are looking to educate and help? I don’t know?
No blog should ever be used as a decision to stop any medication without doctor’s help. We and I never ever recommend anyone to stop any medication. My intent is to inform and educate and that is clear from my writing. I do recommend not starting any medication without fully understanding the consequences of takign that medication. Because doctors (MDs) very often don’t tell their patients what they can expect–either because they don’t know of because they are ignorant–and because even the labels included with the medication often are the reduced “patient” version without any of the warnings and side effects, this article (and all others I write on drugs) is to inform about what is on the label.
I’ve been prescribed Topirimate for migraines but I believe I may be experiencing a side effect. I was on Topirimate in the past and tapered off and started back in October of 2019 and just started having weird symptoms I believe are related. I am also vegetarian and not sure if this is related. But since started Topirimate again in October I am not experiencing muscle twitching throughout my whole body. Not just an eye twitch like some people. But everywhere; arms, legs, feet, hands, back, stomach head, face…literally everywhere. I’m afraid it’s from the Topirimate but I can’t seem to find this as a side effect o my eye twitching. Can you help!!
Muscle twitching is one of the listed adverse effects of Topamax, see here. Scroll down to the adverse list for professionals and yo will find this:
Common (1% to 10%): Arthralgia, muscle spasms, myalgia, muscle twitching, muscular weakness, musculoskeletal chest pain
Uncommon (0.1% to 1%): Joint swelling, musculoskeletal stiffness, flank pain, muscle fatigue
Rare (less than 0.1%): Limb discomfort”
I bolded and italicized muscle twitching.
If you are willing to try a medicine-free approach, please join my Facebook migraine group here.
Thank you so much. Yes I am willing to take a medicine-free approach. Does this work for Vestibular Migraine as well? I just joined your group. I am hopeful I can get some good answers. Not all doctors are good with trying to help medicine-free ways to heal. I really do appreciate it
Yes, this approach works for all migraine types. 🙂 Welcome to our group.
It was prescribed to me for Mood Disorder. I was and still am in a dark place. Lithium made me gain 30lbs so the doctor prescribed Topamax 100mg 2x a day. I started it mid September 2019 , I still feel really depressed? Haven’t left the house in months. I Feel like the doctors aren’t listening to me. The numbness in my feet and hands went away after a month and a half. I’m always cold, I’m usually always hot? My eye twitches like crazy. All carbonated drinks taste flat! Recently as of a month ago I started to itch all over. I itch like crazy. I scratch myself so hard it creates these rash like bumps all over my body. If it was the topamax wouldn’t it have started instantaneously? Not months down the line ? It has helped reduce my sweating and I’ve lost 14lbs. Just can’t be certain if this itching is caused by the topamax? It’s pretty unbearable. There’s been no change to my diet or soaps. Nothing of that nature. I also think I’m still really depressed and it’s not helping me.
Very sorry to hear what you are going through. Topamax is not for depression–no idea of why anyone would give that to you for mood disorder. It is a medication used primarily for seizure disorders and secondarily for migraines. Originally it was sold as a weight loss drug, but that failed because of its side effects–though that is the part that helped you lose weight.
Allergies can develop over time because your body may have reached a tolerance limit. There is also such that I call “co-allergy” for the lack of a better word. This can come up when you have an autoimmune reaction to something you eat all your life–a good example is grains–and while you may not show any signs of grain allergy, you may come down with asthma, arthritis, psoriasis, Crohn’s disease, and a host of other conditions, all because you are allergic to grains. Unless you stop grains, you will never know that all your health issues would go away if only you had simply stopped grains. This actually happened to me.
The important thing is that something like this can take years to develop and you really will not know what happened unless you get on an elimination process. I highly recommend you eliminate all grains from your diet–this includes more than just gluten. Read this article for details.
In terms of mood disorder, search the internet for the experience of others but there are millions of people switching off grains and all carbs in some cases and they cure their mood disorders, can come off all medicines, and lead a perfectly healthy life. Look around and search what people do. Look for Mikhaila Peterson – The Lion Diet and also same on Facebok.
And I recommend you discuss with your doctor a slow taper from Topamax–be sure it is slow. A sudden stop may end up giving you a seizure.
Topamax is a mood disorder medication but it is NOT an antidepressant. If someone is on it that has bipolar disorder and has depression they may need an antidepressant.
Depression is a mood disorder. So any drug that is for mood disorder, is immediately automatically for all mood disorders, including depression. However, Topamax is not a mood disorder medication. It is very specifically an anti seizure medication.
Hello, my daughter is 4 1/2 and is currently taking 40mg of Topiramate 2x a day (compounded) as well 12.5mg of clobazam daily. She was started on Topiramate early last year after a plan was made to taper Trileptal. Genetic tests showed a sodium channel variant (Sc1na) in her brain. Since she was having long (45min-2hr) seizures doctors increased Topiramate to 60mg 2x a day. Her seizures are now under control (8 months free) altho she still has daily absent episodes. I believe she is seizure free since the Trileptal is out of her system. My concern is that since last summer she has increasingly been having a challenge with temperature. When she cries, runs around, exposed to humidity or heat her upper body (scalp, face, neck, upper torso & along spine) becomes painfully itchy. She digs into her skin to the point she leaves scars. We got her a cooling vest which helped at first but now her head and neck are being affected more. This summer she started having issues with the cold. While in the pool her lips turned color and she began to quiver uncomfortably. We had to limit her time in the water & wrap her in a Terry cloth robe. I’ve spoken to her Epilepsy Neurologist and she assured me it was not a side effect of medication. I’ve been pushing to decrease the Topiramate. Lowering dose on my own accord & slowly getting doctors on board. I am worried how she will tolerate this winter.
Very sorry to hear about your daughter having such horrific health condition and having to be on Topamax since such young age. Unfortunately your hunch is correct and her doctor is incorrect. I have met several people already who had the same side effect. Because Topamax blocks the voltage gated calcium channels–and to some degree the sodium channels as well–it may have serious side effects, some permanent.
In fact, your daughter’s adverse reaction is on the label–all the doctor would have had to do is read the label, something she obviously didn’t do–I bolded the one that is relevant for you:
I would recommend you consult a different doctor, report the adverse reactions here, you can file online, call them by phone, send them a letter. You should also call Janssen Pharmaceuticals, Inc. at 1-800-JANSSEN (1-800-526-7736) after you reported to the FDA.
And, most importantly, change doctors. Her current neurologist is not aware of serious side effects of one of the most common drugs she prescribes… That’s not a sign of professionalism and knowledge.
Best wishes to you and your daughter,
Thank you so much! Since the medication is compounded we have never received an insert like we do with the medication clobazam. Only a very brief print out attached to pharmacy bag which doesn’t have many side effects printed. I see that Erythema Multiforme is also listed. She had high fevers that reached 105 in January it resulted in horrid rashes. She swelled up, eyes shut & could not open, couldn’t walk or urinate or barely eat. We were in hospital for 14 days. Doctors thought it was Kawasaki but ended up agreeing on Erythema Multiforme Major. We were told it was the worse pediatric case John’s Hopkins Hospital (baltimore md) has ever encountered. They never gave reason why it happened, possible immune response to an infection. I wish I could attach pictures. Now that I think about it during all those high fever episodes she never sweat. They visited medication reaction since it was so bad but it was ruled out. I am literally speechless that her body’s inability to sweat & regulate it’s temperature due to Topiramate was never even thought of. John’s hopkins is a world renowned hospital with national recognition. Scary.
You are welcome Dionna. You may not have received the package insert but the doctor who told you that the thermal control side effect of your daughter is not from Topamax should have known! It is her job to know serious interactions–especially with pediatric patients.
I must say that I am scared of all “world renown” and “world famous” or “best known” or “most famous” designations. I have yet to find one that truly lives up to this title–this including both doctors and institutions.
I wish you best of luck and hoping she can regain her lost sweating ability (thermal control). She is young and she may regain it but may not. There is no way of knowing.
Hello. I am responding after reading this article and I am hoping that you will give me guidance. I started on Topamax in 2007, 50mg for migraines and it’s increased over the years to 200mg. I have so many of these symptoms I don’t know where to begin. The most notable, my vision is terrible and it had been perfect before beginning Topamax. I have no memory, eye twitches, brain fog, all of it. I’ve had heart issues out if nowhere… just crazy. My latest problem is my spine which I wasn’t thinking would have anything to do with this medicine. Could it? I think I have developed deteriorated disc disease. I guess my fear/question is how do I even get off this medicine after 12 years? Will I ever be the same person I was?
I am very sorry to hear how Topamax is affecting you. Whether you can come off Topamax or not depends on why you started taking it the first place. If migraines, there is no problem slowly tapering off of it–using your doctor to guide you. If for seizures, the reduction may not be possible because it is controlling your seizures–unless you find a doctor who endorses the ketogenic diet for seizures, in which case you will need to be under medical supervision, since ketosis and Topamax interact and there is a black box warning on Topamax label to not use it in ketosis.
If you can taper off as per your doctor, whether and to what degree your brain can recover is dependent on many factors, including age, diet, physical activity, general health, etc. Since Topamax is brain degenerative, not everything can necessarily be reset in the brain to the same degree as it was before you went on Topamax, but much improvement can be had. And, indeed, it eventually affects all of your organs, since every organ in your body, is, ultimately, directed by your brain.
It’s been a couple of years since quitting topamax after using it for 7 months.
Because of keto i did recover a bit but still i dont feel like who i once was.
Also the lyme disease unfortunately did became chronic and is also though to deal with.
Do you have succes recovery stories of people dat for a big part did recover (when looking at cognitive functions, personality, etc) from topamax with keto and fasting after multiple years?
Thanks a lot and kind regards,
Most people I know have recovered most of their original health–I think one person had permanently damaged her “thermal control” center and cannot sweat. What length of fasting are you doing and how long have you been in ketosis? Lyme should also respond to autophagy associated with fasting but it is dependent on the length of fast and what you eat in between fasts.
Thanks a lot for your quick respons.
This does give hope and motivates.
I fasted once for 4 days and sometimes for 2 days, and only drank tea, coffee and water. I also did intermittent fasting on a regular bases by only eating once every 24 hours. I also cut sugar and try to eat fat mostly out of non meat products. I did eat a lot of cheeses, and maybe that’s not good for lyme.
I receantly bought the book “ketotarian”, wich gives a more plant based guideline for keto (and i think is better for battling lyme disease).
Thank you again,
OK.. I see several problems here and why, potentially, you are not improving. First of all, while I am aware of vegan/vegetarian ketogenic diet and that you can enter ketosis that way, the health benefits are transient because your ketosis is also transient. Every time you eat, you reduce your level of ketones, because all plant-based foods are carbs–without exception. The plant-based diet is also insufficient in many essential nutrients that are particularly important when you are in cellular recovery mode.
In particular, we are focusing on repair of your brain. The brain is nearly entirely made from cholesterol (made by the brain) and animal fats (such as EPA/DHA). While the brain can make cholesterol out of carbs, getting to EPA/DHA from it’s precursor that is found in plants, such as flax, in great amount in ALA form is not possible. The human conversion rate from ALA to EPA/DHA is a dismal couple of percents for females and less than a percent for males. It is an enormous task for your body to convert ALA to EPA/DHA and you literally woudl have to eat flax seeds all day to have your body get to some descent levels, and obviously you cannot do that.
In addition, a plant-based diet seriously lacks a lot of vitamins–like B12–and even those vitamins that are available, such as vitamin A (beta carotene) or D (D2), are in precursor forms that need to be converted by the body (beta carotene to retinol and D2 to D3) and many people are genetically predisposed to be unable to do that–I am one of them, for example.
So major problem #1 is that you are plant-based. Plants also contain a tremendous amount of antinutrients that reduce the bioavailability of their nutrients, including protein. And the ketogenic diet necessitates an 80% fat diet, and not sure how you could have achieved that with a plant-based diet. Plus the protein from plants is only bioavailable at 65% and most plant-sources protein is incomplete, meaning it doesn’t contain all amino acids or in the wrong ratio.
The #2 problem is that you drank coffee or tea. I know that there are 2 opinions about this. However, in my migraine group we had members drinking black coffee during the fast as we ran what we call the 5-hour blood glucose and blood ketone test. It became clear that coffee spikes blood glucose and also insulin (ketones are surrogate markers for insulin). While we don;t drink tea at all in any of my migraine groups so we could not test tea, there is no reason to believe that tea woudl be any different from coffee.
So that means that you never really fasted but always broke the fast by coffee or tea. Also, drinking only water is not sufficient. In ketosis–particularly at the beginning–you lose a lot of salt so you need to replace salt. the migraineurs I work with and I take a lot of salt and also a lot of water in ketosis. Even more while fasting.
So I would recommend that for the sake of healing you may reconsider your options and choose according to what you wish to achieve. I don’t believe–and please don’t criticize me for this–that a plant-based diet, which is not native or natural to humans, will be able to provide you the cure you are looking for, which should return your brain to baseline, which it was before you took Topamax. To return to that baseline, you need to return to the most optimal human diet, and that’s meat.
Thank you again for your time and informative respons.
I can do all this (i want to, because i want to recover). Eat more meat, stop drinking coffee and tea during fasting and drink water with salt (i already did that).
The one thing that comcernes me is that eating a lot of meat and not much plants, would be too acidifying for the body. Also the borrelia bacteria that causes Lyme would do good on this.
But i m going to try keto again with your advice anyway and look were of brings me, because i would give anything to feel like myself again.
Thank you and kind regards,
Lonneke, meat is not acidifying. The pH of plants is much lower (more acidic) than that of any animal products. Please google the pH of any food and see that the average pH of plants is between 3-6 (acidic, with pH 7 neutral) and the average pH for animal-based products is 5-7.
The fewer carbs (plat-matter) you eat, the better it is in terms of getting rid of health conditions, autoimmune diseases, and recharging your body.
I was in ketosis for 6 months straight.
Hi Dr. Stanton, I have been on Topamax for seizures since 2001. It has co tolled my seizures so so well on the smallest dose I have just dealt with the side effects. Which honestly weren’t as bad as many other drugs I tried over the years. Then I found this article.
I realized somewhere around 2006-2007 I started to lose some finger joint function, thinking it was arthritis, I didn’t do much about it. Years have now gone by as its progressed much worse during all my child bearing years, but it doesn’t act like arthritis, each knuckle is just slowly freezing up. Not a lot of pain. You have me wondering if the Topamax via whatever calcium blocking mechanism is depositing calcium in my finger joints. I really only have free range of motion in three fingers left. Is this possible?
It is possible but there are other factors as well. Diet–particularly certain nutrient factors–may also be to blame. I had similar arthritis in a couple of my fingers on each hand–swollen too and hurt–when I quit grains for some unrelated reason, and wow, my arthritis went away! Since them a host of other “diseases” went away that were clearly driven by eating grains–not glutenous but any grain, including corn, oats, and rice. In addition, if you are not eating a fat-heavy low carbohydrate diet, then calcium from your food may also build up in your blood and end up collecting in you joints–this chance greatly increased if you supplement calcium but even if you don’t, plants have a lot of calcium but not enough fat. And calcium is a fat-soluble mineral.
In our modern diet of high carbohydrates, eating enough protein and the right kinds of fat is difficult. It is difficult also because of the kind of fats most people consume: vegetable oils. Vegetable oil–while they certainly lower cholesterol, which is another problem–are not animal fat and our body cannot use them as such. I work with many people and their overall health markedly improves when they stop grains and sweeteners, increase animal protein and animal fat in their diet. Yes, as counter-intuitive as this may sound, the same happened to me.
So I recommend you look into nutritional changes in your diet and then after that see if you still even need Topamax. The people I works with (several thousand) have all been able to come off of all their medicines since all their pains are gone. Do not quit any medications–always discuss with your doctor how to taper off.
I have severe seizure like migraines, which I had 24/7 before starting Topamax. They made my life unbearable. It does have severe side effects but they are not as bad as the living hell the migraines were.
For the rest of the silly of label things doctors are prescribing it for – including bipolar, which I think they actually were sued for advertising about, since it was proven to not work – I can’t imagine how they get anyone to keep taking this. If I didn’t have a very serious condition, I sure wouldn’t take this just to lose ten pounds. It’s a very powerful drug. But I have a very serious condition. This drug is not to be taken lightly. If you need to lose weight go on a diet. If you have bipolar, take something else!
I totally agree! It is a very serous drug with amazing side effects–some long term and some permanent–and they do hand them out like candy. Not sure what you mean by seizure-like migraines? Do you get seizures? I have a large migraine group specifically to learn how to prevent migraines, which works extremely well for all–though I have not yet had anyone join with “seizure-like migraines”. You may want to check us out on Facebook.
My hubby gets bad migraines, what can he do?
Have you hubby join my FB migraine group and/or read my book. 🙂
I was recently prescribed topamax for menstrual migraines. I migraine for at least half the month between my ovulation and period migraines. The pharmacist made a mistake and gave me 100mg pills to start with when I was only prescribed 25 mg. It was 6 days of feeling like I was out of my mind before I couldn’t take it anymore and contacted my physician. We figured out the problem and got me back to 25mg and now to 50mg (the rule is to build up slowly to 100mg with topamax for migraines). But reading about topamax more and more, I’m afraid to be taking this drug. I know my research says that it take up to 3 month to see the benefits and that I have to be on 100mg a day before seeing benefits, but my migraines so far while on topamax have been even worse. I need to find a solution to my migraines as I cannot live in pain and nausea in my closet for 16 (or more) days out of the month. I just feel desperate and don’t know what to do.
I have been running a couple of Facebook migraine groups very successfully for over 5 years, helping migraineurs learn what migraine is, what causes it, and how to treat it and completely prevent it without taking any medicine. So far over 5000 migraineurs free from migraine by understanding the cause and changing their lifestyles. Please join the FB protocol migraine group, the main group, which helps you learn the basics.
Looking forward to seeing you in the group,
Dr. Stanton, I happened upon your article, and have been reading through readers responses. Thank you for your research. I have been on Topamax since 2010. My husband insisted I take it because I had mood swings. Well I was able to lose weight on it, so I stayed on it, even though I knew I did not have mood swings. I am starting to have issues, I cannot tolerate hot, I am fatigued, my digestion worsens every year, I take 50 mg., twice a day. I also have a eating disorder, so I have been afraid to get off of it, but it does not seem to keep me from eating anymore. I was going to see if my doctor could switch me to Wellbutrin. What is your opinion, are you familiar with this medicine?
Wellbutrin is a very different drug from Topamax. While Topamax is an anticonvulsant–meaning against seizures–and blocks voltage gated calcium and sodium channels, Wllbutrin is an antidepressant and inhibits dopamine and noradrenaline re-uptake. Re-uptake inhibition is a dangerous thing, please read my article on such reuptake inhibitor here. In that article I explain how it works and why it is a killer. While that article is about serotonin (SSRI) and Wellbutrin inhibits dopamine and noradrenaline, since the mechanism is the same, the outcome is a damaged brain.
I understand that having an eating disorder is a major concern, but I think there are better ways of handling that then to take an antidepressant, which will not help you, only harm you.
I don’t know about your husband, but if my husband noticed something off about my mood, he would try to help me find a non-drug solution. I am not scolding your husband in any shape or form, but I think trying to help by creating a healthy environment for you–by him and by you–has much more benefits. Mood disorders are now starting to surface to have carbohydrates as their underlying cause. Perhaps you can try to reduce or eliminate carbs from your diet and see how you respond. It is not easy to reduce or eliminate carbs; carbs are very addictive, but clearly that is one factor that can cause major mood disorders–and also eating disorders. You can also seek non-drug medical help for eating disorder–look for a psychologist who can help you.
The sad thing is that when you look at all these side effects regarding voltage gated ca2+ channels caused by this drug is that patients routinely undergo MRI’s with contrast. The contrast agents are called gadolinium based contrast agents (GBCA’s) Gadolinium is a lanathide heavy metal (atomic number 64, Gd3+) which is extremely toxic in vivio.
It is also the most potent Voltage gated CA2+ channel blocker known to man.
The scientists decided to tame the lethality of this element by putting a chemical cage around it called a ligand. There are two types of GBCA’s linear and macrocyclic. The “cage” like structure for linear does not completely surround the element and macrocyclic does. Big pharma maintains that these GBCA’s are eliminated via the kidneys within 24 hours. However that is false and they knew this back in 1988.
GBCA’s when they undergo transmetallation (lose their cage) are retained for life, They have an affinity for bone, brain and tissue. Currently, researchers are scrambling to find an effective chelation agent and current research into HOPO is promising. DTPA is currently used is limited success and some studies indicate that it would take over 100 years of DAILY renal dialysis and chelation to remove one dose of GBCA from the body.
Gadolinium based contrast agents destroyed what little life I had left after being poisoned by fluroquinolones (cipro and levaquin).
Some people experience side effects from GBCA’s immediately, however most experience it after a few weeks to months and never associate their failing heatlh to a supposedly safe contrast agent,
In an unprecedented move to stop the lawsuits all the major manufacturers authored and signed a warning letter in August of 2018 that pTients should b advised of the dangers. I bet very few if any have received that warning.
These side effects are scary now remember that once a GBCA is administered you just can’t stop taking it like topimax it is with you for life and the damage will be ongoing.
While what you write is very correct, people only get the MRI scan with contrast when there is absolutely no alternative and the benefits from the Gadolinium outweigh the risks of not getting a contrast MRI.
In contrast to this, millions of people are prescribed Topamax daily for anything, even though the mechanism by which it works is not suitable for the condition prescribed. Topamax should only be prescribed for seizures and nothing else, yet it is prescribed for just about every condition as an “off-label” drug. Thus the magnitude of difference in harm is several magnitude higher than from Gadolinium exposure in MRIs with contrast.
Topamax is exactly as dangerous as Gadolinium and the damage it causes is also permanent.
I was searching for side effects of Topamax and found this page. I have been on Topamax and Lamotragine for a couple years now due to nerve damage from a herniated disc in 2016. I was previously on Neurontin, but had terrible brain fog and weight gain and it really did nothing for my terrible leg cramps I was having from the nerve damage. I was referred to a neurologist who tried several different medications, some that made me crazy and some I was allergic to and we ended up with the two I’m on now. The reason I’m commenting is I’ve started having what I call heart palpitations over the last several months. I assumed my thyroid levels were off as I do not have my thyroid anymore, but they were normal. I also had a short EKG and it was normal. My nurse practitioner said my previous blood work for everything she had tested was normal (several months ago and I go back this month). I am going to contact my neuro today to see what he might say, but I wonder if it could be from the Topamax and/or Lamotragine. I really hate the thought of having to stop these meds as they have been the only thing curbing my leg cramps. They don’t totally get rid of them, but I can function! And the last time I saw my neuro he said these were the last options. I’m 41 years old and I already feel like and old lady sometimes! Do you have any other recommendations for nerve damage/leg cramping caused from disc herniation? I also had a L4-L5 fusion in 2017 because of the herniation.
I am very sorry about your damaged nerve because of disc herniation. Indeed, some of your heart problems may indeed be as a result of these medications. Leg cramping in your case is a clear sign of your nerves complaining about not getting enough sodium pr magnesium or both. The drugs you mention, Lamotrigine and Topamax, are both voltage gated calcium and sodium channel blockers. So not having enough sodium for your nerves makes sense, since those channels are blocked. In terms of your heart, that seems to be a possible L-type calcium channel blocking connection. Neither of these medicines is a selective calcium channel blocker so they both block L-type as well, and that causes the kind of events you feel with your heart. Long term, this may damage your heart.
About Lamotrigine and Topamax: both of these are used off-label for your condition, which is peripheral neuropathy or neuropathic pain. Their primary FDA approved purpose is for seizures only.
All of these combined explain why your blood work is all fine and even your EKG is fine. It takes years of above to accumulate heart damage that shows up on an EKG–especially since an EKG is a short test and is not monitoring your long-term. There are ways to monitor your heart for up to 2 weeks with a sensor attached to your skin–I had that once; very small and can be on you while you shower. It captures your heart I think every minute 24 hours a day for max 2 weeks. However, if your palpitations are very seldom, it may not pick it up at all.
I cannot make any recommendations since I a not an MD, but I can say what I woudl do. I would most certainly try to amend my diet with salt to make up a bit for the salt that these drugs block. Perhaps some can sneak through. I would also supplement magnesium and would ensure that my diet is rich in potassium and other essential nutrients. I would not touch sweetened and processed foods at all. Everything adds up to healthier nerves when one eats nutrient-dense foods.
Good luck to you,
Wow! I am having a hard time absorbing all of this information about the side effects of Topamax, but so thankful to have found your page. I have been taking Topamax for about 10 years for debilitating migraines and had few side effects in the beginning. Around 2-3 years ago I noticed I had a difficult time being in the heat- skin started itching and feeling prickly- even indoors when I work out. I began having random muscle spasms when running or working out with no explanations. Doctors never found a cause so I’ve just dealt with these issues. I find myself with ‘brain fog’ often, but again ignore it attributing it to a busy schedule or not being as young.
A few weeks ago I was in a car accident and suffered head trauma and other injuries. I’m seeing a chiropractor for the first time in my life. Today he told me he is concerned at the amount of inflammation in my body compared to the injuries he’s treating and asked if I was taking any medications. I told him I only take one medicine and I’ve been on it for a long time with no problems! I never told him the name of the medicine, but he said I should look up possible side effects and see if it could cause swelling or joint problems. That’s how I found this page- I couldn’t believe all of these known side effects. I suppose my question would be- if my doctors have never considered this medication to be the cause of my inflammation/joint swelling/brain fog, etc… how will they safely plan for me to transition off of the medicine?
Also- is it safe to stop taking this medicine after 10 years?
I am very sorry about all the damage you experience–hopefully it is reversible or at least can be put to remission. Topamax prevents the voltage-gated calcium and some of the voltage-gated sodium channels from working, thereby preventing communication in your brain. In the brain, neurons (brain cells) communicate by sending chemical messages and this Topamax prevents. As a result, with no communication, the brain experience atrophy. Topamax is brain degenerative.
However, the brain is very dynamic and it can reset after considerable work on the part of the body.
Please do not quit Topamax. Quitting may cause you to end up with seizures. It is not hard to taper off Topamax. Your doctors have instructions from the pharmaceutical companies on tapering guidelines. I works with thousands of migraineurs and I found that reduction too a bit too fast, so I recommend you ask your doctor for half that fast reduction given how many years you have been on this drug.
In terms of migraines: migraines are completely preventable by a nutritional change. You can learn more about it by reading my book and joining my migraine group on Facebook. Glad to help you.
