Topamax: The Drug with 9 Lives

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Angela Stanton, PhD

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

  1. Obesity1. Medicine: Topamax
  2. Seizures1. Medicine: Topamax
  3. Migraine1,2. Medicine: Topamax
  4. Impulsivity3. Medicine: Topamax
  5. Diabetes with nerve damage4. Medicine: Topamax
  6. Bipolar disorder5. Medicine: Topamax
  7. Depression6. Medicine: Topamax
  8. Alcohol addiction7: Topamax
  9. 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

Voltage gated calcium channels plugged and unplugged
Voltage gated calcium channels plugged and unplugged.

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:

  1. 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)
  2. P/Q-type that activate neurons and neurotransmitter and hormone release
  3. N-type works at the nerve terminals similarly to P/Q for neurotransmitter and hormone release
  4. T-type think of it as the pacemaker of the brain for firing with a particular frequency
  5. 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.

Sources:

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).

 

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220 Comments

  1. 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

    1. Hi Leanne,

      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.

      Best wishes,
      Angela

      1. Angela,
        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.

        1. Dear DeRhonda,

          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

          Hugs,
          Angela

  2. 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😁

    1. Dear Linda,

      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,
      Angela

      1. 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

        1. Dear Aa,

          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,
          Angela

  3. 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.

    1. Dear Erin,

      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.

      Best wishes,
      Angela

  4. 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.

    1. Dear Helen,

      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,
      Angela

  5. 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.

    1. Hi Leah,

      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!

      Best wishes,
      Angela

  6. 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”.

    1. 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,
      Angela

  7. Dr Stanton,
    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!

    1. Dear Susan,

      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,
      Angela

      1. 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!

        1. Hi Julie,

          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,
          Angela

  8. 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!

    1. Dear Lea,

      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!
      Angela

    2. Lea,

      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.

      Best,
      Julie

      1. 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.

        1. 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,
          Angela

  9. 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.

    1. Hi William,

      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.

      Angela

  10. 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.

    Thanks again.

    Lonneke

  11. Dear Angela,

    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!

    Lonneke

    1. Dear Lonneke,

      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.

      Best wishes,
      Angela

      1. Hello Angela,

        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 again!

    2. 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!

    3. 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.

      1. 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

        Hugs,
        Angela

  12. 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.

    1. Dear Kemptondale,

      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!
      Angela

      1. 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?

        1. Kemptondale,

          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,
          Angela

          1. Kemptondale,
            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.

            1. Dear KamiD,

              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!
              Angela

              1. Hello Angela,
                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.
                Kami

                1. Hi Kami,

                  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. 🙂

                  Hugs,
                  Angela

                  1. 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!
                    Kami

  13. Hi Angela,

    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.

    1. Dear Brynn,

      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,
      Angela

    2. 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.

      1. Jeanie,

        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….

        Best wishes,
        Angela

  14. 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.

    1. Hi Faith,

      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!

      Hugs,
      Angela

  15. 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.

    1. Hi Celina,

      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!
      Hugs,
      Angela

        1. Hi Celina,

          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.

          Best wishes,
          Angela

          1. 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.

            1. Celina,

              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.

              Hugs,
              Angela

  16. 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….

    1. Hi Kati,

      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,
      Angela

  17. 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?

    1. Dear Jackie,

      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!

      Hugs,
      Angela

  18. 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.

    1. Dear Abeline,

      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!
      Angela

      1. 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.

        1. 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!
          Angela

  19. 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.

    At first.

    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.

    Thanks

    1. Dear Breanne,

      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! 🙂

      Best wishes,
      Angela

      1. 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.

        1. 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!

          Hugs,
          Angela

  20. 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.

      1. Hi Chandler,

        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.

      2. 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.

        1. Dear Sarah,

          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!

          Hugs,
          Angela

        2. Sarah,

          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.

          1. Dear Breanne,

            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.

            Best wishes,
            Angela

    1. Dear Sean,

      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!

      Many hugs,
      Angela

      1. Hi Angela,

        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,
        Sean

        1. Dear Sean,

          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,
          Angela

    2. 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.

      1. Dear Casper,

        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,
        Angela

    3. 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.

      1. Dear Danette,

        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!
        Angela

    4. Hi Angela,
      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.

      1. Hi Leah,

        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.

        Join us,
        Angela

        1. Hi Angela,
          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!

          Leah

  21. 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.
    Thanks

    1. Hi Kris,

      Glad you bumped into this site. I totally understand what you are going through. Topamax is now listing trigemical neuralgia as one of it potential permanent adverse effects. I am not sure it is irreversible! I fully understand your dilemma.

      Your question about the ketogenic diet in particular is very apt. Not sure if you know that the ketogenic diet is used as an alternate treatment for seizures (in most cases for children who don’t respond to medicines but I think that is the wrong way to go). The ketogenic diet works because it rebuilds the myelin layer (insulation for brain cell voltage caring part, the axon) to be protective. Kids on the ketogenic diet for 2 years are completely cured from seizures. Now I understand that you are not a kid but the process is the same only perhaps slower.

      The problem you are facing is that the ketogenic diet repairs myelin plus other broken parts, such as receptors. However, some of the medicines you are taking block these receptors and the ketogenic diet and the drugs can end up in a silent fight that turns them against each other.

      This happened to me: I have a heart condition of arrhythmia and the medicine I was on crosses the blood-brain barrier. The drug ended up becoming an agonist (working against) the ketogenic diet and increasing my heart troubles. I didn’t know what hit me until with the help of some MD friends and research on my part I was able to present the case to my cardiologist such that he instantly switched my medicine!

      Therefore, it is clear that medicines that work in the brain by blocking anything may end up acting as agonists and work against your goal. They may even harm you in the process.

      I recommend you contact an institution that is familiar with the ketogenic diet and also with seizures and the complications from Topamax use. There are many medical institutions that can help you with the ketogenic diet. I belong to Kaiser and they have a ketogenic department (specializing in seizures and the ketogenic diet). If you are within Kaiser you have a home. Otherwise there is some digging to do.

      Please do not start the ketogenic diet as long as you take these medications without a medical professional’s supervision who understands how the medicine and the ketogenic diet may work against each other and can help you go around that!

      Lots of luck to you and please keep us posted! <3

      Angela

      1. In regards to the Ketogenic diet, my son who was diagnosed with a rare drug resistant Epilepsy disorder, called FIRES, was put on the Ketogenic diet after 12 AEDs & 2 medically induced comas failed to stop his seizures after a sudden onset of status epilepticus. So, as far as thinking it may not be the right way to go, some kids may not have much of a choice. Also, I’m not sure if it was intended as such, but saying kids on the diet for 2 years are completely cured from seizures, is probably the most ridiculous statement I’ve ever heard come from someone who is a PhD. Yes, that is the “hope” or the selling point they’ll often say when Neurology Keto dieticians talk about the diet. But it’s a very misleading statement to make.

        1. Dear V,

          The comment that kids on the ketogenic diet after 2 years are cured is taken from scientific literature and knowledge–it is not something dreamed up by me.

          There are several academic sources that state this, here are a few that are open access so you can educate yourself: here, here, here, and you can also find information about the ketogenic diet for epilepsy at the Epilepsy Foundation website here. It is very commonly used as treatment for children with seizures for whom medicines failed.

          Thus as you can see the statement coming from me, the PhD you refer to, was only in the position as a messenger: never shoot the messenger before you check facts!
          This messenger doesn’t make facts up only passes information on.

          It is one thing that you are unhappy and hurt that it didn’t work for your son and I feel very sorry about that. However, one case of failure doesn’t mean all cases are failed nor does it mean you need to blast the person who passed on knowledge and call it a farce.

          There is a term used in medicine called NNT (numbers needed to treat), which calculates how many people must use a particular medicine or treatment and fail before one person got cured. I have no idea what the NNT is for seizures with the ketogenic diet (and indeed the term “diet” is wrong), but the ketogenic “nutritional process” for seizures has been used for thousands of years and is not new.

          Best wishes,
          Angela

      2. As many on here I stumbled across this. I have a question I trying to figure out, maybe you could help. My wife had chiarimalformation repaired around 2012 and and as result had to have a vp shunt put in a few weeks later. After that she has always had headaches. 18 months ago she had a event that lasted several hours. She couldn’t talk ( could not understand anything she was saying) and hand slurred speech after that foe several hours. We went too Ohio state er and they ended up thinking she had a Tia. After that she had a asd closer because they found it and wanted to remove that possibility. About 7 months ago She was put on cyptoheptadine 4 mg at bed time. It did not help so they put her on the topamax 25 mg twice a day about 6 months ago and removed the cyptoheptadine. On Tuesday day of this week her work calls me because she was having another episode of not being able to understand her speech, so we took her by squad to Ohio state er again and after another episode that lasted about 15 minutes and a Mri,shunt orgram, Mri with no dye they sent us home with a headache as cause.and referred us to a headache specialist that can not see her until May. Then on Friday she had 3 more of these events. One while she was asleep beside me in the bed. It woke her up and again lasted about 15 minutes. She feels very hot just before it happens, she says she can understand what I am saying. She responds thumbs up and down to communicate. Then she slowing starts being able to say words again then she gets very cold. We stopped taking the topamax(yesterday was her last dose). Then Saturday she already has had one more. Does this sound like side effects?

        1. Sorry,I did not double check my wording after the auto correct. This is my first time posting on something like this. I also failed to mention she is 33.

        2. Hi Bryan,

          What a scary story. I wouldn’t say it is a Topamax related issue since she had it before she started on Topamax. I wonder if she is having seizures for which Topamax is not working or if the shunt is pushing on nearby blood vessel(s) causing TIA equivalent blockage. Because she had headaches after the original shunt was put in (you didn’t say if she had any before), I am thinking that the shunt is not put in right. Sometimes shunt-failure is present. I found an article about that (academic) that may help here (it is open access). There may be a reason to believe that she needs to have the shunt replaced.

          I would recommend an EEG for checking if she has seizures–she may have to wear the EEG cap for several hours–it is connected to many wires that monitor electrical activity in the brain. If she didn’t have seizures before and she does now, the shunt’s placement needs to be examined.

          By ASD closure did you mean atrial septal defect? That is in the heart. It is a birth defect so if she had that, she likely had that all her life. Does she have hypertension?

          Not sure why a doctor would give antihistamine (Cyptoheptadine is a class I antihistamine, falling into the class of Benadryl) for headache, which dehydrates terribly for a person with blood flow issues… and that causes more headaches but that is just my 2 cents.

          In terms of quitting Topamax: just stopping cold turkey can give her seizures–slow reduction is a better option.

          With that said and done, Topamax, which is a seizure medication, is not supposed to be used as a primary seizure medication. If she has seizures, she would have to be put on a primary seizure medicine first and if that is not enough, then add Topamax on top.

          It seems to me Bryan that her medical care is lacking. I would recommend you print this message out to open some MD minds about some possible issues other than just think of “headaches” and treat the symptom rather than the cause… The Chiari malformation is a very common birth defect that for many people comes with no sensation at all–many walk around with Chiari malformation without knowing they have it. It is not always necessary to have a surgery but given that she needed one, she probably had some pain already–like headaches perhaps–before the shunt. The shunt is normally placed in to release pressure of the fluid that builds up as a result of the malformation but it is entirely possible that now pressure is building up again and the shunt stopped working, moved, got infected, or is pressing on something unintended.

          Best wishes for you and for your wife. I sure hope that they can find the cause of what I suspect are seizures. It is a very common procedure to check for seizures–not sure why that option was not offered to her.

          Please keep us updated!

          Angela

          1. She had the chairi and as result had a sub occipital decompression with laminectomy.
            And as a result of that she a had a very bad headache that ended up making her vomit unless they drugged her up to the point of passing out( in the hospital) or they also found that steroids would keep at bay until the last day of them. It took them about 3 weeks from the first surgery and several er trips for them to find that she needed the VP shunt. They scheduled it in about a day and installed it and she felt 100 times better. She has always had headaches to some extent but excedrine migraine seemed to keep them at bay for the most part. When I went to work for Ohio state and went on their insurance we had to change to their doctors in franklin county. Those are the doctors that started saying she had to get on a medication that controlled the headaches better.
            Before any of the surgerys she had headaches and started to feel like she was going to pass out while driving around corners, standing up, bending over, etc And that is why they checked it to begin with and found that the chairi was 14 mm down.

            She did have a EEG done after the first time when they labeled it as a tia and it did not show any signs of seizures.and yes that is correct in the heart, her cardiologist wanted to close it because of the first episode because he wanted to make sure if it was a tia from a clot that could have crossed in her heart that it could not happen again.
            We are now waiting to get in to see a neurologist/ and her neuro surgen. He is not the same one that did the surgery. None of them can see us till next week. She seems to be having less of the episodes but still had two on Tuesday, zero on Monday,and so far 1 today. We are keeping notes on how she feels before/ during/ after. I have noticed before she has them, some times several hours before she seems like she has to think to find the words. After it happens normally within 15 minutes she can speak and think normal. We have found she thinks she is hot when it happens then cold afterwards.it seems like when she is hot, if she goes outside in the cold it can make it pass sometimes. She also tends to sit at the same time so I am not 100 percent sure. Before she had the shunt installed when she would vomit it also made her very hot and it would help to cool her down with a fan.
            At this point it seems like a awaiting game but I am concerned it could do damage waiting. Do you have any experience with any good doctors in Ohio?

            1. Oh my Bryan, it sounds like she has many very serious complications. Unfortunately I am not familiar with good doctors in Ohio whom I could recommend. I suggest you check up on each doctor you are about to see just by search engine and reviews to see if there are any reviews. Often times bad doctors will have many bad reviews on Yelp and similar. Good doctors usually have no reviews–that is just my personal and limited experience.

              It seems to me that if these are TIAs and they are in her heart as well as her brain as a result of the heart problem, I would concur with the cardiologist who wanted to do the heart surgery. It seems that may be the cause of this and while medicines may provide some help, they also cause trouble. I suspect that her being overheated is a side effect of the voltage gated calcium channel blocker she is/was on. Most people on those drugs lose their auto-pilot for thermal control. Sometimes this can be permanent but I suspect not after as short a use as she had.

              I think you should try to see both a neurologist and also a cardiologist since they need to work this health condition out together. This is a combination case where the two health conditions build on each other and so they need to talk to decide which should be done first.

              It is a concern also why she gets blood clots (they cause TIAs) but she cannot get any blood thinners until she has the shunt possibly malfunctioning.

              Because of this it is important that she is well hydrated–perhaps sport drinks but dilute it so she doesn’t eat so much sugar. Sugar can be harmful for her now so I would try to control that as much as possible. I would sort of mimic what is in an IV fluid (sport drink diluted at the minimum to half strength with a tiny salt added and fill the rest up with water) for her to drink to hydrate properly since dehydration and lots of resting/sitting helps in clot formation. This link I referred you to also discusses Atherosclerosis, which is the inflammation of the arteries. The plaques that build up causing Atherosclerosis, though made of cholesterol, are actually made from sugar–sugar, particularly fructose, which is about 50% of table sugar sugar and also in most fruits it is about 50%–converts to triglycerides and that is cholesterol. So avoiding fructose at this time would be very helpful.

              I hope you find good doctors in your new location and good luck with her surgeries. I wish her well and a speedy recovery! <3

              Angela

  22. I do believe this is a good drug. If you want the results – you put up with the side effects. I’ve gone from multiple suicide attempts, intense binging, stealing, couldn’t hold a job, very overweight, hated myself…. To a strong, confident, successful woman making 6 figures a year, 60 pounds lighter, married and food was absolutely no problem. Going off topamax, within a month, I’d find myself getting up off the couch to go for bags of chips, pints of ice cream, the entire pie. It’s not a matter of nutrition guidelines – you can’t stop and don’t know why you’re doing it. On topamax – you can. You were wired wrong before topamax – you’re wired wrong after (yeah I repeat myself and forgot something I had on my mind literally 2 seconds ago…) but I like this person better than the bipolar mess I was before. Maybe I’m unique though because I’m stubborn and determined and don’t like being told what to do or hearing no. Or if there’s something about me I hate, or even a side affect I hate (like the eye twitching) I research how to fix it (magnesium supplements). I realize you are trying to help with your info – but unless you’ve really been in the dark depths that we’ve been in, you can’t say “oh just don’t do that” “just eat better”. That’s condescending and shows ignorance of what it’s like to be bipolar or have an eating disorder. Perhaps there is a better med you can recommend instead? That’s the best advice you could give. We need a release from the pain.

  23. Hi Angela

    I would greatly appreciate your help. I haven’t been honest to anyone about my issues with topamax. I suffered depression and bulimia in my early twenties, was prescribed topamax for the bulimia. It really did help, and it also helped me in my goal of losing as much weight as possible. I became anorexic, but to me this was better than the horror that was my life with bulimia. I developed osteoporosis, and this was the wake up call in me getting better. By this stage I had stopped going out at night, my marriage was on the rocks due to the stress I caused and my personality change, I had panic attacks and constant anxiety. i went from being really outgoing to staying alone in the house, quit 2 jobs because i wasn’t well enough to keep them up. i recovered from the eating disorder, but still binge and purge from time to time. I have now been on topamax for over 10 years. i realised during this time through my researching and experience, that topamax is an awful drug and i needed to get off it. I was diagnosed with chronic fatigue syndrome. but every time i tried to get off it, i couldn’t. However the past couple of years Ive been stronger and am now down to around 20mg per day, I have been tapering so slow, like around half a pill every 6 months. I am terrified to come off completely. since i dropped the last 5 mg, (to get to 20mg) I have been binging and purging again. I am so scared that the eating will get out of control again – i am well informed in nutrition and eating plans, such as low carb etc, and i have been through tons of therapy, but i am no match for bulimia. My fear has been that my life has to be a choice between topamax, and all its horrible side effects like the chronic fatigue which is making me too ill to work a proper job, or fighting bulimia and my weight. If i gain any more weight, that will be a huge trigger in itself, and i am worried that many people have gained weight once they stopped topamax. Do you know much about people stopping topamax and gaining weight? The other thing is my complete lack of motivation the last few weeks. is it possible that i am more motivated on topamax? I spoke to my Dr and he doesn’t see the need for me to get off the drug, he says its a very small dose to be on and is happy for me to be on it long term. but part of me would just love my life back, but not one with the nightmare of bulimia.

    Do you have any suggestions – should i continue trying to taper down and see if the lack of motivation and bulimia goes away with continued reduction of topamax? or just resign myself to controlling the bulimia with topamax but putting up with the side effects? we are all going to die anyway and i want a happy life. I’m happier lying around but not being sick, than if i got to do loads of stuff while being sick. i hope this makes sense, thanks so much. I’m now a single parent and would just love my life back

    Janet

    1. Dear Janet,

      I was very sad reading your life story and how much you must have suffered over the years from a young age. It saddens me that the professionals consider bulimia and eating disorder a “mental issue” when it is not. It is a hormonal issue combined with abuse and stress–I would say PTSD is likely. I don’t see how any of these conditions would respond to a mind altering drug that works for seizures! No way I can explain that.

      Indeed, Topamax was originally created for weight loss and at the time you were prescribed it, perhaps it was used for that–the intention may have been a good one. Unfortunately one should not put a brain modifying drug into someone to modify weight… it just doesn’t add up. In any case, that part is spilled milk. So let’s get to your current health problem that we need to look straight into its face.

