Topamax Revisited

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topamax brain disruption
In September 2015, I published an article called Topamax: The Drug with 9 Lives about the myriad of side effects associated with Topamax. Since then, the article has received thousands of reads and over 180 comments. Given the traffic, I thought an update was in order. Had there been any new indications for which this drug was prescribed? Were there any new side effects recognized or any more research on the drug in general? The answer to each of these questions is yes. Since the last publication, the drug has become even more wildly prescribed with additional indications (10 thru 16 are new). Additional side effects are being reported and the research on mechanisms is growing. Below, I have updated the original article to include the new information.

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.

Updated list of conditions for which Topamax is prescribed:

  1. Obesity1
  2. Seizures1
  3. Migraine1,2
  4. Impulsivity3
  5. Diabetes with nerve damage4
  6. Bipolar disorder5
  7. Depression6
  8. Alcohol addiction7
  9. Fibromyalgia8
  10. Periventricular leukomalacia9
  11. PTSD10
  12. Essential tremor11
  13. Bulimia nervosa12
  14. OCD13
  15. Idiopathic intracranial hypertension14
  16. Cluster headaches15

As you can see, there are very few commonalities in the conditions Topamax is prescribed for; some have no connection at all. Does Topamax really treat so many disparate conditions that doctors prescribe it for everything? Topamax is prescribed for many of the above conditions off-label, without sufficient information about the drug effects and without the real informed consent of the patient. I think, off-label prescribing has gone too far.

What is Topamax?

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 dependent sodium channels at once) to achieve what several classes of drugs normally do separately; and thus, with one medicine it affects and damages two circuits that are critical for brain function.

Topamax (an anticonvulsant under the generic name Topiramate 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 or migraine preventing drug. From what I see in several fibromyalgia groups, it also doesn’t work for that.

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 sodium 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 damage4. Personally, I have heard of many cases where it 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 have different serious adverse effects as Topamax (they cause metabolic disorders).

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, hyper pigmentation.

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)[i]
  • 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)
  • Suicidal Behavior and Ideation (FDA warnings update)

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 weight loss). Yet, I see people being prescribed this drug for all types of off-label use that are unrelated to either seizures or migraines. The migraine group I run on Facebook had over 4000 migraineurs pass through and end up without migraines and, of course, without Topamax or other migraine medications in the past over three 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 that is a chapter in my upcoming book—expected date is August 2017. 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. As far as I can tell, the damage is often permanent.

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 neuronal communication via neurotransmitter release. Topamax is systemic, meaning it doesn’t just act on a particular type of neurons but all neurons; it cannot differentiate between voltage dependent calcium channels of the many cells. This means that neurons that are responsible to organize how the heart beats, how the lungs function, how you blink, and how you digest your food 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 a lot of migraineurs who start Topamax stop within weeks (some on day 3) of taking 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

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: it’s hot, cool the body, 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. One of the most often noted adverse effect is the inability to stay on the sun since the body is not able to control its temperature in the heat. 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 with body cooling, which is a pretty basic, built-in automatic motor function. 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 differential is generated between the inside and the outside of the cell membrane to generate action and resting potentials. 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 dependent channels. When these channels are not able to generate the proper action or resting potential, nothing moves in or out of the neuron. By blocking voltage dependent channels, the high voltage needed to release the neurotransmitters is reduced 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 heartbeat, or simply making a decision. I think, Topamax is one of the more dangerous drugs on the market. From what I can gather from the research and my work with migraineurs, Topamax does not appear to work for pain. It only slows brain function. I would not be surprised to see researchers soon showing a connection between Topamax use and dementia. Until then, proceed with caution.