This may be a far reach for help but here it goes…I was prescribed Topamax this week for CRPS (Complex Regional Pain Syndrome), RSD is what is used to be called, I was diagnosed after a hand reconstruction surgery 2 yrs ago at Mayo. Topamax has made me extremely ill this week, stomach headache, but I was hopeful it might help with my neuro burning.
Long story short, in 2 yrs. I have failed Gabapentin, Lyrica, Cymbalta, and a whole list of other meds and blocks they have tried, I have done IV Ketamine infusions every 4-6 weeks since last May and my body built up a resistance in November and then my CRPS went full body. So now I neuro burn full body, so badly at times that I now know why they call it the suicide disease. I need help so badly in order to survive daily and I cannot tolerate medications at all, not even opioids I just projectile vomit them, I have my MMJ card (in AZ) but even that, I have quickly built a tolerance too and have to take so much more in edibles never have smoked) that I always have a headache from it and of course can’t drive…I own a working ranch and just want some resemblance of a life back. I have full body jerking now from the CRPS that I have to take Baclofen for, full body extremely painful muscle spasms that only diazepam breaks, with the CRPS came short term memory loss and major depression (before even medications began) it’s just a great part of the disease.
Mayo has given up on me, there are very few CRPS Dr’s in America, no FDA approved treatments and it’s the highest ranked disease on the McGill’s pain scale, Any help is greatly appreciated!!
I am very sorry to hear the much pain you are in. Indeed, CRPS can be a lifelong condition and not much in known about it. I am not sure why doctors would prescribe voltage gated calcium channel blockers for such, since all those do is prevent neuronal firing for all cells–systemically–but doesn’t stop pain sensory sites, which are not within the brain. Studies show that all pain is felt through nociceptors in the brain–even pain with your little toe. Pain medications and blockers make more sense but it seems your body has a genetic variant to go through these very fast and get adapted, which then downregulates the receptors and you must have more and more–this is “addiction 101” case study, unfortunately.
In reading up on some of the treatments, one caught my eyes: electrical stimulation. You have not mentioned that you have tried that yet. Have you? Here is a link for the description off your condition and also some treatments.
These two paragraphs caught my attention:
If you have not tried these, I recommend you do.
In addition, while I am sure that you have not been thinking about any exercise with all the pain you are going through, since CRPS may be connected to not enough oxygen–meaning lack of enough blood flow–some exercise you may want to push yourself through to see if improved blood circulation would be helpful. I suspect it would be helpful but it is something only you can tell.
Hugs and hope you find a solution!
Tanya, high dose thiamine improves CRPS/RSD. We have case studies in our book: Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition. There is a link in the side bar of the blog. We also have several articles on thiamine deficiency. Take a look.
So I’ve been on the medication for three years. In fact the three year mark is when I stopped taking it. One day while doing a group project i literally couldn’t think I couldn’t property form a paragraph
It was so embarrassing and the worst part is the group just think I just don’t care. Fast forward this threw me into a deep depression. And then it came to me….what if it’s medication? I’ve never been like this before. I can’t speak properly anymore, my recall is just terrible, I can’t spell anymore. Not only that but I discover it was affecting my motor skills to. I hadn’t realized at the time. I had noticed my vision star to worsen but nothing major just that I couldn’t see as well.
It’s been two weeks of being off it. I’m going through withdrawals 🙁
But I want to know, will my brain ever be able to recover? I’m honestly so deviststed. I’m so scared that too much damage has already been done.
There can be light at the end of the tunnel. We have nutritional tools that can help the brain to recover. We also now understand what those things are that are extremely harmful for the brain. To recover, consider first stopping all harmful things: sugar and other sweeteners, smoking, vegetable oils, foods that are high in sugar like starches (think grain, cereal, sweet fruits, rice, potatoes, corn), soft drinks, fruit juices, etc. The brain is over 70% fat and cholesterol so eat as if you were eating for the brain. The best diet for the brain and its health maintenance and recovery is the ketogenic diet. That is why they use it for seizures.
So see if you can find a nutritionist who is willing to help you with the ketogenic diet. What heals the brain is the fasting part–fasting longer than 16 hours.
I just had the most horrible experience on Topamax. It rendered me clinically blind for 3 days and no one knew what was wrong with me. In fact an ER doctor told me to return to my regular dosage after my vision returned. I’m still experiencing confusion, slight tingling/numbing in my face/cheeks, and extreme headache with pain behind my eyes because of it. The last dose I took was Sunday morning at 10am. I hope after a couple more days that it’s out of my system the rest of the way, because I’m so afraid I’ve got permanent damage from this drug.
Wow Samanth! That is definitely not a medicine for you! how scary–and it is even scarier that you are not the first one this is happening to. I would recommend that you report your adverse reaction at the FDA website. There are instruction and a phone number as well as online reporting information here. Please be sure to report it. The FDA needs all reports so they can assess when this drug needs to be removed from the market.
Topamax can cause permanent damage–it is on the label.
may I ask what you were prescribed it? If migraine, we can resolve that without any medicines in my Facebook migraine group.
Hi Angela, I appreciate your article. I’ve had daily chronic headaches for the past 4 months, and for the past 2 they’ve been 24/7 — pain in the 3-5 range throughout a day. I don’t think it’s migraines since I don’t have light sensitivity, no auras, etc. And it just doesn’t go away! Acetaminophen doesn’t help. Anyway, I went to see my doc 2 months in and he prescribed topamax. I wasn’t comfortable with it after a little research but was about to take it cause I’m feeling at the end of my rope! I’m glad I read this! I went and got my vision tested, got allergy blood work done, cut gluten out, all at people’s different recommendations, and everything has been the same. I don’t have tons of money to spend on naturopathic doctors or chiropractors, so I’m not sure what I should do next.
From what I can tell, topamax isn’t even recommended for daily chronic headaches, only migraines too?? So I’m not sure if he was just throwing it out there to see if it worked? He wanted me to work up to 4 pills a day over 4 weeks and then wean back off over 4 weeks. Any advice is appreciated!! Not sure if diet changes help with this like migraines? Thanks!!!
Thanks for your question. Not being sensitive to light or aura are not criteria by which we can exclude migraines. There are many prodromes and light sensitivity is just one and not everyone has that though most do; aura is special and much fewer migraineurs have auras. I would not exclude migraine so easily. I am glad you didn’t start to take Topamax. It is also not for migraines. Topamax is an antivonvulsant–meaning anti-epileptic and anti-seizure. Nothing to do with migraines though most migraineurs get it prescribed, only to have them stop taking it since it doesn’t work and has way too many side effects.
You wrote that you quit glutens: glutens don’t cause headaches or migraines. They cause health issues if you are a celiac. Grains may cause migraines because they are such a huge load of carbohydrates and that dysregulates electrolyte homeostasis. So rather than quitting gluten, which is unhealthy, I agree, you should try to quit all grains and other things that I discuss in my book and you can find out more about in my FB migraine group. Glad to help you if/when you join.
First of all, I want to thank you for this well written and informed post. I am now being more serious about finding an alternative to my lifelong problem with yo yo dieting and binge eating disorders.. I have been diagnosed with Hashimotos for over 11 years now. I feel like such a hypocrite, because it was important to me that my thyroid medication be more natural (since I would be taking it the rest of my life) and I have been on NatureThroid for that amount of time.. Before I was diagnosed my weight had ballooned! I gained over 90 lbs on my 5ft frame, I was tired and sluggish. My NP put me on Pentermine at the time and I was able to drop 49 lbs. After some time the drug stopped working on its own and she decided to combine it with 50mg of Topiramate (a 25mg dose 2 x’s a day) then after about 20 more lbs of weight loss and a plateau the full dose of 100mg (50mg pills 2x’s a day). I was on this for about 4 years until a year ago that I felt the medication wasn’t working to reduce my hunger or help me lose weight anymore. That’s when she told me about the drug Qysmia. After finding out how much that drug was going to cost, she decided to prescribe me Vyvanse and topamax together. She said that Qysmia is essentially the two drugs combined and my insurance would approve Vyvanse.. Well, I have been having some major concerns about my brain lately, and a sinking feeling that I really needed to get off of these prescriptions.. I even had a warning from my pharmacist about the glaucoma months ago that made me think I needed to start setting a goal to stop these drugs..
I have always had a very unhealthy relationship with food, hated exercise and I have always quit the diets I started. That’s why these drugs were so appealing to me. Lose weight without trying? Still enjoying what I love, but shrink while I’m doing it?? Unfortunately, I feel like my face looks old and puffy. I’ve been blaming my Hashi’s, but after reading the long list of side effects, I’m starting to wonder if it isn’t the Topamax…
My other question is, I know that these chemicals accumulate in the brain. Is there a way to cleanse them and begin healing? I’ve heard of alternative therapies like chelation. Whether it be through IV or supplements, like greens coriander and the like.. Is it possible to reverse the damage and heal the brain? I know you talk about the keto diet, but I’m specifically speaking about cleansing the accumulation of toxins from the brain and body tissues. I would really love to reverse this self-harm I have caused myself.
I’m not one for New Year’s Resolutions. I think by reading this you can see why, but I feel like the pharmaceutical companies are producing a bunch of zombies, and I don’t want to be one anymore, due to vanity! I really want to do things the right way.. I can wean myself off of them (they pass them out to me like candy) but I also want to cleanse myself of them and heal myself..
I used to be quick and smart. A problem solver, and someone who was empathetic and would go out of their way to help other hurting humans. Now I feel like a lazy, reclusive, robot. I like the fact that I look slimmer and that I’m not binge eating, but I hate the paranoid thoughts, tachycardia, puffy face, mood swings, depression, hair loss, eye pressure, extreme insomnia, sadness, and everything else that comes along with it.. I’m only 35, but I feel like a sad, old, lady.. I don’t want to be a fat, sad, old, lady, but I’m afraid of getting dementia, Alzheimer’s or brain damage from all these drugs I’ve been taking..
I’m not sure if you every make phone calls, but I would love to talk to you, if so.. If not, I am just as thankful for a reply here and I can’t thank you enough for this article.. I had to get through pages and pages of drug company websites after my google search, just to find it…
Thanks for your opening up. I understand that you have hesitance getting on any “diet” because of what appears to me to be some form of eating disorder that has not been addressed. Many people have such feelings and I understand. A few points of interest:
1) I talk about the ketogenic diet but it is not a “diet” in a sense of diets. It has a silly name. It is a lifestyle and not a diet. One doesn’t actually diet on the ketogenic diet–in fact, my breakfast alone is over 1300 Calories. I would not call that a diet by any means. It is a change in energy source such that, instead of only glucose, your body reserves glucose-use for only those organs that need it–such as your red blood cells–and uses ketones as fuel for other organs–such as your brain and heart and muscles, as example. It has nothing diet about it. It restricts carbohydrates because your body isn’t using it as glucose for energy so you don’t need any carbohydrates; whatever glucose your body needs it makes from protein.
2) Topamax is well understood to cause permanent brain modifications (a.k.a. brain damage). This is even on the label. There is nothing new here. What may be new is that in the brain, while adaptive and can repair many things, not everything can be repaired. It is important to avoid taking medications when one need not take them. While I understand your block against diets, and nutrition-self-control in general, you do have a choice of either taking a risk and medicating the unhealthy relationship with foods away and then live with the consequences, or make a decision that you teach yourself to control what and when you eat based on your health needs–not body image. The goal of eating is to stay alive and healthy and not to look good. That comes naturally.
Ultimately, you need to realize this, a healthy body will look its best and an unhealthy one, that is being medicated to look descent, is still going to look like a sick body, no matter how slim. The important thing is not to look slim but to be and look healthy–which may make you slim without any effort on your part. You just need to let your mind learn how to do that.
3) There is no such as “brain cleanse” via chelation. We have a blood brain barrier that prevents most everything from crossing into the brain. It cannot cross that barrier. The best way to get rid of drugs and their residue is to a) stop taking them (please don’t quit any medicines as that can make you sick, reduce as per instructions!) b) once you stopped, the recovery is really only possible–if at all–by fasting and in ketosis. Note I wrote “in ketosis” since one need not be on the ketogenic diet to be in ketosis. The goal is ketosis and not the ketogenic diet.
I am glad you found my pages here. I have private clients and you are welcome to contact me here to inquire about my fees.
I wish you strength and good luck!
My mother recently started having memory loss and confusion. This did come on suddenly. I found out through this she was on Topamax, having been prescribed for weight loss 3 years ago, though never having asked for it, nor did it help her with lose any weight. The doctor told her to stop taking it (cold turkey, which concerns me) a week ago, and the effects still linger. CT did come back normal. I am concerned it may be the Topamax, and am wondering, if it is, will the side effects ever reverse? We still don’t know if it is the culprit.
I had been given Topamax years ago after having had a single seizure. I was concerned about the side effects, so sought another opinion. I was immediately weened off it, (and never had another seizure). When I found out my mom had been on this for 3 years, my heart sunk.
So sorry you just learned that your mom was on Topamax. Indeed, quitting it cold turkey is not the way to go. Topamax blocks the communication between neurons and once this is suddenly removed, there may just be to much communication happening all at once. Quitting it cold turkey can also cause seizures–she may be having mini seizures. So sorry she was put on that fr weight loss. The FDA banned this drug from use for weight loss long time ago. That is one doctor to replace with a good one!
Please talk to a new doctor and have your mom go back on Topamax and apply the proper titration schedule by the pharmaceutical company or even slower–that would be my preference.
Best luck and lots of hugs to your mom! What an ordeal!
Dear Angela, my neurologist diagnosed me with chronic headaches most likely she said meds induced. Also migraine headaches for which she prescribed me topiramate 25mg 1x for the first week. 2nd week and 3rd week 50mg and 4th week 75mg. After 4th day I thought I will pull out my teeth, literally. As I had a tiny inflammation around my implant that was taken care of weeks before and not hurting, I doubted first, thinking maybe that inflammation got worse. So I proceeded with topiramate. Till the side effects started to pile up: weird vision, huge dizziness, balance problems, more teeth pain all over as if all my tooth nerves were inflammated, metallic taste in mouth, headaches, pins and needles sensation in my face as if a dentist numbed all, sensation in head as if all gets pulled vacuum, depression, anxiety and nightmares. I felt like someone put my knee, feet and hand under dull electricity pressure and kept increasing that. This was in 2nd week where I only managed 2 days 50mg before reducing back to 25mg and stopped entirely last Sunday. Sunday I took none. I contacted my neurologist Mondays and at least she agreed I stopped correctly (let’s hope) that med and go to doctor to check my potassium levels. 12 December I go back for 2nd appointment with my neurologist. The thing is I still feel those pins and needles in my face and light tooth pain all over…. and, am certain it’s no tooth problem. How long can I expect such aftermath to last? I am from Switzerland.
Thanks for your question. I am a bit confused. Your doctor said your migraine was medicine induced and then she gave you medicine to take??? Is that how you meant it? That’s how I understood it and that is quite counter-intuitive.
Migraine is a genetic condition, which is not likely to be induced by medicine any more than drinking sparkling water instead of flat water can. Medicine-caused rebounds can cause major headaches but not migraines. To have migraines, one needs a migraine brain, which is an anatomically different brain.
The adverse reaction you had to Topiramate (Topamax) is real and many people who take it have those adverse effects. In some cases this can be permanent–if you read the Topamax FDA label, it lists several permanent adverse effects, including peripheral neuropathy, which is what this sounds like to me. It is really not needed to take any medicines for migraine, a condition that is completely preventable. Please join my migraine group on Facebook, and read my migraine book on the matter (this link takes you to your local amazon).
A neurologist will always prescribe a medicine because they have no alternatives. However, there is a perfect alternative that has already sent about 5000 migraine sufferers free of migraines and all medicines. Read some of the testimonials here.
In terms of how long those symptoms may last: in worst case scenario for life but as long as you are not on any prescription medicines, the ketogenic diet may help by fasting to replace damaged cells. If you are not about to go on any new medicines for migraine, you can also join my ketogenic program for migraineurs on FB.
I find it interesting for you Dr. Stanton who you state, have many papers on Economics and Mathematics and happened to have a doctorate that “incorporates the focus on neuroscience and the hormones associated with decision-making.” However, what I do not see if any medical training. No nursing training. No field work with patients any any of the fields in which Topamax is prescribed to help. In fact after reading this article you do nothing more than plagiarize the side effects you can read from even the manufacturer’s own web page. What give you the knowledge to come here and give these people medical based advice when you know NOTHING of their medical history. Some of these participants are taking other medications that could easily also explain their symptoms. You should be VERY careful with the power you hold when offering advice to people. It would be wise to offer them speak to their attending physician prior to quitting any medication. Do keep in mind that Topamax is also used as an anti-psychotic for Bi-Polar patience who do not tolerate Lithium! You surely would not want to be responsible for causing someone with a sever mood disorder to stop taking needed medication in today’s mental health crisis. As it seems to me you may be a wonderful naturalist. I believe in essential oils and choosing a healthy lifestyle when ever possible. I do however believe in sticking to what I know. I know I cannot understand the brain as I am not a train neurologist- as you are not as well. Please be careful Dr. Stanton. changing a life means consequences, good and bad.
A scientist needs no medical or nursing training to understand how medicine works at the pharmacologic level. Medical doctors and nurses are not trained in science, a degree in science is a PhD or DSc or MS and not an MD and definitely not RN. The practice of medicine is an art and not science. It is applied science (meaning someone else’s science is applied by an MD or RN) to the patient in which the doctor or nurse invents or researches nothing, only observes a condition and offers treatment that is available already and is based on the research by scientists.
By contrast, my academic training is in Neuroeconomics, which is neuroscience with the use of economic tools. My dissertation is pure neuroscience, please feel free to read chapter two of my dissertation published in PLOS One. In that you can see the part that is economics: very heavy mathematics and economics models used for understanding the hormonal action-reaction result; in other words, mathematics and economics is used as a tool to understand what we found in neuroscience. And indeed, I have publications in mathematics and economics as well as medicine and health, and one upcoming in nutrition.
Now let me address plagiarism: Everything is cited or linked to appropriately. I have claimed no part of the material written elsewhere to have been authored by me.
The word plagiarism stands for:
the practice of taking someone else’s work or ideas and passing them off as one’s own.
synonyms: copying, infringement of copyright, piracy, theft, stealing; informal cribbing
“accusations of plagiarism”
(the definition is based on a google search for the terms “definition of plagiarism”).
So then, it is clear that your plagiarism concern is fully unwarranted.
Now let me address your concern of me giving advice to anyone: I have not given any. I am simply quoting what is on the label of the product and what is on the label as per the FDA, and information in wikipedia, and cited everywhere accordingly. Perhaps you should familiarize yourself with the full label and what is written at the other links I provided.
Not only am I not recommending anyone to quit taking Topamax, I expressly warn against doing so without proper doctor supervision–though my comment is a warning about how little doctors actually understand Topamax as they recommend too quick tapering that causes harm:
I am cautioning about the brain degenerative effects of Topamax but not as my opinion; I provide academic citation for the degenerative effects it causes. I offer no advice at all.
In sum: your note is well taken, thank you, but is not applicable.
Oh Kery I have to chime in on the use of Dopamax on the patient end. For this to be used for anyone with a mental illness is absurd!!!! This medication made me go CRAZY and I don’t know how it would help anyone that has wires crossed. I’ve been on this awful pill for 3 years and am finally titrating off of it. Worst thing I ever did is let the uneducated doctors put me on it for migraines. There are no wonder drugs to cure multiple ailments. Do your research people!!!! Wish I would have seen this years ago!!!
Thanks Ali. You are very right though I would suggest that doctors and nurses are uninformed rather than uneducated. That is because pharmaceuticals don’t release their full clinical trials and also all the adverse effects are hidden and only some are released. In addition, the entire testing procedure is different from what doctors understand it is. It is in the pharmaceutical company’s interest to only tell so much about each medicine and not the whole story–see my article on Aimovig to see the scope of how doctors are deliberately being misled–and read also the comments, at least one of which is written by a pharma-rep.
In terms of research and use of medicines: medical staff are limited to the standards set up by the company they work for. I have a few examples (many examples actually) when doctors and nurses tell patients one thing and then apply something completely different to themselves and to their families. This is the result of regulations. I am told that, in some countries with socialized medicine, doctors even have quota of how many prescriptions and for what drugs they must write a day!
With a setup like this, patients are on their own and must do their own research by reading the professional leaflet for side effects, the clinical trials if the data is available, and to read articles like what I write, to learn about their options.
Ali, in terms of migraine, please join my protocol FB migraine group–it is a closed group and we offer help to any migraineur all over the world absolutely free.
Sorry Kerry D, whomever you are, but as a patient diagnosed with Bipolar Disorder as well as battling migraines, Topomax is the worst medication on the market. Inefficient as a mood stabilizer, really doesn’t help for pain, It severely affects your cognitive thinking and the weight loss effect is overstated, probably as a marketing ploy, this medication should be in my honest opinion removed from the market. It is an absurd med with intolerable side effects. I 100% agree with OP here. Maybe you should try Topomax for a while and experience it from a patient point of view, you will quickly change your mind on this horrible med.
Thank you for your supportive comment and indeed: doctors should never prescribe a drug like this unless they have complete familiarity with it, preferably a personal one by trying it.
Ik posted here a while a go.
It has been two years since i’ve quit taking topamax and i still feel slow and stupid, depressed, not myself.
Ik tried the ketogenic diet, but unfortunately i also got lyme disease a year a go, and the combination of keto and a bacteria that likes a low ph didn’t feel right. Antibiotics didn’t help, i guess my immune system was already to weak to fight the borrelia bacteria after topamax. Currently i am using a malaria pill called plaquenil for reuma and fibromyalgy pains. Buy it also seems to interfere with my brain in a negative way.
Do you hear more stories of people that don’t recover from topamax after such a long time? Could the ketogenic diet still do something good for the brain en can you still recover, also after a couple of years? And, in my situation, does the keto diet interfere with the borrelia bacteria that causes lyme?
Alsof, how bad is plaquenil for the brain?
I am asking al these questions. Hope it won’t be to much trouble for you.
Complex and chaotic story. Thanks really really much for your time!!!!!
Kind regards, Lonneke Schravesande
Very sorry that you still feel ill. It seems you are fighting two battles: Topamax residual damage and Lyme disease. It is hard to separate the two in terms of symptoms as they both can have many bad symptoms. Let me assure you that the ketogenic diet is likely the most helpful against both Lyme disease and the damage Topamax has left behind. Let me explain why.
You mentioned the pH level and bacteria that like low pH. That is not the case. Not sure where you read that from but most life prefers a higher pH (more alkaline) and that is why our stomach, for example, has an extremely acidic (low pH) environment. The stomach acid for a healthy individual is between 1-2.5, whereas our blood, where the ketogenic diet makes a difference, is ideally 7.4 but there is a small range of variance that is acceptable, which I believe places the blood pH between 7.34 and 7.4 for survival. So getting on the ketogenic diet doesn’t change your pH that much–it lowers it by a small fraction. Every organ has different pH levels, based on what kind of pathogens the specific organ expects. Since the stomach expects the most dangerous bacteria, its pH is the strongest in order to get rid of bacteria. So low pH is good and it helps with getting rid of Lyme disease.
The problem with choosing to take medication for any condition in the brain (Lyme disease in later stages is in the brain), is that none of the medicines taken cross the blood brain barrier with ease–if at all–and thus the entire body gets damaged over something that is only in the brain. It is far better to work with something that could actually work in the brain. Ketones readily cross the blood brain barrier and most brain cells have a preference for ketones over glucose.
However, going on the ketogenic diet doesn’t cure on its own. It may reverse, or put to remission, glucose-insulin dysfunction associated health conditions, such as type 2 diabetes, some cancers–particularly in the brain–,also Alzheimer’s disease, among dozens of other health conditions and bacterial infections, by simply not providing glucose, which is an essential fuel for many diseases. When it comes to repair though, something else is needed. Repair can be forced onto the brain and body by creating an environment where autophagy turns on to optimize cellular functions. When the body is under stress, such as a famine, autophagy kicks in to optimize body functions such that less fuel is sufficient for survival. It shuts down non-essential functions for the time being, such as reproduction, and initiates a ton of other things, such as increasing the number of mitochondria per cell, repairing cells that don’t function with efficiency, and destroying those cells that cannot be fixed and are harmful. Autophagy also completely replaces the immune system in a very short time (~2 days of fasting) with a stronger immune system.
So the means by which it is possible to get rid of bacterial infections or cancer cells or other conditions, including any damaged cells, is by embarking on multi-day fasting. One can fast starting on any diet, though a 2-day fast will land everyone in ketosis. It is easiest to start fasting when one is in ketosis already, simply because in the state of ketosis the body burns fat instead of glucose for energy, and we have plenty of fat stored on us–in general–so while we may not eat, our body need not be without energy in the ketogenic diet.
Please talk to your doctor about any fasting you may consider. Fasting can drastically lower blood pressure and heart rate very suddenly and this may not be desired for someone who has low blood pressure or is on medication for blood pressure. The ketogenic diet also interacts with many medications, so a doctor’s supervision is essential.
Best wishes for your recovery,
Thanks a lot for your answer with all this helpfull information. I’m convinced to give the keto diet another shot as i am getting pretty desperate in search of recovery in this post topamax journey..
Ik spoke to my lyme doctor about the keto diet, but unfortunately he could’nt give me much information about possible Interaction with plaquenil.
The medicine plaquenil contains some sugar (lactose), and i can’t quit just yet because of post lyme syndrome. I take 200 mg plaquenil a day (one tablet) that contains 35,25 mg lactosemonohydrate. Would that be a problem with trying to get in ketosis? Plaquenil also affects your blood sugar and can result to hypoglykemie. Would that be a problem?
I hope i’m not bothering you to much with all these questions. Thanks so much for your precious time!
Kind regards, Lonneke
Are you taking a chewable form Plaquenil? The regular for has nothing like you mention in it: “PLAQUENIL (hydroxychloroquine sulfate) tablets contain 200 mg hydroxychloroquine sulfate, equivalent to 155 mg base, and are for oral administration. Inactive Ingredients: Dibasic Calcium Phosphate, Hydroxypropyl Methylcellulose, Magnesium Stearate, Polyethylene glycol 400, Polysorbate 80, Starch, Titanium Dioxide.” I suppose some sweetener would be added to a chewable tablet. Lactose monohydrate is actually lactose–as in dairy like milk. So it is basically milk sugar. 35 mg is tiny. A glass of milk has 11-13 gr and a gr in 1000 mg so it is too tiny to matter.
The mechanism by which it affects the blood glucose is independent from the amount of lactose monohydrate. The action of Plaquenil changes the pH to be more alkaline in the affected cells’ cytosol, increasing from pH 4 of highly acidic to pH 6 of slightly acidic (pH 7 is neutral), and so it modifies the cellular glucose use–among other things. Basically Plaquenil reduces your immune reaction. It is a complicated drug that is used primarily for malaria but some other health conditions as well.