      First, you must know that all weight issues are caused by the recommendations of the “health experts” who set up the guidelines in the 1960s, which with very minimal changes still stand today. The irony is that the health paradigm they created was to prevent heart disease but they are using it for weight loss since it clearly failed the cause and heart disease is unchanged. However, it not only doesn’t work for weight loss, it causes weight gain. So the problem is not with you but with what you have been told.

      Now your self consciousness comes from the fact that what you see in the mirror is not what you actually are. This is not an illness but a brain condition in which one region of your brain is not producing its neurotransmitters (hormones but they only stay within the brain) properly. Therefore what you see in the mirror is not what you are, which is not something you can control. I tested this once with a friend. I stood next to her in the gym and she was to look at my body and then her. I was much fatter than she was (I was not fat but she was skin and bones) and she could not see that. So the image was specific to her! That means it is likely only specific to you. I even had a tape to measure and though she was much smaller with tape than I was, her mind was not able to comprehend that.

      So there are couple of things you need to understand and revise:

      1) You need to learn and apply the proper dietary guidelines for weight loss and not the current dietary guidelines, created and failed heart health, applied for weight loss—more on that in a minute
      2) Weight of a person is very subjective. What is overweight for you may be thin for someone else. You need to accept that there is no such as an ideal weight for anyone.
      3) Topamax is a drug that reduces your brain’s capacity and puts you on the road toward dementia. It causes permanent damage-as you have read in the article. Is your weight more important than a brain damage that is irreversible?

      Once you tackle some of these problems, you may find your mind can rest a bit and you can let go of your weight question.

      So let’s talk about the weight loss paradigm. Since the 1960s the ideal weight loss recommendation was as follows:

      1. eat less
      2. exercise more
      3. calories in = calories out
      4. eat high amounts of healthy grains (like cereals, whole grain bread, etc.,)
      5. eat tons of fruits and vegetables—nearly at the level of a vegetarian
      6. eat very little fat and mostly margarine.
      7. Drink lots of fruits juices
      8. Drink only low fat anything—skim milk if possible
      9. Avoid eggs and meats, only eat a bit of fish every now and then

      Now all of this turned out to make over 50% of the US population obese and are blessed with metabolic syndrome. It is not their fault, they were misled. We are also surrounded by sugary stuff everywhere we look.

      Sugar is more addictive than cocaine or heroin. Grain releases morphine and is more addictive than sugar. Eating any refined carbohydrates turns to instant glucose in the body. Sugar substitutes cause hunger and obesity and lead to diabetes mellitus. I could go on and on with all the trouble we have. I only want to add one more thing: the human brain is made of fat and cholesterol—not possible to maintain healthy without eating animal fat and cholesterol.

      So you need to refocus your diet:

      1. Stop all sugars, be is white, brown powder, liquid, whatever, natural or not all sugar must be stopped The stuff is so addictive that it will be VERY challenging but your life is more important. I have been completely without any sugar for 2 years and have the best time of my life now. Was it hard? Sure. But I am a tough person and when I make a decision, I made a decision. You need to do the same.
      2. Stop all grains. You find an article here on what grains are: https://www.hormonesmatter.com/evil-grains-gluten-free-grain-free/ You need to stop and you will not see any changes for several months! Don’t expect to see changes before 2-6 months. Grains ruin your intestinal absorption process. The recovery means cell replacement. That takes time! Don’t ever cheat because the clock gets rewound to the first moment again!
      3. Stop all juices, smoothies, shakes, nut milk, etc., because they have no fiber. Without fiber they become pure glucose or fructose or both and both of those become fat that deposit as fat. Fat in the body is made from carbohydrates (both glucose and fructose) and not from fat!
      4. Stop all sodas—drink only water and whole milk (not low fat)
      5. Start eating whole foods that you prepare—no prepared boxed food stuff.
      6. Start reducing your high sugar fruits and veggies to minimum if any. Your daily carbohydrates total (net carbs = total carbs – fiber) need to be between 50-70 grams a day for weight loss.
      7. Increase healthy fats: butter, animal fats like bacon dripping, duck fat, pork and beef rendered fats (not the typical kinds in grocery store since they are hydrogenated fake like margarine).
      8. Calories in = calories metabolized and burned giving off valuable energy. That means you need to maximize “nutrition density” and not quantity. Nutrition dense foods are those that provide you the most nutrition with the smallest quantity eaten. For example, an egg is THE most nutritional dense food you can have. It has all of the fatty acid, amino acids, even omega 3 and other minerals and vitamin—including vitamin. You just cannot find a better food than an egg. Another is whole milk! You know the advertisement on TV about a glass of milk being a meal on its own? It is true. Have a glass of milk for lunch one day!

      Now to tackle the medicine issue. Given that Topamax is for seizures (and even then, it really doesn’t work alone but only as a secondary medicine), and because it causes permanent brain damage, it will be high time for you to get off that. However, you need to get your dietary plan in line first and make sure you can follow. The hardest thing is the cheating part. Don’t ever have a cheat day!! You are only cheating yourself. I recommend you look into a ketogenic or a LCHF (low carbs high fat), or even a ZC (zero carbs) diet plan. Lots on Facebook. Join a group and learn. Although my ketogenic group is not for weight loss but for migraines (we use science rather than fad), you are welcome to join.

      After you start seeing in your body and start feeling better, coming off the 20 mg dose will be easy. You should reduce slowly, as you have done before.

      Hope this helps!

      Hugs,
      Angela

      1. Angela
        It has really touched me that you have taken the time to care and reply to me, you are such a star, I really am thankful. It has given me the motivation I need to do what I need to do to be well and get off this dreaded drug.
        The past 2 years I have done some of this research and so I have stopped all low fat stuff, i have full fat butter, milk, yoghurt etc. But unfortunately sugar is the problem, like you say, it can be very addictive. I totally get that to control migraines and other illnesses this ketogenic diet plan is needed, and i agree that it would be very beneficial for me, however i have worked very hard not to have good and bad lists of food, and not to cut any food group out of my diet completely. I do think i need to cut out sugar unless its a special occasion, but i honestly don’t think i could cut the grains out – when i do cheat the effects would be disastrous, as i would be in a cycle of eating clean and cheating, which is worse for my body . i think the best i could do is cutting out sugar and cutting down on grains, but still being allowed them if i really wanted them. (when I’m not allowed something it does something psychological to me so that i want it and in the end will binge on it, whereas if all things are permissible I can handle cutting them down better) i know this might not make sense, but i need to have balance – if i knew i could follow the diet well there would be no problem, but i have a history of failing with these plans, even with a high fat diet. Does this make sense? Today I’m going to start, and cut out sugar and cut down on grains – i feel so stupid, because i knew some of this stuff but i don’t apply what i know to be good, i keep falling into the same old patterns. i need to start applying myself, and hopefully in a few months ill be off this drug and getting my life back. thank you so much for giving me the motivation i needed especially to start the new year with some hope. and Happy New Year to you :):)

        1. Janet,

          I am very happy that I could motivate you! 🙂 In some way I understand what you detail about “removing food groups” is not helpful for your recovery. Unfortunately I cannot relate to that since I don’t have the same condition as you but we each are our own best doctors! So you do the way you think it is best for you.

          A balanced diet with your own controls, set up knowing what is harmful and what is not, may be all you need to establish the best and healthiest life for yourself. I think the key is in the knowing aspect. You would be amazed at how many people (including registered nurses!) don’t know that vegetables are carbs. Your understanding is way ahead of most doctors I have come across as well so you are on the right track!

          I wish you the best: strength, control, full knowledge, support from your loved ones, and health for your New Year’s success!

          Please keep us updated and feel free to ask as you go!

          Happy New Year,
          Angela

          1. Hi Angela

            thank you for your reply and well wishes! I had decreased my last pill in december to 3/4 of a pill. I didn’t notice that many emotional side effects until the last couple of weeks, where I have been crying, upset and extremely depressed and unmotivated. From the last time I emailed you I also cut down on my sugar, and I do have to say I feel less anxious. Im not sure how much of this emotional reaction is to do with the topaz withdrawal, the sugar withdrawal and other stress factors in my life (which there are a lot of atm). At the minute Im not sure whether to continue the process or not (of topamax withdrawal) Part of me is thinking I should just continue the low sugar diet, but bring topamax back up to 25 mg and remain there long term – I just need stability and don’t think I can push through much longer. Or maybe I should just push through another couple of weeks and see if there is a change? I am worried though, that because I’ve been on topamax very long term, my brain now needs it and without it i will just feel depressed. Im not sure what way to proceed! thanks for listening

            1. Hi Janet,

              Sorry for the late response but this has been a running-around day. I am glad you cut down on sugar–indeed, your anxiety was caused by that and also likely affected your emotion. Sugar is highly addictive so being upset, depressed, unmotivated, anxious, and angry too can all be the result of withdrawal. Most people who reduced Topamax didn’t have emotional changes so I suspect it is all related to your sugar changes. Changes in Topamax, if one has migraines and the electrolyte is not in homeostasis with proper balance of potassium, sodium, and water, can cause migraines but I so far have not heard anyone complain about emotional instability.

              If you have other stress factors in your life that could definitely add to that since the sugar withdrawal and external stress add to one giant stress. I can see that more than the Topamax withdrawal.

              I recommend that you actually quit sugar. Eating reduced sugar is not possible to sustain because of the addictive nature of it–I am not trying to say that it is a street drug (though sugar has been shown to be more addictive than cocaine or heroin and it activates the same reward center in the brain as those drugs do)–but it basically behaves like one.

              Just like a drug addict cannot reduce the drug without returning full force in a short time, so it is impossible to maintain a reduced sugar dose. It is only possible if you quit cold turkey. It is not easy but totally possible (I have not had a drop of sugar or sugar substitutes for 2 years and am loving life!). So quit sugar, increase your hydration (water, salt, potassium rich foods) and give it a lot more than 2 weeks. Topamax can cause major damage–I am seeing another post from someone who had major permanent damage from a single pill! I am just about to answer that. You can get permanent damage from Topamax and I must admit I know many of them in my migraine group!

              So try to avoid getting back on Topamax and try your best at repairing your diet. That is priority #1: that is your health!!! <3

              Hugs and good luck!
              Angela

              1. Angela,

                I hear what you are saying about quitting sugar. i really want to, but i am scared that quitting sugar and going back on it and binging from time to time on it, which is what i have done in the past and what i fear i am likely to do, will be worse than trying to maintain a low level of sugar – for example found in fruit, and the odd treat if I’m out at a event. I’m not sure that quitting it completely is realistic for me, but i will try. i will keep going at it and see how i get on. thank you for your reply, i really appreciate it

                1. Oh I forgot about the problem of binge eating! Sorry about that. Indeed, you need to choose your comfort zone Janet. When you are ready, you will know that you are ready. 🙂 So take it as your body tells you to and you will be just fine! <3

                  Hugs and enjoy your weekend,
                  Angela

          2. Hello my name is Daniel im 31 years old I took topamx When I was 19 one pill it almost killed me my vission went blood red about 30 minutes after taking it then I started having stomach convulshions I have severe IBS know and have had it scene I took the drug ive seen many doctors over the years I know have a lot of health issues cant stay focused blured vission anxiety problems bone disease depression mood swings i dont have a healthy sex life with my wife in the dark my eyes flutter alot and the list goes on do you think it it messed up the firing order in my brain thats the only thing I havent had checked out and is there any way to fix it I have fought this for so long im out of answers at this point I was healthy and loved my life before I took topamax know there isnt a day that goes by that im not in severe pain with my stomach and back any advice please

            1. Dear Daniel,

              I am so sorry to read what happened to you–quite scary actually! I agree with you that there is a chance that you have very mild seizures. Have you been tested by EEG? It is a cap they put on your head and they can watch for a period of time–usually 30 minutes or more–either while you rest or active or both. They also have you look at a light–I suppose to trigger a seizure if you have one. I went through this test to exclude seizures when I went for migraine diagnosis. There is always a way to fix everything but it likely will require a lot of commitment on your part.

              First, please ask for an EEG test to exclude that you have seizures. This is important, because if you do, you need to know what kind. It is starting to be a well-understood practice to use the ketogenic diet for seizure control. For children with seizures, after two years of ketogenic diet at the therapeutic level, their seizures are fully controlled and they are considered to be cured. For adults they use the Modified Atkins Diet (MAD) that is very similar to strict ketogenic only the ratio of fat to carbs is a bit milder and seems to work very well for seizures.

              The benefit of these diets (they both lead to “fat burning” diets) is that your brain, which is 60% fat and over 25% of all your body cholesterol is in your head forming the white matter, which insulates your brain cells to protect them from misfiring and voltage leaks, has a chance to recover by “refueling” with fat. Glucose is the enemy of white matter and the ketogenic and the MAD diets both remove glucose from your body. Once you are on this diet, you can then practice intermittent fasting with amazing health effects.

              It is important that you are not taking any brain medicine when you start the ketogenic diet. Some medicines block ketones and others can end up working as agonists (achieving the exact opposite) of what they were meant to do because they were designed to work in a carbohydrate metabolic body and not a ketone fat burning body, which behaves very differently.

              Let me know how your EEG goes and what they recommend!

              Best wishes for your recovery!
              Angela

  24. I have what I believe is a unique problem and I wonder if the damage is permanent or if I even have a seizure that can be measured with brain electrodes or equipment used to detect epileptic seizures at this point. I had been taking sertraline for 10+ years then developed migraines (later determined migraines caused by sertraline) and was prescribed Topomax by nuero doc and started feeling jittery and having night sweats, burning sensation in jugular veins, salivary gland swelling, so then primary doc prescribed Gabapentin. 2 1/2 months after taking these 3 drugs together I collapsed to the floor in a slow motion way where my speech was slowed and muscles “melted” becoming useless and in a few seconds I couldn’t move or speak for a longbout 30 min. (Serotonin toxicity?) Sweating then shivering with cold and eyes rolling side to side (and many other symptoms) it appeared to be a seizure (undocumented) petit mal type. I was spontaneously with no apparent trigger having these “seizures” about 4-5 times a month but daily had burning sensations in jugular veins in sides of neck and fullness/thickness sensation in head and salivary gland swelling among many other symptoms. Exercise sometimes seemed to worsen these sensations and at times bring on a “seizure” or just at random no rhyme or reason I would collapse. I revisited the nuero doc that prescribed me topomax and he tested me for any kind of brain seizure activity and none showed up in tests so he hospitalized me for three days stating I needed to be stabilized because I am must be stressed (which I disagreed with!) and he believed that must be why I have these continual episodes. The hospitalist said to immediately stop taking all 3 drugs which I stupidly did. To this day I still have episodes (about 1x a month) and with help from lymph drainage therapist and a licensed acupuncturist my variety of symptoms have lessoned greatly such as the neck vein burning and salivary gland swelling are almost gone and gut discomfort and body temperature is more stable etc. However as time goes on and experiences teach me I am seeing a definite correlation between physical body stress (exercise versus not exercising and recently having pneumonia) and having episodes of body collapse to ground muscles useless unable to move and lack of speech ability eyes rolling side to side for 20-30 min (I can always hear what people are saying just can’t respond and brain acts slow to respond or think). After reading your article about topomax I feel I have been damaged by the short time I was on it in combination with experiencing serotonin toxicity and suddenly stopping these meds. I have seen 2 incompetent nuero docs that just call me mental but I know I am not and I know what I felt right after taking Tomax!!!! Since I had those 3 drugs together I have never felt the same. I haven’t taken any meds whatsoever since the incompetent hospitalist told me to quit those 3 drugs cold turkey. I actually should never have been on sertraline for so long either. That was making me sick with migraines also and I feel better without it! What do you think about all I have said and do you have any opinions? Recommendations? I really want to hear what you have to say. Thankyou in advance for responding.

    1. Hi Janice,

      I am sorry to hear of your experience. Sertraline is an SSRI that can cause a serotonin toxicity on its own but given how long you took it and had no such reaction, the problem actually lays elsewhere. I try to simplify the explanation since it is quite complex. But envision the following situation: SSRIs force the brain cells to manufacture serotonin 24/7 constantly by blocking the “overfill” sensor of the cell (this is the “reuptake inhibitor” in the name. However, as the cells make lots of serotonin, they need to get rid of that load before they can start making more.

      To get rid of the load of serotonin they had to make as a result of the Sertraline, they need what is called the voltage gated calcium channels to work since that is a high voltage channel whose job is to kick the serotonin (and other neurotransmitters made by other neurons) out of the cell. Topamax is a voltage gated calcium channel blocker.

      I think you can see the conflict. On the one had your cells are told to produce a lot of serotonin and on the other they cannot release them. This causes a ton of side effects. In addition, you were put on Gabapentin, which is a therapeutic duplication with Topamax since they both do the same thing!!! Not sure why drug interaction charts don’t pick up the duplication. So rather than serotonin syndrome, you likely experienced the total sudden block of all serotonin your body was used to getting by large loads.

      Any doctor labeling you mental must be reported to the board of medicine! That is totally unacceptable! I know that migraineurs often are labeled mentally ill but that is totally wrong. Migraine is simply a problem of not enough energy (in terms of voltage power) to the brain–this means medicines also will not solve migraine; they reduce the voltage capacity further.

      Please read the comment I just wrote to Francisca, in which I explained some of the genetic mutations and what needs to be done to prevent migraines without any medicines–and that is completely possible. You are talking to a migraineur who has not taken any medicines for 6 years and has been migraine free (with 1-2 sneaking in as part of my experimenting to see if something causes a migraine and if so can I reverse it without medicines).

      In terms of permanent damage: age and damage dependent. There are many people in my migraine group who were taking drugs like you who and who recovered and others did not recover. In that case we take a more drastic step and head on to the ketogenic diet, which does repair the brain. However, I recommend you join the standard migraine group first since the ketogenic diet is not very easy for many people.

      Hugs,
      Angela

  25. Thank you, Angela, for posting all this information about Topiramate. I’m a migraneur with auras and, about two years ago I had a retinal stroke due to a migrane and lost part of my sight. Since then, doctors have prescrived me different medications for my headaches and auras, one of them: Topiramate. I didn’t realize immediately, but I did noticed the that my short term memory has been damaged, I used to have a such a good one! Now I always doubt about what I’ve thought, said, heard, or saw; it’s frustraiting. Well, at first I thought that maybe so many migraine attacks did something to my brain (though doctors said it doesn’t work that way) so, I continued thinking in causes until I thought about this pill I take and started to researching. I’ll go to my doctor anyway but I just want to know about the damage, I took 25mg for about 10 months and then for 8 months and so, 50mg. Is all this damage permanent? Am I going to recover my brain fuctions once I stop taking this medication? I’m worried.
    Thank you, really.

    1. Hi Francisca,

      Very sorry to hear what happened to you. Oddly enough someone just pushed an article under my nose a couple of days ago, which may be relevant to you–please click here to read that. Sometimes misdiagnosis can lead to major problems and this article may help (may not but worthy to read).