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  1. Sommer BR, Mitchell EL, Wroolie TE. Topiramate: Effects on cognition in patients with epilepsy, migraine headache and obesity. Therapeutic Advances in Neurological Disorders. 2013;6(4):211-227.
  2. Nelles G, Schmitt L, Humbert T, 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. 2010;11(1):33-44.
  3. Navarrete F, Pérez-Ortiz JM, Manzanares J. Pregabalin- and topiramate-mediated regulation of cognitive and motor impulsivity in DBA/2 mice. British Journal of Pharmacology. 2012;167(1):183-195.
  4. Garvey WT. 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. 2013;12(5):741-756.
  5. Geddes JR, Miklowitz DJ. Treatment of bipolar disorder. Lancet. 2013;381(9878):10.1016/S0140-6736(1013)60857-60850.
  6. Campayo JG, Sobradiel N, Alda M, et al. Effectiveness of topiramate for tobacco dependence in patients with depression; a randomised, controlled trial. BMC Family Practice. 2008;9:28-28.
  7. Paparrigopoulos T, Tzavellas E, Karaiskos D, Kourlaba G, Liappas I. Treatment of alcohol dependence with low-dose topiramate: an open-label controlled study. BMC Psychiatry. 2011;11:41-41.
  8. Pereira AG, 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. 2013;154(3):345-349.
  9. Follett PL, Deng W, Dai W, et al. Glutamate Receptor-Mediated Oligodendrocyte Toxicity in Periventricular Leukomalacia: A Protective Role for Topiramate. The Journal of Neuroscience. 2004;24(18):4412-4420.
  10. Andrus MR, Gilbert E. Treatment of Civilian and Combat-Related Posttraumatic Stress Disorder with Topiramate. Annals of Pharmacotherapy. 2010;44(11):1810-1816.
  11. Chang K-H, Wang S-H, Chi C-C. Efficacy and Safety of Topiramate for Essential Tremor: A Meta-Analysis of Randomized Controlled Trials. Medicine. 2015;94(43):e1809.
  12. Hoopes SPR, Frederick W.;Hedges, Dawsom W.;Rosenthal, Norman R.;Kamin, Marc;Karim, Rezaul;Capece, Julie A.;Karvois, Debra;. Treatment of Bulimia Nervosa With Topiramate in a Randomized, Double-Blind, Placebo-Controlled Trial, Part 1: Improvement in Binge and Purge Measures. The Journal of Clinical Psychiatry. 2003;64(11):6.
  13. Van Ameringen M, Patterson B. Topiramate augmentation in a patient with obsessive–compulsive disorder. Journal of Psychiatry & Neuroscience : JPN. 2015;40(5):E31-E32.
  14. Çelebisoy N, Gökçay F, Şirin H, Akyürekli Ö. Treatment of idiopathic intracranial hypertension: topiramate vs acetazolamide, an open-label study. Acta Neurologica Scandinavica. 2007;116(5):322-327.
  15. Láinez MJA, Pascual J, Pascual AM, Santonja JM, Ponz A, Salvador A. Topiramate in the Prophylactic Treatment of Cluster Headache. Headache: The Journal of Head and Face Pain. 2003;43(7):784-789.

[i] This particular adverse effect was listed on the package at the first publishing time but since has been removed. It can still be located in various sites


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  1. Dr. Stanton, do you have guidelines for tapering off of Topirimate? I need help. Pharmacists, FDA and MDs are worthless. I need to get off. My kinesiologist is helping me and identified this as the #1 worst of the worst right now. I’ve been tapering off of Lyrica and Cymbalta also. I have been on Topamax/Topirimate for over 20 years for migraine. The others for almost 5 years for depression and fibro from a trauma life event. I also take imitrex when I still get migraines. Which lately is too often. Former Psych had increased Topirimate to 200mg at some point when he had me really drugged up (klonopin, Abilify, rexulti +) I went CT from those not knowing better. I quit sugar in Oct 2017 and slow tapered. I eat clean. The rest of my story is sad, and happy because I am still alive.
    I’m at 100mg 50/50 Topirimate until now Going to 50 at pm today, per testing with my kinesiologist. What next though? I have been told mixed things on breaking these tablets? What about alternate days? How long do I hold and how long should it take to get off.
    I will finish Lyrica taper after Topirimate and then finish Cymbalta.
    I am grateful to find your articles. Thank you.