It is unclear to me based on the mechanism of action whether it woudl interfere with ketosis or not–the sugar part of it will not affect your getting into ketosis. In terms of hypoglycemia: the best nutritional process is to eat no foods that provide exogenous glucose. The human body is not in need of any carbs at all. It can make all the glucose it needs from protein–and it can also make glucose from fat. When one switches over to a low carbs or no carbs diet, hypoglycemia may happen so if you start a nutritional change, please use a glood glucose and a blood ketones monitor–a very reliable one is Keto-Mojo, which is one unit that can test both.
Given your health complications, I would also recommend you find a doctor or nutritionist who can guide you with ketosis and any possible complications you may get as a result of hypoglycemia or medication interaction. In my migraine ketogenic group we focus on these issues specifically for migraineurs, which you are welcome to join though your condition is not migraine.
Questions never bother me! <3 Feel free to ask!
Angela, I was just notified by my doctor’s office that my insurance is no longer going to pay for my prescription for Topomax. After reading your laundry list of terrifying side effects of which I have enough of that I am so happy I am not even going to question their decision. I just am concerned with weaning myself off on what little I have left. I guess I have no choice. I don’t want to have a seizure. I have actually lost over a hundred pounds allowing me to get off several other medications and my anti-depression medication. I have been taking Topomax off and on since 2014. The generic form of the drug did not work for me so I quit taking it. I have noticed night blindness, problems with my teeth, several cognitive problems, I just thought I was probably headed towards Alzheimer’s like my Father, he had early onset Alzheimers at. 52 years of age. My Doctor obviously has no idea how dangerous this is. I simply got a call from the refill nurse saying..” Sorry, Charlie”.
Oh wow Sandi, how many pills do you have left? And what dose? It is very important that you don’t quit too fast… you may have to invest in one more month of it at full price to save you from the terrible side effects of reducing too fast, which may indeed include seizures. The manufacturer’s reduction schedule is ery fast: half pill each day for a week I think every day and then half that for another week every day and then no more. I have not seen people succeed with this speed. Those who come to me for a more comfortable reduction take much longer to come off. My reduction is minimum 21 weeks long.
You can only do your best and try what you can within your limited access. So experiment and see what kind of reactions you get by half a pill instead of whole… It is important that you understand that sugar and insulin are irritants to the brain and stopping sweeteners of all kinds and foods with easy conversion to sugar, can help you prevent seizures. It will help your medicine reduction success if you stopped the consumption of all irritants.
Best of luck,
I’m disabled and I am so scared right now :(.
Oh no! I just saw on the side effects list; abnormal gait. I’m disabled now because all of a sudden I can’t walk and no one knows why. I can’t stand up straight. I don’t seem to have any combination or muscle tone or something but physical therapy says I do. I have felt like maybe there’s something wrong with my brain. I wonder if this could be it.
So sorry to hear. Are you still takign Topamax? If so please talk to your doctor to reduce and quit. You may be having an adverse reaction.
Angela, i was taking 400mgs per day up until the day i saw your blog. That night i started only taking half the dosage. I have at least one full prescription of 200mg tablets to wean myself with. Will that is enough? What really sucks for me, the reason the drug has been such a successful diet drug for me is due to one simple fact..and just dropping to half its already an issue, when I take Topamax I get no hunger pangs…ever and my hunger pangs give me a headache and make me feel sick.
So i already am fighting a huge increase in my appetite and i hate that feeling. It makes me very upset. I had not felt it in so long. This is really upsetting.. I don’t know if i told you but i weighed almost 400lbs when i started taking Topamax. I had tried everything except surgery. Surgery was next. I guess now surgery will be next.
I have So Many of those side effects. I have had to quit working. I had no idea what was wrong with me. I am having a hard time climbing stairs, holding my torso up. My elbows ache, I am taking medication because I can’t get to the bathroom fast enough and am constantly wetting my pants. I have pain in my ears, Tinnitus real bad. I have night blindness and vision issues that have caused me problems with the DMV this last year. I am having cognitive issues, memory issues… It feels to me like maybe my brain isn’t telling my body to hold my torso up. But the doctors aren’t helping me. Not my regular doctor, she is only concerned about my pain medication, which i am also weaning off of right now. I was denied for disability. I had such high hopes that they would figure out why i can’t stand up. I was more upset about that then being denied. I am a good worker and can work bent halfway over if someone would hire me. They said i am denied because i should be able ti find me a sit-down job. I agree with them. I suppose in a perfect world i should. One that wi let me sit by the toilet in case i gotta pee, one that will let me walk around or lay down often because my fingers get numb and tingle when i sit too long and my legs swell like balloons.
Angela. Despite all that. I am one of the happiest people you will ever meet. 🙂
Thank you so much for what you are doing for everyone here. You touched my life at the perfect time. You are an Angel. I was lucky to find you when I did.
I totally understand and know what you are going through. I see this all the time. And believe it or not, it is completely the fault of the SAD (Standard American Diet). You have probably been told all your life to eat lots of grains, fresh high-fiber vegetables, reduce fat and meat in your diet, etc. It seems that this is what’s happening to everyone and when we reduce fat in our diet, carbs sneak in. Not only in what we eat as whole foods but also into all foods we buy that is prepared, from cereals to breads to hot dog: everything has sugar or sugar substitutes in it and both cause major obesity and type 2 diabetes.
I follow modern nutritional science, in fact, I received my certification on the LCHF (low carbs high fat) and the ketogenic diets this year. The problem is what you were told to eat and not who you are. Starting from that viewpoint, the problem is pretty simple. There are hundreds of groups on Facebook alone where people, whose life was just like yours is, turned their lives around by switching what they ate. I work with thousands of migraine sufferers with lots of health problems–and I too had a ton of health problems before I switched over to the modern way of eating.
I cannot advise you what to do since I am not an MD (not that MDs are trained in nutrition) but I can tell you what I do and what I see.
What I see:
I am member of many FB groups that are ketogenic or carnivore or similar and I can see how people post before and after photos, many with medical records attached, for before and 6 months later, often dropping 300 lbs. I am not saying that dropping 300 lbs in 6 months is healthy, but you can see this happening and they do become healthy. People also reverse their type 2 diabetes and other health conditions.
It is a question of understanding the human metabolic processes, the human metabolic system, what humans were meant to eat (and I know this will be attacked by some groups), and how. I suppose I should write an article about it for this blog. But in very brief: the human metabolic system is based on acid. In fact, the acid pH in our stomach is between 1 and 2.5, which is nearly as acidic as vultures and hyenas, more acidic than lions. Humans are scavengers and carnivores. We don’t have fermenting chambers like ruminants (cows and alike) have or fermenting long intestines like apes have. our fermenting ability is tiny–only the colon and nowhere else, where we literally only absorb water and not much else.
As carnivores and scavengers, humans are meant to eat meat and seafood, with lots of fat, and dairy, and nothing else. Anything else you eat converts to and deposits as fat. So you can already see that humans are not meant to eat non-flesh carbs at all. There is carbs is seafood, organ meat, and dairy. That’s exactly the kind of carbs we are supposed to eat/drink and nothing else.
So now I can tell you what I eat and how I cured myself:
I have been a migraineur all my life, progressively increasing in frequency as the years passed. I also had arthritis, prediabetes, I was not obese but chubby, asthma, allergies, rosacea, used to be a smoker so some lung damage, back problems, sleep problems, anxiety, heart arrhythmia, and I don’t even remember what else. Now take this whole list and all the medications associated with it and trash it. That’s what happened. I even reversed some stuff in my lungs that could have turned cancerous. It took a few years, but today I am completely without all of the above and am still tapering off of the many medicines I used to take. I am down to just a couple now and working my way down from all.
How did I do it:
1) I quit all sugar and all sweeteners, no mater what kind of sweeteners they were. Was it hard? Yes, for about 2-3 weeks and now I can barely eat a single raspberry as it is too sweet–I don’t eat any fruits or vegetables anymore by the way.
2) I quit all grains, including refined or the most whole grain, all rice, corn, oatmeal, everything with or without gluten. Just out of my life. This was harder than quitting sugar. It took 3-6 months to even see the first sign of improvement–which was the reversal of my arthritis! It’s hard to discover what you no longer have! Apparently I am a celiac that no one has discovered because now if I eat a single drop of any grain, including 1 piece of rice, I get an asthma attack and my throat is starting to close up… bad stuff. I will never ever look at grain as food again. Might as well be cement.
3) I quit all juices (even if unsweetened and squeezed by me from my own fruits or vegetables grown by me), all smoothies, shakes, alcohol, and also teas. I switched to decaf instead of regular.
4) I trashed all my cooking oils and switched to animal fats only 100%. I eat nothing that is cooked in oil at all.
5) I trashed all low-fat everything and switched to high fat everything–this made me feel satiated and I never had a day of hunger since
6) I trashed the skinless breast meats and moved to red meat, or if chicken or turkey, only dark meat and with skin, eat pork belly with high fat, lots of butter on my steak, all kinds of seafood with tons of butter and sour cream for flavoring. Lots of eggs.
7) At first I only quit vegetables that grow below ground like potatoes because they are very high carbs (starch) and that was good but I still kept getting sick from whatever veggies I still ate, like cauliflower, broccoli, lettuces, etc., so about 6 months ago I quit all veggies as well.
8) I sometimes eat a little bit of those fruits we consider veggies: cucumbers (in the form of pickles), mini peppers (perhaps 1-2 at the time once or so a week), squash (very small serving once a week or so).
9) I increased my salt consumption to be 2-3 times that of the USDA because my whole food diet is very potassium rich (steak, burger, fish are very high in potassium)
10) I eat more dairy a day than most people in a month and am loving it.
Since I made these last changes, I never even had tummy trouble, never got sick, not a day of pain, I am full of energy; at age 64 I started weight lifting and kickboxing for fun and a year later I am lifting major weights now. I even have my hair growing back–I didn’t know I lost so much hair!
So while I cannot recommend to you to copy me or anyone else, I can recommend that you look around and try a few things you find interesting or feasible to improve your life. There are lots of ideas out there. What I did worked for me amazingly well but everyone is different.
In terms of Topamax: if you change your diet to be less inflammatory, the reduction of Topamax will be easier though you still need to reduce very slowly. It is not possible to go from 200 mg to 0 in 1 month without trouble so you may need to ask for refill.
Hugs to you,
I was put on topiramate for a headache prevention, I took 1 50 mg pill at 7am this morning. It is 2pm in the afternoon and I still feel the side effects. My arms are numb and heavy, hands are tingly, my face is numb, I feel drunk almost. Dumb, like my brain isn’t working, super tired. Slurred speech kinda. Will it ever go away. I will never take another pill in my whole life
Wow Marsha, time to visit the ER with that. These side affects can be all over in many organs and the last thing you want is more trouble. I recommend you go to the ER so they can check you out and most certainly don’t take more. Topiramate is supposed to stop your brain from working right–it is a voltage gated calcium channel blocker. That prevents neurotransmitter release in your brain, which would be needed for your body functions. It seems the drug is blocking you just too strong!
Thank you for such a wonderful site and in-depth information about topiramate. May ask a question here? Are you aware of anyone experiencing cold night sweats even after 2 months since last dose?
I was (unnecessarily) put on topomax June 1 building to 100 mg on June 23. I began withdrawing on July 14 (because of the horrible side effect). Found that I didn’t feel truly normal until Sept 15 – final dose of 25 mg was Aug 4. Thank you
Topamax can have very many long-lasting and some permanent adverse effects. Topamax blocks the temperature-controlling mechanism of the brain, and so a long-lasting adverse effect is perhaps acceptable given that the brain region wants to recover. Envision how difficult it is for the brain to first turning a function off and then turning it back on. The brain is our most adaptive organ. So when a particular function is interfered with, such as Topamax interferes with many functions at the neuronal level, the brain degenerates that particular function. This degeneration can be very quick; it is an energy-conserving mechanism. It is very easy to turn a function off and remove the associated neuronal functions when they are blocked anyway. To gain them back is a much more complicated task: the body has to recreate functions and cell regions it removed. That is “growth and development” that is usually associated with youth. The brain can regenerate a ton of things even for the not so young but the older we get, the longer that takes if at all it is still possible.
The best way to regenerate the brain is by providing an environment in which it has the maximal opportunity to function and develop. This requires a nutritional modification. Insulin and glucose stand in the way of brain regeneration (and optimal health in general). Our brain is over 60% DHA fat (animal saturated fat of omega 3) and 25% cholesterol. We need to eat for our health.
Best wishes to you,
My wife has had severe reaction to just a single dose as well, severe glaucoma (30 pressure in eye) ophthalmologist said she would have lost her eyesight if he hadn’t treated her! It’s been ten days since that single dose and she still can not shake the pulsing in her head, Foggy brain, bounding heart beat, shaking and strange warming sensations in her head. We’ve been to family dr, ENT dr, Nuerologist, and Er has had CAT scans, MRI, extensive blood work and nothing. Will this ever go away?
I am very sorry to hear about your wife–glad her eye sight is saved! Gosh!! Please report to the FDA as soon as you can here. This link takes you to the online reporting form to report it. I wish the FDA would pull this medication off from the shelves.
The adverse events to this drug will not show up as abnormalities on any test. The problem is caused by the nature of the drug, which inhibits voltage gated calcium channels, which, to put it simply, shuts the brain down. Voltage gated calcium channels make neuronal communications possible in the brain from cell to cell. When that is blocked, neurotransmitters are not released and many functions the body used to get direction for from the brain, and cannot perform without those directions, will stop. The effect is systemic, meaning it can be whole-body event.
Some damage that Topamax causes is temporary and others are permanent. It is hard to tell from the damage your wife is experiencing since I have not heard before of the adverse reactions she is experiencing. However, the brain is an adaptive organ and things may improve all of a sudden from one day to the next. To hasten her recovery, it is important to reduce any other form of inflammation so that her body can focus on repairing one thing at the time. Sugar and insulin are known irritants and delay recovery, so it may help to quit those and processed foods and see if that helps. It is important to keep well hydrated with water and salt (electrolyte) to assist the brain in recovery.
I wish a fast recovery for her.
Thank you so much for replying, I really appreciate it since we are getting no answers from doctors. She also has weak, heavy arms, and can’t sleep well and seems to get the stronger episodes while trying to sleep. You mentioned in a few of your comments that a Ketogenic diet and fasting is the best way for the brain to heal. What type of fasting do you recommend? She currently follows the circadian method and tries to eat most of her meals within 9-10 hour window. If you could provide any helpful links of the type of fasting or keto diet you recommend, it would be greatly appreciated!
Glad to be of help and I am aware–unfortunately–that doctors really cannot help you much. They are not informed enough about the pharmacology and are only familiar with those adverse events the pharmaceutical companies post on the medicine, mandated by the FDA. So they cannot help you.
Since I am not an MD, I cannot recommend anything in particular (not that MDs are taught about fasting or the ketogenic diet). What I can do is tell you what I do and why and then you can discuss with any doctor you think is willing to listen and has an open mind. My fasting method covers a large breath of fasting methods and also 3 different types of nutritional processes over the years. Let me explain first why they work for me and for those of us with any health concerns.
The current nutritional paradigm of the Standard American Diet (SAD) is based on lack of any scientific evidence but it is pressed on us because of financial and political interests that I will not discuss. However, as a result of the SAD diet, we have developed a “want” food culture rather than a “need” food culture in relationship to food. It is a very unhealthy relationship because the foods we eat the most of have the least amount of nutrition and is also addictive. Carbohydrates are not an essential macronutrient, so we need not eat a drop of carbs to be healthy. When we stop eating carbs, we also stop needing vitamins–there is a long biochemical explanation for that, which I will not get into.
So understanding that really we only need protein and fats, places eating and not eating (fasting) into a completely different viewpoint. For one thing, fasting on the SAD merely reduces our metabolic speed and makes us hungry, whereas fasting on a fat-burning diet has health benefits, such as cell-repair and replacement. So here is where we connect to healthy brain and body to fasting: cellular repair and replacements happen at a much increased rate during fasting. One of the many reasons for this is that when food is not coming in, the body “optimizes” its resources and either fixes cells that are damaged, or generates stem cells and replaces them. So fasting is a powerful tool for healthy body and mind.
Lastly: I work out a lot with weight lifting and kickboxing and I monitor my heart rate to make sure I stay within my limits–I am senior so care is important. On my last workout day I simply had no time to eat, so I went with 22 hours of fasting behind me. Instead of not having enough strength, I was stronger than ever and did a lot more work than I normally do. All weights were increased as well but the biggest shocker was my heart rate! As a result of having so many fasted hours behind me, the stress on my heart was reduced by about 15 beats per minute compared with other days when I work out as other people do, a few hours after eating. So fasting has amazing benefits.
Now to my eating and fasting methods to improve my health.
In all of the above diets the foods that are excluded: all grains, all starches, all fruits with the exceptions of raspberries, blackberries, and strawberries, and cooking oils are replaced by animal fats. eating olive, avocado, or coconut oils cold is fine.
I started out with 16:8, which is 16 hours of not eating and 8 hour window during which I can eat as much as I want. Most people who do time restricted eating do this. This is not the official intermittent fasting but some people call it that. Doesn’t matter. The point is: it is not a calorie restricted diet. There is nothing “diet” about it. It is more akin to a circadian rhythm type eating synchronous with nature. 16:8 I found to be an extremely easy way of living and soon the 16 hours of not eating turned into 17, then 18, and so forth, and before I knew it, I simply would forget to eat the whole day as I was not hungry (this is intermittent fasting). I have gone up to 3 days of such “not eating” and only drinking water and taking salt.
The thing about such long fasting is that this is the ultimate way for the body to repair itself. According to research, the body’s immune system completely replaces itself in a 2-day fast of 48 hours of not eating, only drinking water and salt. People with seizures are placed on such fast in the hospital–usually 5-day fast–to start the repair process. I don’t recommend longer than 3-day fast to anyone without doctor/nurse supervision. Even 3 days drops heart rate and blood pressure significantly and for some people this can be dangerous–like I have low blood pressure and my pulse is not high so such drop is undesired.
It is important to note that many prescription medicines interact with such fasting and the ketogenic state that it creates. For most people the interactions are mild such that, for example, if someone is on blood pressure lowering medicine, because the fast lowers blood pressure, they just need to be removed from the medicine fast enough. However, for example, me with my low blood pressure, I still had arrhythmia and was on medicine for that. The medicine I was on caused major trouble for me when I started ketosis, showing up nearly a year into ketosis. It took 2 cardiologist and a keto expert to figure out that the medicine I took was interacting with my state of ketosis. I was moved over to a different arrhythmia medicine and this one is fine. So knowing what medicine interacts with ketosis is important but there is not much information out there about them.
In my ketogenic diet group for migraineurs, I don’t allow anyone to join the group while they are still taking medicines that I think may interact with ketosis. You or your wife (or both) are welcome to join my keto group–there are a variety of health concerned people in there not just migraineurs, though that is the main focus.
I hope I provided enough information for you to see what is possible and how.
Best wishes to you and to your wife,
I am so thankful for this write-up. I was prescribed topiramate within the past week for migraines and headaches that were occuring just about daily. When my PCP recommended this medication, he failed to indicate the high possibility of serious side effects. I know enough to do my own research beforehand, but neglected to do so, and picked up the medication as soon as my doc prescribed it. Well, after 3 days on topiramate, I’m tossing it in the trash. Almost immediately, I was hit with the following side effects: cognitive impairment, confusion, word and memory loss, dizziness, lightheadedness, drowsiness, feeling cold, dry lips, loss of appetite. This drug is dangerous. I’ll just continue to use Excedrin as needed, but will begin taking riboflavin and magnesium as a preventative therapy.
Good choice Monique! Not sure if you are familiar with my migraine group that has over the past 5 years worked with over 4000 migraine sufferers, setting all free of migraines as well as medicines. Please join us and learn how to.
I had genetic testing and Topamax was one of the drugs that showed up as a good match for me so I’m trying it. So far so good. I do have some nice added energy and feel less depressed. The desire for sweets and alcohol pretty much vanished the first day. I couldn’t even imagine why I’d want either, they didn’t sound gross, just uninteresting. And I have had wine with dinner since I was 16 and I’m in my 50’s. If I’d been a very heavy drinker I don’t know if it would have worked that fast, or if it even should.
If Topamax gets nasty I’ll just go off it. Nothing can be as bad as withdrawing from Effexor. I have no fear after that horror. Most of us with mood disorders have been on a lot of medications, we are warriors and take it on the chin. And who knows if not eating sugar or drinking alcohol becomes a lifestyle that may have more benefits than any drug out there. So, thank you Topamax! Maybe as a short-term add-on therapy for addiction, it’s worth a try. Sometimes it’s life and death anyway.
Thanks for your comment. Indeed, migraines are fully preventable by simply stopping sugar and other sweeteners, most carbs (grains and starches), and alcohol. That is the only reason Topamax works for you–those for whom these cravings didn’t disappear, get no relief from Topamax. But Topamax is brain degenerative–just read the full label–if yours didn’t come with one, next time ask the pharmacist to include it. It lists several permanent brain degenerative adverse effects–some permanent.
Wouldn’t it be better to quit sweeteners, most carbs, and alcohol?
Hi, I had IC in 1978 and bladder removed. In 2007 pudendal nerve entrapment. Have been on topomax and Cymbalta plus a Medtronic pain stimulator implanted. So sick of meds. I am scared because I have tried to stop meds and nerve pain came back. Maybe just Cymbalta to start now after reading your article. Thank you. I feel many of those symptoms, especially not being able to cool down.
Wow, I hope you will feel better Mary!
Hello, I am a 55yr post menopausal female with no previous history of migraine. Out of the blue I developed daily debilitating headaches some with visual aura,and by daily I mean ALL day. Not a minute of the day was I headache free. If going by a pain scale of 1-10 Not all of the headaches were at lvl 10 but still there none the less.This has been going on for roughly 3 months.I was started at a 50mg dose of topomax at bedtime for 1 month. After 1 month there was minimal improvement a return visit to primary care doc changed the diagnosis to cluster headaches. Topomax was increased to 100mg at bedtime. A noticeable improvement this time with the only side effect being occasional buzzing and tingling in fingers. Being as headaches were down to two a week now I can tolerate that just to be almost pain free and able to function daily was an amazing relief. Another follow up with doc and a 50 mg morning dose was added. Yesterday morning upon waking the most bizarre thing occurred. My alarm went off on my phone. I went to turn it off and I noticed I was seeing tracers kind of like you do when you move something really fast. Vertical lines were all out of whack I could see three doorway etc . I’m not sure if this is some kind of new visual aura or a side effect not listed. The entire experience only lasted a few minutes then the world became normal again. I’m finally pain free and feel devastated and afraid I may have to go back to the experience of daily crippling headaches. I do have a call into doc, but it’s the weekend so not expecting to hear anything until Monday. Have you heard of this before?
Unfortunately I have heard of the kind of experience you had. Topamax is a medication for seizures and as such, it blocks a vital channel that allows your brain cells to communicate. What you experienced is literally “missing” or “delayed” parts of the image coming into focus as a result of lack of brain cell communication. Topamax is a brain degenerative drug and so expect more issues the longer you take it.
I like to emphasize that migraine is not a disease and needs no medicines. Migraine is a metabolic condition–a symptom that requires a change of diet to fit the kind of brain migraineurs have. I wrote quite a few articles on this blog about what migraine is. I think you would understand more and benefit greatly by reading some of them here, here, here, here.
I hope you will get a better insight and also try different methods for migraine than medicine.
My doctor put me on topamax about 4 months ago she started me out with 100mg a day, my migraines were unbearable. But now I’m realizing the side effects of the topamax is even worse, I haven’t felt like myself at all my memory is horrible, and I feel like I’m just living in a dream half the time. I honestly think I’m losing my mind. I didn’t know you couldn’t quit cold turkey, that would explain why I’ve felt so sick and in so much pain.I’m currently almost 2 full days without taking a dose. What should I do?
It is not possible to quit a drug that controls how your brain functions cold turkey–you can cause a seizure for yourself. Please go back on Topamax and discuss a reduction method with your doctor. You have not taken it long enough to have trouble titrating off as per pharmaceutical titration speed. So please take your medicine tonight–or at least take half of your medicine if it is not the time release version (that is called Trokendi). Then please talk to your doctor for reduction directions.
You are welcome to join my migraine group where we teach you how to become migraine free without the use of any medicines. Please join my group here.
I am looking forward to seeing you there and helping you.
Thank you for the article….. I take Topamax for Pseudotumor Cerebri (a fairly new and rare condition) it’s the only 1 I can take for Pseudotumor out of 3 that work for it. Other I’m allergic….. anyway, when first taking Topamax it def took down my brain swelling caused by Pseudotumor. Thankful for that because I was loosing my eyesight due to the swelling. After about 1 month of taking Topamax I got severly depressed for only a week! Weird! But it was awful! Was struggling to be myself again. I’ve never been depressed before. The whole time taking Topamax I had severe brain fog. Couldn’t carry a conversation I would forget what I was saying…. I couldn’t even work it was embarrassing.
Stopped taking topamax after Pseudotumor seemed to subside like a miracle unlike others….. but after 6 months I needed to go back on it again due to more swelling in brain.
So the main thing I would like to say is that Topamax has changed me….. I think……. Im not the same as I was before I started taking this. I keep wondering what’s wrong with me? Do I have a hormone imbalance? Why do I feel like this? Why am I fighting with ppl? Why are little things bothering me so much? Plain and simple…… Topamax changes who you are!!! But it sucks because it’s the only thing I can take for my condition! I feel sad
Very sorry to hear what you are going through. Did your doctor ever discuss spinal tap to release the pressure? Pseudotumor Cerebri is pressure building up in the brain for no known reason and often a spinal tap–which has to be repeated regularly–is the best way to handle it without medications. If I were you, I would ask for a second opinion and investigate the option for a spinal tap instead of Topamax. It may or may not apply to you but it is worthy a try. Also, there are other medicines you can try that may help you better. Try to press for more help and more information! <3
That is completely FALSE. Doing spinal taps over and over is not the best way to help iih. I have lived with iih for years and many statements you make about the illness are not true at all. Yes, it is often found in obese individuals, BUT it is most the time not why someone has it. And many times it never goes away. Also, you give a definition of what pseudotumor is and for someone who has it, doesn’t need a definition. It is life changing. When a spinal is done, it comes with many other issues. Low pressure, which can make you have the most painful headache imaginable and it only relieves the pressure for a short period of time. Also without medication you could go blind. The only way to get a prognosis is by a spinal tap, so why would you ask the person who posted that if they got one? It is extremely painful living with iih and to hear you respond as if you are an expert, when clearly you are not, is infuriating. She stated she exhausted all other medications for it. Angela, its best you stop responding to just sound relevant. A true doctor would keep their mouth shut or at least look it up before trying to sound like a neurologist.