      Migraines do damage the brain. That is a hotly debated issue but it is well-known that migraineurs are at a higher risk for stroke, Alzheimer’s, and cognitive decline, in addition to seizures and Parkinson’s. I suspect the connection is that a migraineur has a few genetic mutations that prevent her from using glucose the right way so migraineurs are glucose sensitive. Glucose destroys the layer in the brain (white matter) that forms the myelin. Myelin is a substance made from cholesterol and fat that covers the voltage carrying part of the neurons (brain cells) so that voltage doesn’t leak. Since migraineurs cannot handle glucose well, and this layer is damaged by glucose and also a lot of voltage (migraineurs have more electrical actions in their brain than non-migraineurs), migraines can cause damage.

      Furthermore, migraineurs also have a genetic mutation of the voltage gated sodium/potassium channels and so glucose has a very easy time placing regions of the migraineur’s brain in refractory mode (a time when all gates are closed and nothing can move in or out of the cells). Preventing these by taking charge of your genetic mutations (not eating sweets at all, not eating grains and sweet fruits, increasing salt in your diet, etc.,) can prevent migraines and if you decide to actually do some brain repair, the ketogenic diet can do that.

      So you have options. In terms of recovery: it depends on your age and the depth of the damage. You can help your brain by doing what I wrote above and it may repair the damage but it is not sure since Topamax damages the proteins (voltage gate itself) and that can be permanent.

      I hope you will consider adjusting your lifestyle and perhaps join my migraine group. It is free and you get a ton of help.

      Hugs,
      Angela

  26. Dr. Stanton: I stumbled on this post by accident. Thank you for writing this. I’m on Dopamax for Epilepsy (JME) and in the first year of my PhD. Because of the rigours of my program and when classes start in the morning, I’ve had to go on a higher dose to control my seizures. Unfortunately, the drug has left me unable to talk properly most of the time. I feel like crying every day. It’s a joke because so many of my professors study epilepsy in some ways, including in calcium channels, but they have no clue how it affects the living human person when I try and tell them what I’m struggling with.

    1. Very sorry to hear this Dopey! I think that scientists are often too close to the problem they are trying to solve and look at things in isolation as if the solution could be applied in a vacuum. Unfortunately it doesn’t work that way in the body.

      Are you familiar with the ketogenic diet? Many children are placed on the ketogenic diet for seizure prevention. Adults as well only there have been fewer experiments with adults yet but it works equally well. Some medical institutions (such as Kaiser) have specific service for children (and for adults) for the ketogenic diet for seizure prevention. In children, after 2 years of strict ketogenic diet, the seizures disappear as the brain heals.

      It likely happens the same way in adults as well. The ketogenic diet is very high in fat, moerately low in protein and extremely low is carbohydrates (by this I mean vegetable carbohydrates as no others are alllowed). The brain is made from nearly all fat but for those with genetic mutations in some areas that are associated with glucose transport (such as migraineurs are and perhaps also people with seizures), the myelination of the neurons are damaged. Fat repairs myelin. Therefore, high animal fat diets help seizures (and migraines and many other conditions) because dietary fat appears to repair myelin.

      I recommend you ask around and look into applying the ketogenic diet. I am on the ketogenic diet for migraine prevention and must say that I have never had a better life before. For some people the ketogenic diet is a life saving nutritional style. I highly recommend you ask your doctor!

      I wish you much success!

      Hugs,
      Angela

      1. Dr. Stanton: My doctor already said no to the keto diet ages ago! I can’t last very long without drugs either. I’ve tried, either in rebellion or pure forgetfulness. One day gives me auras. The longest I went was a week and then it was the full tonic clonics that knocked me into the following week. The annoying things is Dopamax works the best in seizure prevention. It just also makes me dopey.

        As for scientists working in vacuums, I can’t disagree. Of course, they are not all like that, but there are some.

        1. Wow, your doctor said “no” to keto??? I wonder why? You can take your drugs while on keto and they taper you off only if they see improvement. But I cannot argue with your doctor and it is your decision, of course. You should do what is best for you.

          Hugs,
          Angela

  27. Thank you so much for writing this!! I have uncontrolled left temporal lobe epilepsy. I had brain surgery in Chicago in 2007, however due to possibility of aphasia, not all the targeted areas were able to be removed and therefore my seizures have never stopped. I was on 200mg 2xs per day of topamax for over 3 years. Those 3 years were the worse of my life!!! My vision, my moods, my hormones, rashes, severe and reoccurring low potassium and very rapid gum line cavities that can’t be fixed. I was a completely different person with no human emotions except fear, anger and complete physical and emotional exhaustion. I’ve lost my teeth, my hair and during the time I was on topamax, it seemed I had lost my mind. This is a very evil drug I begged and begged to be taken off of. The saddest part was, like the prior seizure meds I had been on, it also had a “honeymoon effect” helped the seizures for couple of months, only for them to return worse. In a way losing my insurance was a God send because I couldn’t get the topamax anymore and got off of it. Topamax has confirmed 100% I will not ever go back on seizure meds again. I can handle the 2-3 seizure per month far easier than meds like that!!! I do get very fearful when I get hurt or have clusters but my family and I know to be patient, get my sleep, reduce stress and eventually I’ll be ok. You are wonderful to tell people this!! Thanks again!!

    1. Wow Laura, I am speechless! What an amazing suffering. I feel very sorry for what you endured and glad that you quit that drug–not happy that you have no insurance but glad you are not on Topamax. You are very correct about saying “be patient, get my sleep, reduce stress and eventually I’ll be OK.” I would add to this: “and watch what I eat” since the food you eat can either harm you or benefit you. You also mentioned cluster headaches so this is something you want to consider: watch what you eat!

      In my research with migraineurs, also cluster headache, fibromyalgia, and chronic pain in general–and the new major syndrome of being floxed (from having taken quinolone antibiotics–this is a very small group since I had not much time yet), I find that what we “don’t” eat can actually cure.

      I am just about to write a blog on this (I did not want Thanksgiving to be ruined by my blog since it takes preparation in body and mind): we have learned to eat what we want and not what we need. Seizures, like other diseases, including Alzheimer’s, Parkinson’s, MS, and many others, are brain circuitry communication problems caused and that can be helped if not yet reversed or prevented that we know of.

      There are many things that can interrupt this communication and not all of those are under our control but we do have some that is under our full control: carbohydrates and fats.

      By carbohydrates I don’t mean just sugar but I mean all foods that contain high carbohydrates (this includes rice, pasta. bread, corn flour everything, potatoes, very sweet fruits like dates, blueberries, pineapples, watermelon, etc.,) all are high is glucose and fructose (starch, like in potatoes all becomes glucose). Glucose interrupts the communication signals in the brain. Stopping all natural or added sugar sweets (including fruits juices, cereal, raisins, prepared foods, canned foods, etc.,) can greatly improve communication of the neurons in your brain.

      Another element is fat: the brain is over 60% fat and over 35% of all cholesterol of your body is in your brain (the brain makes its own cholesterol). Your brain is made from fat! The white matter part of the brain (all cholesterol and fat) is THE most important part of the brain in terms of neuronal communication (particularly for seizures). It insulates the brain cell axons so that voltage doesn’t leak. Seizures are voltage leaks!

      So increase animal fats–eat for your brain health!

      Good luck to you! I hope you can prevent your seizures by eating for your brain!

      Hugs,
      Angela

      1. Thank you so much for all the information! It’s so odd, my daughter started the keto diet for weight loss and had great success. She’s lost 55lbs and feels great. She has been encouraging me to try it. However I admit I have a huge sugar/carb addiction. I drink 5-10 dr peppers per day. My neurologists have taken note of it and mentioned I should quit for weight loss but I never thought of my diet affecting my seizures. We will be getting insurance in 60 days so I’m going to try to get in with epilepsy clinic at UAB, I saw they do keto diet. However I became very ill when I tried the diet. I had headaches and very severe vomiting, I think perhaps so much fat and I no longer have a gallbladder. My father and I have done a genetic trial through UAB in the past so hopefully I can get in but I’m very apprehensive they won’t accept me as patient because I refuse to ever go back on seizure meds again. I will do the keto diet and anything else but I’ve been on so many drugs and none have worked. You are such a beacon of hope for those like me. Thank you so much!!!

        1. Hi Laura,

          I am sure you got so sick because you did not have the correct information. There is way too much wrong information out there about the ketogenic diet (even my dietitian who specializes in ketogenic diet is not aware of many of the things she has the worng information on) and all are incomplete. The ketogenic diet is not a weight loss diet–it coincidentally makes people drop weight because it is the true fat-burning metabolic process, so even without dieting you experience “fat loss”. The weight loss is coincidental.

          Gallbladder: I am on the ketogenic diet and have no gallbladder either. The gallbladder is bile storage only. One can train the liver to generate bile faster. I have no problems eating about 90% of my calories in fat at all, even without a gallbladder.

          The ketogenic diet originally was used well over 2000 years ago (in somewhat modified form from what we now call the ketogenic diet) against seizures and it is still used today primarily against seizures.

          Its role in our life is not weight loss but seizure control and as we are finding more and more out about it, it also benefits a host of other brain conditions. The reason why it works seems to elude the scientific community but it is obvious to me: glucose destroys myelin (insulation) around the axon (long voltage caring) part of the neuron (brain cell). Myelin is made from cholesterol and fat. In order for the brain to heal, both issues need to be addressed at once: remove the thing that damages myelin (sugar) and add the thing that repairs the myelin (fat and cholesterol).

          Your addiction to sugar is the norm–everyone is addicted without exception. Quitting sugar is hard but let me tell you that quitting sugar is nothing compared to quitting grains. Grains must be quit for the ketogenic diet as well. While sugar is “only” 8 times as addictive as cocaine or heroin, it is not food so ultimately we can survive without it. Grains on the other hand release morphine AND grains we consider as food (even though grains are not really human food). Thus giving up grains is much harder than sugar. I would start there if I were to start down on the ketogenic path now.

          I understand that it is much easier to rely upon a medicine and continue the very thing that causes the problem for which you take the medicine. I see this all the time: type 2 diabetics eat a huge slice of cake and then shoot up with insulin, thinking they are OK. They forget to look to the future: amputated limbs, darkened really hard “rhino” skin all over, very painful diabetic neuralgia (yet more drugs) and complete crippling condition for the sake of a few moments of sugar happiness.

          Is it worth it long term? It is your decision. I made my decision many years ago and never looked back!

          Hugs,
          Angela

          1. Thank you so much!! I’m going to do what you suggested and begin with grains. I’m tired of having seizures and trying to control them with meds that don’t work!! I appreciate your wisdom and advice so much!! I haven’t driven a car in over 9yrs, haven’t been able to go to store alone, my children have seen their mom have seizure after seizure, injury after injury, they have had to rush me to er for stitches, broken bones and more. Enough is enough! I must and will do this. I can’t begin to express how grateful I am to have come across your writings!! It’s sad and embarrassing to say but I never knew any of this!

            1. I am so glad I inspired you Laura! I am a true believer (and follower) of what I preach and can see the benefits it has so far given to me in my health and quality of life! I hope you will find the same and will have a long and happy (and healthy AND medicine free) life! Your children will love you and support you in your changes! You are doing this for them! <3 Give a big hug to them for me and I wish I could give you a hug myself! (Cyber-hug!)

              Hugs,
              Angela

  28. So glad I found this! I’m getting off this crap. I have been prescribed topamax 25mg morning 25mg night for weight loss. I dropped 10lbs the first month. Then nothing since. I took it religiously without fail the first month. Then I started forgetting. Now I take it once a day every few days. I just forget to take it. I went three days without it then took my one pill yesterday. It has not had ANY undesired side effects but I SURE do not want it to start! This is the third month that I’ve been on it and now I didn’t get a menstrual cycle. I’ve been 100% regular LIKE CLOCKWORK for 10 years! I am NOT pregnant nor can I be. With research I see that this is probably due to the topiramate. I can NOT run around without a cycle and not knowing my fertile days (ovulation etc). I am 37 and do not wish to have any more children. It isn’t worth it to me to continue. How do I taper off this junk and do you think I’ll have lasting effects? I’ve never had a seizure or migraine. It did completely alter my taste and make all soda FLAT and chocolate taste like wax etc.

    1. Dear Kimberly,

      I am very sorry to hear that Topiramate is starting to mess with your body as well. It does have many side effects but most show up later as you continue taking it. Glad you decided to stop it since you got your first sign (very fast actually) that it is affecting your body in a negative way. The altered taste sensation is also related to this drug. It shuts down the most vital communication channels in your brain that affects every organ and everything you do or think and all that is on auto pilot.

      Since the dose you are taking is very small (most people take 200-400 mg twice daily!) and since you have no seizures or migraine, your reduction is likely to be pretty easy. At this low dose I would recommend you follow your doctor’s instructions, which is really quick reduction.

      If you find that the fast reduction is uncomfortable or rather chose a slower one, please print my recommended schedule and have your doctor approve this slower reduction plan. It will require refills for a longer. I so far found this reduction speed to be very effective for all people, even those coming off of very large doses. It seems to be safer and more comfortable than the manufacturer’s recommended reduction speed because it is more gradual so your body can adjust.

      In terms of lasting effects: I don’t think you have taken it long enough (or at least I hope that having taken it only for a few months is too short) to have permanent damage. With that said and done, there may be some temporary loss of your taste buds and perhaps your period will take some time to adjust back to normal but it should recover. I am glad you discovered the damage fast enough to not become permanently hurt by this drug.

      Best wishes to you!
      Angela

      1. Thank you for your reply. I will check out your schedule and the fast recommendation. Yes fortunately is very low dose and very short time-frame. My doctor is really good about listening to the patient and their wishes to change or cease medication. In so glad I found this site. My mom was on it for 3 days and felt terrible. I sent this link and she’s gonna tell her doctor she no longer wants to take it (weight loss).

        1. Wonderful Kimberly. Since both you and your mom are going after weight loss, let me ask: have you tried the LCHF (low carbohydrate high fat) diet? It requires a lifestyle change but it works extremely well and no medicines. Best of all you will never feel hungry while you are dropping weight (drops fat not muscle or water). I recommend you look into that! Perhaps your doctor is familiar with that–please ask. It is pretty new but your doctor may be keeping up with the times.

          Best wishes to you and your mom,
          Angela

  29. I’ve been on Topimax 100mg for about 4-5 years for OCD. My issues with OCD have definitely subsided due to a change in occupation, environment, regular exercise, and livIng more healthy in general.
    Over the last two months I worked with my doctor on a plan to taper off as I would like to be med free. I tapered 25mg every 2+ weeks until I was completely clean as of last Monday (10 days ago). Over the past 48 hours I have had the most intense migraines of my life, my body is aching and my head and body are on fire. I also feel I am on the verge of panic attacks (which I used to have), but have been on Venlafaxine ER for about 6 years which has eliminated those issues. My goal is to only use one maintenance med, and my doctor has approved of this plan.

    SO, Is this withdrawal? How long should it take to pass? Why didn’t I have any symptoms for 10 days and then it hit me like a rock, even though I tapered? My fever is running 101 degrees tonight and I can barely get out of bed. I really cannot tell if I am coming down with a flu-like illness or this is extreme withdrawal.
    Please advise, as your in-depth knowledge is greatly appreciated.
    I need some HELP and don’t want to restart the poison.

    1. Hi Dan,

      Very sorry to hear how you were hit with migraines and anxiety attacks. These are very typical after coming off of Topamax if there are no measures taken to repair the brain–the reason why you started to take Topamax the first place. Why they did not happen the first week: the “plugs” Topamax uses (it is an inhibitor of voltage gated calcium channels and it plugs the channel to inhibit them from working) came out of the voltage gated calcium channels and since your neurons were full with neurotransmitters that they could not release (the voltage gated calcium channels are high voltage to release neurotransmitters), they were all released the first week so your brain was fine.

      However, after the week was up and all your neurotransmitters were used up, NOW the brain has to make the neurons work again like nothing happened. Except the brain is very adaptive in forgetting how to do things and it is much harder for it to re-learn what to do. So at the moment your neurons are not producing and/or not releasing neurotransmitters because they forgot how to. They will (most likely though Topamax can cause permanent damage). If you are young, your brain will recover fast but if you are older it will take a longer time to recover and recovery may be limited.

      So technically this is not withdrawal; it is the “reformalution” of your brain, which is harder. The fever is likely unrelated–perhaps the flu. Both the flu and migraines respond amazingly well to salty hot broth so have some. Avoid all sweets!!! If you can drink milk, have some whole milk. You need to reset your electrolyte homeostasis and milk is the perfect electrolyte. Hydrate (salt and water) to increase cell health and speed up your recovery.

      Anxiety is a classical migraine prodrome and is increased by the consumption of carbohydrates so avoid! On the other hand, consuming fat (like cheese, whole milk, etc.,) has a soothing effect on anxiety.

      I wish you a speedy recovery!

      Angela

  30. Hi! I got prescribed Trokendi for weight loss along with low carb lifestyle. I’m noticing I get so angry at times and it happens so quickly. I’m more anxious than usual. I live a busy life with working Full Time with a 12 year old and 7 year old, but it still seems different. Wondering if it could be the Trokendi. I’m on 100mg daily. I’m also on Cymbalta. Wish I would have never started it either. I get psychotic if I miss 2 pills!!!

    1. Hi Jennifer,

      Very sorry to hear your troubles–to top it off, Trokendi is the time release version of Topamax so to reduce that you actually have to switch to Topamax first. I also checked if there is an interaction between Trokendi and Cymbalta since Cymbalta is a Serotonin-Norepinephrine reuptake inhibitor (SNRI) that forces the creation of extra serotonin and extra norepinephrine by your neurons, Topamax (or Trokendi in your case) actually blocks the release of those neurotransmitters so the two actually interact in a bad way. Drugs.com has a drug interaction checker and it caught some of the problems but not all:

      “Interactions between your selected drugs
      topiramate duloxetine
      Applies to: Trokendi XR (topiramate), Cymbalta (duloxetine)

      Using topiramate together with Duloxetine may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.”

      While I understand that you would like to lose weight and Topamax (Trokendi) is originally a weight loss medicine, and you may lose weight (I know people who gained weight!) but the price you pay is high. There are also other ways to lose weight–I discuss that at the end.

      It is not possible for you to stop either medicine cold turkey. Not because you are not strong enough to do so (both are addictive-like) but because you may end up with major seizures if you just quit Trokendi and major mania if you just quit Cymbalta. Here is why in short:

      Cymbalta plugs up the “reuptake” which is jargon for “overfill hole.” So your cells are forced to make these two hormones 24/7 no matter what because the overflow hole is plugged and the cells have no idea they already flooded your brain; they keep on going. This can cause major trouble when trying to stop the medicine because your cells then have 2 things suddenly happen to them:

      1) They need to re-learn to regulate based on the reuptake that was plugged and is not anymore but in the body wasted energy causing elements are destroyed and thus your cells may not know how to listen to the reuptake anymore. This causes “flashbacks” or “brain zaps” in many people. Some people end up with permanent damage from this because of the 2nd point ==>

      2) The reuptake (overflow hole) is a protein channel with polarity in a certain shape and size so that only certain neurotransmitters fit through. The inhibiting plug used in Cymbalta and similar drugs is bigger than the neurotransmitters in order to not go through the overflow hole but fill it up! So they change the shape of the protein, the channel opening and with that they also change the polarity. Thus the channel “hole” may no longer be able to function as an overflow hole or “reuptake” for the neuron. This damage is permanent and irreversible.