    1. Hi Jill,

      Thanks for your post. I do have guidelines but I cannot provide them on a blog–a blog is not a place to give such guidelines. Please join the Stanton Migraine Protocol(R) migraine group where your membership forms a contract such that I can provide you with a guideline that you can apply with the support of your kinesiologist’s support. The group can also give you support while you tapering off and teach you how to become migraine free without the need for any medicines. 🙂 It is a win/win by joining the group. There are three questions at the virtual door of the group. Please make sure you mention you responded to this article. Looking forward to seeing you there,


      1. I was looking for a report I read years ago on the link between Aphasia and Topamax and came across this site. It was a pleasure to read this article and the previous one.

        In my case I took eleven tablets over nine days and my world as I knew it ground to a halt. I have thought for many years that this drug is dangerous and am horrified at how each year it seems to be the new wonder cure for another condition. There is so much risk in how this drug has progressed to be the new cure all it scares me.
        Sadly I see it as a potentially Thalidomide type scenario in years to come.

        I am UK based.

        I had to battle so hard to get help. It took months to get into Speech Therapy and even longer to get the Pain Management Consultant to acknowledge the ‘chain of events’ and refer me to UCH, and then he simply referred me into nowhere and it was picked up thankfully by an Canadian Professor who worked with an American Professor from Kings who specialised in Speech and they knew exactly what had happened and what had caused it.

        They referred me into the National Neurological Centre , and for two years I went up and down as an Outpatient where initially they tried to prove my issues were dementia and then some rare neurological disease. Eventually I came under the care of Professor Warren and the end conclusion was that the chain of events most likely burst a very small blood vessel in my brain and he emphasised that brain scans were only as good as the person who reports on them and some things are just to small to see.
        Strangely though on talking quietly to some of the European Associates/trainees they were very aware of the drug and how dangerous it is.

        Well on the upside I lost two dress sizes in the first two weeks and still years later have zero interest in food. It’s like an enforced anorexia. I have learnt to talk again, and know it will always be inappropriate at time. Word blindness and back tracking on conversation is easy once you realise that people do not listen properly. The cognitive issues are manageable if I make lists.

        Reading and writing remains an issue and hand eye co-ordination is often a problem, but I have learnt to live with my defects with good humour. Tiredness is my enemy as it makes it worse………..but among close friends there is always a competition going to see who has had the most wackiest unreadable text from me.

        Thank you for such a well written article. Yvonne x.

        1. Dear Yvonne,

          I read your story with great familiarity (I am sorry to say that). Not just because it is Topamax you are dealing with but because of the UK medical system. I deal with many migraine sufferers from the UK and I know it is utterly impossible to get help there for most things. I am very sorry to hear about your suffering. I enjoy your humor at the end but I shared a tear with you for that.

          What was the original reason for your starting Topamax?

          It is indeed prescribed for everything from seizures to broken nails to reduce hunger and many more. There is a reason for that. It is one of those medicines that provides no direct treatment for anything specific; it merely closes all doors that may open to prevent anything from going through. Hence the horrible side effects. It inhibits voltage dependent sodium and calcium channels, effectively inhibiting neurotransmitter release, systemically in your whole brain, affecting every single region of the brain, operating everything from temperature maintenance, to speaking, tasting, logic, thinking, talking, seeing, smelling, hearing, etc. It cannot distinguish between areas that may benefit from those that don’t.

          However, if you started taking Topamax for some neurological conditions, there may be hope of recovery–age dependent and also how long you have taken the medicine.

          The brain is an adaptive system and can recover from many injuries, provided the systemic damaging stops and recovery is given a chance. In my migraine groups, there are hardly any members who were not taking Topamax at one time or another–some may not even be migraineurs. The key is to change lifestyle such that it is regenerative to the brain and taper off Topamax.

          The UK has different regulations for this than the US so find out what you can or cannot do. Like, will your doctor label you non-compliant if you taper off Topamax and kick you out? (I heard stories like that.) In the US doctors have no such rights. So look into your rights. Look to see if your doctors would support a program that will help you taper off and recover otherwise–provided you are not taking it for seizures.

          Please let me know. You are welcome to join my migraine group, which is no longer just for migraineurs here.