There is nothing false in having spinal tap for IIH (Idiopathic intracranial hypertension, which is also called pseudotumor cerebri), see Mayo Clinic recommending it as one treatment here, which is precisely where my original recommendation came from. Whether it is the best way to treat or not, is not for me to decide but for each person’s medical team. There are limited options without medicinal treatment. It is each individual’s decision whether they will want a medicinal option or not, so Nicole clearly needs to have her options evaluated and researched herself.
By no means have I tried to sound like a neurologist by citing evidence-based medicine from Mayo Clinic and by recommending that she get a second opinion. You anger is unwarranted, shoal, and ignorant.
I have been taking Topiramate for the last 14 years at 200 mg/day. It is prescribed for migraines but we are also using it to treat a mild mood disorder. It works well for the mood disorder as nothing else helped. I have noticed a multitude of the side effects listed and am curious if I were to ever discontinue the medication if the side effects would go away. I am currently 37 years old and female.
Wow, 14 years, so you started at age 23 when your brain was not fully developed yet (some parts of the brain finalize in our early 30s). Some changes are permanent but with a caveat: cells replace in the body–even in the brain. One can also force autophagy (cell death and replacement) by modern techniques, such as fasting, which prompts the body to optimize, get rid of cells that cannot be fixed, and fix those that are damaged. Therefore, there is hope. In all frankness though, we will not know until you try it.
Coming off Topamax is not enough. After coming off you would have to embark on a journey that is brain regenerative, which is the ketogenic diet with very low carbohydrates and very high fats with plenty of fasting. This is very beneficial for the brain, which is made of over 70% fat and over 25% of the body’s cholesterol is in the brain. So in general, over 90% of the brain is of the substance that is eaten in a ketogenic diet. The ketogenic diet changes the body’s metabolic processes from glucose burning to fat (ketone) burning. On such a diet, you are able to fast for a longer period of time without hunger. It takes over 16 hours (preferably over 20 hours) of fasting to start cellular regeneration.
This would be the only option I would do if I were you (in fact I am doing just that for over 3 years now!).
This is something for you to consider.
I have two migraine groups on FB that can help you become migraine free without the use of any medicines, but for your medicinal reduction please ask for your healthcare provider for support. Most of the time the recommended titration is way too fast even after one year of use and your 14 years is substantial. Your titration period will have to be much longer than standard and you need your doctor’s support to prescribe refills for a longer period than usual. Once approved, the protocol migraine group can help you become migraine free while you are titrating off and then later the ketogenic diet migraine group can help you get on the proper ketogenic diet for migraineurs.
I am looking forward to seeing you in the protocol group,
I have been taking over 300 mg of Topamax for debilitating migraines for many years now- While I know that Topamax can cause elevated calcium levels in the urine, I was wondering if you knew if it also caused elevated blood/serum calcium levels. I currently have a very high blood calcium level and was curious if this might be a factor here. I don”t see this side effect listed anywhere else.
In any case, I have decided to begin tapering off of this insidious drug- I only hope it’s not too late to reverse the horrible side effects that I have for many years experienced and have only intensified and multiplied more recently.
I am happy to have found this informative website. I am frankly so frustrated with the “ helpful” doctors who have left me in this position without ever providing any caution, too tired to be angry and it always feels like I’m fighting for my life to either get on or get off of the stuff that’s prescribed to help.
Thanks so much for your help.
Thanks for your comment. Indeed, Topamax (and all voltage depended calcium channel blockers) increase calcium in the blood–that is blood serum calcium levels. You can find the numbers of how many people reported this here. It makes a lot of sense, since calcium is blocked from entering the neurons and they must go somewhere. High calcium levels in the blood are factor is cardiovascular disease, so it is important to get calcium out of your blood and into your bones or out of your body. Calcium is fat soluble, so to get it into your bones, you need to ensure you are eating enough of the right kind of fats–and the right kind of fats are not vegetable oils. So have some animal fats. Have full fat milk or soft cheeses like Brie, or sardines or other fatty things that also have calcium in them that will channel your calcium to the right place.
Some side effects may be permanent after tapering off Topamax. However, if you are not taking any other medication, you can go for the ketogenic diet with fasting, which induces autophagy. Autophagy removes non-functioning cells and mitochondria and replaces them with fresh ones and also fixes damages cells. For this though, you need extended fasting–3 days or so–which will give you a migraine if you don’t do it right. I have two migraine groups, one to help you get off of Topamax by supporting your body such that you learn to prevent your migraines without the use of any meds, and the other for the ketogenic diet where you learn how to reverse damages by doing keto right for migraineurs. Join first the protocol group where we teach you to be migraine-free.
I am looking forward to seeing you there. 🙂
My migraines have stopped by taking Topamax but my brain is mush my memory is gone and I seriously need some help what do you suggest.
What you observed is the most common adverse effect of Topamax. Very sorry to hear. In most cases this reverses when you stop Topamax–though please do not stop Topamax cold turkey! If your doctor supports your coming off Topamax (in the US you don’t need your doctor’s permission but support would be great for tapering schedule refills), you can taper off it. The standard pharmeceutical tapering schedule is too fast for most people, so your doctor’s support of a slower reduction is essential. I have a Facebook migraine group that can help you learn how to prevent your migraines without any medicines. Please join us here.
I am looking forward to seeing you there,
I have been on Topamax 50 mg twice a day for 6 months for diabetic neuropathy in my toes. It has been the only medication that has helped me. I tried Elavil (no help), Neurontin (extreme diarrhea), Lyrica (uncontrolled glucose levels). I was up all night having to take Oxycodon to even be able to get a couple of hours of sleep. I have heard of many of these side effects, but have not seemed to have been bothered too much by them. I have had some malaise, some slight mood changes, but most of all almost no pain in my toes anymore, amazing! My blood work has seen some changes such as slight anemia, lower TSH, higher PSA, but nothing major. My doctor is keeping an eye on those. I searched on Drugs.com to find a solution to my neuropathy pain and found Topamax had a high rating, so I asked my Doctor for it. I was desperate for a solution. I DO NOT want to be relagated to opioids for pain relief. With all that said, I do understand the many side effects of Topamax. Do you have any other suggestions me?
Glad to hear that Topamax works. Since diabetic neuropathy is believed to be permanent (I am saying “believed to be” because it may be reversible only we don;t know), Topamax may be your ideal solution. I ma not a fan of medicinal solutions for health conditions that are preventable and/or treatable with nutritional changes, so I cannot recommend for you any medicine. If you were my patient, you would not have diabetic neuropathy now.
A couple of important things that you may not have been told about diabetes, rather than Topamax, if I may–and this is what I would have told you had I been your MD.
Have you ever been told that type 2 diabetes is reversible (or at least can be put to remission) and is completely preventable? In other words, diabetic neuropathy is preventable as well. Most people are not told what actually causes diabetes and how they get to the level of diabetic neuropathy, so at the risk of repeating something you may already know–but to educate those who don’t know–I would like to write a little about what causes it and how to prevent it. I suppose I should write a blog article on this soon.
I have met doctors, nurses, and, of course, people of all types, including diabetics and non-diabetics (both T1D and T2D) and I found it scary how few understood that the thing that causes all this damage is simply carbohydrates. By cutting ALL simple carbohydrates and greatly reducing ALL complex carbohydrates (or stopping the consumption of any carbohydrates at all, like I did) out of the diet, T2D is preventable and T1D is possible to fully control with minimal insulin.
The most typical simple carbohydrates: all types of sweeteners in any shape, color, or texture, all foods that are sweetened with anything, all foods that are ground or blended to the consistency of flour or liquid, such as all fruit juices, shakes, smoothies, canned fruits, all vegetables that are in can, smoothies, juices, all ground or liquefied nuts (like nut milks), and seeds that are pulverized or ground or made into liquids, such as milk substitutes. All grains we eat in the US are simple carbs because they are ground to a powder before baking. Also high starches like potatoes and carrots are just pure sugar for the body.
Complex carbs: are whole foods (not blended or shacked or canned) that have a lot of fiber, such as salads, lettuces, all cruciferous veggies, nuts, seeds, and fruits whole with lots of fiber in and skin on. Many of these are high in sugar content, and those will cause trouble. Low sugar content high fibrous types, such as green leafy veggies and cruciferous veggies are the only healthy ones to consume.
It must be stated that of the three macronutrients: carbs, fats, and protein, the only non-essential one–meaning we don’t need to eat any at all–is carbohydrates. Yet, the majority of the nutrition of all people is made up of carbs. Why? They taste good but make everyone sick. T2D is caused by the over consumption of such carbohydrates (both simple and complex). And what do I mean by over consumption? For some people a single raspberry is over consumption while others can eat a bowl of cereal. However, this is what leads to T2D and that causes diabetic neuropathy!
With a complete change of consumption, many nerves can be fixed and/or replaced. I am not sure if diabetic neuropathy is reversible–I have not seen any discussion about that (I have not looked though research may exist). But the least you can do is to stop eating the foods that caused it the first place. T2D leads to the loss of vision (complete blindness), amputations, kidney failure, stroke, and heart attack. It is preventable…. now you know how. Try and see if your neuropathy can be reversed.
Best wishes to you,
Thank you for your reply.
I am a T1D on an insulin pump. My A1C is running around 6.4. I have tried cutting back to 25 mg twice daily, but after around 4-5 days, my toes start to act up. I am thinking of trying the neurontin at 2400-3600 mg per day along with an anti-diarrhea medication as I understand the side effects are not as bad with the neurontin. I would love to not have to take anything but I don’t know if that will ever be possible.
Again, thank you for your time and response.
As a T1D patient, are you familiar with the LCHF (low carbs high fat) diet? Latest research with T1Ds show that the LCHF diet can reduce the amount of insulin you need by 2/3rd and can also keep your A1C at normal <5.5 level. The problem with T1D is that since your pancreas doesn’t make insulin, every time you consume carbohydrates–many of which I listed for you last time–your blood glucose increases to levels that harm your body, causing neuropathy, even before your pumped insulin starts working. Controlling your T1D by reducing the amount of carbohydrates you consume to the minimum necessary–and you can see what that minimum is with your glucose monitor and insulin pump–can greatly improve your health. I recommend you check out dietdoctor.com and though it is not free, the first month is. It is not a site affiliated with me in any shape or form (other than being a member myself), but they have very good information for people with type 1 diabetes on how and what to eat to avoid the trouble you got into.
I am not sure if one medicine is better than the others as they all pretty much do the same thing… So stick with the one that causes most relief with the least damage. However, I would recommend you look into changing what you eat to control your blood glucose better and stay safe and healthy longer.
I have been taking Topamax for 3 years for migraines. You name the side effect, I’ve probably experienced it. My doctor gave me ZERO heads up in the beginning. Just prescribed it and sent me on my way. I even went to the E.R. because of my symptoms, I thought I was having a stroke. I was only 22 and was terrified. Out of PURE luck my E.R. doctor also took Topamax and sat me down said I would be alright and explained it to me. As long as I take it correctly it completely obliterates my migraines. I still deal with numbness in my hands, tingles, forgetfulness, dizziness, feeling faint, lack of sex drive, inability to orgasm… And more. But, to me, it’s worth it to not have to lay on a cold bathroom floor for up to 4 days at a time, vomiting, feeling like my head is splitting apart. I still read articles often to know I’m not alone in this. I’m still thankful it exists.
Thanks for your note on how well Topamax is working for you. I am glad it is working for you. However, I have many migraineurs in my FB migraine group who will tell you that yes, it works for some time and then it stops working. These migraineurs end up taking several other medicines. By the time they join my group, most of them take at a minimum 5 medicines plus triptans for the times when a migraine breaks through regardless.
In addition, it is important to note that Topamax has black box warning about it being permanently brain damaging! It is important to understand what that means: Topamax causes brain degeneration. And while, on the short run, this is not important because the brain is adaptive and can regenerate most, if not all, changes, the longer you are on a degeneration-causing medicine, the more damage you accrue over time, and the more difficult (or impossible) it will be to undo the damage even after you quit the medicine.
And finally, migraine is a metabolic health condition. In and of itself, without nutritional assault, there is no pain associated with a brain that has the anatomical differences and is capable of generating a migraine. It is a different brain from the brain of the general population but that doesn’t mean it needs to hurt. It has more sensory neuron connections, is more alert, and uses more voltage energy. In addition, it has been shown in thousands of academic research papers that migraine leads to type 2 diabetes. It is now evident, based on my book’s description of how that happens, and some academic journal articles that are beginning to show up, that migraine is really the consequence of the brain’s inability to use glucose well.
Migraineurs are glucose sensitive, which is a synonym for type 2 diabetes. Eating carbohydrates of any kind, for a migraine brain it is a nutrition that will start the cascade toward the pain that you, apparently, take away by a brain degenerative medicine. It is impossible to reverse a nutrition-caused damage by a medicine. The damage will still be made and you will end up diabetic no matter what medicine you take. Likely Topamax will also stop working at one point. It sounds like you are still young. There is really no reason to eat the foods that harm the brain of a migraineur. The best way to handle migraine is by changing your nutrition and not with medicines.
I so far have worked with over 4000 migraineurs, all of whom stopped taking all of their medicines and are migraine free–provided they honor the nutritional requirements. You are welcome to join my starter migraine group on FB to learn how to do that and once you are fully at “baseline”, you will be able to stop Topamax for life. Of course, many people prefer the simpler way of medicines and eventually end up on 20+ medicines and still have migraines, ending up disabled for life. It is a pretty bleak picture if you don’t eat what your body can function on.
Best wishes to you,
My Dr prescribed topamax to me to help my migraines right away I felt the symptoms I was nauseous my whole body went numb and I hardly ate let alone got out of bed I went back for a check up 2 weeks later and complained but the answer I got was so annoying she told me I needed to give the medicine time to get into my system my husband kept telling me to quit taking them because he said they are killing me but I was so desperate to get my chronic migraines under control until I felt like I was truly losing my life n my dr wouldnt listen I stopped taking them and demanded she do a mri and mra they found my migraines to be more vascular. Now I’m wondering if the nerves in my face got injured because I have constant muscle spasms on the left side of my face that started when I started the meds. My husband is furious and is treating to sue because he really believes they were trying to kill me because they wouldn’t listen i still have migraines almost every day but I rather have them then feel like I’m about to die they put me back on inderal 150mg which I was on before the topamax and I hope it starts kicking in soon this drug should be banned its a killer if I wouldnt have listened to my husband I truly believe i would be dead!!!
I am so sorry to hear that you too fell victim of Topamax. Unfortunately the industry pushes that drug and it works for nearly no one–a single person here and there but for most it doesn’t work. It can leave permanent damage behind though if you only took it for a short time, the adverse effects it left behind will depart, provided you work on it. I have been working with migraineurs for several years and I am a migraineur since childhood, so I know what you are going through. I created a couple of migraine groups on Facebook to help migraineurs. You can find the one we invite all new migraineurs into here. Please join us. I have the 2nd edition of my migraine book, a complete guide to migraine prevention and treatment, available in stores in paperback and on amazon in e-book and paperback, I link you to the one on amazon.
Migraine is completely preventable! So far over 4000 migraineurs have gone migraine and medicine free. There is absolutely no need for medical treatment but you do need to learn what a migraine is, why you have it, and how to go about preventing it. This is something you were born with–it is a different brain from people with regular brains. So for the rest of your life you will need to follow a different lifestyle. Medicines don;t work because they address only the symptoms but not the cause. Once you get rid of the cause, your symptoms will not arrive. 🙂
Best wishes and I am looking forward to seeing you in the migraine group,
I’ve been on Topamax for approximately 9 months to a year. I’ve experienced a lot of side effects listed. One that I’m noticing the most is “skin sagging” in my face and chest and my elbows and belly (among other areas). It looks like I’ve aged 5 years in the past 9 months. Is this a side effect of Topamex? If so, is there any hope of reversing it once I stop taking it…or am I doomed? I used to get compliments on how I looked younger than my age. Now I can’t stand looking in the mirror…I’m about to get as I type this, that’s how bad it’s effecting me.
Very sorry to hear what happened to you. I believe it is because of how Topamax blocks the voltage dependent sodium channels as well as the voltage dependent calcium channels, so your cells are not able to hydrate. I am making the assumption that this is a major dehydration that you are experiencing–this is just a hunch as I have not heard this particular complaint before. I would like to make sure you are drinking enough water: calculate by taking your weight in lobs, say if you are 150 lbs, as a woman, over 55% of your body is water, so take 55% of this: 150* 0.55 = 82.5 oz of water is your minimum (with this weight). Divide that by 8 to get per 8 ox cup: 82.5/8 = 10.31 glasses of water so minimum you need to drink 10 glasses of water a day. Please calculate how much you need. Water in foods doesn’t count because the metabolic pathway is slightly different. Be sure you increase your dietary salt a bit to compensate for the extra water–we don;t want you to dilute your electrolytes. Increasing your water will also make you feel better and if you also increase salt, you will not urinate more either. Make sure you eat plenty of potassium.
If you need to increase your water a lot, please increase very slowly–not faster than half a cup of water increase a day! Increasing water too fast can lead to water toxicity, which can be fatal, so please follow slow water increase.
Please discuss with your healthcare provider if you need to increase your water and salt. We certainly don’t want any negative outcome. Also, your doctor should know about your adverse effect. If you wish to come off Topamax, please ask your doctor to provide you with a slower reduction schedule than what the pharmaceutical companies recommend. They are way too fast and most people end up going back on Topamax as a result. A slow taper is much more comfortable but your doctor needs to agree.
Best of luck,
so i have a hx of chiari malformation. i was having a bad flare up of my neuro symptoms so i began taking the Topamax i was prescribed early. about a 1.5 weeks into taking the meds, i started feeling tingling in my feet and numbness in my arms. I was so confused on why this was occurring until i read that this medicine can cause neurological side effects so i stopped cold turkey (didn’t know you were supposed to wean of medication.) But then about 1-2 weeks later, i started experiencing muscle twitching. Could this still all be due to the Topamax or could something else going on? And if so, how long can these symptoms last?
I can be an adverse effect that remains after you stop Topamax so suddenly though 1-2 weeks after you stopped it is not likely. It would have started earlier I would suppose. Muscle twitching can also be a symptom of not enough magnesium. Are you supplementing magnesium? Muscle cramps (not twitching) could be salt issues–Topamax blocks voltage dependent sodium channels and it is possible also that you may have now a sodium imbalance. I would try magnesium first to see. Maximum RDA on magnesium for adults is 400 mg a day.
Hope this helps,
Hi Dr Stanton,
I have been using topamax for ten years. Although I class it as a miracle drug as it wiped out my migraines and I use it for epilepsy there have been a few issues along the way so I thought I would share my story. I am actually writing this from hospital as a few days ago I developed kidney stones which I am guessing were from the topamax.
In 2008 I was placed on topamax as no other migraine medication worked. Despite having multiple degrees in criminology I struggled to find permanent work as I would get up to three migraines a week. I think they were caused from having hydrocephalus from being born fifteen weeks premature and having a shunt. I went on topamax and found that my migraines disappeared. However I noticed that my stutter, which I developed when I was younger. Was much worse. I could barely talk and I struggled in job interviews. I fixed this by returning to speech lessons and eventually I got permanent work. I think due to my stutter and other side effects of topamax (difficulty finding the right word etc) it did take me while to land my dream job as an Intelligence analyst but after eight years I finally got there! I also completed my masters with excellent results and now I am doing my phd. I have noticed sometimes I will lose my train of thought but eventually it will come to me. Despite this my intellectual ability hasn’t been impacted nor has my long term memory and with speech lessons my stutter is almost gone.
However i think back to the side effects and think a few of my other issues are caused by topamax. For example I have rosacea, blephrits around the eyes, fluid retention in the ankles etc. not to mention recently kidney stones. I will be discussing this with my neurologist but I am guessing the key is to drink lots of water
Thank you for reading!
Thank you for your comment. You are a very fortunate person that Topamax works for your migraines and also for your epilepsy as it is only a secondary treatment (as per FDA) for epileptic seizures and is not to be prescribed on its own. Not sure if this is the only medicine you are taking, but it is quite opposing the FDA recommendations.
Kidney stones can happen for many reasons, including not drinking enough water and also as a result of Topamax, because Topamax acts systemically all over your body, shutting down functions little by little. You may not feel its neurodegenerative effects “yet” but most likely you will as you age. In fact, stuttering is one of the degenerative signs. I met a couple of people who ended up with stuttering as a permanent damage that remained after they quit Topamax as well. Losing your trail of thought (a.k.a. “senior moment”) is a form of degeneration, as it is not natural for even the elderly–I know that in our modern nutritional era it is the most common thing but prior to Western Civilization commercialized foods, “senior moments” were not common and are still not part of the natural ageing process in tribes that eat their original nutrition.
I don’t know how old you are, but certainly the last thing you need is senior moments while getting your PhD.
Some of the other adverse effects you list are likely from Topamax though they can also be nutrition related–perhaps the combination of the two. I am sure Topamax provides some benefits to some people at least some of the time. The problem is that it is a symptom treatment. Epileptic seizures are symptoms of broken communication between your cells because of lack of proper myelin insulation around each nerve axon. There are nutritional methods that can deal with that and though not everyone responds to treatment, the majority do and they gain permanent relief for life after a couple of years on the ketogenic diet, tailored specifically for seizure control. Migraine responds extremely well for nutrition control as it is a metabolic disease–as one of my last articles describes. You may want to read that.
I am a firm supporter of non-medicinal approach by fixing the underlying cause rather than by covering up symptoms. Not only is the observation of symptoms important for healthcare researchers, but it is also important observation for your body! Your body has natural pain killers and an immune system that is supposed to receive messages and signals of things out of whack by pain and other symptoms. For a silly example: muscle ache after a heavy workout is a very important symptom for your immune system to 1) reduce the inflammation and 2) increase the strength of that particular muscle group! If you take an anti inflammatory medicine for muscle ache after your workout, your muscles will not become stronger. I think as silly as this example is, it demonstrates how the body works and why taking medicines for symptoms is a bad thing from the perspective of healing.
Good luck with your studies and with your visit to your neurologist, whose interest is to keep you on Topamax and not to eliminate the cause–and thereby himself from your life.
I suffered loss at brain bcos of topamax.i read your article on this. I was given topamax for anxiety due to mild 5 ht2c stimulation bcos of paroxetine.
8 months after withdrawal of topamax and being on no medicine.the dangerous withdrawal came.potassium channel opened and neutrons kind of burnt due to excessive sudden voltage.and capacity to build further neurotransmitter reduced.shall recover in years now with good diet and exercise.bullshit medicine and doctors underestimate its side effects on withdrawal.should be banned
Very sorry to hear what happened to you Sudhir! I agree, Topamax should be a banned drug or at least restricted in use for only seizures–which is where it does a medium job at. It is quite useless everywhere else.
I wish you recovery over the years!
How long were you on Topimax
Hello Dr. Stanton,
Thank you for your article. I found it very informative. About a month ago my doctor put me on 25 then 50 mg of Topamax for migraine prevention. A month in, I don´t know what´s worse: the “cure” or the disease. I have constant pressure in my brain, My cognition has slowed, my hair is falling out, I have difficulty articulating, pins and needles and a constant low grade headache to boot. My doc insists that I give the drug a chance (at least 3 months); he claims these are “normal-ish side effects”, but I don´t think I can take this anymore.
Thanks for your comment. If you ask me, the medicinal “cure” is a lot worse because it is not a cure, only symptom treatment at a cost of permanent brain damage. It just isn’t worth it when there is an alternative. I recommend you join my migraine protocol group, which will teach you how to become migraine free without taking any medicines–it is completely possible. You find the group here. Please be sure to answer the 3 questions at the virtual doors. 🙂
Looking forward to seeing you there,
I too have very similar side effects. With added tingling in my feet and increased drainage from my sinuses. To the point its embarrassment if I bend over I have no control of drainage out my nose. My doc added 50mg to my daily phentermine I take in the mornings and have been taking about 10 weeks now. I would love to stop the topiramate cold turkey starting tomorrow. I’ve tried contacting my doc by phone and email and still no return. Do I need to taper from the low dose and being only 10 weeks on? Or can I finally be done and let things go back to normal?
Yes Domini, please taper!! And Topiramate is a time-release version so you cannot cut the pill. 10 weeks may not be so much but I would feel much better if you talked to your doctor. Please make an appointment with your doctor and ask is replacing Topiramate with Topamax would be the way to taper. Topamax is the same drug but not in time release. That then you can taper but cutting if 10 weeks of taking merits a taper. Only your doctor can tell.
Best of luck!
I moved back to my home town from Phoenix. I had no problem getting my prescriptions except my Lyrica for my RSD. My neurologist said Lyrica is hard to get and it causes weight gain. I told him I didn’t want to try anything new because I’ve had quite a bit of problems with other medications and their side effects. He couldn’t get my Lyrica and after 3 months I felt like I had no choice. My night sweats were so bad . So he put me on Topamax. I kept feeling like something was wrong but couldn’t figure it out. I keept getting more forgetful . Very racey in my chest. Paranoid. Toward the end of this nightmare the Doctors thought I was over medicating. Finally after so many months of saying I do not feel ok. Something is wrong. My primary looked at my chart and said I bet it’s the Topamax. You know we Doctors call Topamax Dopamax . I was like I didn’t want to be on that stupid stuff in the first place. I still wonder what kind of effects it did on my mind for being on it for the time I was.
Thanks James for your comment. Glad you came off that drug–not sure why Lyrica is hard to get… I find that odd. In any case, Topamax can cause some “permanent” damage. I put that in quotation marks since there is a way of regenerating your brain cells and repairing most everything–there remain a few exceptions. Topamax is called Dopamax by doctors–it is well understood. New research shows that brain regeneration is possible by fasting 18+ hours for a couple of days. I am on the ketogenic diet that makes such fasting very simple. Talk to your doctor about the ketogenic diet. If he faints, ask some more advanced nutritionist–there are many on the Internet you can find who will be willing to advise you long distance via skype or similar. 🙂 You can heal all damage caused plus other health conditions.
I’m on Topamax since 6 months, and I really don’t know what’s going on with my mind and body right now, but I think it’s because of this medication.
At first sorry for my english, it is not my national language and my mind is really slow and limited right now so this message could be funny.