      Although the manufacturers of this and all similar drugs (SSRIs as well and others) are really good at not discussing this issue and the FDA is amazingly good at not knowing about what it is not told, it would be VERY hard to find a neuroscientists, a biologist, or a biochemist who would not know and agree to what I just wrote down.

      Now in terms of Trokendi: it plugs up the voltage gated calcium channels similarly as the reuptake inhibitor in Cymbalta. The plug must always be different in size from the actual neurotransmitters or minerals in this case (calcium) going through in order to block it. All voltage gated channels are shape, size, and polarity sensitive. So every time any plug is used, the plugs destroy the channel protein size and shape and also polarity. So if you just stop taking it, (calcium channels are high voltage channels) all of a sudden you will be hit with high voltage activity in the brain because you have a lot of neurotransmitters piled up that the cell needs to get rid of. This may end up causing seizures. You definitely don’t want to go that route.

      If you want to quit any of these medicines, please ask for a VERY slow reduction. Most doctors I so far bumped into through my migraine group members (often on these drugs as they join) find their doctors put them on an extremely quick reduction (one member yesterday just told me that her doctor said “oh just stop taking it, nothing will happen.” They are quite clueless. So I recommend that you check your doctor’s presence first in this database (use only the last name since they often enter their first name differently!). If your doctor is in there and any money, lunches, or research money was accepted by him or her, please switch doctors before you ask for a reduction schedule.

      Now in terms of dieting: I am glad you were told low carbs but you can take that a step further to have all the weight come off of you in a healthy way and not like a yo-yo.

      There is typical low carbs diet (it works short term) and then there is the correct one called “low carbs high fat” (LCHF) diet (work short and long term and reverses metabolic problems). There are many literature on this out there but just to list the key points since some are confusing:

      1) stop all sugar types (including honey) and all sugar substitutes (including Stevia and all “natural” sweeteners)
      2) stop all refined carbohydrates (rice, pasta, bread, pizza, croissants, canned food, boxed prepared food, etc.,)
      3) increase healthy fats: this is a point of argument among dietitians but since I am not a dietitian, I can tell you what healthy fats really are: animal fats. So switch off all cooking oil to butter, bacon dripping, real animal fat like lard (not Crisco!!! that is all fake), beef tallow, duck fat, etc. You can get these on amazon or organic stores–they are not cheap but a little goes a long way.
      4) use olive oil only cold. Never cook with olive or other oils because they change their chemical form and become goo in your body
      5) do not believe in the coconut oil fad. Coconut oil is the most calorie dense oil that burns as ketones so unless you are on the ketogenic diet, your body cannot use it for energy at all so it either causes GI problems (it does for most people) and/or deposits as fat. Coconut oil is the most misunderstood oil by everyone and it is a new fad but a bad one.
      6) reduce those “healthy” carbohydrates that are very high in fructose–fructose becomes triglycerides and that you don’t want (cholesterol is made from fructose and a bit of glucose and not fat). So stop eating all tropical fruits, also water melon, peaches, etc. An apple has as much sugar (in the form of glucose and fructose) as a slice of cheese cake… so watch what fruits you eat! A banana is about 10 teaspoons of sugar, a date (a single date) is equal to 1.25 teaspoon of sugar or more depending on type.
      7) stop all grains. This is the hardest one (grains release morphine in the brain and are extremely addictive). Read here which ones are grains since the names are confusing. Do not get on gluten free food because they turn into more glucose than regular grain so unhealthier than grain!
      8) Always buy whole foods with full fat and no sugar or sugar substitutes (like buy whole milk instead of 2% or other reduced fat milk). Don’t drink any juices (even if it is your own home grown fruit or vegetable), don’t have any smoothies or shakes either.

      Doing all this will help you get rid of your unwanted weight and as you increase fat, you will find you will not be hungry either so this is the best way to get rid of escess weight and feel full of energy and the same time–make sure you drink plenty of water and eat plenty of salt for proper hydration.

      This was a long message; I hope it will be of help–as well as help others who may read this post.

      Angela

    2. I take 150mg of topamirate (topamax) a day along with 40mg of vyvanse and I have never had any issues with it. Every woman’s body takes to meds differently. It is a miracle drug for my borderline personality disorder.

      1. Adrianna,

        While every person is different, the drug works the same way for ever person–if it worked differently, the FDA could never approve anything. Glad it is working for you and I hope it continues without any side effects.

        Cheers,
        Angela

    3. I have been using Topamax 150mg 2x a day for the last 3 years to treat my type 1 bipolar and for the first time in my adult life I feel balanced and am leading a normal life.

      I rode the medicine rollercoaster for many moons until I did some research and came across this topamax as a possible solution. I had already tried everything else and was reaching a weight I had never been before, so what did I have to lose? Ha love the pun.
      So I suggested it to my provider and he agreed. I lost 50lbs in a years time and the only side effect I suffer is loss of appetite and dry mouth.

      I am proof that topamax does work for my bipolar I have had for 30yrs and so far going into the 4th year it is still working well. I hope the FDA gets on board and sees it benifit because if you have state medical it is not covered.

      1. Hi April,

        Glad that Topamax is working for you. Very sorry that state medical is not covering it–perhaps the generic is covered: Topiramate. There is a high likelihood that the reason why they don’t cover it is because it is black-boxed; meaning it causes permanent damage to the brain. No doubt that it works for some but while it works, in the background without your knowledge, it harms your brain. Enjoy the benefits as long as it helps you.

        Best wishes,
        Angela

  31. I have been on Topamax for 4 years now for both epilepsy and migraines and it has done the trick for me. I have maybe 2-3 migraines every 6 months in which I have to take Imatrex. I have had no side effects besides weight lost but I do not mind that at all! Topamax has been the only seizure medicine that has worked for me. I got diagnosed at 16.

  32. Hi Angela, I have been on 75mg Topamax for years now, I’m now 46 and have had migraines since I was about 5years old. Topamax helps but I still get the clusters and the aura migraines. I loose concentration and I am always cold. I would love to get off the topamax but I’m afraid if I do I will not be able to even function again, my migraines will come back with force. They have always ruled my life, I feel like the topamax gives me a few days peace at least. What would be my alternative?

    1. Hi Jo,

      I totally understand your being scared. In my migraine group thousands of migraineurs had the same concern and most already were able to come off Topamax (with very slow reduction and doctor approval) but they reduced and stopped only after they were able to maintain a migraine free life on the Stanton Migraine Protocol®. For some the change is very slow and for others very fast. The problem with Topamax is that if you have been on it for a long time, there are permanent changes in your brain and some of the adverse effects of the medicine may remain for life–it may not but it cannot be predicted.

      Feeling always cold tells me that your body thermal control center is the one affected (this is the most common), which may or may not improve. We can certainly take care of the migraines–that is actually easy believe it or not. Using the protocol already several thousand migraineurs are migraine free and have returned to work and have fun–applying the rules of the protocol are for life but it becomes very intuitive and natural. 🙂 Migraines need not rule your life (I am a fellow migraineur and had migraines for over 30 years so I know where you are coming from). Join the group and give what we do a try while you remain on Topamax to see.

      Looking forward to seeing you there!
      Angela

    2. I came across this site while trying to research possible lasting effects of Topamax. I took it for years on and off for migraine prevention. I was a medical school student and dropped out of the program because of chronic daily migraines. Topamax helped a bit but the side effected of dulling my brain function left me unable to function as a physician in training.

      I now get Botox injections every 3 months because I had reached the end of the road with oral preventatives. Botox has helped more than the Orals for me and none of the side effects. I do worry about what we don’t know with long term use of THAT much Botox, but I’m working on my overall health in hopes of not needing it forever.

      Everyone’s migraine is different, so I won’t pretend that what works for me will work for everyone, but I would talk to a headache trained neurologist about weaning from Topamax, perhaps with the involvement of a psychiatrist, and trying Botox.

      Also, if you’re open to it, see out a functional medicine provider. They are trained to get to the root of a problem and address it rather than throw pills at you to resolve a symptom. We live in a world that is not very kind to our bodies. By eliminating foods you don’t even realize you’re sensitive to or uncovering deficiencies or imbalances in your body you can significantly reduce frequency and severity.

      Wishing you the best.

      1. Dear Ashley,

        I am glad you switched away from Topamax but you exchanged it with something equally (if not more so) dangerous. Botox is now known to leak into other organs, such as the brain and also eyes and can (potentially) cause brain damage as well. There are additional side effects as well.

        While everyone’s migraine is indeed different, you may be surprised to learn that the cause of all is the same. This came as a surprise to me as well until I understood more about the anatomy of migraines and several other factors, such as how much lack of voltage is responsible for the cortical depression because of a mutation in voltage pumps and that migraineurs have a genetic mutation (they have several) that, for example, interferes with proper glucose use and also because migraineurs tend to develop insulin resistance partly because of the medicines and partly because of genetic factors. Migraineurs are glucose intolerant.

        There are very simple solutions to migraine prevention and treatment that are without any medicines! There are two methods. One you can find information about here and the other here. I highly recommend you look into these (either or both). The first group has already been used for over two years by over 4000 migraineurs (ex-migraineurs) who now are off all medicines and are migraine free. It is not about avoiding the foods that trigger a migraine but to understand why they trigger and then cancel that trigger the proper way so you can still eat you favorite foods–except for those foods that migraineurs are genetically predisposed to not be able to handle, such as sugar.

        Best wishes,
        Angela

  33. Hi Angela

    Interesting piece.I have been on 200mg Topamax (100mg x 2 daily) having suddenly and without reason developed debilitating migraines that last up to 78hrs and recur up to 18 times a month. I am 46. This began in 2013. Since Topamax I am migraine free but for one or two every 6 months of much lower severity.
    So yes Topamax has let me keep my career, and my life.
    As for side effects. Well that’s an interesting trade off. What I have now is topirimate induced nephrolithiasis as a result of metabolic acidosis.

    Kidney Stones are the most painful things I’ve ever had.

    But curiously enough, easier to manage that my Migraines which were so debilitating.

    So, it’s a Faustian bargain.

    1. Dear JP,

      Sorry to hear about your kidney stones. They may or may not be related to Topamax. My question would be about your metabolic acidosis–is it by choice of the ketogenic diet or the result of diabetes? If it is the result of diabetes, that would be outside of the field of my expertise but if you are on a ketogenic level acidosis, which is a therapeutic decision for seizures or other health conditions, or a nutritional choice for milder conditions (I am on the ketogenic diet myself), the kidney stones are preventable only literature is very much all over the place on the ketogenic diet. If this is applicable to you (that you are on the ketogenic diet as a nutritional means of recovery and then you developed a kidney stone), please join my keto mild group on Facebook. It is a closed group and more private conversations can be posted.

      Best wishes to you,
      Angela

  34. My son, who is 12 1/2 years old, was on topamax for 2 years. His dose varied between 125mg daily to 25 mg daily. He is now symptom and seizure free and off all meds for about 2 weeks now. The only lasting effect I see is that he still doesn’t break a good sweat when in the heat. He gets red and clamy to the touch, but no real sweat. Will this change and correct itself over time? Is there anything I can do to help him regain the ability to sweat? We are going outside a couple times a day to run around in the heat, but usually no more than 10 or 15 minutes to see if he will sweat. Any help would be appreciated.

    1. Hi Trisha,

      Thanks for your post. The fact that your son is symptom free is both great, of course, but is also worrisome.

      Seizures are caused by the random and non-directional firing of neurons. Topamax, and similar anticonvulsants, work by inhibiting the firing of these cells. Topamax and other medicines for seizures are not curative medicines but are preventive treatments such that it is expected that the person will be on them for life, unless things change–such as the brain is able to resolve the cause of the misfiring. As I explained in a comment to someone else previously (see the answer to Julia below), the inhibitory mechanism of Topamax is via a “plug” (think of it as a cork) that closes the gate through which calcium would enter the channels to push out neurotransmitters. Neurotransmitters in the brain are the signaling mechanism of communication so neurotransmitters entering the synapse (space between neurons (brain cells)) fills with neurotransmitters and the neighboring neuron picks them up and sends the message to the neurons it is connected to. In a domino effect like way the message gets amplified until a threshold is crossed and the body does something–in your son’s case starts the cooling effort by producing sweat.

      Since Topamax is well known to interfere with the body’s thermal mechanism in the brain–it is a systemic voltage gated calcium channel blocker and cannot distinguish between neurons that are not participating in the seizure activity; it blocks all neurons’ voltage gated calcium channels–it stops communication between all neurons. The brain is extremely adaptive–particularly–to trim away unused and unneeded connections. Therefore, your son’s growing brain was degenerated noticeably with his thermal control center’s neurons. Since the brain is adaptive, and particularly so for a young body, the challenge is to force the brain to rebuild those lost connections.

      Similarly to how the brain responds to challenges (such as Topamax) by adapting to the new requirements and blocking all calcium channels and trimming neuron connections, there is a chance to rebuild the connections–assuming the channels themselves are not permanently damaged. If you read my response below to Julia, I explain the potential problem with the damaging of the protein that forms the actual channel opening that is plugged up by Topamax. This means that the cells that form the protein may need to be forced into replacement by the brain. Brain cells do get fixed but only replace once every 50 years (it is believed) so it may take some time for such replacement.

      However, you can try to “train” the brain back into functioning. I would consider this approach to be equivalent to physical therapy, only this time for the brain. To do this, I personally would try the following (and whether it will work or not is very much up to your son’s brain) since it is beneficial no matter what and there is no chance for it to cause harm–assuming his seizures will not return as a result of rebuilding lost connections (this is why I suggested earlier that having his seizures come to a halt is not necessarily a good thing and rebuilding the brain to what it was before he took Topamax may also bring the seizures back so it is a chance you either decide to take or not).

      The first step, of course, is to show the brain the need for those neuron connections by exposing your child to temperature variations regularly. However, since his brain is not using his thermal cooling (and likely heating either), you need to artificially provide the cooling/heating process the brain is not doing after exposure each time.

      In advance you need to make sure he is properly hydrated. Hydration is not water but those elements of the electrolyte that evaporate from heat and simple daily activities, including breathing and talking: salt and water. So prior to any heat exposure, your son needs to be fully hydrated with salt and water–salt can come from eating salty foods.

      No sweets at all of any kind for this training please–do not use a sport drink! They dehydrate rather than hydrate.

      Provide the kind of food that is heavy in magnesium, salt, calcium, fat and has protein but not ,much carbohydrates–a steak or a fish slice is perfect, and drink at least one whole glass of water with that–do not feed him starchy or processed foods with this so no potatoes, no pasta, rice, bread, or cereal and best to not eat fruits either for the training time (too much sugar and sugar dehydrates), only the meat or fish with perhaps some green salad. Since these are high potassium items, salt them really well and have him drink at least a glass of water. After this, expose him to hot for 10-15 minutes and then pull him back in and have him hydrate liquids–whole milk is ideal if he can drink it, pickle juice from salt pickles (not vinegar pickles) are also great or olives with a glass of water. You can do this several times a day and see if his body responds. It likely will eventually but it may take some time of training.

      There are more drastic dietary means that are used for kids with seizures that rebuild the brain, such as the ketogenic diet. That diet can literally build stem cells and help the rebuilding of damaged neurons but it is a hard-to-follow diet for a child and he would have to do that with a doctor’s supervision who is familiar with the ketogenic diet (99.9999% are not) for a couple of years.

      I hope you find this helpful.

      Angela

      1. Thank you for that information. I guess I should have explained his situation better about the seizures. We were living in a historic house built in 1905. His symptoms began shortly after moving in there. We didn’t think it had anything to do with the house because he was the only one having any problems. He began with his legs making strange movements and eventually they would quit working and cause him to fall, as if it were a drop seizure. After about 6 months he had a full body grand mal seizure. Over the next couple of years they did many tests and hospital stays and could not find any evidence of epilepsy and they could not figure out what was wrong. They wanted to label it a mental disorder. I noticed that when we would be in the hospital for a week all his symptoms would clear up. So we started looking to see if it could be something in the house. We found out the house had old building materials including lead paint, toxic mold and an improperly cleaned sewage leak underneath the house, and it had been sprayed several times over the years with products that could be harmful. We moved to a new house and his symptoms went away so I began taking him off his meds. He’s had a couple of headaches (fairly mild) and he hasn’t produced a good sweat yet, but other than that we have had none of the old symptoms that looked like seizures. I myself have epilepsy, but control it with diet (ketogenic and modified atkins) so I assume that this may be why his sensitivity to whatever was bothering him in that house manifested as seizures. But this is just me guessing at it cause the doctors have been unable to give me any clear answers as to what happened.
        Again, thank you for the above help. We will definitely give it a try.

        1. Oh wow Trisha, that explains everything! Poorly ventilated toxic fumes can cause seizures! This I have witnessed several times before. Not everyone is sensitive equally but those who are, will generally end up getting a Grand Mal–this happened to a neighbor who refinished a furniture with pains without proper ventilation! Chemicals in fumes can interfere with the ionic movements of minerals and also the functioning of the pumps so glad you moved out of the house! Such fumes and toxic mold can also cause migraines–I am working with a migraineur at the moment who just moved out of her house and improved immediately.

          Your son’s headaches may signal that his brain is sensitive and that he may have inherited the seizure genes from you and those genes may have turned on from the fumes stress experience. Given that you control yours with diet very cleverly, I highly recommend that you try to move him into the same dietary direction since the ketogenic diet and even the Modified Atkins Diet (MAD), what I call “Keto Mild” (I am on the same), appears to have amazing brain healing effects.

          He is young and that diet may help him prevent the kind of changes that will later give him seizures. A stricter version of the ketogenic diet (90% to 95% fat) is used therapeutically for children for seizure prevention and according to literature, after two years on that stricter version they can completely recover and become seizure free. Please consult a ketogenic diet specialist–there aren’t too many but some medical institutions are starting to wake up and use it (I belong to Kaiser and they do have a ketogenic diet department that specializes in children with seizures!).

          Since your son does not have seizures but his brain could use a helping hand in recovery from Topamax, the MAD version may just do the trick! It is also a much healthier diet than the “standard” high carbohydrates diet in general so that is a win-win proposition.

          Good luck and thanks for the update! It makes complete sense!

          Angela

  35. What can you tell me about Trokendi / Topiramate and paranoia side effects? I have been taking Topamax for about 10 years and am unsure if my worries and constant obsession about relationship issues are due to the medicine. My doctor prescribed Wellbutrin 150mg twice daily about 3 years ago.

    Thank you,
    Vicki

    1. Dear VCT,

      Trokendi is the time-release version of Topamax. As you read above, it is a horrific drug with tremendous side effects–if you read the comments to this blog post you will see other people fighting even suicidal thoughts. Wellbutrin is not any better. here is all you need to know about Wellbutrin:

      Wellbutrin is an antidepressant and smoking cessation aid drug. It is a norepinephrine-dopamine reuptake inhibitor (NDRI) flooding the brain with dopamine and norepinephrine (NDRA). The most important side effect is an increase in risk for epileptic seizures, which caused the drug to be withdrawn from the market for some time and then caused the recommended dosage to be reduced. Topamax is an anti-seizure medicine so it makes sense to take the two together in that you prevent seizures that Wellbutrin may cause.