          Best wishes,

  2. I found your website while looking into my blood test results which have been indicating low sodium levels. I started taking Topamax in 2008. At first it was 50mg daily, then 75mg daily for a couple more years, then in 2013 my doctor bumped the dosage up to 200mg daily. He also put me on Wellbutrin which I took for 9 months before discontinuing it. I went back on SSRI’s in 2017, this time he prescribed Zoloft and also Oxybutynin. Over the last 5 years I have been increasingly sick with various upper respiratory, sinus & ear infections (or so I thought) due to almost constantly running an elevated temperature between 99.2 – 100.00, pressure in my head and pressure & popping in my right ear. For a couple of years I woke up and went to bed with a headache, interspersed with migraines monthly. During that time I was prescribed a few rounds of Levaquin, 1 of Cipro and 1 of Avelox. Even though half the time the doctor couldn’t see any evidence of infection. They also prescribed Prednisone to take along with the antibiotics. I never seemed to get any better, my energy and sense of general well being continued to decline.I was also very dizzy (vertigo effect), I couldn’t tilt or lay my head back without getting nauseous and would even get car sick. I also had a far amount of tingling in both hands and feet as well as restless leg. In October I went to the hospital thinking I was having a heart attack or stroke. While my bp was elevated to 160 I wasn’t having either of these. Although my heart was racing, I was short of breath, dizzy, my left side had a loss of sensation compared to the right with my left thigh being very numb. They did however find that I had inflammation in my brain and a tumor/lesion. I was kept for 3 days and treated with high doses of prednisone. When I got home I felt and acted like I was an elderly recovering stroke patient (I’m 48). I’ve seen 3 neurologists, been tested for every possible autoimmune & had a spinal tap. All my tests come back negative or clear. The doctors say they aren’t sure what’s going on as even the abnormal area on my brain doesn’t look or act like anything they’ve seen before. In the meantime I’ve gone back to the ER 3 times since October feeling as if I was again having a heart attack or stroke, only for everything to be fine. My heart pounds & races, my bp goes from high to low, my temperature goes from hi to low. I’ve been having cold sweats, hot sweats, chills. My eyesight has been affected – very blurry, but will clear up some through the day only to blur again. I have a heavy, weighted feel to my left leg and lower back. I struggle to have the energy to get through a normal day, napping quit a bit. My memory is compromised, I struggle to keep my train of thought. I have extreme anxiety constantly. My husband says my mood is all over the place, crying, angry, happy, from day to day it changes, I know mostly because of the anxiety. Shortly after coming home from the hospital, I quit taking the Topamax, Oxybutynin & Zoloft, pretty much cold turkey because when I took them I seemed to have another ‘episode’ like the one that sent me to the ER initially. The 1st of January and then again 3 weeks later I was treated with 250mg Levaquin and 750mg Levaquin for sinusitis. But was unable to finish the 2nd round of antibiotics because it was also making me feel ‘episodic’ like the other meds did. I’ve seen the articles you’ve published, it seems to me that maybe a serotonin attack is what sent me to the hospital but all the residual effects are from a combination of Topamax, steroids and being Floxed. My question at the point is can this combination cause an abnormal MRI, I haven’t seen where anyone else has had this issue. Where do I go from here.

    1. Dear Suzanne,

      You could very well have had serotonin syndrome–particularly at the time you also had fever–but you managed to survive that and so likely recovered from that. I am certain that all these medicines have left quite a bit of nerve damage–no question about that. Then to top it off you took quinolones, which floxed you–I am certain about that. They flox healthy people with healthy immune system and you were definitely compromised before you even started to take them. Prednisone is also a monster as it ends up in diabetes. So you have a list of what I call “killer drugs”. I am glad to see you can write and think and that you are alive actually! Happy that you are because with proper treatment (nutritional treatment) nerve damage can be repaired. Yes indeed, damage can be caused by these drugs such that it shows up on the MRI. The chemistry is complicated and I don’t want to get this comment be a sleeping pill, but all the meds you toook, some doing opposing things, blocking various voltage dependent channels, block the clearance of junk from your brain plus those nerves that were damaged or died may also show up as such and not yet cleared out of your brain as it is shut down from functioning the way it should.

      Your didn’t mention what the cause of all these medicine takign was–did you have migraines? Fibro? Something else? Do you have now health condition–in addition to all the drug-caused ones? Are you still takign any of these drugs?