I was taking topamax in the past for about 6 month and I stopped because it caused paranoid thoughts and depression in last month of taking. My doctor gave it to me because I have BPD and eating disorders – anorexia as a teenager and bulimia next. Through the few first weeks of taking topiramate I was feeling great – no problem with food and mood. In the 6th month of therapy I had anxiety, was super skinny, super sad and scared about who-knows-what. I just quit taking this.
But I started again last year because of my problem with food mostly and with dangerous behavior, as a mood stabilizer with fluoxetine to prevent the depression. I couldn’t take both – I just have no contact with the world because my brain was so slow, I couldn’t rememer anything. I was really tense, couldn’t sleep at all and have cold sinking sweats every night. So we decided to take only topamax in small dosage – max 75mg.
There’s no sense in my opinion to descibe all my way and feelings with this medication, so I describe only what i feel right now. I have no energy. No at all. I take 25mg in the morning and 25mg in the evening. I can’t sleep at night, just lay in the bed and waiting for something for a long time with so many thoughts in my head before I fall asleep. And can’t get up in the morning and my muscles are tired. I’ve lost half of my hair, my skin is worse, my period is so small I can say I havent got it. My skin is dry, but face and body is swollen. I think I put on weight but I don’t really eat much. My self-esteem is low as hell. My mind is slow – REALLY. I feel like witless. I was always a smart girl and now I prefer to just sit alone and think about who-knows-what (nothing good at all). Can’t remember anything and I’m a student now. And a lot of tension, anxiety and depression, often angry, ready to cry in every moment. Everything makes me sad and stressed.
Do you think is it possible to topamax have some influence to the thyroid? I had the USG and my doctor said it could be the Hashimoto initial stage. I know that antiepileptic drugs can make the ft4 level down (as In my situation I have it in the lower limit of the norm).
I feel ruined, in my menthal and physical health and just don’t know if Topamax caused it.
Sorry for my engish again, and for the mess in my message too. I have bigger in my head I swear 🙂
Wow Anna, I read this several times because I teared up and didn’t know where I stopped reading. I am so sad for you. The short answer is: yes, Topamax can do this to you. Topamax reduces brain activity–that is what it is supposed to do. It was originally a weight loss drug but had so many side effects that the FDA removed it from that category. It then later surfaced as a seizure control drug. It is really not good for that either so it is used only as a second drug next to a primary one. Now it is prescribed for everything that moves or doesn’t move. I think if there was an award given for the “worst drug to ever take” it would win hands down.
Also Anna, this is a symptom “cover up” and doesn’t address the underlying cause of your health condition: eating disorder. It is unclear to me if eating disorder is a physiological condition (meaning something is different in your brain for whatever reason: genetics, damage at birth, or later) or a psychological one (meaning it has no physiological cause but is a self-image “misunderstanding”). I have read articles that support both so hard to tell. But reducing brain activity by a drug is hardly even a cover-up treatment of the symptoms. Topamax modifies the brain in many ways–some permanently. I don’t see why this would be the medicine of choice for you.
And yes, Topamax can do so much damage that may even turn genetic switches on (epigenetics) to turn your immune system against you (Hashimoto’s Disease). Having underactive thyroid may not be Hashimoto’s though; you wold need to get a different test (immune response test) to see if the underactive thyroid is from Hashimoto’s or from simply not enough iodine, not enough fat, and not enough cholesterol, calcium, and vitamin D in your diet. I heard that many people lose their hair on Topamax–something that will grow back if you stop–though it can also be from lack of proper nutrition. The fact that your period is stopping suggests to me severe malnutrition.
It is totally OK to eat little if your not active but you need to eat “nutrition dense”. To give you an example, if I can chose between two meals as follows:
a bowl of salad, a bowl of potato soup with ham and bread, and a slice of cake ~ 1000 Calories
a bowl of salad, a slice of steak with broccoli and cauliflower mix, and a bowl of raspberries, also ~ 1000 Calories,
I would chose the 2nd option because there is very little nutrition in the first option and a TON in the 2nd option, yet they both are the same Calories. I think that eating disorder is very hard because you don;t like to eat and you definitely don’t like a regiment to follow. So follow your own will and choose highly nutritious food so you can eat as little or as much as you wish. <3
I wish you all the best for recovery. (PS: your English was just fine! 🙂 No problems understanding you!)
Thank for your message! You gave me some power to do something with my health.
You know what, in anorexia you’ve got a control, in bulimia you haven’t. Food is like a drug, but we all have to eat if we want to live it’s simple. And difficult to eat right if you know what I mean. I don’t believe in recovery at all, just can learn to live with mysefl in agreement and acceptation and don’t believe what eyes sometimes sees. But you’re right – Topamax is not a good way to solve this problem. The game is not worth the candle – like we say in our country in situation like this 😉
I’m going to gradually discontinued Topamax, no other option. Damages are even bigger than my autoagressive personality can tolerate, and the dosage wasn’t high. Horrible.
Thank you very much once again, I’m glad I found your page and this article.
Very happy with your attitude and strength Anna! Indeed, you have control. You do because you accepted who you are and that is a battle won. So just keep to your plan and you will manage great and come out on top. <3
Thanks you for reading my page and I wish you the best life ever,
Apologies if you have already addresses this. I have read through some of the comments and could not see it but there are just too many to read all of them!
I suffer from Menierres Disease and was prescribed Topomax to control my migraines (believed to be the cause of the MD). I am also taking Betahystine (Serc). Since taking Topomax my migraines have decreased from approximately 20 a month to a minor headache 3 days per month. I believe the 3 day headache is hormone related. I am a big believer in the Banting way of life and have tried it a few times but failed to maintain it. I get very constipated on it even with drinking almost 3.5 liters of water a day (required for MD). Coffee used to help but because of MD I cant take that anymore. Reading your article again has inspired me to try it again.
Brain fog is a problem for me with or without Topomax (due to the disease) but I am worried about the long term effect Topomax will have on my body which is why I went looking for more info and stumbled across your research. Am I correct in assuming that you suggest using increased sodium to control migraines? I want to join your FB group for the ketogenic way of life and the tips on how to live migraine free the natural way but sodium the biggest trigger for a MD sufferer and without Topomax I will have to be 100% strict with my diet to avoid attacks.
I would appreciate your feedback.
Hi Marelise (what a pretty name!),
I am glad you reached out for a couple of reasons. One of them is Menierre’s disease (MD) with connection to migraine and the other using Topamax while on the Banting diet. So let me address each separately.
1) MD is very much part of migraine and responds very well to increased diatery sodium–though I am sure you were told to reduce it, as that is the standard of care. The standard of care assumes that MD is water collected outside of your cells as edema and is splashing left and right in your inner ear. This is quite incorrect, since edema collects in the interstitial fluid around the cells and never ends up free-floating water… Sodium retains water inside the cells so when you have too much water in the interstitial fluid (region around and between cells), the best thing is to take salt to bring the water back inside the cells and dispose of it properly by the cells excretion process. MD is often associated with migraines simply because migraines are associated with edema, the inability to metabolize carbohydrates, and the lack of enough dietary sodium. Sodium, if applied properly with a diet free of simple carbohydrates and grains, doesn’t trigger MD but helps it go away.
Coffee helps because with the water being outside of your cells in the interstitial fluid, your “relative” blood volume is lower so tightening the “pipes” (blood vessels) helps to increase the relative blood volume. If, instead, you took a salt pill or 1/8th of a teaspoon of salt, which is what all my migraineurs do, your MD would recover, your blood would be volumized, and you would not need the vasoconstriction effect of the caffeine at all.
2) The Banting diet is a pre-ketogenic diet; it is a low carbs high fat (LCHF) diet. As good as that diet is, if you dip into ketosis–which is likely–you have a conflict and interaction with Topamax. There have been many problems with this and finally the FDA added a label change to reflect that Topamax cannot be taken while in ketosis. So, which there is absolutely everything is great about the Banting diet, you need to monitor to be sure to not get into ketosis. However, getting into ketosis can resolve your migraines! I am just writing a book on how to apply the ketogenic diet properly to resolve migraines and heal the brain. I have a keto group for migraines that you are welcome to join once you are no longer taking Topamax; but while you are still taking Topamax, I recommend you join our Protocol group, where the focus is on applying a modified Banting (modified LCHF) specifically tailored for migraineurs and which wil allow you to taper off your Topamax. After that you are welcome to join the ketogenic diet group.
It is important that you “heal your brain” without medicines, and particularly Topamax, since it is well known that it leaves behind horrific brain degeneration and many permanent changes/damages in the brain.
Hope this helps,
[…] Topamax: The Drug with 9 Lives-. – Topamax is widely prescribed for many disparate conditions. Does it work? Is it safe? Or is this overreach medication marketing at its worst? […]
Thanks for your comment–a very important one. It is amazing how little attention eating disorders receive in the news in general, yet so many people battle with the disease–it is not a “mental” disease the way I see it but much more. I totally understand all the suffering you went through and shed a few tears about how your life collapsed as a result of Topamax. I have been working with many migraineurs who had (I say had not have) bulimia. Each and every one of them said the same thing: structure is not good for prevention as it creates a bigger problem. However, I found that it greatly depends on the kind of structure and how it is applied.
In other words, a structure can be a block that you just want to break down (that’s bad), or a guideline to help you to the other side of the fence with health (that’s good). I think that some form of structure can be helpful. Bulimia itself is a mix of a disease of a particular brain region that sees something different in the mirror from reality–but we all have that to some degree, even if not weight specific. So the term is somewhat misleading to me. For example, I often notice that the person looking back at me in the mirror is a very different person from whom I see on photos! Not in terms of weight but in terms of general appearance. I think most women have this and bulimia is just one manifestation of it.
I also think that binge eating comes from several factors, two of those you can do: First, ensure that you are occupied. Binge eating tends to hit when one is bored or is in a bad mood or angry. And these last two conditions: bad mood or anger, are hormonal–potentially insulin related with stress hormones, the combination of which can lead to insulin resistance. Sweet cravings are really not a disease of the mind but is a disease of your insulin and that your brain is not getting enough energy to burn. It is a sign that your brain is not getting any glucose because your insulin is not workign right (insulin resistance) and/or your stress hormones are high and they use insulin so your glucose backs up and its delivery to the brain is delayed. So binge eating as a result of being in a bad mood or angry may have a physiological heath problem behind it rather than psychological. Being bored is easier to correct: find a hobby that takes you away from food and into a world of other pleasures.
Another problem could be what it is that you are eating when you are binge eating. In other words, if you picked a steak to binge on every time you felt like binge eating, we would not be here to talk about it. Right? So what are you eating when you are binge eating? And that is a problem of what is available in stores the most and the cheapest, together with the previous issues. Because if you have a steak there to binge on, you may end up being completely satisfied and not have bulimic trouble at all.
I think your situation can be improved upon by asking yourself what fits from the four things I wrote above. If none, you probably should stay on the low dose of Topamax, since then it is your brain that needs the help from within. However, if it is any one of the four I noted, you can come off Topamax and make some changes in your life such that you prevent situations where binge eating is necessary or if you must, have something that is actually nutrition rich–like a steak, or cheese, or some serious food to binge on.
The reason why the ketogenic diet was not working for you is 1) it interacts with Topamax–the FDA now has a warning label on Topamax to not use it while on the ketogenic diet. It can be harmful. So trying the ketogenic diet while on Topamax, really doesn’t count as a good try on the ketogenic diet. 2) My personal experience–I never had bulimia so not comparable, just want to explain something–on the ketogenic diet is that the first few weeks maybe hard as you switch over to eating with very low carbs, but most people I work with, myself included, find that we end up no longer even remembering to eat. I have gone a whole day without eating several times by now–I was drinking and took lots of salt–but didn’t crave anything and though I have plenty of food to binge on if I wish right in front of me all day long, I have no urge to do so as food is just not on one’s mind when in proper ketosis–proper ketosis fill you up with tremendous energy rather than fatigue so this also tells me you were not really in ketosis.
I think that the biggest problem in the modern American diet (SAD) is that it is full of tasty and completely useless carbohydrates–breads, pastas, cereals, corn-flour things, rice, all other grains, lots of very sweet fruits all year around, lots of very sweet starchy veggies all around the year, juicing, smoothies, and shakes are the biggest fads–all are pure sugar–and loads of sugar substitutes, which cause carbs cravings. Note I didn’t even mention candies and desserts under carbohydrates yet just what people consider food and which are not really foods at all! Most Americans eat carbohydrates all day long and these are responsible for your binge eating.
For a bulimic, cutting carbohydrates out is a hard thing since that is usually the very subject of binge eating. However, of the other bulimics I have worked with, once they were able to restructure what was available to them for eating (meaning they didn’t shop the bad stuff)–and they are also migraineurs, and since carbs cause migraines, there was a secondary incentive–they stopped their eating disorders, also migraines, and were able to quit all of their medicines as well.
So as hard as it is, you do need to change something in your life in order to become healthy and be able to stop your habits that you know take you to misery. Topamax is a weight loss medicine and will not stop your brain from wanting to binge eating, only stops the action from happening at a price of long-term-use permanent brain damage.
Sorry for the long answer; I just wanted to give you a full picture so you understand the connections of a few things and can make the right choices! <3
I am so glad I was able to help you. <3 Keep on using whatever app you find useful and easy to guide you (I use Carb Manager as it is more accurate); it will help you tremendously and also will help you see that foods that are considered healthy, like what you wrote above “even though often this is healthy foods like oatmeal, dates, etc.” they are actually quite unhealthy. (Not sure how dates were designed but a single date has more sugar in it than you can envision packing into it! It contains 4 teaspoons of sugar equivalent (see the USDA table for date)! Be aware!). To guide you how to calculate the sugar equivalence, 4 net carb grams = 1 teaspoon of sugar equivalent, so whatever you eat, look up the carbs in MyFitnessPal or wherever, subtract the fiber to get the net carbs, and divide by 4. That way you get the true sugar equivalent–that is how much sugar it will convert into rather than what it contains. Like for Medjool dates, 1 pitted date:
carbs by difference (total carbs) = 17.99 gr
fiber = 1.6
divide this by 4 to 16.33/4=4.0825 teaspoons of sugar in a single pitted date.
This calculation is important because you will see not only what it is in carbs total for the day but in sugar equivalent. Like you say you average 200 gr carbohydrates a day even with these types of foods, that is equivalent to 50 teaspoons of sugar a day! Looking at it that way it is a lot more powerful of a statement than saying it is 200 gr carbs, right?
I hope you will be able to accept yourself the way you are and work with what you can do rather than fight what you cannot! <3
Jan, you are making the right changes. The best diet to move onto is the low carbs high fat (LCHF–here I link to the easiest form called Banting) diet and you will be fine.
In terms of sweating–Topamax is well-known for down-regulating the body’s thermal control and it often prevents people from being able to sweat–a very bad thing. Your sweating hopefully will improve–you may be overproducing now to compensate. If it doesn’t go away, you may need medicine for that. I know several people taking medicine for sweating and I have not yet heard any complaint.
Very glad to try to help! 🙂
I have Hashimoto’s Disease for which I’ve been treated about 7 years. In 2016 I was diagnosed with breast cancer and went the whole 9 yards with treatment (surgery, radiation) and now take tamoxifen. My endocrinologist recently prescribed topamax because my weight went up from tamoxifen. With weight gain I become pre-diabetic and since my weight is a constant roller coaster between Hashimoto’s and tamoxifen, he thought it a good idea after I struggled to lose 15 lb. to help me stabilize it. I’ve been working on increasing the dosage, am currently at 75 mg and will be moving up to 100 mg next week at which he said he’ll maintain me – forever it seems. Other than an occasional sore throat, some minor feet tingling, tire eyes, upset stomach, and sleepiness I don’t seem to be suffering any other side effects. Will these niggling effects that surface now and then all go away eventually? I admit I’m disappointed that I haven’t lost more weight and actually seem to have gain some. I’ve never lost my appetite. Any idea why because my food intake hasn’t changed. Thanks
Sorry to hear all the health conditions you went through. Topamax, for some people, increases weight. The mechanism of Topamax is a voltage gated calcium channel blocker and as such, it affects your whole body, often in unpredictable ways. It is originally a weight loss drug but the FDA removed it from being used as a weight loss drug many years ago for its side effects. It is a brain degenerative drug at the benefit of losing a few pounds… the benefits don’t outweigh the risks at all.
Now I totally understand that in your condition there are different priorities. However, there is a ton of new science showing that cancer is a metabolic disease–most of the articles are very scientific but there are even books about it, and here is the summary of many scientific articles about how what you eat affects cancer growth–and in some cases (I would think most cases for adults) causes it. Thus your weight that you want to reduce, your cancer, and also your Hashimoto’s (also a metabolism related immune disorder) can all be prevented (or at least put to remission) without any drugs by simply changing your diet.
This includes many steps:
1) stop all sugar–real, imitation, naturals, substitutes, liquid or crystals, so anything you would use as sweetener in anything.
2) stop all processed foods because they all have sugar in them, the insoluble fiber is removed, and the nutrition is very poor in them
3) stop all sodas and juices (even unsweetened ones), all smoothies, shakes, and artificial milks.
4) stop all grains
5) stop all high starchy fruits and vegetables (all tropical fruits, apples, watermelon, banana, and alike and all vegetables grown underground like potatoes, carrots, with the exception of onions and garlic), and legumes (including peanuts, which are legumes and not nuts)
6) keep your protein at moderate level because over 50% of protein converts to glucose
7) stop all oils for cooking and use animal fats
8) you can consume olive oil, avocado oil, and coconut oil–preferably cold since they have low smoke points
9) increase animal fats.
There are many examples of people with very complicated and usually fatal in a very short time place their cancers into complete remission and live still several years after they were supposed to have died because they made all these changes and started the ketogenic diet. Here is a video of perhaps the most known example of a usually fatal within a year cancer (glioblastoma) being completely put to remission by a then 27-year old (now 33 I think) person. There are many more cases. The ketogenic diet is used therapeutically for seizures and other health conditions and is in experimental mode for all kinds of cancers. The good thing about it is that it is free, enjoyable (I have been on it for over 2 years), safe, and it also reverses Hashimoto’s disease. So you can kill several bad things with one swoop. However, in order to be on the ketogenic diet, you need to stop Topamax–the FDA has now put a warning label on it to not be used in ketosis. In ketosis, many drugs became agonists and start causing trouble. The explanation of that is not clear but my guess is that all drugs are created to work in a “carbs burning” metabolism and the ketogenic is a “fat burning” one, and so the medicines behave differently.
The biggest “side effect” of the ketogenic diet is weight loss! The very thing you want. I noted “side effect” because the ketogenic diet is the default for brain growth and development (read the references cited in this blog article)–fetuses are in ketosis in the womb and remain in ketosis all through nursing, coming in and out in later stages as the milk gains more glucose, but remain in “metabolic flexibility” of coming in and out of ketosis all through age 10 or so. So as the normal healthy human diet base, it is harmless and it can help you reset your metabolism to the flexible one–it has for me.
So I recommend you consider your options: Topamax with a host of side effects, which don’t go away and become worse over time, plus brain degeneration, versus a lifestyle change that is not easy to do and may take a little time to accept and be able to hold to it (not long, for me quitting all sweets was trouble for 1 week; I found grains harder to quit but since so many of my ailments went away from quitting it, that gave me strength to continue). For me the answer lies in the ketogenic diet and to be honest, I have never felt better in my life.
I hope this helps you–though I know this is not the answer you wanted to hear.
I’ve taken Topomax for probably 10 years for migraine prevention, bipolar, and bulimia. My dr said there is research it can prevent binge eating. Currently my dose is 150 mg 2 x a day. It doesn’t really do anything for my mood or eating and over the last year or so I’ve been gaining weight despite having weight loss surgery. As far as migraines, it seems not to help much with that anymore either. I get at least 1 every week. Recently, I’ve been trying to follow the ketogenic diet but ended up with ketoacidosis. I had no idea the topomax could cause this many problems or that it had a black box warning. I do notice big changes with my memory and concentration etc since being on it and it seems to be getting worse. At one point a couple years ago, 1 dr took me off and I was feeling better then. Depression etc had lifted. But 6 months later I saw my regular dr again and she put me back on it. That was about 2 years ago and I’ve struggled with debilitating depression ever since. I didn’t even make the connection until now when I read your article. I will definitely stop it! The other thing is, I’ve moved and have a new doc and I don’t even have bipolar disorder. So who knows what all of those other meds have done? I am worried though about any permanent damage? I feel like I am so “stupid” and I’m not trying to brag but I really used to be quite intelligent. I really seriously feel like I might have a brain injury/damage from taking it? And my dr looked at me like I was crazy AND stupid when I said that to her!! I’d appreciate any feedback you might have. Thanks.
Very sorry to hear the kind of hell your doctors put you though. Topamax is not supposed to have anything to do with your mood so the very first doctor who prescribed it for you was in the wrong. Topamax is an anticonvulsant, a drug for seizures! It literally has zero connection with mood. I wish you were not put back on it again! 🙁
The ketogenic diet is a very special diet and lots of people jump into it, not knowing that most medications interact with the ketogenic “metabolic process”. The ketogenic diet is not a diet–not sure who gave it that name the very first time but it sure misleads a lot of people. It is a different metabolic process.
Drugs that were created for a particular metabolic process to work in, will not work in another.
The Standard American Diet (SAD) is a carbohydrate-based diet, in which the metabolic process is that of glucose burning for everything. This metabolic process is what drugs are created for. The carbohydrate metabolic process has much more steps than the ketogenic diet, which is NOT a glucose metabolic process. The ketogenic diet is a fat-burning metabolic process that has significantly fewer steps and those steps are different from carbohydrate burning one.
This is the reason why nearly all medicines interact with the ketogenic diet. I have a ketogenic group for migraineurs but at the entry it is made clear that as long as medicines are taken, the ketogenic diet is out of question and they need to start in my standard protocol group for migraineurs. In the protocol group we provide help to those wishing to titrate off their medicines (all migraineurs do since they end up migraine free so what’s the use for medicines?) and then they can join the ketogenic group if they wish. I find that many migraineurs are happy with the protocol and don’t want to move over to the keto group but about 400+ have and are doing great.
I recommend that if you want to do the ketogenic diet eventually–once you are no longer on any migraine medicines–you join one in which full control is exercised by the group manager and admins over what is happening in the group, such as mine. My group is a scientific one; we follow safe practices and the latest science. I am a migraineur on the ketogenic diet now for 2 years and will likely never ever change. 🙂
You are welcome to our group.
In terms of brain damage: all drugs that cross the blood brain barrier (meaning all migraine drugs) cause damage to the brain. Topamax causes more than some of the others. Some damage is permanent and some surface after you quit the drug. However, with lots of work and the ketogenic diet, we can rebuild the brain to be about as good as what it was before Topamax. <3
I just read this and had to reply as well. I am on Topamax 25mg in AM and 25mg in PM for insomnia due to restless Legg. My regular physician would not give me a sleeping pill. He said there is to many side effects with those drugs! My Neurologist put me on Topamax! WHAT!. NOW I sleep so much better……my brain may be altered but I can sleep. Yes I have lost about 20 pounds but that’s a good thing in my case. My desire for sweets is gone! OH WHAT A WORLD?
Having an altered brain is not a good thing. There are other medicines that can help you that have less side effects than Topamax and don’t alter your brain. Topamax is a weight loss drug originally and so it definitely works for that but at what price? Altered brain…
Hope you stay healthy,
Thank you for this blog. I was put on Topamax for migraines, I ended up admitted to the hospital with heart rate of 140 when standing – all my drs refused to even consider Topamax the culprit- I slowly titrated myself down – a week after discontinuing.. my orthostatic tachycardia is gone- Topamax alters autonomic functions yet drs refused to look at it
Thank you for your heart-breaking comment. Indeed, doctors refuse to notice. I think part of the problem is us because we have the power to report an adverse reaction to drugs but I suspect few people do. Here is the link to adverse even reporting–it can be done electronically or by paper and mailed in. Please report what you found, as should all other people report what they had as adverse effects! The FDA listens since they check these reports to see if a drug needs a warning label or not.
Congratulation for your coming off of Topamax. Please join my FB migraine group for helping you become migraine free without any medicines. It is totally possible! Over 4000 migraineurs are migraine and medicine free now for years (me included)!
Looking forward to seeing you there,
Hi, I know you wrote this a long time ago but im going to take my chances and write to you anyways. In 2016 my doctor put me on Topamax for weight loss, with diet and exercise and a little help with decreased appetite because of the Topamax I lost a lot of weight. I started to have severe pains a few months of taking it, turned out I had developed Gall Stones so I had to have my Gallbladder removed, I’m not sure if this had anything to do with the drug, my doctor insists that it doesn’t. Also I was a very heavy drinker I guess I should say that I am an alcoholic and while on the Topamax I had no desire to drink what so ever. After I got out of the hospital after my surgery I weaned off the drug. A few months later I had a glass of wine and it all went downhill from there, about two week ago I decided to go back on the Topamax for my alcoholism this time and it seems to be working so far. I should also mention that I have Borderline personality disorder, generalized anxiety disorder, Social anxiety disorder. The Topamax elevated my Depression and anxiety a lot it was crippling sometimes, I’m feeling the start of that elevation again but I just don’t want to go back to drinking and AA would not work with my Social anxiety. There’s my Topamax story in a nutshell in 2017.
This is a very sad story on more than one levels. Topamax is definitely not the drug of choice for you since it shots your brain down. I understand your plea for help for alcoholism and that is well warranted as there is not too much help around and there is no medicine that can remove your addiction to alcohol. Alcohol damages (often destroys) your dopamine receptors and the damage is irreversible. The only way to overcome it is by psychotherapy at the moment. Have you tried that? Perhaps the same would work for your depression as well as your other health conditions. Don’t accept any drugs without fully reading up on its adverse side effects and potential consequences. Since I am not an expert in alcoholism, I cannot be of much help. I wish I could help you. Thank you for opening up and thank you for your honesty. I think the best way to being cured is by being honest and facing the monster–and you are doing that now.
I took Topomax for PTSD-related anxiety. It helped a lot with that. But eventually I thought I was going to die on Topomax. I started getting a feeling of intense pressure in my head, & awful headaches. I also developed ataxia. Also full-blown fainting spells that left me waking up on the floor. I bought a walker to help me walk. Since I have a connective tissue disorder, I didn’t realize the Topomax was causing my walking problem. I thought I was having a stroke or a cerebral-spinal fluid leak at one point, due to the pressure in my head & clear liquid coming out of my ear. That’s when I thought I was going to die. I believe Topomax could have killed me. The doctors didn’t connect my symptoms to the Topomax. I’m so glad I figured it out & saved myself.