      Wellbutrin’s real mechanism of action is not yet understood, but it induces the release of norepinephrine and dopamine in addition to inhibiting their reuptake. It is also known to increase blood pressure and heart rate (pulse). Epileptic seizures are the most common adverse effect of Wellbutrin! The increased pulse rate and blood pressure is the result of increased adrenaline release—meaning Wellbutrin causes anxiety. It is a reuptake inhibitor for norepinephrine (noradrenaline) and epinephrine (adrenaline), blocking the norepinephrine transporter (NET). This leads to increased concentrations of norepinephrine and epinephrine which increases adrenaline. Wellbutrin lowers the threshold for epileptic seizures because it departs from the body very slowly and interferes with the clearance of other drugs as well.

      Common Wellbutrin side effects:
      Headache, Transient insomnia, Abdominal pain, Agitation, Alopecia, Anxiety, Asthenia, Concentration disturbance, Constipation, Depression, Dizziness, Dry mouth, Fever, Nausea, Pruritus (itchiness), Rash, Sweating, Taste disorders, Tremor, Urticaria (indicative of a hypersensitivity reaction), Visual disturbance, Vomiting, Anorexia, Chest pain, Confusion, Flushing, Increased blood pressure, Tachycardia (high heart rate), Tinnitus, Abnormal dreams, Aggression, Anaphylactic shock, Angioedema (indicative of a hypersensitivity reaction), Arthralgia, Ataxia, Blood glucose disturbances, Bronchospasm (indicative of a hypersensitivity reaction), Delusions, Depersonalization, Dyspnoea (indicative of a hypersensitivity reaction), Dystonia, Elevated liver enzymes, Erythema multiforme, Hallucinations, Hepatitis, Hostility, Hypotension, Irritability, Jaundice, Malaise, Memory impairment, Myalgia, Orthostatic hypotension, Palpitations, Paraesthesia, Paranoid ideation, Parkinsonism, Restlessness, Seizures, A condition similar to serum sickness, Stevens Johnson syndrome, Syncope, Twitching, Urinary frequency, Urinary retention, Vasodilation

      To see the side effects of Trokendi, see above under Topamax. They are the same.

      Hope this helps.

      Angela

  36. Hi Angela-Thank you so much for this article. Individuals really need to research and advocate for themselves when it comes to this (and all) med(s). Quick question for you, did you notice during your research long-term effects after stopping the medication? I was on it for 3 years, and it took all of that time for the suicide idealization to kick in. Slightly before that I had a few instances of paraphasia, and associated it with the med. I stopped taking Topamax in 2012, and had no issues (except for extreme weight gain). As of late, I have noticed the paraphasia again, multiple instances a week. I am worried about long-term damage that may have been done, as there seems to be no recent addition or change to my life to cause this confusion. I took a cognitive function test and scored “below average for my age” (I am in my early 40s). This is terribly disconcerting, and I’m wondering if investigating the Topamax is where I start.Thoughts? Thanks so much in advance.

    1. Dear Julia,

      The answer unfortunately is YES. The explanation why is a bit technical but I give it a go ahead in case you may be familiar with a bit of chemistry and biology as well as voltage.

      As you can see on the picture in the article, Topamax is a voltage gated calcium channel blocker. I want to explain 2 things here:

      1) What such block means to the brain long term and
      2) If the removal of the block can reset the channel as if nothing had ever blocked it

      1) What such a block means long term is based on what is called the “adaptive brain.” What this means is that, as in other parts of the body, cells that are not used are removed and destroyed by the body since they are either defective or are taking up space and energy without contributing. A live organism is extremely adaptive. When the voltage gated calcium channels are blocked, there is no neurotransmitter release into the synapse (space between brain cell receptors) and so all the receptors that are usually receiving neurotransmitters from brain cell X now don’t. Those receptors are not needed and the connection is cut (trimmed)! Such “trimming” occurs all the time in the brain. Such trimming can be temporary and new connections can form and others are permanent. Which you face is a bit of “toss of a coin” and also depends on the region of the brain affected most. Older (in terms of evolution) regions are less likely to change (this includes the libmic system, which is affected in your case, which is nicknamed the “reptilian brain” meaning it is so old that reptiles have them).

      2) The removal of the block: can the channel reset… This is a bit more technical. A channel is not an open door but is a precision machinery that is made up of proteins that are folded in thousands of different ways based on little polarity arms that normally guide minerals or neurotransmitters in or out of the cell based on the shape, size, and polarity. In this case, calcium must flow into the cell to press neurotransmitters out but Topamax blocks this entry. Think of the opening as a clump of very curly hair and each twist stands independently holding out hands that are either positive or negative to guide the calcium very fast into the cell (this image is not calcium but shows what I mean by the little voltage hands very well). Now think of grabbing a pile of this hair and putting a cork (literally) in the middle of it by force.

      What happens? First, note that the cork (plug) does not go through the opening but plugs it so it is bigger and heavier than it should be so it flattens the curls. Right? I hope you are still with me. When the curls flatten, the little polarity arms that were hanging out here and there get destroyed. Now pull the cork out of the hair forcefully and see what happens. Does the clump of curly hair pop back up to look like what it was before? Generally speaking no. What happened to the little voltage arms? Do they come back? Generally speaking no.

      As a result, some of the effects of Topamax (and all drugs that tinker with voltage ionic channels anywhere in the body in any way) may be permanent and several such permanent effects may not show up until later. The reason why some effects show up later can be because as the brain constantly evolves and adapts, it just reaches a threshold number of neurons that malfunction and are not able to pop out of that state. There are also natural mutations plus if you are taking medicines (other than Topamax) they all affect the brain in some way and can accentuate changes the Topamax left behind.

      In terms of cognitive test: Topamax is very well known to cause cognitive issues for the very reason I noted: brain degeneration as a result of plugging up one of the most important brain channels.

      The best thing I can recommend you do is make sure you stop all irritants to the brain to give it the best chance to recover, so stop: sugar, sugar substitutes, alcohol, juices, smoothies, shakes, things that have loads of glucose without any fiber and make sure your electrolyte is in homeostasis (salt, potassium, magnesium, calcium and water–no need to add sugar to anything since you can eat food with carbs naturally in it) by eating right (don’t take pills) and heavy duty brain challenging exercises (not puzzles). Start to learn something you never ever thought of, like say astronomy… whatever… You have a good chance—-you are still young—-to rebuild those lost neurons!

      Hugs,
      Angela

  37. Hi Angela,
    I’m on Topamax for Benign Increased Intracranial Pressure at 125mg a day. I’ve been on diamox and neptazane in the past but couldn’t tolerate those due to side effects. Topamax seems to only give me occasional tingling but otherwise I’m not having other side effects but I don’t like that I’m on this at all. I’m not a typical patient in the fact that I don’t have typical symptoms of the condition (debilitating headaches etc) but my opening pressure was 38 so I do need to treat it. It was found by accident essentially. I was having memory/cognitive issues and some night glare and I do get an occasional migraine headache which I decreased the frequency of by changing to an organic diet and increasing water intake. I fear being on Topamax long term to treat this condition. My neurologist has given me no long term plan of getting off of this medication. I’m frustrated. I’d rather get periodic spinal taps then be on this medication. I also triggered this condition by losing weight which is not typical and no one seems to care that my presentation and my symptoms are both atypical. I’m feeling very frustrated with the whole thing…thank you for the article on the Topamax because it makes me want to get off of it even more.

    1. Dear Elisabeth,

      Very sorry to hear about the intracranial pressure since that may be a permanent condition. In reading up on some literature it is clear that you are on the right medicine with Topamax. Sometimes the side effects are minimal compared to the potential negative outcome for not using the drug–your case may be such. I agree that getting off Topamax would be the best but then you not only have to have the periodic spinal taps, which come with their own set of dangers of infections, but also until you get to that stage, the pressure building up can cause other problems. I agree that the best thing would be to find the cause of the pressure buildup but that is not yet in the cards.

      The only thing I could recommend, given that you have some side effects you can feel such as the tingling and memory issues, is to see if you can find the minimum effective dose that causes the least amount of damage. Please talk to your doctor and see if such dose-challenge is feasible for you–it is not so necessarily for everyone.

      Your losing weight is actually not atypical since Topamax originally was a diet pill (I know… I found this ridiculous myself). So the majority of the people do get rid of some weight though I also know some who gained! With this said and done, there are alternatives to Topamax but they all have their problems and side effects. I wish I could tell you to stop it but I cannot since you do have a condition that validates its use.

      I hope this sets your mind at ease! <3

      Hugs,
      Angela

      1. Thanks for your input. I just wanted to clarify that I didn’t lose weight on Topamax but rather I lost weight on my own through an organic diet and exercise. The weight loss triggered the increased intracranial pressure – that’s the atypical part because it usually happens to people who gain weight. So I not only have atypical symptoms, but developed the condition in an atypical fashion. Very frustrating!

  38. I wish I had read this prior to taking this med. Doc started me at 25mg for a week, then 50 the next, then 75 next and finally 100. Along for bipolar disorder and appetite suppressant. I am also taking 400mg lamictal for the past 2 years, which works great…
    The first day after I took it was ok. Definitely noticed no appetite at all, which of course I loved. I also have an eating disorder so I wasn’t sure if that was a good or bad thing. . Later that day I was sitting with my son at a weekly toddler activity class and all of a sudden I felt lightheaded, nauseated, and sweaty palms/feet feeling like something was going to happen to me, so we rushed out right away. All was fine for a bit, noticed lack of sweat despite taking walks in the high 90s heat. The ‘attacks’ or whatever bad feeling that was slowly crept on more and more especially after upping the dose. Then it got so bad I could no longer leave my house because every time I did I felt that huge attack feeling coming on. Very bad as I have 2 children.
    So I called Dr and explained everything and he told me to just stop taking it. So I did thinking it would all go away after. But it didn’t. I only took topiramate for almost a month and it had this bad of effects on me. It has been since the end of June, and I am STILL having these fits or attacks or whatever they are and it is debilitating and upsets me hugely. Makes me feel very sad because I wish I was my normal self prior to taking this pill. Not only that, but it feels like my body is all out of wack in general just fatigued nauseated and just a different feeling as if I am not myself. Told Dr and he prescribed me xanax! I did not and will not take that as it can be abused and is highly known for it. . I just want these attacks to stop forever. I am almost 100% sure that all of this is because of topiramate because nothing even close to this has ever happened to me before, and I have trialled and errored many meds over the years.
    I was not informed on any side effects, just trusted Dr.. I am also not sure if it is something to do with my size? The dosage upping too quickly or something? I’m 4’10 and 100lbs. . I am extremely frustrated and depressed about all this and would give anything to feel normal again. Highly highly highly do not recommend this med. But if there are ones out there who do like this med then great, I guess everyone is different and it feels like I got the crap end of the stick. I don’t know what to do.

    1. Dear Emily,

      Very sorry for all the trouble that drug caused you. As you can read on the adverse reactions of Topamax, it is a voltage gated calcium channel blocker, which inhibits neurotransmitter release in the brain. It is systemic so it affected your body’s thermal control, hence your issue with sweat. This is very common, by the way!

      Lamictal is a voltage gated sodium channel blocker. This drug also has its fair share of warnings (it is a black boxed drug as well). It has interactions with female hormones–that may explain some issues so make sure that you consult an expert (I mean a hormonal expert) before you take any contraceptives.

      In addition, voltage gated sodium channel blockers effectively block your hydration. This may be what shows up as your problem at least partially since the brain takes some time to recover from Topamax–sometimes the damage is permanent. I don;t know how much water you drink and how much sweets you eat but while you recover, it is best to quit all sweets, increase your water and salt and make sure you get enough potassium from your food. Proper hydration will place your body into the fastest recovery mode.

      However, it does sound to me like you are having anxiety attacks. For anxiety, Xanax is acceptable–there are better ones that are longer acting so you need to take much less and less often. I am not fond of Xanax because it causes a quick “high” and a quick “crash” and that makes it highly addictive–meaning over time you need to increase the dose to be as effective as before. The longer-acting benzodiazepines are much safer but doctors don’t like to prescribe them, thinking that the faster the medicine leaves your body the better but that is actually the opposite of what is good in terms of addiction. A steady slow up and not so high with staying at level for longer time and a slow reduction means your body does not experience a high or a crash. Thus those benzodiazepines that are long acting are the safest–provided they are prescribed right.

      The best anxiety medicines are Klonoin (Clonazepam) and Valium (Diazepam), both having a half-life long enough (26-50 hours) to not need to take it often. Prescribed properly (smallest dose, max once a day) they do not cause addiction–they do cause the same reduction issues as Lamictal or Topamax or SSRIs in that they cannot be stopped cold turkey. I recommend you talk to your doctor about switching to one of the two I mentioned and the smallest possible dose and use it onlywhen you are not able to get out of the house and be with your children.

      I sure hope you can recover fast and enjoy your children!

      Hugs,
      Angela

      1. Hi Angela, I have been taking topamax for 4.5 years for migraines, and it has worked great. Still get an occasional one, that needs to be treated with my rescue meds. About 6 or so months ago began getting horrible intestinal bloating where I would look 6 months pregnant (I’m 5’4″ and weigh about 110#). I eat very clean, and a eat gluten free soy free diet, somewhat Paleolithic. Finally went to see a gi doc was concerned there was something else going on; did 2 hydrogen breath tests, and an upper gi. Breath tests are normal, negative from celiac, but I have esinophilic esophagus, moderate gastritis, gastric ulcers and flattened duodenal tissue. She wants me to do as GES now, but I know I don’t have gastroparesis. After thinking about it I did some more research on topamax and found there’s large percentage of patients taking it who develop gastritis. So there is my connection. Thanks you for your article, I really enjoyed it and it is motivating me to switch meds. I do have difficulty recalling things, which has become worrisome seeing i am only 42. One other question, my gi doc tested my ANA which came back positive, now am wondering if there is a connection with the topamax and autoimmune??

        1. Dear Andrea,

          I read your message with horror. I am so sorry to hear about your suffering. Indeed, Topamax can cause many adverse effects that are not even listed. That is because they work systemic blocking the voltage gated calcium channels all over your body and not just those areas that cause you trouble with migraine. Everyone has different adverse reactions though some seem similar across the board. Because it affects such huge number of brain regions, from the motor part that is not under your control, such as thermal heat management and digestion, to memory and thinking, the adverse effects can literally be anything.

          I think you should go ahead and do the test your doctor wants to do. Gastroparesis is not a condition you want to wait for since by then it can be irreversible. If you can prevent something, you should.

          In terms of stopping Topamax, you have a few things to do before that can work and you can remain migraine free. It would help if you read some of my earliest articles on hormonesmatter since I write a lot on migraines.

          I also have a migraine group on Facebook only I am on the phone now and cannot get a link your way but look for “Migraine Sufferers Who Want to be Cured” and join. The group has hundreds of members who reduced and stopped Topamax and remained migraine free after using the Stanton Migraine Protocol. You have to do a few changes in order to become migraine free.

          Please join or contact me via my website at http://stantonmigraineprotocol.com I am out of town at the moment but the admin team will let you in.

          Best wishes,
          Angela

  39. Dr.

    I’m a 65 year old male bi-polar patient diagnosed many years ago. I have been on virtually all the ” mental” medications out there including the horrid lithium and depakote. Well, I finally asked my Dr. to put me on Topamax, since my weight was sitting at 283 and I was only six foot. My doctor informed me that Topomax would not work as well for my mental condition as Depakote, but we could give it a try and see. Long story short. I have been on it two years now, I have lost 50 pounds, I can get an erection again after losing it to the various “mental” meds out there, i.e. lithium and depakote, etc. I do seem to take longer to recall things and I am only on 25 mg. 3 times a day. However, I have always been opinionated and quick to jump to conclusions. Perhaps there will be this trade off. I definitely feel encouraged that I am not mentally chemically castrated on topamax like the other drugs out there.

    1. Dear Don,

      Glad that Topamax is working for you and hope that it will not cause you harm. Not everyone responds to every medication the same way, which means that it may not be harmful for all. I find it interesting that Topamax works for bipolar since it is a medicine used for seizures and evidence has not found support in its use in bipolar disorder. However, if it works, it works. Glad for that.

      I hope you remain happy and well,
      Angela

  40. Great article! So glad I found it, thank you.
    I take a compounded Thyroid medication for Hashimoyo’s hypothyroidism (naturopath prescribed) and had been taking vyvanse for adult add, but couldnt shake an underlying sense if anxiety and low mood, so my psy md added topomax. Within a week (25mg daily) I was markedly depressed, and by the third week (75mg) I felt like I was being slowly poisoned, so I stopped taking it. I was super depressed, irritable, developed paresthesia in my feet, and now have pain in my heels that won’t go away. I found it impossiblr to stay hydrated. I just stoped the vyvanse as well, and had withdraels, even though I was on the lowest pissible dosage. I found out my minerals are depleted, so I am hoping a nutritional approach will be the answer. Pharmaceuticals can be helpful when indicated, but I don’t seem to tolerate them well. The topomax was one of the worst experiences, ever.

    1. Dear Lori,

      I am glad you found this article as well. Indeed, Topamax blocks hydration. It was very observant of you to notice that. The paresthesia is a very typical adverse reaction for this medicine unfortunately and it is a sign to stop it but few people pay as much attention as you did! I am glad you stopped Vyvanse as well since the latest Medical Book actually no longer includes ADD/ADHD as diseases–they are not diseases actually. They typically represent high IQ (which you obviously have based on your own research and observations). Every time I bump into adults with “ADD/ADHD” on medicines for it or adults who place their children on any medicine for ADD/ADHD I ask them to have an IQ test instead!

      Why normalize the extreme hyper curiosity of our next Einstein by bringing her “down” to “normal”? 🙂 Glad you stopped all and do have an IQ test.

      In terms of nutrition: proper nutrition–assuming you can absorb it–is what health it is all about.

      My personal experience may help in this. I have been unable to absorb B12 all my life–I already needed IV B12 at age 19! So I had been on monthly shots (pills that have to go through the stomach don’t work either). However, with the experimental mind of mine as it is, I decided to go on the ketogenic diet (not to lose weight but to see how it works with migraines since I am a migraineur and treat people with migraines and it is great). I have now been on the ketogenic diet for a month or so. I stopped my B12 over a month ago (half-life is 6-10 days) to get it tested by a blood test to see if I still cannot absorb B12! And wow!! I can! The food I ate blocked the absorption of B12! My blood test came back amazing, including my triglycerides that dropped to 76! Amazing! I have never been healthier.

      I am not saying you need to go on the ketogenic diet. I am recommending though that you investigate your diet and find out what is blocking your absorption. The biggest absorption blockers are grains–all grains, including rice and corn flour–see my article on grains.

      With this all said and done, I have to also tell you that I have always been an anxious person all my life. The ketogenic diet totally changed that! I no longer have any “moods” and any problems (husband was the one who asked what I changed since I am a completely different person now), full of energy and always happy. The ketogenic diet is a definite mood recovery diet in addition to a ton of other benefits. I recommend you investigate it.

      Best wishes,
      Angela

  41. Hi,

    Thank you for all of this information. For the last week the inside of my lips have been swollen and sensitive and I wasn’t sure why. I have been diagnosed with IIH and my neurologist put me on to a hormone specialist as I am overweight (not hugely) and no matter what I do, I can’t seem to loose anything! The doctor put me on topamax along with another drug to help with weight loss and as well as increased exercise and diet plan it’s working. I have pretty sensitive skin so thought maybe I was having an allergic reaction, but now I think it must be topamax! I haven’t been super regular with it, 25-50 mg of an evening most nights (sometimes I forget for a few days) and have been on it for a little over a month. I am stopping right away (just threw it all in the bin) Does it take long for it to get out of my system and do you think for this short period of time I will have done much damage to myself? I am now very worried 🙁

    Thank you!