      It would be great to get your life back by a change in lifestyle: quitting all grains (not just gluten but all grains), all sugars and sweeteners, all starches, juices, smoothies, shakes, all high glycemic index fruits and veggies. Stick with the foods that are not inflammatory: low carbs and high fat (high animal fat) diet, with moderate about of good quality grass fed, free range animals of any kind and fatty fish. Your brain is over 80% fat and cholesterol, which provide protective functions. If you don’t have that functioning, your brain is compromised. The brain is made from DHA fat–this can only be found in animals. Vegetables have ALA version that converts very poorly to DHA. So start eating meat, fish, take cod liver oil to rebuild vitamin D and DHA. Start a healing diet.

      Best wishes,

      1. Thank you Angela for replying. I started taking the Topamax for migraines, then after having upped the dosage to 200mg daily, I also started having incontinence that I & my doctor thought was due to menopause so he started me on the Oxybutynin.. I now know it was from the inflammation on my brain as I had a marked increase in October when I went to the ER and a huge decrease after my spinal tap, seems it relieved some of the pressure on my brain. I took the Wellbutrin & Zoloft for short term intense stressful family situations. I didn’t intend to stay on Zoloft as long as I did but the situation didn’t resolve and is still ongoing…Within 3 weeks of leaving hospital back in October I stopped taking the Topamax, Zoloft & Oxybutynin, as I noticed a correlation between taking them and recurring episodes of what sent me to the ER in the 1st place…I continued to have flair ups but they were minor in comparison & I got tired of running to the ER every time only to be told they couldn’t do anything, wait for my appointment with a neurologist. But it did at least give me a good graph of all my lab work since they ran it every time…The neurologist tried me on a very long round of prednisone(2months) hoping it would help. Now that I’ve tapered off all the symptoms are coming back quickly and more extreme than before in October. Clearly the doctors I’ve seen so far have not been helpful or knowledgeable on this subject. Would you know of any doctors you could recommend who are familiar with these issues in NC or even Virginia or SC. I’d be willing to travel to the next state if necessary to get help for all this. It’s really impacted my life severely.. I have been looking into your Keto diet recommendations. If you could also recommend which group to join that would be great!

        I really appreciate you getting back to me and all the research/work you’re doing! I called my mom to let her know about your website. She’s been on Topamax as long as I have for migraines also and just started on Wellbutrin the past month. She’s tapering off the Topamax now and holding off on taking the Wellbutrin until she’s off the Topamax.

        1. Hi Suzanne,

          Incontinence is not caused by menopause–millions of women go around without it after menopause–including me. Incontinence is caused by electrolyte imbalance–the water if going through you and your kidneys are not able to push water back in since nothing is holding it in. At the same time, this is also a sign of dehydration. This could have been caused by Topamax, which is both voltage dependent calcium AND sodium channel blocker and sodium (part of salt) then is not able to function properly to form electrolyte.

          A spinal tap that releases pressure in the brain tells me you have some major health concern–perhaps caused by the many medicines you are taking. All these meds and medical treatment for migraines? You really need to read my book on how to prevent and abort migraines without a drop of medicines. This is a link to the 2nd edition that was released a few months ago, which will teach you how. The e-book is only available through amazon but paperback everywhere.

          I would recommend you look into many changes in your life, starting with your nutrition since the wrong nutrition to the person can make or break health! Going from drugs to drugs will not cure a health condition that is likely caused by nutritional mismatch to your body. It is important to ficus on the underlying cause and not on symptoms.