I am very sorry for what happened to you and glad that you have discovered the problem and stopped Topamax. Topamax is not an anxiety medicines–not sure what doctor would ever prescribe it for that! That is just downright wrong! I am glad you figured it all out and saved yourself. Gosh…. will they ever prescribe Topamax for everything unrelated to its original formulation prescription?
Many hugs to you,
Omg Helen this Sounds so much like my husband he was on Topamax since February 2017 he took his last pill October 27, 2017 unfortunately he is still have major dizzy spells walks like a drunk 🙁 this is so scary brain fog. Please give me a update praying that you are better today… I am starting to loose hope that he will ever get better. Today is 32 days off that drug that comes straight from the devil himself.. thank you from a concerned with cindy btw he gets intense pressure to head and passes out to. Ty cindy
Sorry to hear about your husband. Dizziness is often the symptom of hyponatremia–not enough salt in the diet. Is he on reduced salt for some reason?
Angela no he is not on reduced salt at all. He has always had super high blood pressure since being on Topamax now his blood pressure runs crazy low I mean you can get somewhat high and then you check it a hour later and it’s like crazy low which is definitely not normal for him when he passed out I took it once and it was 93/78 a lot of the timeshare catch it run and 117/77 I’m in those numbers are like unreal for him Hector better than my numbers and he has had high blood pressure ever since a teenager which I know lower blood pressure is a good thing but not if you can’t walk across the stinking floor. I firmly believe that Topamax is the cause of this. He has had several CT scans MRIs EEGs tilt table test echocardiogram plus bloodwork nothing has showed up. Oh also his heart was racing terrible like during the e.g. it was running 110 to 120 that has improved plus heart doctor just put him on a beta blocker. We are also seeing a neurologist we’ve seen her wants and we will see her again on the 30th which is Thursday this is just a crazy nightmare that I hope to God gets better
Thanks Cindy. It is really hard to tell but when you mentioned racing heart, the light bulb went off: he is majorly dehydrated. There are 2 forms of dehydration:
1) lack of enough electrolyte-fluid consumption. In this case Ia m talking about water and the proper balance of potassium and sodium (potassium from food only please, never take supplemental potassium)
2) drinking too much water without the matching amount of salt and potassium to allow the cells to use that water–this is also called water toxicity.
Is that possible that he is not hydrated properly? You can calculate his water need: take his weight in lbs and multiply by 0.7. That is the minimum amount of water he needs to drink in oz. So if he weighs 200 lbs, 200*0.7=140 oz a day minimum. To get this in 8 oz glass sizes, divide this number by 8: 140/8=17.5 so if he weighs 200 pounds, he needs to drink minimum 17.5 glasses of pure unflavored water a day. His maximum water amount is just his weight divided by 8: 200/8=25 so he should never drink more than 25 glasses of water.
Always drink water such that a proper electrolyte balance is maintained.
I would quit all soft drinks, juices, teas, alcohol, and drink max 1 cup of coffee a day. See if that will stabilize his heart. Please let me know.
Angela yes you’re right he was actually diagnosed at forgot to put that with dehydration October 20, 2017 so he has drink tons and tons of the no sugar Powerade’s since then today I really don’t think that he is dehydrated his heart rate did come down and to have it come down more the heart doctor just now put him on a beta blocker but the heart doctor believes that a water pill he was on is what caused him to be major dehydrated so he took him out that October 20, 2017 but today he still is not a whole lot better yesterday I took him out he walked like a drunk it was terrible . The heart doctor thinks he has a condition where his heart and his brain or not connecting I just hope to God he can get better. Thank you Cindy
Cindy, he needs to stop the sugar substituted PowerAid. Sugar substitutes are trouble. Not enough is known about them but it appears that they cause obesity and since many also spike insulin, they may lead to metabolic disorders over time. For proper hydration all he really needs is water and salt–that is saline, which is in the electrolyte one receives as IV in hospitals and ERs. He can just use regular table salt or purchase salt pills or capsules, and drink unflavored water–can be flat or sparkling but no flavoring.
Taking a water pill (a diuretic) is probably one of the worst possible treatment for anything… it is not takign the water from the right places and it can cause more harm than good. He may have a health condition called Mal de Debarquement (sea legged sensation) and that typically hints at dysregulated electrolyte by not enough salt. However, there can be other causes as well, so it can be a bit of a digging to find out what you can do about it. Switching away from all those sweetened beverages and moving toward real electrolyte with water and salt, consuming a high potassium diet (wholesome meat and fish are high potassium, as is avocado and romaine lettuce, so don’t reach for a banana please!) should help him become healthy.
Hello Angela we got a diagnosis and it is caused from his medications probably the Topamax. Ortho static intolerance, Vado vagal syncope. This is one evil drug to do these things to people he has to go to physical therapy starts that on Wednesday. Oh by the way he drinks low sugar power aids and he’s on a low-carb diet. Praying this nightmare will end soon and my husband will get better.
The ketogenic diet would help him but if he is still on Topamax, he should not get into ketosis because the ketogenic diet and Topamax interact–most medicines interact with the ketogenic diet. Also, please ask him to stop sugar substituted things because they cause obesity and potentially type 2 diabetes. And finally, as he is switching to ketogenic from LCHF, he needs to increase his salt and water intake–watch for cramps. Those mean he needs more salt. 🙂
I have a ketogenic group that he is welcome to join. We follow the scientific and safe way.
Hugs to you both,
Do you think there could be a link between my long term Topamax and my newly discovered high iron levels in my blood? I’m very concerned.
I believe the exact opposite is known to be possible: reduced red blood count. I searched the literature and find nothing about increased red blood count. However, it can be a secondary symptom of a side effect that may be connected to an organ that is being damaged by Topamax. I highly advise you to go to an internist or similar and have them check what could have caused your high iron in your blood. Please keep me posted!
Wow. I am so glad I found your page before I opened the first of three boxes of Topiramate that my 15 year old daughter’s paediatrician prescribed for her “query: migraines”.
Oh dear; my heart just skipped a beat from reading your message! Claire, does your daughter have migraines or was it going to be for something else? She is minor so she cannot join Facebook but you can join us and we can help her through you. My regular migraine group can be found at the link and is usually the starting point for everyone on medication of any kind or the ketogenic group for migraineurs if she is not taking any meds regularly every day.
Glad you didn’t start her on Trokendi, which is a time release and even harder to stop than the regular. Phew!
Hugs to her and you,
I am happy to have read this article because I have been on the generic for Topamax for about 10 years now for chronic migraines. I developed Hashimoto’s disease 8 years ago. It has been hard to determine what symptoms are related to my thyroid disease or from the Topamax. I am now at a point where my thyroid medication seems to have little effect, and I have read that Topamax may effect TSH (mine is very low). Yesterday I came to the conclusion I needed to wean myself off of my current dosage of 100 mg of Topamax. I understand that I should do this in increments of 25 mg per week, is that correct? Thanks for this article and your insight. It has been very helpful to me in making this decision!
Thank you for asking. Great to hear that you are starting to wean off Topamax. I am not an MD so cannot advise you. I can only tell you what I would do so I will tell you just that. I personally found that the migraineurs I deal with need a slower taper. Since I never took Topamax, I created a gradual taper based on their experience. But before I tell you that schedule I have noted working extremely well, I must add a few things.
When you started taking Topamax for your migraine, you started it for a reason. Unless you change that reason–and you can–your migraines will come back the same way (if not worse). My migraineurs all have to make major life-style changes to be able to taper off their medicines, including Topamax. With the change of lifestyle, you can become pain and medicine free but just coming off Topamax without making changes will cause trouble. So first let me outline in mini steps what you need to do before you start changes in your medicine routine. This is not a medical advice but based on science:
1) Glucose (and the ensuing insulin increase) damages the myelin–myelin is the white matter, made from fat and cholesterol, which protects your neuron’s axons and allow smooth firing. So to stop myelin damage, you need to cut all sugar out of your diet. This includes anything that is sweet, be it raw or commercial, any color, texture, or shape, all so called “Naturals” and all sugar substitutes. So if it is sweetened, can’t eat it
2) You need to quit anything grain: all breads, anything made with wheat flour, corn flour, rice flour, oats, all cereals, crackers, pasta, breading, etc. That is because grain is a major irritant that has no nutrition (it is all fortified) and is very high in carbohydrates (pure starch and glucose). The fibers in grain are bulk forming, sucking all moisture out of you–hence constipation. Migraineurs are always dehydrated and so grain is a dehydrating agent. Migraineurs need more water than others.
3) Migraineurs have what is called “hyper sensitive sensory brains” meaning they are more sensitive to sensory stimuli like light, scent, sound, touch, and often also taste. Such hyper sensitivity uses more voltage in the brain and thus migraineurs need more salt in their diet.
4) Migraineurs have many genetic variances that affect how their electrolyte is managed by the brain–not very well–so migraineurs need to put a lot of focus on their electrolyte maintenance.
5) The carbohydrates eaten in fruits and vegetables need to also be restricted to below a certain amount–it seems that most migraineurs do well between 50 and 80 net grams of carbohydrates from vegetables and limited fruits.
Once you reached all these steps–I call “baseline” in my migraine group–your body is returns to a healthy state from which you can make changes in medicine if you so decide.
I found great success with reducing Topamax in much smaller increments and much slower: removing a quarter of a pill from one tablet of the week and keep the rest the same, then next week remove a quarter of another pill separated by a few days’ distance from the previously reduced pill and keep the rest the same, and so on until each day the lower dose is reached–7 weeks. Then continue to chop off another quarter from one pill every day and keep the same dose for the rest and repeat as on the first 7 weeks… in several month this way one can become Topamx free without any side effect–provided baseline is maintained forever. Baseline if for life.
If you need help, please join my migraine group. 🙂
Best wishes to you,
Thank you for your article. I started on Topamax 50 mg. in April of 2014. due to almost daily migraines that started in 1992. about 23 days of every month. I tried lots of natural things trying to avoid meds, but needed to function and raise my kids. I know the gastritis I was diagnosed with in Oct. of ’14 was from the meds, I had a bit of tingling in fingers and toes which went away. I am still taking Topamax, with food now and have not had too many problems that I know of. It has actually helped me tremendously with headaches. It made them disappear most days, which has given me a quality of life I did not have before. That being said – I would love to be off of meds if possible!
How do I join your migraine group? Thank you!
Glad to hear that you are doing better but wish to join my migraine group. Please join here. There are over 1700 migraineurs in the group now; it is a very busy group as everyone is doing what you are doing–all the new members. 🙂 So join and start asking questions. Many of us will help you, including me. <3
Looking forward to have you in the group!
See you there,
Very informative article! I started on 25 mg of Topamax a year and half ago for ocular migraines. After 5 months, I started developing symptoms similar to peripheral neuropathy but instead of just my hands and feet, it was my entire body. It started with my face going numb. Then I started getting shocks. Soon I was getting shocks, numbness, burning and muscle twitching all over my body. I’ve been bounced from specialist to specialist for just over a year with no answers. The Topamax was increased to see if it would help the nerve pain and it just kept getting worse! My highest dose was 50 mg twice a day. I’ve had every test imaginable and no one can figure out what is wrong with me. I asked if it could be from the Topamax months ago and I was assured it would not cause such widespread symptoms. I recently asked if I could go back to my original dose of 25 mg as the Topamax didn’t seem to be helping the neuropathy so why take so much. When I cut my dosage to 25 mg twice a day I noticed that my neuropathy symptoms were not as severe. During this time, I also went on a clean eating diet and cut out all sugar, grains and dairy. After reading your article, I discussed weaning off completely with my GP and I have another week and half until I can safely stop. I just dropped to 25 mg once a day on Monday and I’ve noticed the past few days my nerve pain is increasing significantly. Could it still be the Topamax causing my symptoms? If it is the Topamax, is the nerve pain likely to go away eventually? Thank you for any advice you may have!
Glad to hear you are coming off the monster. I think your pain is increasing because your are coming off too fast. The manufacturer’s instructions sound similar to how fast you are coming off and I have yet to find a single person for whom that kind of speed didn’t cause problems. I think you just need to go back to the last good dose and then reduce slower–talk to your doctor and reduce much slower. Also, if the dairy didn’t bother you, I would recommend you to go back on it. Dairy has a lot of very important nutrients that support the nervous system–most importantly animal fats. The brain is mostly made of fat and by not eating it, you are hurting your body. Your brain insulation (myelin) is made from cholesterol and fat and that may be damaged from the medicine and also from the health condition in general. It improves significantly from a high fat low carbs diet. It seems you got the low carbs right but need to increase your fat. Increased fat combined with a slower reduction will allow your body to heal as you reduce the meds.
Hope this helps!
If you’ve ever taken a fluoroquinolone (FQ) antibiotic before, it can cause neuropathic symptoms. Many people are prescribed FQ meds for simple concerns, including UTIs. You may wish to explore whether you’ve ever taken one before.
Thanks Julie! I was on Cipro just a few months ago for a bad case of appendicitis. But my neuropathy symptoms started over a year ago. Before then, I hadn’t been on antibiotics in years. So I’ve weaned off the topamax and have been off of it for a month. Quite a few of my symptoms are gone. I still have the shock type pain, the twitching and the annoying rash on my leg that won’t go away. So I stopped my allergy medication 6 days ago and my remaining symptoms are getting better. I read that allergy meds can cause neuropathy too! Now I’m going to reintroduce them one at a time to see which med I’m also reacting to.
Thanks Julie for your comment to Lea. Indeed neuropathy symptoms can show up after any quinolone drugs–sometimes much later. Often it is reversible Julie by forcing cell regeneration since it is the mitochondria that was damaged by quinolones. Forcing cell regeneration (stem cells that have new mitochondria without DNA damage) requires a change of diet until you recover. I was also hurt by Cipro (I was involved in the black-boxing of the quinolones by the FDA by a petition) but after a couple of years on the ketogenic diet that permitted fasting, I recovered completely. Fasting encourages the body to trash damaged cells and generate healthy new ones. Depending on your injuries you may be able to recover as well.
Lea I think you are doing the right thing. Have you switched allergy meds to a 2nd generation type? Generation 1 can cause issues but generation 2 is less likely to do so.
Hugs to both of you,
I have been on Topamax since June 30 50 mg for insomnia and the only symptom I have had is lack of appetite. My wife and mother in law were on it 15 years ago and lost 75 lbs each and only ended up being slightly cranky and had no issues on it and had no problems coming off of it. Neither of them have any other health related problems related to being on Topamax and so far neither do I expect for the fact I am sleeping a whole lot better and lost weight which to me is also a bonus.
That is wonderful. Topamax is a diet pill so if that is what you are using it for and you have no health conditions, it may not hurt you. That is quite a different story from other people like the ones with migraines or similar. Enjoy.
Topomax was designed as an anticonvulsant- the diet part was an accidental find. The fact that you could get this so wrong makes me doubt everything you have to say.
Quite incorrect. See the attached Medline definition of topiramate (Topamax), the official website for all drugs and their descriptions for what they are used for and how.
Oh and is there anything known about topamax and melasma hyperpigmentation? Also out of the blue got really heavy melasma during topamax and it didn’t go away after quitting the drug.
I was glad to have found your article on the internet based on scientific resources. Also the replies sounded very familier and shocking to me. Sorry for my bad english by the way.
I do believe topamax blocks alle neurotransmitters and together with that vague depersonalization, cognitive problems and depression it made me a complete volnurable and unstable person not in power to explain myself to the doctor. I experienced all this and more and had contact with my doctor about this on a regular basis. Untill today she doesn’t think that topamax had anything tot do with my symptoms.
I live in the Netherlands and here it is also a popular drug voor off label use. (Again sorry for my poor english).
I used topamax for 8 months (only 25 mg twice a day) but responded more severely as time went by. Lost a part of my personality. Didn’t want tot live anymore. Real suïcide plans, hoe bizar. Quit my job and a radio show because of angst and cognitive disabillities. Also my skin till today is looking suddenly old and superdehydrated. I somehow barely had vitamine d in my body anymore (while i work as a gardener in the sun) and the pH value of my body was just off. Buy i didn’t had metabole acidose. Anyway, i never felt so strange, lost, stupid and in panic of this numbness in my life. Crying from out of nowhere, a lot of minor other stuff but most important the connection that seemed missing in my brain while my doctor kept on saying that she never heard of such symptoms. I quit topamax for 6 months now and i fear that i m not going tot recover. I miss myself. But i wasn’t on a high dosage. Will this eventually repair itself with a semi ketogyn diet, exercise, study, sleep, etc? What is your experience with people who reacted strong to a lower dosage of topamax and only used it for 8 months? I also don’t trust ‘big pharma’ and the FDA. There is much money made out of it. And there are a lot of bad drugs people just get prescribed every day, not knowing how perhaps it might damage you. How many people must be hurt before a drug is actually to dangerous to sell anymore? My doctor prescribed topamax so easy and laconiek, not even for migraine or epileptic seizures. I fortunately don’t suffer from that. She prescribed it for my eating disorder and as a kind of mood stabilizator that would help with ocd.
What a crazy world, with a lot of differences between rich and poor and now health problems because of sugars, medicines and pollution of this earth. I m not an idealist but this has gone top far.
Sorry for the long text. I hope for soms good news based on your patients experiences. I do understatement that it is different per person.
Thanks do much and kind regards!
Very sorry to hear about your health and melasma hyperpigmentation, which indeed can be the result of Topamax although it is a rarer adverse effect than others and I think it may not even be listed anywhere–I will have it listed in my new book son to come out about migraine as a complete guide of what it is and how to prevent it. I have a section of Drugs of Shame with 30 of the most commonly prescribed drugs to migraineurs and their side effects. I will add this.
Topamax block voltage dependent calcium channels (they are needed to release neurotransmitters in the brain) and also some voltage dependent sodium channels (they are needed for cellular functions such as respiration, action potential, and cellular level hydration). So yes, you are correct, Topamax blocks just about all brain functions and it is degenerative (may not be permanent but some forms are). Degeneration occurs in the brain when a neuron is not communicating (not releasing neurotransmitters) because neurons it communicates with disconnect from the one not sending messages. This is called synaptic pruning. The pruning need not be permanent because the brain is very dynamic and neurons constantly prune and extend their connections–neurons also move, they are not standing still like your skin cells, for example. So there is hope.
I am very sorry that you quit your job at the radio and are struggling with your brain now in comprehension. It can be improved but it requires a lot of hard work on your part–on of them is a change of nutrition.
You have probably heard much about the bad affects of sugar and low fat diets in terms of insulin resistance and obesity but probably have not heard that glucose destroys white matter in the brain–the area that creates the myelin sheath (insulation) around each brain cell’s axon, to protect the voltage from leaking. Voltage leaks cause seizures and voltage not happening causes migraines. So by fixing the myelin, you can fix your brain back to health.
To recover myelin you need to quit all sugars, no matter what kind, all high carbohydrate foods such as grains and fruits with a lot of sugar in them, and need to stop using vegetable cooking oil and start using animal fats. Animal fats are important to reestablish myelin.
You also said something important about vitamin D. Few people realize that the sun is not enough to generate vitamin D.We need to have fat and cholesterol under our skin for D synthesis by the sun!! If you are not eating enough cholesterol and not eating enough fat, the sun cannot make D no matter how much you are on the sun all day. Also, those who take a statin (cholesterol reduction) medicine, are not able to carry fat soluble vitamins and minerals in their body and that leads to a lot of health problems. Calcium, for example, is a fat soluble mineral. If you are not eating enough fat or are blocking cholesterol production by a statin, you also are malnourished with many of the minerals and vitamins needed for your health. This can be a contributing factor for hyper pigmentation.
Since you are a migraineur, I recommend you join my migraine group where I work with many people to help them recover from migraines, how to prevent migraines, and how to treat one if one comes through without any medicines. I am a migraineur who has been able to prevent all migraines for over 6 years now; the group is a little over 3 years old and have so far got over 4000 people migraine free.
We welcome you to join us.
Thank you for your quick and informative response. I m going to try and start with cutting of sugars and eating more good fat. I actually am not a migraineur. I actually think i had a hormonal disbalans all my life (and coope with binge eating and ocd) topamax just took a reall toll above that (and i regret taking it) that i barely can handle. And i coop by binge eating sugars more then ever before(so i gained a lot of weight 25 kilo in 6 months. I had a normal weight last year.) But cooping with sugars because i m scared and damaged of of topiramate is the stupidest thing i could do.. i do have to begin somehow but am afraid i won’t ever really ‘wake up’ again and as long as i’m binging i’m less conscious of that.
I hope you keep creating awareness among dangerous medicines and wish you the best of luck with your book and searching for healthier ways to prevent migraine.
Thanks Lonneke and good luck to you too! Ask if you have any questions!
Good for you for getting off of this horrible drug! It should never be prescribed! Keep persevering as it will take a little time. Do NOT let this drug get you down. Life can get back to normal once you’re off and time has passed. It should be illegal to prescribe this drug! You’re right – you can’t trust big Pharma; this is a money maker for them and they don’t care about your health or well-being! Take care and God bless!
Thanks for your comment Della and a big hug for helping sufferers! I totally agree with you!
Omg I just read your response and started crying because I have been feeling the same exact way since I’ve been on it. I thought it was just me. I don’t feel like myself anymore I miss myself. I am angry, I cry, I have no interest in life anymore. I feel empty. It’s so weird.
Wow Cola, I am so sorry to hear!!! Now that you know it is not you but the drug, please talk to your doctor and start reducing it and slowly taper of with your doctor’s guidance. There is always hope! Feel reassured that you can recover from this. Just talk to your doctor! <3
Your 10th ‘condition’ sounds like you are making a mockery of the list of off label conditions this drug is prescribed for. They are some serious conditions and yes this is a serious drug with serious side effects. Don’t a lot of these conditions either overlap or have common elements that it’s not an unusual list for one medication to treat. I suffer from sever depression which I have tried almost every treatment and drug (label and off label) available. Most antidepressants do carry very serious side effects. I have now been prescribed topamax, and this prescription was not written ‘lightly’. I am aware of the side effects, I am also aware of the constant debilitating depression that consumes my so called life I live. The topamax is working, so I’d rather be alive and live a semi functional happy life and risk the side effects (which I have had no side effects), than exist in the depths of depression or risk suicide because my depression got the best of me. So please, don’t make a joke about a broken fingernail and this drug. You insulted me, my illness and my treatment.
I don’t think that information taken from the FDA can in any way insult you and that doctors do prescribe Topamax for just about every illness–and no, they don;t share much in common.
I also don’t think that millions of people suffering permanent damage while you are enjoying the benefits is an insult to you–it is an insult to them. After all, there is what is called NNT (number needed to treat). That means that often thousands of people are harmed by a drug at the cost of 1 person benefiting from that drug. You are the lucky one benefiting at the cost of the thousands I know getting hurt.
Congratulation for being one who is benefiting! Truly happy for you!
I think you should now be able to feel how insulted those who get hurt are in order for you to feel better. (Just another realistic and totally industry-accepted and known viewpoint.)
Thanks for your compassion!
I was not referencing the FDA information on Topamax, I was referencing YOUR ‘broken fingernail joke’. My comment was directed solely towards you Angela. YOU insulted me. BTW I do have permanent heart damage, brain damage, neuropathy, plus additional permanent damage from Taxotere, now that’s a drug with a severe FDA list. Why don’t you beat up that drug while your at it?
The article on Topamax was written specifically for migraineurs who are placed on Topamax. You may notice that I edited your comment–derogatory comments don’t make it on this website but the rest of your message was worthy of my comment.
I have not yet met a migraineur who is placed on Taxotere, since that drug is a cancer treatment drug.
Cancer treatment drugs all cause damage because they cannot differentiate between sick and healthy cells but that has nothing to do with migraine. I am very sorry you have received much damage from a cancer drug–you didn’t mention you had cancer. As you can see, my articles are all revolving around migraine, medicines prescribed for migraine, and migraine-associated nutrition with a slight branching off in the nutritional area more and more. These are my areas of research.
Best of luck to you,
I was also prescribed Topamax to aid my SSRI’s in my severe clinical depression. My doctor said this was a wonder drug because it would also rid me of my debilitating migraines and help me lose weight. I have been on it for 9 years. At first, it helped my depression, for maybe 6 months. I didn’t lose any significant weight and I still had migraines. I was on so much medication I just kept taking it. Now, having entered menopause I found out I was having extreme symptoms because Topamax completely rendered my estrogen ineffective. A very smart visiting pharmacist caught that I was on birth control (estrogen) and Topamax and asked me why? My estrogen wouldn’t work while on Topamax. I came home and started researching. That was true. I called my current physician who had no clue about this. In reading the side effects, things I had blamed on Chronic Fatigue and Fibromyalgia for YEARS could actually be this drug. All I am saying is proceed with caution. It may only work for a short time. I am now slowly coming off. I am scared of the withdrawal but I am more scared of this drug. There are many many articles about Topamax and even message boards with people trying to get off. In the last 3 years I have done things like excessive spending that are completely out of character for me. Good Luck with your depression, I have had it all my life and I am with you.
Thanks for your response to Kemptondale. Thanks also for your message on estrogen since most people have no idea about that (it is not listed as a side effect!) and no one I know so far mentioned it. This is a very important point.
Coming off of Topamax is not hard if you do it very slowly–much slower than the recommendations of the manufacturer. It makes it much easier if you change your diet to be migraine friendly–observing the genetic components of migraine: glucose sensitive and the ionic channels don’t respond to electrolyte imbalance. So it makes it much easier to come off of Topamax if you stop all sugar (including honey) and all sugar substitutes (including naturals like Stevia) and reduce high sugar fruits and starchy veggies (like potatoes). The migraineurs I have been working with and who are now migraine and medicine free, most also stopped grains (not all). It makes it easier.
Best wishes to you!
I wanted to give you an update and hopefully get a little feedback. I was on only 100mg (50am & 50pm) for 9 years. I did research and I went down 25mg at a time for 2 week durations. I did end with one week of 12.5mg. The good news is after my last dose I started taking my birth control pills again and virtually ALL my horrible menopause symptoms have lessened. (I also have/had PMDD but not sure now.) However, even though I have only been off 1.5 weeks, I am a total idiot! LOL That is seriously what I feel like. I can’t think at all. My legs still feel like jello and my hands sporadically shake. I liken it to having mononucleosis. I can be ok one day and cry the next 24 hours about things I have no control over. (My 20 year old divorce, being bullied in school, etc) I am 47. I have nightmares about these old wounds and people I haven’t thought about in years. I have had a fair amount of counseling so I know I healed these wounds properly. I know you are going to say go to the Dr. See that’s the problem. She knows NOTHING of what this drug does. She is a 40 year old, extremely intelligent woman who had no problem finding my degenerative jawbone disease and has basically cured my thyroid problems (if that is even possible). These big pharmaceutical companies have them so brainwashed. And if you show a Dr. an article from the internet they roll their eyes and say stay off the internet!