    1. Hi Elle,

      Interesting issue on Topamax. I suppose it depends on the dose but since you said you have often been forgetting it and not taking it regularly, if it did not hurt you then, perhaps it will not hurt you now but we cannot make that statement without you consulting with your doctor. It would be good to check with your doctor or at least with the pharmacists.

      In terms of losing weight: many people have the same struggle as you do. There are better ways to lose weight than dieting or taking pills but it requires a lot of willpower and also it greatly depends on your how stressful your life is and how much control you have over what you eat and drink. The easiest way to reduce your weight is to cut out those foods that cause you to build up fat–and believe it or not, fat does not build up on your body as fat but sugar does. So the most important thing to lose weight is to cut sugar. We now also know that sugar substitutes make us hungry and we eat more, so sugar substitutes are also not the way to go.

      The best way to cut sweets out of your life is to do it cold turkey. Sugar is extremely addictive–some studies show that it is 8 times as addictive as cocaine.

      The second thing of concern is grains. The current healthy diet pyramid called my plate has little health about it. It recommends that you eat a lot of cereal, bread, and similar grains. Grains cause a serious problem for the body in absorbing nutrients and so while you are eating, your body is actually starving for some minerals and vitamins that would keep you healthy and help you get rid of some weight. So stopping all grains (I don’t mean gluten grains but all grains, see my article on that here), which includes rice and pasta and corn chips and everything pretty much we are used to eating–particularly heavy on cereals and breads that you need to never eat again.

      To make all these changes is hard but very possible–I am a prime example for it. I took it a few steps further and joined the movement of the low carbs high fat (LCHF) diet (nutrition, really) and went ketogenic. This diet cuts out many fruits and vegetables that are high in sugar and increase fat–it converts your sugar burning metabolism to fat burning. When you convert to fat burning, you will drop weight like there is no tomorrow, because you burn your fat reserves. It is an amazing diet but not everyone can hold onto it because of family responsibilities. I have been on it and loving the way I feel since it also gives me boundless energy!

      Good luck with your effort on trying to become healthy in weight and mind! <3

      Angela

      1. Thanks Angela, I am already on a pretty amazing healthy eating plan and am active. The problem was not seeing results, so they gave me the pills to kick start but not rely on 🙂 I am now going off them as I have created an even better lifestyle and structure for myself! I will certainly read up on all your advice!

        In terms of topamax- I have only taken 20 pills over 6 weeks. Half of 25 mg tablets at night then on to full 25 mg after 2 weeks. My lips really swelled up after I started the full tablet but I didn’t make the connection as I felt like it was just allergy or spider bite (I am from Australia haha).

        I really hope the sensitivity and swelling of my lips goes down as it is really painful at times.

  42. Hi,
    I’ve been on Topamax 400mg along with Lamotrogine, since 2006, for my complex partial seizures and migraines. I’ve also had 4 healthy children- both drugs were used in the last 2 pregnancies.
    I am seizure free and migraine free and if anyone tried to take either drug from me, I’d put up a fight! I had a bumpy start with the Topamax. I lost a lot of weight ( I’m only small anyway), had pins and needles in my hands and feet loads and still have word/memory problems now. I think it’s nicknamed ‘the barbie drug’. I do worry a little about my kidneys, but at the moment, my quality of life has been improved unbelievably thanks to this drug.

    1. Dear Lauren,

      I am happy that you feel fine and are both migraine and seizure free. That is a wonderful news and I hope it stays that way.

      Both medicines are known to cause some harm to the unborn but you may have been fortunate and neither is hurt.

      However, in terms of your own brain, you should have periodic cognitive checks since Topamax is known (and labeled as such) to cause brain degeneration by trimming off neuronal connections, thereby causing forgetfulness and reduced ability to make decisions. It also affects your internal thermal control so make sure you never go on the sun since you can overheat. Rather than being just concerned about your kidneys, be concerned about your liver since the metabolism of both drugs is actually by the liver though the elimination is through the kidneys. So both are affected and you should have at least annual test for both liver enzymes and GFR (filtration rate at which the toxins are empties from your body) for your kidneys–these both are blood tests. Lamotrigine has some known interactions with contraceptive hormones so please be careful about using those. Lamotrigine is also known to harm the eyes when used long term, so at first sign of discomfort, please head to the doctor for alternative medicine option.

      Best wishes,
      Angela

      1. Help ! I am VERY concerned reading all of this ! I have been taking both Topamax AND Lamictal for many years, for Bipolar II, Seizure Disorder and migraine’s. Two doctors laughingly call Topamax by it’s “secret’ names (“Dopamax” and “Stupamax”) and I live both of those descriptions to a T ! I take 400 mg’s of Topamax daily and 200 mg’s of Lamictal a day. My concerns are I have been trying to improve my fitness/health levels, and I feel like I am just banging my head against a brick wall, and no one is listening ! I chose HIIT as my fitness routine, and because I get SO hot so quickly but don’t notice until it’s too late (I don’t sweat) I started having more seizures, mid workout and can’t seem to keep up. I am so drug-fatigued, I never really feel like I’m improving It’s been 8 months and although my body looks like I am getting fitter, I do not FEEL like I am improving, at all. Cardio is SO hard ! My Neurologist just told me I am “getting older” (I’m 53), my Psychiatrist said to increase electrolytes, my instincts are telling me to get off these meds ! My eating plan is cleaner; unprocessed, almost completely sugar free other than an occasional treat, no artificial sweeteners at all. I do use a hormone patch since a hysterectomy 18 months ago. I swear, my depression is WORSE since I began exercising 6 days a week ! I just feel like I am failing everyday when I can’t get through a work out without being completely exhausted. And I still trip all over myself. I’m tired of people telling me I am too old and THAT’s why I’m so tired. Waiting for those happy endorphins and I have never met them. And no one believes me. I am so frustrated. I’m also tired of people making fun of me for being “blonde”. Are these meds to blame for any of this ? If so, how much damage have I caused my brain ? Is it too late to reverse any of it ? I think I have been taking Topamax for more than ten years …I was taking 800 mg’s at one time.

        1. Dear Janice,

          Wow, I am so sorry to read how they are disregarding your symptoms! Not only do I believe you, I KNOW that what you are feeling are those drugs and not you at all. So let me explain why you feel the way you feel and see if you can find some help by printing this out and putting it under your doctors’ noses and see if they still laugh at you. “Dopamax” and “Stupamax” are well known nick names for Topamax–not Lamictal. Lamictal is a different drug–not any better only it damages you (and your brain and heart) in a different way. So get your printer ready:

          Lamictal is a voltage gated sodium channel blocker. What is a voltage gated sodium channel needed for, which this drug blocks? The action potential of every single cell in your body. Action potential is a voltage that allows the cells to have ionic level nutrient exchange. Every single systolic beat of your heart (cells working in unison) create one giant action potential. The diastolic (lower number) is the resting potential, caused by potassium entering the cells. This is the same in the brain and muscles as well. So your exhaustion is your inability to create an action potential the proper way.

          These action potentials in the brain are responsible for creating your neurotransmitters (the endorphin you so much waiting for) but you cannot make enough of them. You also cannot make enough of other neurotransmitters, like serotonin, which would be the reason for feeling depression. Here though the two drugs connect.

          Topamax is a voltage gated calcium channel blocker. What that means is that they block high voltage channels whose job would be to kick out of the neurons any neurotransmitters they were able to make. Since these channels are also blocked, your brain (and heart) is effectively shot down. This is why you don’t sweat (sweating needs instructions to release neurotransmitters with the note “she is hot cool her off”. Not only do you not sweat but your thermal maintenance is also prevented from working and so your body literally cannot discover that you are hot. These types of issues affect every single cell, whatever their functions: those functions are stopped or reduced.

          Why Topamax is called a Dopamax: since you are not releasing any neurotransmitters, the receptors that would normally pick up those neurotransmitters are not used. In the brain (and in every single cell of the body), what is not used is destroyed (this is called apoptosis or cell suicide). This damage can be (in most cases it is) permanent. There is a black box warning on Topamax for permanent neurological effects.

          So exercising with taking Topamax means you overheat and don’t get the message in your brain when you reached an optimum workout for your body so likely you are working harder than you should. Exercising while taking Lamictal does not allow you to hydrate properly since it blocks sodium and without sodium there is no hydration–taking more salt and water may help a tad but not much since Topamax interferes with the release of neurotransmitters so while you may get more water into your cells and you feel more hydrated, more neurotransmitters build up in the cells that they cannot release. Not a good solution.

          The biggest reason for seizures is the lack of myelination (insulation) around each brain cell’s axon, the region where the high voltage passes. That is why they use “voltage control” by Topamax: it simply prevents most of those high voltages that cause damage. However, the damage can be repaired by our brain provided the right amount of cholesterol and animal saturated fats are eaten. The brain is 70% fat and 25% of all cholesterol of the body is in the brain forming the “white matter” whose job is to repair myelin around these axons. The ultimate repair machine in your brain requires you to stop eating sugar completely and start eating more animal saturated fats.

          Let me tell you about the diet–I am on it as well simply because I love the calm it gives also for migraineurs (I am one): it is the ketogenic diet. Unfortunately, very few doctors know the meaning of the word let alone recommend it for you. I don’t know where you are located and what medical service you have but Kaiser, for example, offers the ketogenic diet as a solution for kids with seizures and though I am neither a kid nor have seizures, I was able to get into the program with my migraines.

          Look to see if you are able to find a healthcare provider (or at least a nutritional expert) who can guide you. It is not a program you want to start on your own. I found it quite easy to do it wrong. I do have a “keto mild for migraine” group on Facebook where you are welcomed to join but even there I personally require that anyone going on that diet seek out the help of an expert. I can be help but I am not an expert and cannot take responsibility over the benefits of that diet.

          In terms of medicines: until you are taking these two medicines, especially Topamax, please do not exercise so much. You can get hurt. It is not you but the drugs. What I personally recommend is that you get on the low carbohydrate high fat diet and then talk to your doctor to start VERY SLOWLY to reduce Topamax to see how you respond. It may benefit you to see if your doctor is in this database, because if he/she is accepting money for prescribing Topamax to you, chances of a nice “medically professional” recommendation for a healthy and painless reduction of Topamax are pretty slim. If your doctor is in that database showing moneys accepted (for whatever reason or methods, including lunches), I recommend you switch doctors before you attempt to reduce your medicine with proper medical supervision.

          I wish you strength–this will be a hard fight with your doctors! Just know that you are correct and you are neither imagining things nor are a weakling: it is the drugs.

          Many hugs to you and I wish you well!

          Angela

  43. Hello Doctor. I admire anyone who can do the math. I would’ve gotten further in life had I been able to understand more than basic four functions, but I can’t complain. I’ve written two lovely novels, so I am not an imbecile.

    Here’s the problem — I have suffered excruciating nerve pain in both legs for over ten years. Neurontin (gabapentin) amitriptyline, nortriptyline, Lyrica, Cymbalta have had no effect on reducing fierceness of pain. Level of pain is progressively worsening over time.

    I am 69YO. I am not diabetic and do not suffer from migraines, seizures, nor convulsions. My pain mgmt. Dr. has recently Rx’ed Topamax for pain control. He warns that T may make me sleepy. I am not concerned with lethargy as lying in bed is the only time I am pain-free.

    I cannot ignore the opinions of other Drs. — that leg pain is due to lumbar (facet) nerve damage at L3-L4 and is irreversible. I can either learn to live with pain or let it overwhelm me (and I am close to that).

    Here’s a fun anecdote — when I dine out with friends and I sit or stand (this activity maximizes the pain) I sometimes involuntarily screech out loud for an instant. Other diners look at me like I have Tourette’s, but I wouldn’t choose to yelp loudly unless the dinner was lousy and/or overpriced. Good scotch fails to deaden pain.

    So, why was Topamax prescribed for me?? — no history of migraines, no convulsions, no seizures, no diabetes, vit. B1 and vit. D deficiencies which are being treated with supplements. Thanks for reading this.

    1. Dear Paul,

      I feel very much for you and believe it or not, I am just now going through the same thing. But let me first explain to you why you were put on Topamax and why it did not work and why none of the other medicines would ever work.

      First: Topamax. Topamax is an anti-seizure ex diet pill turned migraine pill that should never ever have been prescribed to you (or for most anyone for that matter, except perhaps in rare cases). This is the phenomenon that I call the “toe replacement problem.” It may sound off but actually is right dead on and you will recognize it.

      Assume you have your bog toe hurt on your left foot. You did not kick into anything, nothing fell on your foot, your shoes fit and you are well so you go to the doctor and ask “hey doc, what’s with my toe?” The doc will say “I see nothing so go to the podiatrist.” So let me stop right here. Given your condition (and mine, which is the same as yours in many ways) you already will hit your head in the wall saying “stupid, stupid, stupid! It is the BACK stupid!” but how would the doctor know that? The doctors in today’s medicinal overload climate are 1) not asking any questions; 2) not listening to any explanation; 3) must prescribe some drug even if they don’t get money for it because if they don’t make their “magic quota” the pharmaceuticals are after them (see 60-Minutes program on this); 4) many patients feel unsatisfied with their doctors if the doctor does not prescribe medicines and finally 5) Insurance companies will not pay for a whole spine MRI for a pain in the toe… not even an X-RAY of the back.. perhaps the toe…

      So as you see, what you ended up with is the above 5 points. It is not your doctor’s fault but our healthcare’s fault that healthcare is disease management and not take care of the health!

      So why didn’t anything work? The problem you have is a pinched nerve, likely from the nerve canal closing up ever smaller as a result of degenerative ageing effects, which is, in fact, what I am experiencing these days and feel semi paraplegic part of each hour throughout the day with having lost the feeling in a foot, a toe, or a leg for a length of time with great pain and just the feeling of total misery of getting up and collapsing thinking that I have a leg when I don’t. I suspect you suffer similarly.

      Topamax and all other drugs prevent seizures (if they can) by blocking the start of any voltage through the nerve. So the idea (in theory) is a good one: the pinched nerve cannot allow nerve voltage to pass through and that causes pain so if we stop the voltage completely, perhaps so will we stop the pain. It will not stop you from collapsing without a leg when you think you have one and you don’t but it may not hurt. Also, Topamax and other seizure medicines “dumb down” your sense so the hope is that you may not feel the pain so bad. The thought may have been a good one on the part of your doctors but unfortunately what may work for reducing weight by stopping nerve impulses to hunger or what may reduce diabetic nerve pain that is caused by the overly sensitized nerve endings as a result of the constant irritation by glucose in the blood, it will have no effect on stopping a nerve that is being pressed on by a bone in your back.

      As I am facing the exact same problem as you do–only for me staying in bed is impossible and I am now sleeping in an old chair with huge sagging dips in it that allow some level of comfort–I suppose the only alternative we have left is surgery. So try and ask for a whole spine MRI and have a surgeon evaluate if a surgery is feasible and reliable enough for your recovery. I just had my MRI this last weekend so fate unknown at this point.

      I wish you best of luck and know that you are not alone. You have tried it all, and, most importantly: you now need to take charge!!!

      Please keep me posted and let me know how things worked out!

      Angela

  44. Hi I’v been layer up in bed a few weeks with a tbi and recently diagnosed left temporal lobe seizure activity and prescribed trokendi xr. From what I understand it’s the same thing and all the side effects are tbi symptoms so? ??? Obviously I should request a different anticonvulsant?

    1. Dear Lita,

      Very sorry to hear about your condition. Indeed, Trokendi is the extended release form of Topamax, making it work on your brain (and heart) 24/7. Now given your condition this may be qualified. I am not sure that there are any anticonvulsants that are good or bad since they all pretty much do the same thing in various ways. The most commonly prescribed ones are Topamax, Trokendi, Pregabalin and Gabapentin and they all are voltage gated calcium channel blockers, meaning they block the high voltage channel that may fire such high voltage that can start a seizure. Unfortunately they all are “systemic” meaning they all work the whole body and brain, interfering with major brain and heart functions.

      My question to you is this: Is your brain injury considered to be permanent such that you will have to take anti seizure medication for life? If yes, Trokendi is extended release and so it is a most stable one to prevent you from having a seizure when the drug is reaching a lower concentration in the body, since the extended release does not lower its concentration. However, if you are expected to recover from your brain injury, and there is a chance that you will stop having seizures with healing time, I would recommend you ask to be switched to a type that is not time release since they are much easier to reduce and then quit once you are no longer in need for them.

      So please ask your doctor about your prognosis for the near future since that appears to be important without which you cannot make a decision.

      Hope you find this helpful.

      Best wishes and please keep us posted!

      Hugs,
      Angela

  45. Hello. I have been on topomax for several years, a total of 75 mg per day for trigeminal neuralgia. I must save it has been a lifesaver but recently have developed very bizarre symptoms. Started with a groin pull, now all joints clicking, popping. L hip pain etc. , pin & needle, neuropathies feet. MRI s negative for pelvic fractures & neg for disc disease. Will be obtaining lab work and contacting neurologist whom I deal with for my trigeminal neuralgia. My question to you , have you found anything in your research that would explain the extreme clicking and popping in literally all joints regarding topomax side effects? I thank you in advance for your time and attention in this matter.

    1. Hi Danielle,

      I am very sorry to hear the many side affects you are suddenly showing. Topamax is known to cause all of the problems you now have. Here a doctor is describing how and why his patients on Topamax are getting osteoporosis. Here are some of the things this doctor writes about that:

      “Topiramate is known to cause osteoporosis by causing loss of calcium through the kidneys. While osteoporosis is not common, we don’t know if it is really that rare. A side effect that was thought to be rare (less than 1%, according to the manufacturer) when the drug was launched, is kidney stones. Now we know that close to 20% of people taking topiramate for a long time, develop kidney stones. Both kidney stones and osteoporosis occur through similar mechanisms, so it is possible that osteoporosis is also much more common than doctors think”

      He continues toward the end listing five other very common problems that are known side effects:

      “1) cognitive impairment, such as inability to recall a word, slow thinking, or as some patients tell me, feeling stupid, 2) drowsiness, 3) dizziness, 4) fatigue, 5) blurred vision due to an acute glaucoma, and other.”

      According to rxlist the following are also well documented side effects: “rapid breathing, fast/slow/irregular heartbeat, bone pain, broken bones, loss of consciousness, unusual bleeding/bruising. Rarely, topiramate may cause a very serious eye problem.”

      At the Epilepsy Foundation website forum a member posted this comment/question/frustration: “I have been on topamax for several years and know first-hand that it causes SEVERE loss to your short and long term memory. But at my recent doctor visit they told me to drink 3 glasses of milk every day or take a vitamin D pill because long-term use of the drug affects your bone density. Makes your bones softer and easier to break. First my memory, now my bones? What’ next!”

      So, perhaps, for the bone loss part of it you could read the article I wrote at this website or if you want to dig a little deeper into why milk and why fat, read my enhanced version of this article here. Recovery from Topamax is sometimes possible. Read here how a then 17-year-old was saved and is now in college, Dean’s list, honor student, you name it.