  3. 2nd try posting, first try ended up with a few others in the write for us area somehow. Here goes, and am writing on a Kindle finger picking on tiny keyboard, hoping it doesn’t “fix” anything it doesn’t understand.
    My husband had/has TBI over a decade ago, migraines and constant tension headaches started nearly right away but VA ignores TBI aspect, and he has been on so many meds successively and or concurrently to make life less painful for the migraines, headaches, & other post knocked off a 2 story building type injury things he deals with now. They started him on Topamax about 2 years ago, & his migraines really slowed @ intro dose of 50mg a day, but still had headaches and occasionally taking the only last chance med when he gets that premigraine feeling (1600mg ibuprofen yuk), so a neurologist said wow just double your dose, and suddenly migraines & headaches were gone-happy days.
    Then a few weeks later he noticed a discoordination in one hand (the side he isn’t already slightly paralyzed), and within a few weeks he developed a tremor in that arm, and it sort of dread to the leg eventually. We contacted the VA repeatedly about it but between “that’s not something that topiramate can do” and “I’ve never heard of that” and your doctor has retired and we are still months away from finding a replacement so you can hope for any continuity in treatment…etc it was 6-8 months before we brought him down to 75 mg from the 100 and the tremors never left his arm. Also got all headaches & some migraines back… He did the AT over the summer (DISABLED DOESN’T MEAN UNABLE just means more determined!) and had finally talked with the new doc about tapering off the med while hiking-hiking has always made him feel better so it was a good time to try. So after about 3 months from coming off the med, he has the migraines back at full misery (5 trips to DR from them in about 50 days) and adventures in doc prescribed B vitamin overdose misery he is back off meds and miserable, but now with tremors… oh and finally they’ve done some scans, found he has partial empty sella syndrome (pituitary is squashed), optic nerves are a bit bulged, and now a dat scan suggest parkinsons (which tbi can possibly predispose one to, and I am wondering if may also be possibly partially drug induced, as the only symptom displayed is tremors, which turned up suspiciously after suddenly doubling a med known to most internet info pages on it but not known to the va to cause tremors…dreaded topiramate)…I know the tremors seem to have left the leg since perhaps dropping to 75, and surely since going off, and I keep thinking the energy behind and magnitude of the hand tremors seem weaker some times now…
    Anyway, long story short, I have had it up to my eyeballs, and am going to start spraying this info on the net, because hopefully the info can help someone doing research, or maybe there are others out there who have had similarscissues and we can point to y’all when we try to shove the VA into everything their act together and say “we are not the only ones to experience that, we are not nuts, be responsible for the mess you have caused!”
    … best of luck! If you are interested in his info for research or similar, find us at

    1. Thanks Adda for the horrific story of your husband (and of your family of course). I know of others who got tremors from Topamax so it is not unheard of and similar side effects are listed among the adverse effects. I agree with you. The lack of proper care and understanding about this (and many other) drugs is scary and a lot of people will be hurt unless more information is out there. So thank you for sharing your thoughts here and everywhere else you spread it. You should also post an adverse effect reporting at the FDA, which you can find here. The more people report it there, the louder our voice.

      Hugs to you and to your husband!

    1. Hi Lonneke,

      I liked Grain Brain but I have a preference for another book “Wheat Belly: Total Health”. I found it much more informative and while the Grain Brain is great, I felt that it was pushing very much toward keto. At the time I read that, I was not yet ready for the ketogenic diet so it left me a tad disappointed but the Wheat Belly didn’t try to push me in any direction, only made me see how bad grains were. I quit grains after that book and eventually ended up with the ketogenic diet so I ended up at the goal of Grain Brain anyway–I just found the other book more enjoyable.

      In either case, they both are great book.


  4. I’ve also read that l-tyrosine would be helpfull. Have you heard of it? I would try anything to get back to normal again!

  5. Hello Angela,

    I responded to your previous article about topamax some months ago. Ik still feel like my brain is more numb, not functioning as it used to before topamax (i used 50 mg a day for 7 months in 2016). In this revisited article you speak of possible permanent damage. I’m worried that the damage done by topamax is permanent. Ik tried the ketogyn diet and exercise to recover. But i still find myself in derealisation and slow thinking, numb body. Is your conclusion about recovery from topamax less optimistic then before? Probably hard to say but i wanted to ask anyway! Thanks in advance!! Kind regards, Lonneke

    1. Hi Lonneke,

      Sorry for all the trouble you are having post Topamax. You took Topamax for such a short time and in such a small dose that your recovery outlook is quite positive. Could it be possible that you have not found the right ketogenic diet process for you and hence it didn’t help you? Let me cover the basic steps in the ketogenic diet since there is so much misinformation about it out there–I am working on a book about it.