I am not asking for any medical expertise, but tell me that someday after being on this drug 9 years that my brain will work again?!? I feel like I’m having an out of body experience. Like I don’t know who I am or what my personality will be like if my brain does recover. I would just love some input based on what you know of and have encountered in your studies. If I hadn’t found your article after the pharmacist told me that I would still be on that horrible drug. It needs to be taken OFF the market. Anyway I really appreciate your time and energy and everything you are doing for people out there.
I actually was not going to suggest that you go see a doctor becuase what you experience is the damage that Topamax caused and that is nothing a doctor can treat. There is a lot of new research in the area of cell regeneration (including brain cells) and we are starting to understand what can make a different in a case such as yours where damage occurred, which may be permanent. It need not be permanent but there is a lot of commitment required on your part–which I am certain you have–to try. The approach is nutritional–I use this and so I am sharing with you what I do. Much of the research was done nearly 100 years ago but ended up in the dump when the fat phobia arrived but some of those old research articles are now coming to the surface and many (from the NIH’s storage) are dusted off–sometimes requiring computers that can still read tapes of the old computers–a technology long outrun. So what I am going to tell you may sound like a “fad” as many of the old-timers refer to but there is nothing fad about this. Some of this has been used since the Roman times and we know it works.
The nutritional approach has two parts.
1) The first one is known to “optimize” the brain (and body) such that is kills off cells that don’t produce energy well, repairs others that can be repaired, and replaces some that cannot be repaired. It also increases the healthy mitochondria in the cells so each cell can produce more energy.
2) The second part helps the brain recover its myelin (made from cholesterol and fat) such that it is available to insulate your neurons (brain cells) so that they can function again.
The first part comes from fasting. Fasting initiates a body stress response (it used to be common in our ancient history so old things we never use anymore kick into action) that dumps cells that don’t work, dumps mitochondria that don’t work, repairs things it can and generate stem cells (yes, you can generate your own stem cells this way) which then can morph into cells that are needed. Fasting can accomplish a lot of things. There are many fasting types but some incorporate some food–those are not true fasting–while others won’t even let you drink water–that is unhealthy. My preferred method of fasting is what I practice just about every day is called 16:8. This means that you don’t eat for 16 hours–you can drink water and take salt pills to replenish your electrolyte but no food or soups or anything like that–and then you can eat as much as you want in the remaining 8 hours. Since my nutritional approach is in my point 2, let me explain that before I continue the fasting part.
So the second part is what nutrition you eat in general. Any type of sugar or grain will hamper recovery. Insulin damages myelin and sugary stuff and grains have a ton of glucose and hence a load of insulin is needed for metabolism. So your best bet is to avoid all foods that have “quick glucose”. So no grain, no sugar, no cereals, no starches (no potatoes and similar), no juices, smoothies, shakes–these all are without fiber and just become sugar water. All f what I described are carbohydrates. You need not cut out all carbohydrates; there are plenty of vegetables and low sugar-high fiber fruits you can eat. Like zucchini, cauliflower, broccoli, all lettuces, spinach, most squashes, tomatoes, peppers, cucumbers, and similar are OK as vegetables and for fruits stick with raspberries, strawberries and blackberries.
As you are cutting down on your carbohydrates, you will find your calories drop significantly–this can cause a headache if you start this way so this is harsh. However, reduced caloric diet can lead to increase of the first point I made–cell regeneration. To avoid a headache and start healthy myelin rebuilding, you need to increase fats. The kind of fats you eat matter! Without getting into major details: you need to increase saturated fats and reduce polyunsaturated fats (vegetable fats and oils). Cooking should only be done in animal fats. Olive oil is still great for you, but should only be used cold and never heated. I eat no other vegetable oils–avocado oil is also OK cold but it has a very think nature and strong taste so you may not like it.
This is not a medical advise in any shape or form. This is something I practice every day for the past two years. If you are otherwise health–no insulin issues–this nutritional method may or may not get you into ketosis, based on what portion of macronutrients you end up with. Here are the usual “starter” percentages per caloric intake for the various nutritional processes that this sort of diet is suitable for:
60% fat, 20% protein, 20% carbs — this is the LCHF (low carbs high Fat) approach. This will not likely to get you into ketosis but reduces the carbohydrates significantly to the level where it is beneficial and mixed with fasting (sy once a week or more) can totally help you regenerate some health into your cells.
80% fat, 16% protein, and 4% carbs is what I practice, This is the classic ketogenic diet. This will get you into ketosis (your body will switch from carbs burner to fat burner). I have an article on the ketogenic diet that you may want to read if you want to try this. I have been practicing this diet for about two years with amazing results (I am a migraineur) and had many other health conditions, all of which reversed. I have a “keto mild for migraine” group where we use all new science for this diet and apply it specifically for migraineurs; you are welcome to join.
I hope you find this helpful. I have tried both and they definitely work. 🙂
Thank you so much Angela! I am willing to try anything to undo this damage. And I have a lot of work to do! God bless you and everyone going through this. And of course, another key part in my recovery is a lot of talking to God. Time to make a grocery list! LOL. Thank you again!
Indeed Kami!! The focus must be now on whatever it takes to recover. Looking forward to meeting you in the group. 🙂
I have been taking Topamax since March 30, 2017. I was initially prescribed 25 mg at bedtime, for chronic migraines/post traumatic headaches and trapezius muscle spasms which were also chronic. I would like to share a positive note, this medication has been a miracle drug for me. However, I will speculate that this may be because of the low dose of 25 mg and the bedtime dosing. It has significantly reduced my migraines, muscle spasms, depression, improved my right sided vision and I am less likely to gamble or shop. Maybe the key is 25 mg and not increasing the dosage to dangerous levels which are known to cause side effects. I know we all respond differently, but sometimes the old saying “less is more” may be true in respect to Topamax. Hope you can find some value in this.
There is value in every comment that is educational. 🙂 I am glad that Topamax is workign for you. I found many people who had major negative reactions to 25 mg as well so the response is individual. However, I totally agree: I never understood why doctors want to increase the dose of a drug that works well in a low dose. By contrast, most doctors increase the dose when the patient has side effects!!! That makes even less sense to me.
Perhaps at 25 mg the drug will cause less permanent damage to the brain.
There are other ways to prevent and treat migraines that are not medicinal. You may enjoy reading this article on what migraine is to understand why it need not be medicated.
Enjoy your long weekend,
I’ve been taking 25mg of Topamax twice a day since about 2008. It was an absolute miracle drug for me. I suffered from completely debilitating migraines that started around age 14. For the next 8 years I cycled through different abortive drugs trying to find something that would give me some semblance of a normal life. (For the first four years of my migraines, I didn’t know what they were. I just knew that I would come home from school and immediately go to bed because lights, noise, and smells were too much for me too handle. I lost all my friends. I had no social life. I was miserable.) There was even a not-so-hilarious incident in college where I had to lead a class lecture while using a new abortive medicine that left me functioning with the cognitive equivalent of a carrot. This was followed by an even less hilarious meeting with my professor where he asked me if I was abusing drugs…. Then I started seeing a migraine specialist in South Jersey who started me on Topamax. After a few weeks, I could not believe the difference. I felt like a normal human being. There was a few months in Brazil where I was unable to fill my prescription and I reverted right back to the incredibly painful migraines. When I was able to fill my prescription again, the miracle returned.
Glad you are doing well on Topamax. You are one of the very few who do. I have a question: when you had no Topamax in Brazil and had to stop, since it is a voltage dependent calcium channel blocker, when that gets released, people often end up with seizures. Did you not have any? I find that odd….
I began taking topiramate 100 mg for about three weeks and my neurologist increased my dosage by double. Within a few days I felt as though I had an ear infection. Or as if my hearing was blocked. I called to make an appointment. She was unavailable. I made an appointment for a few days out with my family doctor. I had no temp and no indications of an ear infection. I was referred to ENT I was completely dismissed by the ent doctor and told my ear was clear and I passed the hearing test even though I tried to explain my ear still souped muffled. I followed by phone with my Neurologist who insisted there was no connection. Once again, I was completely dismissed. A few days has gone my my hearing has worked. Yesterday it dawned on my that my hearing issue began around the time the increase in dosage. So I did a little progressive research in rare side effects and sure enough there are some reports of people stating hearing loss. Not one of the three doctors will return my calls. Does anyone know it’s likely my the muffled, ringing hearing will resolve now that I have stopped taking the medication? Its only been about 5 weeks total. So upsetting that none of theses doctors took the time to investigate coalition between new medications and symptoms! I’m 30 years old.
Very sorry to hear what happened to your hearing and saddened by how the doctors are not listening to what is a totally legitimate and serious observation that they should take seriously.
I recommend you do the following:
1) Report your adverse reaction at the FDA adverse drug reaction reporting service, which is a free online service. Your adverse effect report will join the millions and when it reaches a certain threshold number, the responsibel parties at the FDA meet and decide if that adverse reaction should be added on the label–if many people report the same, chance are it will be added, so your reporting is important. Here are the links and instructions of how to report.
2) Next, you can download the FDA reports of adverse effects (also free) by drugs by year here I believe (you may have to follow a few links there to find it).
3) As a patient, you have the right to not take any medicines your doctor prescribed–you are not obligated to do so by any law. So you can decide to take matters in your hand and start reducing on your own. This is totally up to you. If you do, you may want to ask your pharmacist, since your doctors are not helping, on a proper reduction method–but in either case, you need to reduce your dose very slowly and over a long period of time. Don’t rush it!
In terms of what will happen to your hearing: unknown.
You are young and your brain is still developing (it never stops changing) and so there is a high chance of recovery but since I have not yet heard of your symptom from others, I have no history of knowledge. The only way to know is by trying.
Best if luck to you and keep us posted of your success!
I am so glad I found your blog. I have seizures but has been awhile since I have had one, I have been taking Lamictal for the last 15yrs to control them but it has effected my memory. I asked my neurologist if I could take Topomax, thinking it would be a better med with the benefit of losing weight. I am currently waiting for it to come in the mail but I started reading up on the med and it has horrible reviews, in fact most are bad. I think I will stay with the bad memory.
Unfortunately all of these medicines cause memory loss because they block the voltage gated calcium channels and that stops the release of neurotransmitters in the brain. Neurons (brain cells) only stay connected as long as they are communicating — communication is via neurotransmitters. When the neurotransmitters are not coming, the cells don’t communicate, and that immediately suggests that the connection will be trimmed (it is called synaptic pruning). It need not be permanent since once the channels are stopped being blocked, the neurons can get connected again–the length of time matters. Topamax seems to have more and deeper side effects than some of the others so it may not have been a good choice plus while it certainly helps some people lose weight, it also help some people gain weight. Weight loss is not guaranteed at all.
It would help your seizures if you stopped all sugars and sugar substitutes since seizures are caused by damaged myelin. Myelin gets damaged by glucose. Myelin is made from fat and cholesterol and so you should talk to your doctor about trying the ketogenic diet for seizures. Children are placed on the ketogenic diet and many (not all) are fully recovered after 2 years on it. The ketogenic diet is extremely restrictive in carbs. I have no seizures but have migraines and decided to be on it. I love it. I have been on it for 2 years now and will likely stay on it for life with little summer breaks for some fruits. 🙂
Good luck to you! Keep me posted please!
Can you recommend anything I can do or take to help improve my memory such as vitamins and minerals?
The only thing that “may” help (may do nothing) is bypassing the constant glucose need of your brain by adding in MCT (medium chain triglycerides) that burn as ketones and help rebuild your brain. This is the essence of the ketogenic diet BUT there the goal is to prevent the need for any medicines. Since you are taking Topamax as we speak, getting on the ketogenic diet may not be a good option–although I know that children are placed on both at the same time but I have seen that backfire. Medicines and supplements that are made to work in a carbohydrate burning environment may start working weird in a fat burning environment–different metabolic process and you may get hurt. However, taking 100% pure concentrated MCT oil is not harmful and may be of help. There are 2 kind of MCT oils: coconut and palm kernel oil. I recommend you get 100% pure virgin coconut oil MCT. The coconut oil people are loving to add to coffee and cook with it are not all MCTs so best to get the supplement of just MCTs.
If you try, start with the smallest dose and see how your body tolerates it–some people get nauseous from MCTs so you want to make sure you don’t.
I received the Topamax but haven’t taken it because of the side effects, I am trying to talk myself into taking it for the first time. If I do start the Topamax I eventually will stop taking the Lamictal and rely on Topamax to control my seizures. I was on 700mgs of Lamictal for years and went down to 600 about 6 months ago because I’ve been seizure free for 5+yrs, I noticed my memory getting better but not as much as I wish it was. I was hoping Topamax would be my answer to getting my memory back and losing weight at the same time but apparently it isn’t going to be. I will try the MCT oil and see if that helps with the memory.
I started the low carb diet a couple of days ago, I was on it before and lost weight but it is hard to stay on it. Hopefully I can stick to it this time.
Thanks for all the help.
Topamax is not any better than Lamictal–in fact, Topamax has more side effects than Lamictal. I don;t recommend you switch if you are doing well with your seizures on Lamictal. The two drugs work differently in terms of pharmacology and if Lamictal works for you, there is no guarantee that Topamax will work as well. Topamax was a weight loss drug originally but the way it makes you lose weight (if it does) is unhealthy and the moment you stop Topamax you gain back more than what you lost. Not everyone loses weight on Topamax either. Some users have gained weight. Each person is different and the drugs work a tad differently. Having seizures is a serious condition and finding a drug that works is hard. If Lamictal works for you, I recommend you stick with that and continue your reduction plan to see how small dose is the best for you under medical supervision.
Ask your doctor about the ketogenic diet, which can help tremendously and can even reverse your condition to be seizure free. However, this is something you need to do under medical care. From my experience, very few doctors are familiar with the ketogenic diet and so I recommend you search out a ketogenic specialist and work together with the two.
Weight loss will not likely happen while you are taking these drugs unless you completely quit all sugar and sweets and grains. That is the only way–and that would also help your brain recover but not everyone is in the position of doing that.
Topamax has been an excellent medication for me. It has been the only medication that has completely stopped my migraines. It also has been great in mood stabilization when it was added in a lower dose along with my lamotrigine.
When you say off label prescribing happens too often, Lamictal was not made initially for the treatment of Bipolar, but has been life changing for many people with the disease. This includes myself. It is an excellent alternative to mood stabilizers.
And with that said, Topamax is an excellent option for migraines over pain medications or perhaps other options.
Now, Topamax should not be taken as cure all. I see the medicine is being prescribed for weight loss. I don’t think a medicine should be prescribed for use of it’s side effect….
Glad it is working for you. You gave me a smile for writing that it was prescribed for weight loss and that you don;t think the medicine should be prescribed for its side effect. The truth is that it is not a side effect! read up on the history of this drug and you will see that is started as a weight loss drug, which then the FDA pulled from the market because of its side effects–the ones you now enjoying for your seizures. So You are the one who is being prescribed for its side effects. Weight loss was the original prescription.
In terms of migraines: there is no need for it. I have been working with thousands of migraineurs over the past several years, and, in fact, I have just presented about migraine on a medical conference. Migraine can completely be prevented by a change in lifestyle. The concept is not easy to explain here but I wrote much about it on this website before and finishing up my 2nd edition of a book on explaining what it is. It is a metabolic condition as a result of the “ancient brain” of migraineurs. I will write about here again, perhaps summarizing my conference experience and what I discussed so others can understand. So look back here in the near future!
Migraine needs no medicines at all.
Hope you have a great day,
Thank you for this in depth and informative article. I saw a pain specialist last week who wanted to take me off my current muscle relaxer and put me on Topamax. She said the only side effect is weight loss, which I could benefit from. Skeptical of all medications, I asked her, “if it is so great, why isn’t everyone on it?” She became angey and told me that she couldn’t do anything to help me if I was going to be narrow minded and not help myself. It seems there aren’t many options for pain patients these days?
Very sorry for your experience as well. It seems way too many people have the kind of experience you have. The only cause I can think of is financial since no doctor would force patients on a medicine like this unless there are some ulterior motives. There is an open payments database to search for doctors here. I recommend you type in the last name of your doctor only (they often change how they put in their first name to avoid easy find) and put the state only and not city or zip, again, for the same reason.
Choose the time period of 2013, 2014, and 2015 are available individually so pick one and see how much money was received by your doctor. Check also for what and if instead of money they may be getting dinners or lunches that also amount to a lot of benefits to doctors to press one prescription over another.
Hope this helps. I never visit a new doctor without first checking if his/her name is in this database and for how much money. I am not much concerned over a couple of lunches but I definitely am concerned over dinners, research funds (clinical doctors have no business running research), teaching (they are usually in support of a particular drug that they get paid for lecturing to other doctors on), etc.
Sad that we have reached this state but each person must go to a doctor these day with as much if not more knowledge than her doctor has.
Hope this will help!
I lost 10 lbs in one week on tops max. I couldn’t eat anything. When one day I forgot how to write. Literally — had a pen in my hand and could not remember how to write — I knew I had to get off this medication. (I took it for seizures that were and are still not controlled.) Topamax was terrible for me. But it does control some people’s seizures. And seizures are life threatening or otherwise can cause very dangerous situations for people with seizures, especially grand mal seizures that last a long time.
Very sorry to hear how Topamax backfired for you as well. I just read your other comment on sugar–to which I will respond separately but here I wanted to note something important. Sugar (glucose to be precise) damages the myelin sheath in the brain. The role of the myelin sheath is to coat and insulate each neuron to make sure that voltage leaks don’t happen. The essence of seizures of voltage leaking and firing off in all directions. Therefore it is preventable if you can rebuild your myelin sheath to insulate your neurons.
Not sure you know that over 70% of the brain is made from fat and 25% of your entire body’s cholesterol is in your brain. The brain is literally all fat–with the exception of the blood and some minerals in the fluid (electrolyte elsewhere in the body). Since glucose damages the myelin, there are two things that can be done to treat, prevent, and in some cases cure seizures:
1) stopping all sugars–every type, every color, every brand, real or natural or fake or liquid–including honey. All. You need to also stop all grains (not gluten but grains; see my article on the here), also need to stop all fruits except for raspberries and blackberries and all vegetables that grow below the ground (starchy stuff). You also need to increase your fat: olive oil, coconut oil, and animal fats–no vegetable oils. You can do this little by little or follow my point 2
2) get on the ketogenic diet. Children with seizures are placed on the ketogenic diet (by many medical institutions) for 2 years. After 2 years most (not all) are completely cured. In adults it takes a longer time but I know many who have succeeded.
Seizures are very serious and you need to bring them under control. Your enemy #1 is sugar and I have to say enemy #0 (meaning worse than sugar) are juices, smoothies, shakes, and similar because they concentrate the sugar and you get more sugar in a glass of unsweetened apple juice than in a large slice of cheese cake.
So change your diet drastically and watch yourself go seizures free. As for the ketogenic diet, I have been on it for over a year and a half and would not get off of it for a million dollars. I love it and never felt better! Quitting grains and sugars is very hard because they are extremely addictive but it can be done.
Good luck to you!
Thanks for your support and kind words. I am over the dopamax week from hell. That was 15 years ago….but it was not fun, that’s for sure. And it was early in for that drug. MY doctor stopped prescribing it…
I have already drastically changed my diet. Ketogenic works for some kids with epilepsy and certain syndromes. It has about he same success rate as meds. I don’t have the kind of epilepsy that typically responds to the diets but it is worth trying. My type of seizures are known and complicated. I am working up to modified Atkins — I am not sure ketogenic would work for me due to food allergies and preferences but will get an appointment with a dietician via my epilepsy specialist. I have the book from the folks at Hopkins epilepsy center on ketogenic/modified Atkins and have been reading and rereading.
I am on the no sugar path — am already off all processed food/sugar which includes anything like honey/maple syrup etc no juicing and smoothies — for a year save a few slips — and am cutting back on fruit slowly. The hot flashes (which I had constantly without break for 2 constant weeks a year ago that started me in this have disappeared to almost never) if I have sugar slip ups they come back. When I reported this to my GYNO she said menapause symptoms can come and go. whatever. That’s her opinion. This is my body.
My seizures are not likely to be controlled but you never know. I do feel better and my cognition crisper on higher fat and high protein. And NO grains. That much I already know. I’ll take that.
Change takes time. I am working on it! 🙂
My diet has a future. Thanks again for your words of encouragement.
Glad to hear Abeline that you are considering the modifies Atkin’s diet (MAD). It is ketogenic actually! 🙂 The 80% fat, 16% protein, and 4% carbs of the calories is indeed the MAD!! That is a great way to start the ketogenic diet because once you are on MAD and are totally used to it, you will feel so much better! 🙂
Good luck on that!
Your reference for brain damage, number 4, I believe; the “Expert Opinion” (their term, not mine) was that (basically Trokendi or Topiramate extended release under another name) was not only “safe” but a “landmark” in the medical community. Yes, I triple checked–it’s the journal article you provided. I’m confused. Why use such a positive, glowing review? And where was the evidence of brain damage?
I’m on it for seizures as my primary medication. And yes, it caused significant weight loss. Considering I had just had my second child and had been forced to take Lamictal throughout the pregnancy, I certainly didn’t mind that part. Every other seizure medication seems to cause serious weight gain, and hair loss, and the promise of at least one of the two going away was wonderful.
Normal for my 5″5 frame (I’m 36 now; diagnosed with epilepsy after the birth of my second child) is between 124-128. Last time I checked the scale it was at 108 and dropping. And the hair loss? Better on Trokendi XR, but my new Obamacare insurance won’t cover it so I’m stuck on generic Topomax now and it went from a few disconcerting clogged drainfuls, to it coming out in handfuls daily.
Overmarketed? Absolutely. Trokendi XR, where I am is over $950 a month without insurance. Even my generic Topomax dose isn’t fully covered and the uncovered portion is ridiculous.
Dangerous? Depends on who you are. If you’re that patient who can’t get their seizures under control until you add this to the mix, then it’s relatively less dangerous than the seizure that could occur while they are holding one of their children, soaking in the tub, or God forbid, driving without a license if they’re completely senseless. Far-fetched? No. For thousands, this crappy medication has been a blessing. Kidney stones and all.
For me, I have a neurologist appt tomorrow during which I’m going to beg for something else. What? Hell if I know. But I can’t handle losing any more hair.
But sincerely, please point me straight on the brain damage reference. I must have missed it.
*edit: I meant diagnosed after my first child.
Thanks for your comment. I think you misunderstood my reference to “Phentermine and topiramate extended-release: a new treatment for obesity and its role in a complications-centric approach to obesity medical management” article; it was not for a glowing review but to show that Topamax was originally a diet pill! Indeed, you are losing weight–clearly it is a diet pill. It was in a sarcastic quote that I posted that article, which is free access. There is no positive and glowing review; only ridiculing an industry that now prescribes a diet pill for seizures, migraines, and about 50 other completely unrelated health conditions.
Topamax, as per FDA label, is NOT a primary medication for seizures–it can only be used (legally and with label) as a secondary medication complimenting a real seizure medication if that is not enough. You have not been prescribed Topamax correctly.
Also, Trokendi is not THE brand name since both Topamax and Trokendi are brand names. Trokendi is the brand name for the time release version. For both Trokendi and Topamax the generic is Topiramate, only for the time release it is Topiramate XR–if that is available. If Trokendi worked for you, ask for Topiramate XR on your next refill and let’s hope it is available. Other than Trokendi being a time release, the two drugs are identical.
In terms of being dangerous: it has proven to be by reports. This is not my opinion but a fact and is labeled as such on the package of Topamax (and Trokendi) by FDA regulation. Topamax and Trokendi leave behind permanent brain damage as per the FDA–not my imagination. It is perhaps less dangerous than a seizure but have you looked at alternatives?
I am not supportive of medicines when they are not necessary and in the case of seizures there is an alternative that may work for you–it works for many though probably not for everyone.
It is used by several medical institutions–not sure where you are located but there are many hospitals/medical centers that specialize in seizure care using a therapeutic level ketogenic diet. For children, the ketogenic diet is curative after two years. There are many publications about this treatment and has been used for years. Here is one, here is another, and here is a link to The Epilepsy Foundation and how they are using the ketogenic diet for epileptic seizures.
Look into some of these sources and you may just gain some weight back and regrow your hair after you can stop all seizure medicines. So tomorrow, when you meet your neurologist, discuss the ketogenic diet! 🙂
Thank you so much for those links I will definitely look into them. I had such full, bright fire red hair (fire truck red), so to see it coming out like this is devastating.
I’ll have to see if my insurance will cover Topiramate XR. I seriously doubt they do, they don’t cover much. And my apologies, I wasn’t using the word generic literally earlier. I’ve taken a two year hiatus from Facebook and blogging and it’s easy to forget that not everyone knows how liberally you use a certain word. Generic is my word for cheap, and opposed to my Trokendi XR, the plain Topomax was literally crumbling in my pill cutter when my neurologist had me cutting it in order to get proper dosage every day. Like seven year old sweet tarts.
I was surprised to read that it’s not a primary seizure medication.
You are more than welcome Breanne. I feel for you; I am a red hair too! Such a shame but it may grow back.
There are other medicines that are primary seizure medicines if your doctor refuses to discuss the ketogenic or if insurance doesn’t pay for your extended release. The original seizure medication is Gabapentic and the one that is a newer version of the same is Pregabalin. Both of these are primary seizure medications and have fewer side effects–though they still have some of the same side effects as Topamax. It seems to me that people who take those seems to have fewer problems. Talk that over with your doctor tomorrow. Here si the label from the FDA on Topamax. Note that it is an “adjunct therapy” for people over 16 for seizures–it is not supposed to be used on its own. This also gives you all the warnings.
Good luck!!! Keep us posted so we know how you are doing!
You might want to try rxoutreach for your med, it is based on your income.