      While generally most side effects occur pretty fast after taking it, neuralgia is one that shows up later and sometimes even after Topamax is no longer taken. That is because neuralgia is caused by the damage to the nerves themselves. Neuralgia—as far as we now know so far—is permanent. The reason what causes it is explained in the drawing in the article: when we remove a function of a neuron from active action, that particular function will degenerate after a period of unuse. Thus since your neurons are not able to release their neurotransmitters in a timely fashion, the neurons’ ability to make neurotransmitters is diminished over time. Neurons may be full of neurotransmitters but since the voltage gated calcium channels must work to have those neurotransmitters released and they don’t work, they cannot release them. This leads to receptor degeneration—meaning that even if the cells suddenly could release neurotransmitters, the neighboring cells have degenerated their receptors as a result of lack of use and hence cannot actually take on neurotransmitters. This alone can cause neuralgia.

      The other permanent damage may be worse though this, to my knowledge, has not yet been researched: are those neurons that are filled to capacity with neurotransmitters but cannot release them going to survive? In the body, cells that cannot function, are ordered to commit apoptosis (suicide). Thus some of these brain cells may actually vanish. Neurons do regenerate once in about 50 years… it is a VERY slow process.

      There is some research showing that the ketogenic diet and intermittent fasting can hasten new cell generation from fresh stem cells of the body’s own making but it is unknown at this point if this is helpful for an adult. The ketogenic diet though is helpful for all ages and is currently used as replacement for voltage gated calcium channel drugs, such as Topamax, very successfully. The main factor in the ketogenic diet is the complete stopping of all simple carbs (sugar, sweets, grains (all grains, not just gluten), starches), drastic reduction of complex carbs, serious reduction of protein, and tremendous increase of fats. You can learn more about the hard-core ketogenic diet here or join my keto mild group for active discussion here. We also have a nutritionist listed in the group (she is not a member) who can guide you. I do not recommend anyone to start the ketogenic diet without medical guidance.

      If you started taking Topamax for migraine, feel free to join the migraine group on FB to learn how to become migraine free and medicine free—including Topamax free. Some of your neuralgia may improve but at this point it is unclear to what level.

      Hope you find these helpful.

      Best wishes,
      Angela

      1. I truly, truly appreciate you taking the time to write such a timely, thorough, lengthy and thoughtful reply. An uphill mountain to climb.

  46. Topamax has been a lifesaver for me. I’m 17 and I started having migraines three years ago. I tried lifestyle changes, such as diet changes, sleep, water-consumption, excersize, etc. but nothing helped. Finally I started trying propranolol. It helped slightly, but it also lowered my blood pressure substantially and I had to stop it. Next I tried Topamax. I was put on a low dosage to start and had some odd side effects. However, the side effects were nothing compared to migraines. I went from having 3-4 migraines a week to having 1 a month. Before Topamax, I was missing a lot of school and extracurricular activities, and I was in an awhole lot of pain. As far as the ‘brain fog’, I have maintained high grades on and off of Topamax; plus out if the two times I’ve taken the SAT, I scored higher while on Topamax. Topamax has been a miracle medicine for me, and so I found your article to be very misleading. Topamax isn’t all bad, it’s more than just a weight loss drug (I haven’t lost any weight) and the side effects disappear after about a month.

    1. I am very glad Marie that is helped you. You are still very young and may not know, and obviously have not felt, the negative side effects.

      The article is not misleading–it could not be. I never took Topamax in my life and have no intention to. It projects facts and not my opinion at all. If there are 100 people taking Topamax and 99 get sick but 1 does well, that does not make the drug any better or information about it misleading. It just means you so far have been lucky.

      Over the past two years I worked with over 4000 migraineurs, a large percent of whom were on Topamax at the start (are not now). The majority have been hurt by that; so far I have not found a single person–other than you whom I never talked to–who actually benefited from it. The article I wrote describes the chemical properties and pharmacological actions of Topamax. This cannot be any more misleading than to say that I am now typing this response on the computer because these are facts. Note that the article does not have any personal opinion but everything written is based on the label and warnings by the FDA here and also here or here and one here. There are a lot more only it takes time to find all warnings plus some are in the article itself. You can find the mechanism of action here that I translated to easier to understand common language in my article.

      There is not a single sentence in the article about Topamax that is misleading; every single side effect, warning, and permanent damage is taken from scientific sources.

      Now you have the right to not believe any of that. However, knowing how the pharmaceutical industry and the FDA prefer to not reveal negative side effects as long as possible, if they reveal that there is something damaging about the product, that means “oh boy! It is gonna hurt people.” Both big pharma and the FDA prefer to not state any negative consequences unless it reached a certain threshold of magic number that seems to be pretty large. Thus the fact that they did reveal negative consequences and side effects, should be a warning for you!

      Your brain has not yet developed fully at age 17 and all voltage gated calcium channel blockers (not just Topamax but others like Gabapentin or Pregabalin) are brain degenerating drugs by the very mechanism of their working: blocking the most critical voltage gated channels.

      As for the general name for Topamax among migraineurs is “Dopamax” becuase it makes everyone feel like that. You may not feel any of that but it does not make it any safer for you. After all, human brains work based on the same ionic channels for every human. Its mechanism of action disrupts a critical ionic channel and prevents it from working. The outcome of that cannot be good, no matter which way you look at it.

      Mind you people with primary migraines are able to prevent all their migraines without the use of any medicines by observing some tricks of the trade that a migraine-brain requires. So far, migraineurs workign with me with primary migraines have all stopped all medicines (both preventives and abortives) and have no migraines. I personally have not even taken a simple OTC for several years though I used to have migraines 5 days a week and 2 days of fog for rest. I had migraines for over 30 years. It is great to be migraine and medicine free for life! You may want to try that some day!

      Angela

  47. Hello! A little back story.. Or it might be a long back story..

    Several years ago I had surgery on my foot and ever since I have had horrendous chronic pain. I was prescribed narcotics and I’ve been taking them for well over 5 years. I have had severe migraines for about that same time, probably longer. I don’t remember not having migraines. I’m 45 years old. I was prescribed Topirmate and Verapamil. Over the last few years I haven’t really noticed “side effects”. I just thought this is how I am. I thought I wasn’t able to structure sentences, just getting old.. The last 3 years I have had horrible pruitus, slowly getting worse as each year goes by and it’s now unbearable. I thought it might be my pain medication but I went off of that and I still have the pruitus.. So what could it be? I’m now finally researching my other medications and came across your blog. I hope I figure this out, I hope it’s reparable..

    Thank you for your research and time.

    Tina

    1. Hi Tina,

      Some of these medicines leave permanent damage after you stop taking them. There are several people in my migraine group who ended up with permanent damage. Some of the permanent damages are actually listed now on the prescription label Topamax.

      Verapamil is an L-type voltage gated calcium channel blocker, which is very specific to the heart. It is used in the treatment of hypertension, angina pectoris, cardiac arrhythmia and cluster headaches. It is also used for migraine but only as a vasodilator (relaxes the walls of blood vessels), which for most migraineurs is actually counter productive since they usually have low BP. As a voltage gated calcium channel blocker, it prevents proper firing rhythm for your heart–although not stated among the side effects, it may cause QT interval changes (how fast your heart’s voltage recharges to pump again). Side effects of Verapamil: headaches, facial flushing, dizziness, lightheadedness, swelling, increased urination, fatigue, nausea, ecchymosis, galactorrhea, constipation, gingival hyperplasia (increase of the size of gums over the teeth on the mouth).

      The biggest problem I found with Verapamil is when it is prescribed to migraineurs, who normally initially have low BP, is that their BP skyrockets if they try to stop this medicine! To stop this medicine, they need to be switched to a beta blocker (also heart pill but not L-type voltage gated calcium channel blocker) first and then taper off that to prevent the increase in BP. Not sure how you quit!

      Not sure if you have low or high BP now but stopping Verapamil has likely caused some trouble as a result of it being a voltage gated calcium channel blocker for the heart the same way as Topamax is a voltage gated calcium channel blocker but that is a general type so it blocks both brain and heart. Thus coming off both can cause some permanent damage for both your heart and also your brain. Since the permanent damages are minimally listed and it would take weeks to search the adverse reaction database at the FDA for others having the same permanent damage, I will not do that. Your doctors will likely know less than you know now so don’t even ask.

      To repair brain damage is actually possible only it is a time consuming effort. One of the most important part of brain cells damaged by Topamax is the myelination of the axons–this is the white matter in your brain and is made of cholesterol. So increase the amount of cholesterol you are eating so your body can put that cholesterol to good use. Even the latest update of the USDA guideline suggests eating an egg a day so have some! make sure you eat the yolk!!! That is the cholesterol. I am workign on an article on cholesterol that will be helpful for you but it is a very complicated subject so it will take a while before it is up here but keep on looking back!

      Best of luck for your recovery!
      Angela

  48. Several years ago, I was prescribed Topamax to help with migraines. I’m sorry but a lot of time has passed and I can’t remember the dosage. Within a week, it turned me into a paranoid schizophrenic. At first it just seemed to make soda taste as though I were drinking liquid metal. Other foods began to taste odd as well, which I believe is one reason people lose weight on this medication. Topamax may also possibly have eliminated my appetite.

    Rather quickly, I began to feel strange in my head. Hard to describe–like there was pressure inside my skull. Soon detachment from my surroundings followed. The feeling of not really being “here” was intense. Going food shopping was a nightmare. I gripped the handle of the cart to feel anchored, and yet still the sensation of walking two feet above the floor persisted. People seemed to be staring at me. I would quickly throw necessities into the cart and then endured the checkout, where I tried to conceal my nervousness.

    Worse was yet to come. At home, “cowering in the corner” went from being a phrase to a reality. When my husband had to go to work, he had to endure my begging him not to leave me at home because “something was going to happen to me”. Recognizing that these new symptoms were linked to Topamax, he called the doctor and thankfully I was weaned off this horrible medication.

    It will forever remain on my lists of drugs I cannot take. There is one positive, however, that came out of my experience. Paranoid schizophrenia is no joke. The world becomes a frightening, alien place where unknown dangers lurk around every corner. I gained an empathy for people suffering from this devastating mental illness, and will not tolerate those who make fun of anyone enduring this living hell. It is a world I do not want to enter ever again.

    There is something terribly wrong with this medication.

    1. Very sorry to hear Sharon what you went through but glad you saw how bad of a drug it was. There are many things wrong with that medication (and others like it, namely voltage gated calcium channel blockers). In my migraine group you will find every single member either already has come off Topamax (and all other medication! Whatever they were) or are in the process of coming off of them. I particularly feel very concerned when children are placed on this and similar drugs that don;t let their brain develop and, instead, cause degeneration.

      If you need support for your migraines without the use of any medicines, my research has worked for over 4000 migraineurs. They are able to prevent their migraines and if there is a runaway migraine, they can abort it and do so without the use of any medicines at all! You are welcome to join our migraine group where your participation is required or contact for private consultation where your data is private; use the contact form please.

      In case you want neither only want to understand what my research is all about, I have several academic articles and a book on the matter. You find the first article here, the second here, one on a related subject here, the paperback book here and the e-book here.

      Hope you have a great day!
      Angela

  49. Hi, I am currently taking topamax and it has been a life saver for seizures. Your post is very misleading. Wikipedia is not a reliable source for information, first of all especially. Also, listing a page long summary of side effects does not mean a drug is bad. Every drug ever created has just as many side effects. Many of those side effects are so rare, I mean .001% even. The most common side effects for topamax off the top of my head are parasthensia (tingling of hands and feet), weight loss/loss of appetite, and fatigue/tiredness. Those are the top side effects. Of course there are scary side effects. Advil also has scary side effects a page long, does that mean we shouldn’t take it? I don’t think it’s fair to paint topamax as an evil drug when for some people it may be a life changing drug. Your post was very misleading and unprofessional. It’s main classification is also not a weight loss drug. It can be prescribed for that purpose now though. It is mainly anticonvulsant. They (the science community) also are not 100% on the mechanisms of the drug but they BELIEVE topiramate works somehow by a voltage channel influencer as well as influencing gaba. If these peer reviewed articles did not specify how topamax worked because they did not know the mechanisms how can you state exactly how the drug work with certainty? This is not okay to be posting online as fact.

    1. Dear Anna,

      Thank you for your post. I am glad to hear that Topamax is workign for you. You have seizures. I understand that Topamax (originally a diet pill by the way that was pulled by the FDA for some time because of the side effects!) may work for some seizures (as an adjunct seizure medicine and not a sole medicine) but note: it carries black box with several warnings! Some of the adverse effects are permanent. Here is the list of warnings from the FDA – this is from 2011. Since 2011 there were many more warnings only it is impossible to find anything at the FDA website in the short time I have available for a response:

      WARNINGS AND PRECAUTIONS——————–
      •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)
      •Oligohidrosis and hyperthermia: Monitor decreased sweating and increased body temperature, especially in pediatric patients (5.2)
      •Suicidal behavior and ideation: Antiepileptic drugs increase the risk of suicidal behavior or ideation (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)
      •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 (5.5)
      •Fetal Toxicity: TOPAMAX® use during pregnancy can cause cleft lip and/or palate (5.6)
      •Withdrawal of AEDs: Withdrawal of TOPAMAX® should be done gradually (5.7)
      •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 (5.9)
      •Kidney stones: Use with other carbonic anhydrase inhibitors, other drugs causing metabolic acidosis, or in patients on a ketogenic diet should be avoided (5.10)
      The most common (>5% more frequent than placebo or low dose topiramate in monotherapy) adverse reactions in controlled, epilepsy clinical trials were paresthesia, anorexia, weight decrease, fatigue, dizziness, somnolence, nervousness, psychomotor slowing, difficulty with memory, difficulty with concentration/attention, and confusion. The most common (>5% more frequent than placebo) adverse reactions in controlled, migraine clinical trials were paresthesia and taste perversion (6).

      INDICATIONS AND USAGE 1.1

      Monotherapy Epilepsy
      TOPAMAX® (topiramate) Tablets and TOPAMAX® (topiramate capsules) Sprinkle Capsules are indicated as initial monotherapy in patients 10 years of age and older with partial onset or primary generalized tonic-clonic seizures. Effectiveness was demonstrated in a controlled trial in patients with epilepsy who had no more than 2 seizures in the 3 months prior to enrollment. Safety and effectiveness in patients who were converted to monotherapy from a previous regimen of other anticonvulsant drugs have not been established in controlled trials [see Clinical Studies (14.1)]. 1.2

      Adjunctive Therapy Epilepsy
      TOPAMAX® (topiramate) Tablets and TOPAMAX® (topiramate capsules) Sprinkle Capsules are indicated as adjunctive therapy for adults and pediatric patients ages 2 to 16 years with partial onset seizures or primary generalized tonic-clonic seizures, and in patients 2 years of age and older with seizures associated with Lennox-Gastaut syndrome [see Clinical Studies (14.2)]. 1.3

      Migraine
      TOPAMAX® (topiramate) Tablets and TOPAMAX® (topiramate capsules) Sprinkle Capsules are indicated for adults for the prophylaxis of migraine headache [see Clinical Studies (14.3)]. The usefulness of TOPAMAX® in the acute treatment of migraine headache has not been studied.

      Thus now we have reached the critical part. Let’s talk about migraine not just seizure (my original article you are commenting on here is about migraine treatment with Topamax and not seizures): studies have not demonstrated that it is useful for migraine treatment. Yet the majority of the migraineurs who I work with are prescribed Topamax. Since it has not been studied on migraineurs, the list of adverse reactions from Wikipedia, which by the way is updated by scientists like me all the time, is quite accurate based on MedWatch reports of adverse reactions that people report–you can get your own report by downloading the database and look for the specific drug in question and look up the types of complaints. I understand that not everyone does that but I do!

      Now in terms of what Topamax does: it prevents neuronal firing systemic in your whole body. While it may stop your seizures, it does so at the price of reducing your receptors in your brain. It is a drug that causes degeneration in the brain! While you may look at your symptom and state “hey it is working”, what you don’t see (or don’t want to see) is that it is systemic all over your brain affecting every body part: temperature, how your heart beats, how you blink. It left many migraineurs who just took Topamax for a short time with permanent brain damage! It may be a fair exchange for you against seizures (unless of course there are better ways to manage seizures and there are!). The decision is yours. But note that by having it work for you does not make the medicine any less evil to millions whose life it destroys. It is very easy to look at one case and make a judgement but we need to look at all possible cases for which we have data. Based on that it is an evil drug!

      I wish you good luck!
      Angela

  50. Hi, I’m 16 years old and I suffer from migraine headaches. It started when I was in 5th grade; I am currently a junior in high school. I learned to deal with my migraines that occurred maybe every other month and knocked me off of my feet for the day. However, my “dealing with it attitude” changed when I had to be hospitalized twice when my migraine took over my body. I’ve never felt anything like it before: it woke me out of my sleep, I felt numbness beginning in my mouth, then tongue, and it traveled through out my body. My speech was slurred and I couldn’t speak no matter how hard I tried. I woke my mom with a flashlight, and she took me to the hospital. This new glorified migraine (I did not at the time know what it was) caused numbness, speech impairment, lack of coordination, and an inability to think property. I was so scared. I put deodorant on my lips thinking it was Chapstick before we left for the hospital! And then cried when I couldn’t figure out how to open my drawers to put on suitable clothes. After this incident, my mom and I visited my neurologist. Long stor short, she told me this occurrence is actually an extreme form of a migraine that happens, and it could get worse. She informed me that too many migraines can cause brain damage and she didn’t want me dealing with these occupances anymore. I was prescribed Topiramate. The dosage began at one 25mg pill in the am. This increased gradually overtime. Now I have been taking one in the AM and two at night. Sure enough, I have not gotten a serious migraine since the incident that took place a year ago. If I feel a minor migraine coming on, I take a Rizotriptan tablet that was also prescribed for “just in case” measures I guess you can say. And I have been free from the distress of migraines. However, these past three months of been troubled with abdominal pain, constipation and a lot of gas. This particular trouble lasted for two weeks in December. I didn’t know what was wrong, but now I am wondering if my symptom of stomach rumbling, gas, and mild constipation that still continues three months later is from Topirmate? Also, I recently have suffered three times from the same recurring cold that turns into a sinus infection, which translates to a cough and plenty of mucous. It’s not fun! I have a random anxiety attack (never have had anxiety or depression before, was in school at the time, had no reason to have the attack whatsoever since I was just sitting at my desk) on December 8th before my stomach problems ever began. I went to the doctors and they said “it was probably just a minor anxiety issue, we all get them.” I’m a good student in school and take vigorous classes. This year has been especially rough because I have had such a hard time concentrating! On tests, lack of motivation to do homework or anything at all, and it’s been especially hard for me to do math (or to compute and think in general). I haven’t told my mom yet that I believe maybe Topiramate is why I’ve been feeling this way for so long and dealing with a new, somber life-style. But at least my migraines are gone, right? The truth is, yes this medication solves the scary migraine problem, but further complications have emerged in the process. Symptoms that greatly affect who I am. I am not sure I believe the benefits outweigh the costs in this situation.