      1) Before you do anything, you really need to check if you have insulin resistance, especially hypoglycemia (reactive hypoglycemia) in particular, since if you do, you cannot start keto with fasting. Whatever I write here assumes that you don’t have hypoglycemia and you won;t faint from fasting.
      2) Prior to the ketogenic diet, train your body for drinking proper water amount and eating more salt–both of which are essential for the ketogenic diet. To calculate how much water you need, take 55% of your weight, divide that by 8 to get it in glasses, and add at least 1 extra glass to that in keto. So if you weight 150 lbs, that is 150*0.55=82.5/8=10.313 glasses +1 = 11.3 glasses of pure unflavored water a day. Don;t include anything else you eat that has water in it. You need a lot of water for keto
      3) salt: salt is measured as sodium. You need to consume at least as much sodium as potassium–you need to use the USDA database to find the potassium value of foods and match that with sodium 1:1. For reference, 2300 mg sodium is 1 very finely ground teaspoon of salt.
      4) Quit all sweeteners–including honey, naturals, sugar substitutes and all things sweetened by them. Stop all juices, smoothies, shakes, alcohol
      5) Quit all grains, all vegetables that grow below the ground (except for onions and garlic), all fruits (except for raspberries and blackberries, all legumes, all milk
      6) Quit all cooking oils and switch to animal fat for cooking. You can enjoy olive oil, avocado oil, or coconut oil but only cold
      7) Don’t take MCT oils. They only burn as ketones, which is great, except they will prevent your own fat from burning so you will not get the full benefits
      8) Once you understand the principle of the ketogenic diet, start by purchasing either urine ketone measuring sticks (cheap but inaccurate) or blood testing kit to make sure you are at a range you need to be
      9) Start the ketogenic diet by fasting for as many days as you can–5 days usually but if you are a migraineur, join my keto mild group instead since this doesn’t work for migraineurs. Fasting means only water and salt please–you can have broth if you wish or some butter if you are starving but hunger is what will get you into ketosis.
      10) Keep on measuring your blood ketones–you want to be between 0.5 and 3.5 measuring beta hydroxybutyrate–and hold it steady. If the numbers go past 3..5, stop the fast.
      11) once you are in ketosis, you may get cramps in your legs or heart palpitations. When this happens, take 1/8th teaspoon salt with a glass of water.
      12) avoid any heavy exercise while your body is getting keto/fat adapted.
      13) There will be no therapeutic benefits from the ketogenic diet unless you start intermittent fasting regularly. For example, I practice the 16:8 (fasting 16 hours and eating within an 8-hour window) every day and once a month or so I do a 24-hour fast. Fasting ability is the reason for the ketogenic diet in your case. When you get hungry and you don;t eat, your body starts to optimize its energy. It removes cells that don’t function optimally and replaces them with new one–particularly mitochondria. This is your way to recovery.

      Supplements are not necessarily helpful… no idea. I am not a supplement supporter. But I am a definite ketogenic diet supporter but I find most people do it wrong.

      Hope you find this helpful.


      1. Dear Angela,

        Thanks again for your comprehensive answer. I’m going to start the ketogynic diet (with your advice) in a month with 5 days fasting in order to get in ketosis. In preperation of the 5 day fasting i wil start with your 16:8 fasting guideline (except for the big christmas dinner i suppose ;-)).

        Some questions:

        -Do you, beside quitting stuff like potatoes and legumes, also have to stop eating pumpkins and other vegetables that are rich with starch?
        -What does the ketogenic diet do with your pH value? My body didn’t get in metabolic acidose due to the topamax but still doesn’t have a healthy pH value. My body got pretty acidic.
        -What does the ketogynic diet do with excitatory neurons? I feel like i’m missing excitatory stimuli even a year after quitting topamax. Feels like having a slow brain function. Will a ketogenic diet, by increasing the GABA receptor have a damping affect on neuro-excitation or will it help my brain ‘wake up’ again? I miss that ‘brain sensitivity’/incitements.
        -Does the ketogynic diet (besides a change in sodium/potassium levels) also have some effect on electrolytes?
        -Currently i’m using supplements every day, these are: magnesium, multivitamin, fish oil and bee propolis. Is it okay to use them while trying to get in ketosis? Maybe not the bee propolis?