Topamax has nearly cost me everything, including my life. I have been diagnosed with chronic intractable migraine without status migrainosus which equates to me getting about 20 migraine days a month on average. I like to imagine my migraines as a reverse super power – ever heard of Mr. Glass? It’s like I have this curse that causes visual field disturbances and distortions in addition to severe pain. The migraine aura can be a terrifying thing. I’ve tried everything to control them, and for a time I thought topamax was the answer. It definitely reduced the severity and frequency (initially), but over time this effect faded. I have been taking it for 3 years but 4 months ago at the advice of my doctor I increased my dosage from 50 mg to 200 mg following his titration schedule. I should have noticed it was the topamax immediately when suddenly I couldn’t sleep anymore and started feeling… Different. Topamax works on you slowly, casting a wide net and pulling you in. That’s how it felt with me. Prior to increasing my dosage I was a happy-go-lucky, young professional doing well in my job in project management. Today I am sitting here with MS like symptoms, cognitive changes and am now forced to wear glasses. I’ve been to the hospital 4 times in 3 months. You name it, I’ve had it all… Suicidal ideation, panic attacks, distorted reality, hallucinations, extreme weight loss, depression, heart attack like chest pain, numbness and intense parasthesia… Alice in wonderland syndrome is a very real thing and it’s terrifying. The day I saw a figure dart across my floor and up my wall was the day I knew I was hallucinating – I had just woken from a dream but it was terrifying. Not to mention the big things being small and small things being big sensations occurring on the regular. For the last month prior to starting my topamax withdrawal I was subjected to these hellish, introspective nightmares where I wanted to function and be active… I just couldn’t. I have had to isolate myself in these times because I just don’t feel normal – I’ve somehow managed to make it through work but in the past few months everyone has been avoiding me as if I had the plague (whereas 4 months ago I was liked by pretty much everyone!) Physically, mentally and emotionally depleted. That was the scary part… The numbing of my emotions. Normally I’m a very empathetic person, on topamax I feel next to nothing.
At this point my symptoms are so severe that my neurologist has ordered an MRI (which was clear) and an EEG (still waiting on those results). It has derailed me to the point where I feel like a shade of my former self. There have been extreme disassociation and even derealization effects. All of these things started happening when I increased my dose. See the problem with topamax is that even while I should have been like, “Holy S**t, this drug is causing this, right?”, you become so jaded in your perspective that you don’t realize it’s even a potential root cause. The confusion and cognitive slowing is surreal. I forgot the names of places I would frequent, and even names of people I know close to me at times. On the emotional numbing side of things I literally had no desire to maintain former relationships and was prone to bouts of anger. My life for the past four months with the constant fatigue, insomnia, balance issues, impaired gait and other MS like symptoms has been a nebulous shade and veil through which only I could see. A special level of hell, just for me. I truly hope I recover from this. There have been many times I was convinced I was having a stroke (sometime during my increase of dosage I started having transformed migraines of a totally new intensity). I also have muscle twitching and what could be minor seizures now. I’m not really sure as I have woken up with unexplained bruises and things of that nature. Time will tell… Que Sera Sera.
Fast forward to now. I have realized that Topamax is likely the cause. It’s taken a long time to connect the dots through the cognitive impairment. One of the only things that kept my sanity during this time was my practice of mindfulness and meditation. I started botox injection treatments for my migraines at the max dosage and am getting some benefit for my migraines. In addition to this, my neurologist has discontinued the topamax but I am suffering from severe withdrawals from the medication. In the 1 week since discontinuing the drug I have developed a severe infection (essentially bronchitis) and am now being forced to take prednisone to help my body deal with the inflammation.This is not the only effect. I’m just hoping the remnant cognitive and visual changes that happened to me will fade away. I hope the panic attacks stop, too. I am forced to taked klonopin to deal with the panic attacks, prevent withdrawal seizures, and stop the sudden onset anxiety – I am nearly unable to function. I am about to lose my job due to constantly missing work and my personality change. Topamax may be helpful for some.but for me it is the absolute definition of toxicity. I just want to go back to the person I was before and I hope that happens. I’m thinking that now I’ve discontinued the medication that I will. So yeah sure, it kinda helped my migraines and I lost some weight – but at what cost? While inevitability is the crux to bind most, topamax is a vice that is nearly impossible to escape. So yeah… Topamax? Caveat emptor – take ’em with a grain of salt.
Sean, would you be interested in sharing your health story in a blog post so that it can be shared and read more broadly? More folks need to read this. Please let me know.
Yes absolutely, this has been a life changing event for me. I am actually in the process of starting some blogging endeavors and this is certainly a topic I want to cover in addition to the many others I’m considering. Awareness needs to be spread on this. No one expects to be the very rare side effect case, but it happens. I’m starting to wonder how rare the rates for them are however. I have a basic WordPress page but have only ever written one post. I am hoping to establish a full website where I can cover a wide range of subtopics, my Topamax experience included.
Fantastic. Send me a note via the contact form in this link and we can discuss. https://www.hormonesmatter.com/write-for-hormones-matter/
So awesome Sean! Looking forward to reading your terrific papers! 🙂
I took topamax twice for my seizures, for a few years straight. I had an AVM in my right frontal lobe and brain surgery at 9 years old. Most things I have had to figure out on my own. My biggest question is, does topamax have any permanent long term effects after being off this drug? While on topamax I went from 210 lbs to 109 lbs. It became toxic to my blood stream. It seemed to open up a different part of my brain that allowed me to become very in tune with others energy. May sound crazy but it made me like an open port hole. YES it was a horrible drug that created hormonal imbalances that then caused me to have hormonal seizures every month during my period. My progesterone dropped to nothing. I got sever acne, saw things that were not there, uncontrollable screaming, sever night terrors, paranoia thru the roof, hot flashes, dry heaving daily, nausea, anxiety, forgetting where I was, confusion and much much more. I feel it was a volatile drug and would never recommend it to anyone. My hormones are now a mess. I have been off it for years but still have hormonal imbalances ever since taking it. Ever since off of the topamax I have an underactive thyroid now. I got blood clots on my lungs due to a genetic blood clotting gene (factor five). The hormones the doctors put me on (birth controls) to balance our my hormones from the topamax cause my body to think I was pregnant which then caused phlebitis which is genetic with my mother. That then created surface clots in my legs which then travled to my lungs creating the pulmonary embolism all over both sides of my lungs. Now at 29 I have had beyond too many health issues and want to know what to expect next. While being on topamax I also got interstitial cystic in my bladder. On the other end topamax most definitely opend up an avenue of my brain that I had never used before. Despite what any doctor says that drug allowed you to (see into the future) to put it lightly. Grainted most think they know all there is to know about the brain. The truth is we know NOTHING. This drug opened up something we do not use everyday. Despite that I want to know the long term effects that may continue or follow after being off the drug for years if any. Because with all these health issues it is difficult to figure out what causes what until you rule out other things. The level of anxiety I now have and blackouts of what is going on is extrem and only happened after the topamax. I am told it is many things from PTSD from childhood abuse all the way to pseudoseizures that my brain is now trained to having due to years of neron transmiters sending wrong signals. I never had these episodes before topamax. Now I live with it everyday. I go to a specialist at MGH in boston for cognitive behavioral therapy to try to retrain my brain as the say. The doctors say it is like your brain being on a sled path that it is use to and now I must reprogram it and get it off seizure mode. In the past 3 years I have had all normal EEGs which would be the first ones in 20 years. After the topamax my EEGs have been normal and never before that did I have a normal EEG in my life. Although they are now normal I have these crazy episodes daily where I forget what is going on, where I am, what I am doing, it’s like my mind goes completely blank which then causes me to go into a panic attack. This never occured befor being on the topamax and now it happens daily even though I have been off topamax for atleast 3yrs now. So I now have these crazy episodes daily but no seizure activity after being on the topamax. Also I have severe homanal imbalances after being on the topamax. Is this just shit luck or are the two connected. Did the topamax do this or is it just more health issues. Sorry I know its a lot but in order to fix it I must cross things off the list. The doctots never have figures much out I have had to advocate for myself along the way and do the digging. You may know nothing but it is worth a shot to ask. I know I am a complex case. I have heard this many times from the MGH neurology team but it never hurts to keep trying. If you have any feed back it would be greatly appreciated more then you know. Thank you.
Sarah, do you want to share this story in the form of a blog post so that others, beyond those who just read this post, can read it. If so, please send me a note through this link. https://www.hormonesmatter.com/write-for-hormones-matter/
I am so very saddened by your story. Unfortunately your gut feel is probably right. Topamax (and all other voltage gated calcium channel blockers) work systemic, meaning at every voltage gated channels in your body and not just the ones where they should work to prevent problems. This means that every single cell that has such channels will be affected and some permanently. The reason why is somewhat complex but in short: the medicine is a blocker–think of it as a cork. One can put a cork into a wine bottle such that it slides out easily (the good way) or that it breaks (the bad way). Calcium channels are blocking the voltage gates like a cork is blocking the wine bottle.
Now envision a wine bottle with its neck made from a soft sensitive fine material that can only stand straight because of the way it is folded properly. Now if you put a cork into that neck, while the bottle remains a bottle, the neck will be squished and its shape will change. This is precisely what a voltage gated channel is (all kinds, not just calcium). They are made of protein, which is folded in a special way to work. When a block from the drug settles in its opening, it can damage the way the protein folds, destroying its properties and damaging it permanently. It does more damage but this is a, perhaps, sufficient visual for you to see what some changes are permanent from these drugs.
Normally, seizures can be “cured” (for many children there is a cure; for adults only anecdotal evidence exists) by the ketogenic diet. Some healthcare clinics and hospitals treat people with seizure with the ketogenic diet. While research has no explanation for the reason for the cure, since I am a migraineur and work with thousands of other migraineurs helping to get rid of their migraines, for many the ketogenic is also a preventive (too early to call it a cure since none of us had been in ketosis long enough to know). However, since I know the cause of migraines extremely well–over 4000 migraineurs are migraine and medicine free who were/are under my care–I believe that the ketogenic diet with its high fat and very low carbohydrates (if any) protects and rebuilds the myelin sheath (voltage insulation) in the brain’s white matter, which is where the brain cells axon (the part that carries voltage) passes through. The remyelination of the neuron prevents voltage leaks and misfiring, which is what seizures are.
The low carbohydrate (or carbohydrate free) diet allows the myelin to recover as well since glucose damages myelin.
So my first recommendation for your recovery is to find a clinic that can help you get on the ketogenic diet since it is difficult to start it for some people and the maintenance of it can also be hard if your diet is carbohydrates heavy (fruits, veggies, grains, soft drinks, fruit or vegetable juices are all carbohydrates!) since you need to reduce your carbohydrates to just a few grams per day (in the case of seizures that is about 3 small tomatoes a day to give you a visual of the amount of carbohydrates that are permitted to eat). It is a very major lifestyle change and you cannot ever have a cheat day until you recover.
Recovery is not guaranteed but improvements are since the ketogenic diet also incorporates intermittent fasting, which gives birth to stem cells that are healthy and the deletion of malfunctioning cells (apoptosis) and so some degree of recovery may be expected.
If you find these changes too drastic, you may just want to try to reduce your carbs and increase your fats–mind you by fat I don’t mean vegetable oils or margarine since they are unhealthy. Olive oil is great only don’t heat it–it becomes a goo. Cook with animal fats, eat everything whole fat–nothing reduced fat. Even at a modest change to your lifestyle you may find major improvement.
I wish you great success in your recovery!
I have some experience and education in professional counseling, and some personal experience with Topomax. Correlation doesn’t always equal causation. Keep that phrase close to you, and it will serve you well for the rest of your life. Especially if you’re trying to figure out complex personal matters, or even mysteries of a higher nature (like having a sixth sense, which I’ve had since childhood, just like my mother, which we still cannot account for or explain).
You’ve had a lot happen to you, much of it in formative years. I think someone more qualified can tell you more about whether or not a medication like Topomax could add to your genetic health issues. But I think I can say with a decent level of confidence that limited use of Topomax wouldn’t cause long-term panic attacks. You might have had your first one while taking Topomax, but the fact that they continued long after you concluded therapy leads me to believe that it wasn’t responsible. That being said, it can cause anxiety or at least lower your threshold for tolerating it, but only while you were on it. Panic attacks are vicious things that can perpetuate themselves. If you live in fear of having them, you can cause them yourself (that’s not blame, it’s your brain doing what it does). The good news is, always, that there’s hope. No matter what the case may be.
Just food for thought. I’m sure far more intelligent folks will chime in. I’m a fiction writer per trade (the counseling thing didn’t feel like my thing in the end). So I’ll leave the good stuff to the qualified individuals.
Thanks for chiming in. I understand what you are trying to say but I found a misunderstanding that is important to explain.
You wrote: “I can say with a decent level of confidence that limited use of Topomax wouldn’t cause long-term panic attacks.” This is not necessarily true because it can–even from a single pill. I work with many people who are prescribed Topamax (or Trokendi) on a regular basis (I work with migraineurs, which is my specialty), and I can say with experience that a single pill can put a major tailspin on some people and sometimes cause irreversible damage.
The mechanism behind this is very complex but a simple explanation may suffice of the cause.
Topamax (and all voltage dependent calcium channel blockers) work on the same principle: block the voltage dependent calcium channels such that they stop working. The voltage gated/dependent calcium channels are high voltage channels that are necessary for the neuron to release its neurotransmitters. In the brain, communication is by neurons exchanging neurotransmitters. There are two problems with blocking the voltage dependent calcium channels.
1) the channel itself is made from protein that is very delicate with special folding. It also has very specific opening shape and polarity, so only calcium ions can enter. But when calcium ions enter, they don’t sit on the channel opening but enter without touching it: they enter using a step-ladder-like polarity “hand-me-down” until the calcium ions enter the cell. When this channel is blocked, both the delicate protein folds and also the polarity step ladders may be damaged by the shape, lack of polarity, and size of the blockage, and this may be irreversible.
2) As noted, communication in the brain between neurons is via neurotransmitters. Neurotransmitters are released from vesicles (little sacs) into the synapse (space between neurons) for communication purposes (one neuron releases and the other picks them up and transfers the signal). When the voltage dependent calcium channel is blocked, the neurotransmitters cannot get released. It is the job of the voltage dependent calcium channels to literally kick the neurotransmitters out of the vesicles. No neurotransmitters released means the synapse is empty. And empty synapse represents lack of communication. When a neuron stops communicating, synaptic pruning occurs. This pruning is the destruction of the connection between neurons.
Therefore, voltage dependent calcium channel blocking drugs are brain degenerative–this is where the damage becomes visible. Some of this damage may be permanent (proteins rarely if ever get replaced in full unless drastic measures are taken), whereas synaptic pruning is not the destruction of the neuron only the break of connection, which can be rebuilt should the neuron start communicating again.
Some people are extremely sensitive to voltage dependent channel disruption and Topamax. I believe it is also a voltage dependent sodium channel blocker as well, only more selectively, which only affects hydration. However, the voltage dependent calcium channel changes can be permanent; they are for many people. And Topamax can cause major reactions from a single pill to some people, including full mania.
I hope that this clarifies some facts about how Topamax works, what it does, and why it causes the kind of damage it does for so many people.
I was reading this with tears in my eyes. You have an amazing ability to place your reader into your shoes. I am so saddened by your experience. However, I can try to help you with the withdrawals as I have hundreds of others with the same whom I am helping until the problems are gone–and they are gone after some time with proper care. My specialty is migraines and so you may find a good migraine solution by joining my group on Facebook where I help many migraineurs both with their migraines and also with the medicine withdrawals–like yours. The best part of it is that we don;t use any medicines–our approach is very different from all others. My approach is based on the genetic mutations (1254 so far for migraineurs) and how to get around those by biological balancing manually those functions that are “broken” in migraineurs’ brains as a result of the mutations.
There are only a handful of drops in a pond for whom Topamax is helpful (without seizures). 100% of the migraineurs I meet stop taking it and unfortunately some are left with “permanent” damage, which I think the ketogenic diet may fix… we are trying that since it seems to repair the myelin (insulation) of the brain cells. This, in tern, is extremely useful for MS type conditions that you now feel since that signals myelin damage. The group where we are using the ketogenic diet for migraine can be helpful with that. There are now several hundred people in that group (new group) and it seems to work really well. I am on the ketogenic diet and my migraine-brain is just gone–as are many other health conditions.
I welcome you to join us so we can try to help you.
I also would like your permission to copy-paste what you wrote above in the 2nd edition of my migraine book that has a section where I list “Drugs of Shame” and literally scold doctors for prescribing them without knowing what they do to migraineurs. I think your story is so incredible and so well written that it simply must open any open eyes and closed minds. Please let me know if that is OK. Your name will not be in the book only a link to where people may find the original.
I am looking forward to meeting you in my group(s) and hoping we can help you!
Thanks so much for you kind words of support, they do not fall on deaf ears. It has been a difficult time – the most difficult time of my life to date. You mentioned gene related migraine approaches… If it means anything I have found that I have the MTFHR C677t T/T gene mutation (woohoo mutants!). Like I said, reverse superpower. Thank you for your kind words of support and for my writing.. Sadly, I have shed many tears over the past few months in the throws of this ordeal. The funny thing is my parents actually own a health food store in addition to a medical clinic and are having phenomenal results encouraging the ketogenic diet, supplementation and solutions based in that regard. I have had difficulties pursuing that diet myself for some reason – maybe it is just latent reticence on my part. They are always encouraging me to take that up and there may be something to it as obviously I have some intolerances at least at the pharmaceutical level that could harm me long-term. I would be interested however in checking out your Facebook group. I am still in the process of being evaluated by my neurologist to rule out other potential root causes but think either way a diet supporting this could be beneficial. The Botox injections have certainly helped my migraines in a significant way I will say that much, but who is to say how well it will work. Myelin damage is something to be considered however given the severity of my withdrawal symptoms and ongoing issues… The main indicator for me is my vision and coordination. I was given prednisone to help fight off the severe reaction I was having in this week and a half following my abrupt stopping of the topamax and still am feeling quite bad. Unable to function is the more apt way to put it. This is no bueno, and I’m pretty terrified. Due to the the perpetuation and progression of these things it actually makes me feel like I may have MS based on my ongoing and changing symptoms and I am terrified that is the the case. Since my MRI (as far as I know) did not show any lesions, I am hoping that it is just a very severe topamax reaction. I am awaiting my EEG results and get those Thursday but I am doubtful on the seizure front. That would be a real shock (haha almost pun). My neurologist stated that if symptoms are persisting by my next appointment (this Thursday) and the EEG is not abnormal, we would take next steps in terms of identifying issues. I’m sure this entails potential nastiness such as a lumbar puncture and blood work, all taking their relative toll on my wallet and happiness. He is aware of the potential Topamax reaction as I have detailed it for him thourougly, but wants to make sure it’s not anything else before strictly treating as complicated migraine.
As far as using the words describing my story in your book, I think that will be just fine. Your annotation to the source works. I plan to write a full blogged version of it at some point, but the post above will be the skeleton for that so it’s all good. Above all I’m just wanting to spread awareness and find solutions for myself and others…
All the best,
Thank you for letting me use your post in the book. I will include a link to it on this website and if your blog is up prior to my book heading to the publisher (this is the 2nd edition and already in edit stage) then I will incorporate your blog address as well–it would be great if you wrote the blog here on Hormonesmatter since you will get great readership! Some of my articles (like the one you commented on) are receiving comments 2-3 years after I wrote them, and the articles are shared thousands of times everywhere. I am sure doctors and researchers alike read this science blog so your exposure will be a good one! Plus my book: the 1st edition sold several thousand copies and I expect the 2nd edition to outsell the first. So your story will also educate. 🙂
Now in terms of the ketogenic diet (it is indeed ironic that your family is a ketogenic diet supporter with a clinic since that is so rare) I understand your hesitation. It seems monstrous at first. I have been on the ketogenic diet now for over a year–nearly a year and a half–and have no intention of ever leaving it. In fact I cannot! My body won’t let me. I can commit a sin and eat an orange fresh off the tree and in about an hour my body moves back to ketosis. It seems to be the preferred nutritional mode for my body. Many migraineurs are like me but not all so a cautious entry is advised, particularly for a migraineur. The typical entry of fasting for several days just won’t cut it for a migraineur, hence I created the keto-mild approach designed specifically for migraineurs. However, even at that it is not for everyone. Those who were able to stay with it though have permanent relief from all triggers as if our brains were swapped for someone else’s. However, some medicines kick you out of ketosis and Prednisone is one of them. Prednisone uses insulin receptors and backs glucose up in your blood, often to diabetic level. That is one very dangerous medicine for a migraineurs with metabolic disease predisposition–all migraineurs are.
The genetic mutation MTHFR C667T refers to B vitamin methylation problems that requires special forms of B vitamins (each taken separately); the majority of migraineurs have this mutation (including me). If you have a chance to ask before your next blood test, ask for a homocysteine levels test, which is specific for folate methylation (or lack thereof). To date there are 1254 genes associated with migraines but I suspect that many of those are coincidental. But if you visit the link–this is already selected for migraine genes only–sort as per “Score” (furthest right) and you will see why they use Topamax for migraine: the very first and highest scored mutation is CACNA1A gene (Calcium Voltage-Gated Channel Subunit Alpha1 A) and Topamax is a voltage gated calcium channel blocker… but something that is different from the general population doesn’t mean it is mutated into a bad thing only no one is connecting the dots–I do and all the migraineurs in my groups understand the connection too.
I recommend that all migraineurs start in my other group where we work on establishing electrolyte balance (not using electrolyte drinks!!) and reverse eating habits that are disadvantageous for migraineurs with a huge group support (over 1500 strong) who all do the same thing and have the same issues.
Those who recover leave after some time though some remain but are not active. Only few of the 1500 have been members for over 2 years and they are there to help. Stopping Topamax requires that your brain and body fixes the voltage gated calcium channels that the drug blocked. The channels are made of protein that have a certain shape and folding pattern that a blocking object (Topamax) with heavier weight, larger size, different shape, and wrong charge may damage. The healing takes time and needs full support (in the form of electrolyte and proper nutrition) to recover as much as it can. It is not possible to stop Topamax if you are not providing help for those proteins to recover. The main migraine group, the one using the Stanton Migraine Protocol® (free) is where I recommend you start. About 20% of all migraineurs of the past/present were/are on Topamax or similar (Pregabalin, Gabapentin) and were/are slowly coming off with their doctor supplying the proper long-time refills with approval of my reduction schedule, which is very different from what the pharmaceutical companies recommend for reduction of these drug types.
Many members had very bad experience with Botox and several members even had surgically implanted neuronal stimulator that they all had surgically removed after they became migraine free. Everyone becomes migraine free who follows the protocol only vegans cannot and vegetarians have a harder time.
I am positive that your tests all will come back completely normal. Having MS like symptoms do indicate you need to end up on the ketogenic diet for some time to repair your myelin damage. We will help you get there. 🙂
Looking forward to seeing you in the group.
Best wishes to you,
I have had a very similar experience. But I’ve been taking it at 200 mg x 2 daily for 7 years. I didn’t realize how bad the symptoms had gotten. But now, like you said, MS like symptoms. I graduated college with a high GPA. Now I cannot recall the street I live on sometimes. Or even my pin number to my debit card. I fall. My blood pressure drops dangerously low. I’ve seenever every doctor imaginable. But all the tests have come back clear. I used to run 5 miles three times a week. Now I am so weak and in pain. I have this body pain, all over. I wish more people knew to stay away. This is not what I wanted. Yes, it helped the migraines. But only in the beginning. Then I honestly think in the end they were worse. I catch every cold and flu around. I’m constantly sick. Idk if I will return to normal. Or not.
I am very sorry to hear. Are you still taking Topamax? Or have you come off of it and these are the remaining adverse reactions? To give your brain all the recovery it needs, it helps to switch to a nutritional approach that they use for seizure treatment. It works extremely well–they also use it now fighting some cancers, MS, Parkinson’s and other condition–including migraine! I have a migraine group doing just that, which you are welcome to join. I found that the very low carbohydrate and high fat nutritional approach–used therapeutically or at the nutritional ketosis level is able to repair the brain. It sounds to me like the Topamax is destroying more than just the voltage gated calcium and sodium channels! It seems to be affecting your mitochondria as well.
So please join and let us help you.
Looking forward to working with you,
I’m so glad I read this and thank you for posting. I have been taking topamax for ten years and and lost so much as well…but it is just as you said. It works slowly to take away your intelligence, your emotional connectivity, and your ability even to decide if it’s caused by some outside factor or if the problem is just you. I am just now trying to break away. I am glad to have read your post so that I can be prepared for the possible side effects of stopping as well. Thanks again.
Glad to hear that you read the article. Please reduce the medication very slowly–many doctors give a speedy reduction recommended by the pharmaceutical company but for most people that is too fast. Please talk it over with your doctor since a very quick titration may even cause a seizure.
Best of luck to you!
Interesting I came across your site again as I was looking into symptoms of topamax which I started this week at the recommendation of my doctor for the chronic headaches/cluster headaches I’ve been experiencing for the last three months. I posted on your article about ssri withdrawel symptoms. I took zoloft for a few weeks then starting experiencing these headaches for the last three months. This week I finally gave into the topamax I’ve had sitting around. Took 1 on Tuesday became dizzy, disoriented and everything appeared smaller that entire day. I ended up back in the doctors and demanding an MRI to rule out anything else. The Ct, MRI/MRA with contrasts were all normal. Now I’m almost convinced the zoloft triggered these pattern of headaches. I just sit here in pain, unable to barely function in work, school taking care of my daughter. It’s a miserable feeling.
I remember your comment on Sertraline. Very sorry to hear that you have started Topamax since that is yet another monster medicine. Unfortunately there are no good medicines for cluster headaches–the only thing that seems to work is oxygen at the first sensation of the pain. For migraine I run a migraine group that you are welcome to join and also a new procedure, ketogenic diet for migraineurs, which is more restricted but more successful than anything else.
Over the past near 4 years we helped over 4000 migraineurs and several people with cluster headaches. We may be able to help you too.
Thank you for the information. Its unfortunate that these meds could have now triggered headaches/migraines in me now. I will look at joining the migraine group!
awesome Leah! Looking forward to seeing you there!
Hello. I found this post by accident when trying to find possible correlations between seizures, the meds I’ve been taking for them, and the recent diagnosis of trigeminal neuralgia. I started with seizures when I was 30, in 1996, and finally ended up with the combination that worked…Lamictal and Topomax. It is true, that I lost weight, and I definitely notice the problems with memory and word search. I’ve definitely had my share of moments, feeling dumb! However, for the most part, it’s worked and was so much better than what I went through in the 8 years leading up to getting to that combo.
Fast forward to January 2016, when my TN symptoms started. This past year has been hell, and nothing has worked. Of course, some things can’t be tried as they may not play nice with what I currently take. So, here I am. Why now, why seizures and trigeminal neuralgia? I was 30 and then 50. Nothing happened, no trauma. Wondering if related. Started looking to see if my meds had anything to do with it, and then found this post. Very interesting. Have also spent some time researching diet changes…paleo, keto, gluten free. Have found some research that supports it, but I would love to have help laying out a plan.
If you have thoughts, I’d love to hear them. By the way, I now take Baclofen in addition to the other for the TN. my doses are topomax 50mg 2x day. Lamictal 100mg 2x day.