    1. Hi Vanessa,

      Very glad you contacted me. I deal with many migraineurs who are as young as you (and even younger via their mother or father or both). Some of the children have grown up since and are now in college. That was only possible becuase they followed the Stanton Migraine Protocol® and after their migraines were completely gone, were able to reduce and quit (with doctor help) Topamax, which blocks your concentration. What Topamax does to the brain of an adult is different from what it does to the brain of a child.

      The brain of an adult is fully developed so if Topamax reduces the numbers of “synapses,” meaning the way brain cells send messages and hormones (neurotransmitters) to communicate, the problem is not a major one albeit some migraineurs have permanent brain damage from it while taking it and even after they quit taking it. The FDA label for Topamax lists permanent damage to brain (for adults).

      Now these were adults. For children, whose brain is still developing, the damage is much more complex and a lot more serious. Although this article is not specific to children, it is specific to the use of Topamax for epileptic seizures, which is typically why this medicine is prescribed to children. As you can see, the permanent damage is scary. One of the biggest problems using Topamax for children whose brain is still developing is that if it reduces the number of synapses even in developed brains, what does it do to brains where the synapses are supposed to develop in numbers? Does it allow synapse development? The answer is pretty clearly: NO. That is a problem. That is why you find you cannot focus and concentrate.

      The type of migraine you had is not rare–I have many migraineurs in my migraine group with very similar migraines. There are migraineurs with full blown hemiplegic migraines in which half their body may get paralyzed temporarily. Your migraine is not nearly that bad (so far) but left untreated (in terms of the cause) they may become. Topamax stops the brain’s high voltage calcium channels and the brain cells are not able to release their neurotransmitters. This means your brain cannot function well. Topamax is systemic, meaning it affects your whole body and not just your brain. Your heart also functions on voltage and Topamax interferes with that as well.

      The cause of migraines is well documented in this academic publication that is a review of previous findings and beliefs and most recent findings and new understandings. You and your parents should read this article–it is written by me and in a relatively simple language, trying to avoid academic jargon as much as possible. It will help you see that migraines can be prevented and also treated completely without any medicine. I am a migraineur and can prevent all migraines. You need to understand that migraines are genetic. Migraine brains are different from the brains of people without migraines. The energy requirements for a migraine brain are very different from the energy requirements of a non-migraine brain. You also need to understand that sugar is poison for migraine brains and they need more electrolyte and in a higher salt concentration.

      You need to change your diet and your entire lifestyle! It is not easy but then it is easier than handling and living through a single day of migraine pain. Anxiety is brought on by sugar. Sugar activates dopamine in the brain (same as street drugs) and when sugar burned up, adrenaline is released, causing your anxiety. Stopping any form of sugar (and sugar substitutes) including honey, all syrups, Stevia and any other types of so called “natural” sugars will help you remove your anxiety.

      If you need more help, consider contacting me at Stanton Migraine Protocol® or join my migraine group.

      I wish you the best,
      Angela

  51. I have epilepsey and on keppra. I’m glad I have not been subjected to this drug. I hate to take keppra and do not use the usual dose. It causes me to many side effects. Drugs have become harmful. I understand they are supposed to help. I find many people complain more than praising these so called cures.

  52. Good day, I am Epilepsy Sufferer on Topomax 100mg in the morning and 200mg at night, for the last 4yrs however it hasn’t stopped my seizures and my doctor also haven’t sent me for any bloodworks, I believe we do need to test for regular bloodworks not sure which ones though, could you assist? I do have a lot of problems, with memory, hairloss, skin rash, swollen glands, water retention, cough, no sweating and also on thyroid tabs for under active thyroid, don’t loose weight actually picking up weight…………chronic heahaches, sleep apnea and sore joints. Could you please assist. I do so appreciate your feed back. Regards Marina love from South Africa.

    1. Dear Marina,

      I am very sorry to hear about your story and I must say your symptoms are very typical and also that Topamax does not work as intended. First let me say that Topamax is a secondary medicine for seizures and is not supposed to be used alone for epilepsy control at all. But all the side effects you already have indicate that even as a secondary support medicine, it is definitely not for you. You have a few options though. You need to visit your doctor and discuss all of the following options with him.

      First I want to explain what may cause your epileptic seizures and then the options:

      Epileptic seizures may have several causes. One of them is the lack of proper “insulation” around the neuron’s axons, the part that carries voltage. Think of it as an electrical wire where the insulation is broken. If many electrical wires are side by side in a liquid that transmits voltage (in your brain these are neurons in electrolyte), the voltage leak creates a voltage shock that sends voltage all over the place. Such fast chaotic electrical shock is a seizure. Epileptic seizures caused for this reason are frequent. The solution is to insulate the electrical wires (the axons of each neuron). Insulation in the brain is made of cholesterol. Most people placed on low fat and cholesterol lowering medications lack enough cholesterol to insulate these wires and that can lead to seizures, like yours, or memory loss and general brain damage.

      Another cause of epileptic seizure is diet insufficient with proper minerals that provide a balanced electrolyte for the neurons in the brain. There is order in the brain and neurons send their messages by creating and passing on neurotransmitters. They can only do so if proper number and size voltage can pass through to open and close “gates” that take in nourishment and dump out toxins. A diet high in potassium and low in sodium (salt) can cause such seizures–this has been shown in Petri dish in lab. This is easy to remedy since one needs to eat such that voltage is possible to attain properly in the brain. Topamax actually prevents voltage in the brain for neurotransmitter release and so your symptoms of adverse effects represent the lack of neuronal communication and voltage rhythm among neuron.

      A third cause is possible cyst or tumor pressing on a brain region that is blocked and thus cannot communicate. Other regions that are healthy then send waves of voltage to try to zap the damaged area back to action.

      In all of these cases there is a solution.

      For case one where the insulation (myelation) is damaged, and which may be visible by MRI, the solution is provided by the Ketogenic diet. It is thousands of years old and was the only method used very successfully until the 1960’s brought the “pop-a-pill” attitude. It is still used today by medical institutions but now only after all medicines failed–this is sort of backwards. I would think that I would rather try a diet first and if that fails I may go for a medicine. So my first recommendation is to discuss with your doctor the chance of being placed on a ketogenic diet. Dr. Perlmutter is a leading brain expert in this field. here is a link to his foundation where you can learn more: http://www.perlmutterfoundation.org/

      For the second case of seizures when there is no myelin damage but there is a chance that your diet is out of balance (you are vegetarian, vegan, eat lots of carbs) then you should join my migraine group. Though you have no migraines, many new members in the group now have no migraines but suffer from other metabolic conditions. They joined to benefit. It may be of benefit to you as well: https://www.facebook.com/groups/219182458276615/

      The third cause needs surgical intervention. I am not familiar with your history and cannot advise you in any which way. These are the three prominent options though there may be more, such as brain damage by injury causing seizures. But now at least you may have a better understanding of what causes seizures and you may be able to go after the cause and replace Topamax with something more effective, be it diet or medicine or both.

      WARNING: Under no condition should you stop or skip any dose of your Topamax or make any changes to it without your doctor’s knowledge and full approval. He/She will need to provide solutions that work for you.

      Best wishes to you!

      Angela

  53. I may not fully understand all the medical terms explained here but there’s one certain thing I learned in this article, Topamax is addition to many dangerous drugs that we should watch out for. It’s actually my first time to hear the dangers of using Topamax. Thank you for this Dr. Stanton!

    1. You are very welcome Kelly. I too often wonder why the dangers are not mentioned–they are listed on the “processional” part of the labels that are carefully usually discarded by most pharmacies before you receive the medicines! Glad the article opened your eyes and perhaps will make you more alert every time you are prescribed a medicine!

      Best wishes,
      Angela

  54. Angela,
    My 14y/o daughter suffered horribly with Chronic migraine from 08/28/14-02/21/15. She began taking Topamax with a gradual increase to 75mg’s. The side effects she originally experienced were extreme dry mouth, insomnia, appetite loss/weight loss (appetite loss is still an issue but her weight has leveled off at 115lbs (5’6″). Recently her menstraul cycle has become very irregular. She started her cycle at age 12 and had always been very regular. I also suspect she’s anemic. I’m taking her for a CBC Monday with intentions of starting her on an iron supplement. That being said, AnnaSophia, is terrified of even a lowering of the dose of Topamax. We are working on that issue w a therapist. She has said, many times over, she would much rather deal w the side effects (even when they were at there worst) then stopping Topamax. I’m interested on your thoughts regarding her menstraul cycle. Additionally, I’d love to read your book and join your migraine page.
    Thanks for any information,
    Maria

    1. Hi Maria,

      I am very sorry to hear about your daughter! I completely relate to her fear since if I had no alternatives I too would choose a terrible drug over a migraine but in my group https://www.facebook.com/groups/219182458276615/ you will find several parents with children, some younger than your daughter and some older. There are two cases in specific I would mention to your daughter. One case in which the daughter (now in the group) was a junior or senior in high school and was really concerned because of the effects of Topamax she was not able to focus on her tests and she had a university in mind! So her mom joined and asked for help. We first put her on a complete change of diet–something you will see details of in the group–and then she slowly tapered off her Topamax over several months–I do not remember the exact numbers but her mom is also in the group and she can guide you. She is completely medicine free and migraine free–pending those migraines that she gets when she is fighting a bug or breaks the diet guidelines. Since then she graduated with honors from high school and was accepted to her dream university where she started earlier this year.

      The second girl is older–I believe she is in graduate school already. It was her mom (again, it is usually the moms or sometimes dads too who join) who asked for help and slowly we resolved that problem as well. I think in her case it was a faster process but she was a bit older.

      There are parents in my group whose children are very young. At some point there was someone with a 2-year old. There are children now I believe 8 years or older (or maybe 5 now) who are placed on this horrible drug and it retards the growth of the brain. It cannot be stopped without a complete lifestyle change so she will need to agree to that and take is very seriously! Please join my group–it is a closed group so the information is not visible to the public. You will be able to exchange information with the two moms–one is leaving the country in a few days so she may not be available but the other is there to tell you how it went. 🙂

      I know we can resolve the problem but it requires commitment and willpower on the part of your daughter! <3

      Looking forward to see you (and perhaps even her–it is a child friendly zone–in the near future.

      Best wishes to you both,
      Angela

  55. Great and timely article for me. The way my brain has been behaving lately I feel like I have early dementia and I am pretty certain Topomax is the cause, I have been on it now for maybe 6-7 years but only a low dose of 100mg day. I still get migraines but they are manageable, with only the odd one breaking through being a level 10. I used to be really sharp and now I can’t express a coherent sentence at work, I feel like an idiot. I can’t stay awake, I get dizzy, I bump into walls, I forget my co-workers names – and the list goes on. The only lifestyle change I can make is to quit work, however I have decided to at least cut down to part-time in the New Year and try and go off T. I really hope my brain recovers, because I have read blogs where people say theirs hasn’t. As for other side effects, it kept my weight off to such a degree for so long I have now been diagnosed with osteoporosis (no family history) at the age of 56. So I’m not sure if it’s thanks, or thanks for nothing, Topomax.

    1. Dear Cathy,

      I am very sorry to hear what happened to you and also must say that your story is unfortunately very typical. The side effects you list are all totally expected but need not be permanent once you stop the medication. For some people who do not support the brain function while coming off a drug like this all of these may remain permanent. Those who build up brain cell support usually have a much better outcome and only have one or two permanent effects if any. Many people in my migraine group have stopped Topamax with no remaining adverse leftover effects, only a couple have some permanent problems but in time those may also disappear.

      Why don’t you join my migraine group and follow my cell enhancement protocol that others use very successfully to prevent their migraines. Most have already stopped all medications and not just Topamax! I will write about other migraine medications here in later articles since many migraineurs join with over 5 types, some with over 10 meds and several with over 20. Some of the medications have strong interactions with each other that can be fatal. I advise them all with detailed analysis like this article on the interactions and duplication. They take the printout to their doctors and eventually stop them all. With the protocol they remain migraine free. 🙂 Try it Cathy!! We welcome you to our group.

      Hugs,
      Angeka

  56. I have suffered from migraines since I was a teenager (nearly 35 years) and in that time have tried many different prophylactic treatments. I have been on/off Topimax over the years and am currently taking 100mg twice daily, which along with other measures, has taken my almost daily migraines down to approx 9/10 per month. I have never been comfortable taking the drug but reading this article has made me more determind to stop as soon as possible. I have just joined your group and am well aware that I need to make a number of lifestyle changes before I will be able to do this but I am looking forward to the challenge.
    Mandy

  57. Great article on Topomax! Women need to rise up and make their presence felt by the medical, pharmaceutical and insurance industry. They lead men 3:1 in Migraines, tension headaches, fibromyalgia, chronic fatigue, poor sleep, and MS; and they are 2:1 Over men regarding Alzheimer’s and dementia, all neurological disorders and no one has to examine them for a lifetime of a assaults (1000s/Day/Night) on the chief sensory nerve of the brain that supplies every structure in the mouth. Women are 9:1 more likely to be physically or sexually abused, and 5:1 more likely to have a dislocated (clicking or arthritic) jaw joint. The auriculotemporal branch of the trigeminal nerve system (TNS), the chief sensory nerve of the brain passes between these two bones that are now capable of assaulting this nerve system 1000s of times per day and night from multiple sites, and No One is held responsible for not examining women for this problem. It’s comparable to having the cord to you main omputer caught in a doorjamb for a LIFETIME. The teeth (all connected to the brain by the TNS) are exposed vertical support columns in the skeleton of the head that can be altered to Prevent and stop a lifetime of assaults on this nerve. If we used 3D imaging of the bite to to stop a lifetime of assaults on the chief sensory nerve of the brain how many unsolved neurological disorders that occur late in life could we prevent, not to mention a lifetime multiple drugs just as detrimental as Topomax. Email me, maybe we can end this 75% female epidemic together, and I can help explain the hormone connection. I’ve been treating migraines and chronic pain successfully for 40 years, and as a result I just discovered much more information regarding lifelong health and mental clarity I did not know when I published my book just a year and a half ago. Can’t wait to hear from you. Hundreds of millions are suffering needlessly every day, 27 million women in America alone, and that’s just migraines. This female epidemic is massive! Add in the men and we have millions more. There is a documentary and a trailer on the website, but the new discoveries are even greater.

    1. Dear Richard,

      Thank you for the invitation to work together. I most certainly will send you an email. I also have a book that I published about a year and a half ago that is extremely successful (Fighting the Migraine Epidemic) in stopping and preventing migraines. The thousands who have used the book and joined my group or contacted me in private about the protocol are all either off Topamax (and the other mean drugs) or are in the process of coming off. They are migraine free with a rare oops of migrane when they skip on the protocol. I am looking forward to working with you.

      Best wishes and talk soon,
      Angela

  58. I’ve was on 200 mg for at least 7 years. And those where the best migraine free seven years of my life. But I did start having some serious side effects my doctors felt were due to the Topamax. So against my wishes I was taken off & the migraines came back worse then ever. Even getting Botox every 3 months did not control them to a level were my live was normal and predictable. So finally last month my doctor agreed to put me back on Topamax 50 mg a day and I’m finally feeling like my migraines are getting under control. He’s agreed to up my dosage 100 mg at my refill time. Even though the side effects are there, not suffering with migraines 3 or 4 times a week fars out weighs it for me. Plus when you have so many & take so much abortive you run the risk of getting MOH. We all know those aren’t fun. So I’m proud to say I use Topamax!!!

    1. Dear Becky,

      I am sorry that you had to go back on the drug but I understand that simply stopping a medicine without changing your lifestyle and without understanding what causes your migraines, you had no choice.

      But now we understand a lot more about migraines. We can see in the scanner what is causing them and how. I have a book explaining what it is and why, and a protocol that I provide to members of my FB group free or under private consult for a small fee to cover costs. The method I use examines your lifestyle for what causes your migraines specifically. Everyone goes through this evaluation process after which they often have quite a few things to change. Many do not drink enough water; a large number of them eat a ton of sugar or sugar substitutes or simple carbs or smoothies that all disrupt electrolyte. Many are vegetarians or vegans and thus eat carbs and potassium without salt all day.

      Potassium is a diuretic and causes seizures on its on if too much is eaten.

      In general all of what I just wrote is 100% preventable. Once they change as per the analysis, their lives change. Stopping medications then is a piece of cake since they have no pain!

      So perhaps you should try to change your lifestyle to make it more compatible with migraine brain with its multiple sensory organ receptor connections and heightened sensory organs as a result.

      Instead of being a proud Topamax user, you could be a proud no-Topamax user and have no migraines ever again. I hope you give it a try and read my book Fighting the Migraine Epidemic and join my FB group or contact me in private (my email is in the book) and start a pain and medicine free life.

      Hugs,
      Angela

  59. Great article

    I have been on it 3 years reading side effects I again see how much my problems medication related.

    . If I was a top rate athlete my resting heart rate be perfect but I’m now 40bpm it’s getting so slow. No wonder my cfs isn’t great sodium helps n blood pressure better. It was thought my throat issues all medication related.
    List goes on Angela. But I have to do this slowly ❤️ my vision disturbances even before being diagnosed with cataracts two days ago. Again believed to be medication related.

    Ps language expression thing a few there I thought this all more medication effects now not head injury
    There’s too many side effects up there I have its very concerning. Tops mac making me ill and doctors being adviced that it’s to come off it still to fast is dangerous and not responsible. If only I had known about the Stanton migraine protocol before being given topamax. I just hope there is not too much permanent damage from topamax and all the other medication I’m on.

    The information given with medication is inappropriate explains little even though it warns of some it still doesn’t explain,

    This article should be with every topamate box.

    1. Dear Alex,

      I am very sorry to read what happened to you. I don’t know how long you have been on Topamax but not everyone has permanent damage. The Stanton Migraine Protocol is a cell recovery system so you may see all problems improve with time. The longer you are on the protocol the better, provided your doctors allow you to stop taking Topamax. Please ask them and my protocol and I will help you get off easier. 🙂 Looking forward to helping you.

      Hugs,
      Angela

      1. Angela because of you I am no longer bed bound, I will always abide by the protocol ❤️ And regardless I will come off my medications preferable with my doctors support but I will come off it at a safer pace than they recommend, over 3 years at 150mg twice a day although has been higher but I take so much else it’s crazy but I have come off so much else, I feel like my brain has begun to wake up think, moments of creativity.

        I’ve been on pregabalin 6 1/2 years tremadol morphine baclofen sertralin years on um the ones for infections can’t think ciprof something beahistine, steroids, sorry brain fog, levothroxine, quetiapine, chlorpromazine was given for insomnia believe it or not I’ve stopped that, my body is still in shock first from the accident now from the medications this really is to extremes I’m only remembering a hand full.

        I have stopped much

        I have to say new go is on my side and happy for me to reduce and now realises it has to be done in extreme caution slowly I am extra sensitive to change, I’m not sure if broaching it that it must cost him a lot me being on all the meds seemed to get his attention and he wasn’t hesitant in no wait till you see the doctor who prescribed you. He understood I was on your protocol and it was helping and I needed to be free of these meds.

        So I thank you again Angela from the bottom of my heart, for your passion and diligence in your work. ❤️ Much respect . Alex

        1. I am so glad Alex that you have joined our group many many months ago. We certainly helped you achieve your amazing miracles with the protocol and the much love and care in the group by everyone to everyone and especially to you! <3 We will help you through your reductions once your doctor approved them and create a schedule for you that is flexible and your body can deal with it since we know your problems perhaps better than anyone else. <3

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