        Thanks a lot for your time, really appreciate your help and expertise.

        Kind regards,

        1. Hi Lonneke,

          You are asking a lot of great questions. Let me address them one by one.

          –yes you need to quit all starches (at least at the beginning until you are not fully fat adapted. Once you are, you can take small servings but always test each food you add back to make sure you are in ketosis. I use blood ketone testing, which is essential–though expensive.

          –The ketogenic diet makes your entire body a bit more acidic, so the pH lowers. Each organ always has different pH values and the human body must be acidic, because most pathogens cannot live in an acidic environment. The only alkaline organ we have is our blood, and that is why blood infections are so often fatal. Because every organ has different pH value, there is really no such a “a healthy pH value”… there are many healthy pH values within the human body.

          –he ketogenic diet allows the neurons to recover in every which way. It seems to relax the brain but increase alertness. My focus now is better than it has ever been (I am in my 60s) and I don’t ever get tired. It increases the brain without becoming excited–so it is more efficient.

          –the ketogenic diet is quite neutral in electrolytes since it contains too little carbohydrates to be able to disrupt electrolyte balance.
          –you will find that the only supplement you really need in the ketogenic diet is magnesium, and not much else. Since you eat fish and meat, your omega 3 fatty acids are covered; you don;t need any multivitamin since meats are richer in vitamins than plants, and the little vitamin C you need you can from the green veggies you eat

          I don;t think the bee propolis is anything of importance–frankly no person on the ketogenic diet takes that so you are not likely to need that. However, some people tend to end up with too light color bowel movement. That is a sign that your body lack carnitine to metabolize fat properly. If so, the supplement you need is Acetyl L Carnitine–but wait and see the color of your stool. It works right away.

          Hope this helps,

  6. What do you think of a toxicology report showing 3000 ng/ml of topiramate drawn from peripheral blood? Seems like a ton imo. How could someone consume this much and is there a taste? Could it be given to a person intravenously?

    1. Mason, that appears to be a very large amount of Topiramate because you got the measures in ng. However, 1 mg is 1 million ng, so 3000 ng is 0.003 mg. This may or may not be a big amount–I am not sure since Topiramate come dosed 300 mg twice daily, etc., so depending upon how it was given and when it was taken, and what dose was taken/given, this may be a big amount or may not be. Intravenous application is also possible but everything depends upon liver clearance quality. A compromised liver may not work so well and drugs like this–especially in combination with other drugs, particularly herbs, could be big trouble.

      Hope this helps.

      Best wishes,

      1. Thank you for your quick reply! I tried to respond but my last comment didn’t go through for some reason. Do you have an email where I could ask an additional related question?

        1. Hi Mason,

          Your comments should come through–I see none so perhaps it had a glitch somewhere. I have very little time to respond to emails since I work with thousands of migraineurs and have a backlog of emails and other things. Questions here on the blog are great because other people can learn from them. I would much prefer a conversation here if that’s OK.


  7. I was originally brought to this website for the content on Lupron ( I also have endometriosis and was given a single injection) but saw this and had to comment. I am sure there are many people with negative life altering experiences caused by taking Topiramate, and do not want to diminish that, but my experience has been good. Let me explain.

    In 2010 I began to have chronic dizziness, along with a few other symptoms. was tested for everything my Dr could think of, then shuffled off to specialists- Neurology, ENT, Rheumatologist, had CT scans, MRI, electronystagmogram, you name it. everyone was stumped and the dizziness continued to worsen and got to the point that at times I couldn’t walk, and would almost fall down just standing still or fall off the couch when an attack occurred. I had to stop driving when an attack almost caused an accident and sent me to the hospital where they diagnosed me with ” vertigo”- Ha! So not helpful.

    Finally as a last ditch effort I was sent to a Neurologist at the University of Michigan who immediately knew that I was suffering from atypical migraine, I think then he said some people called it MAV or Migraine Associated Vertigo. I was prescribed a low dose of topiramate and my life slowly got back to normal. I don’t know what went wrong with my brain, but I do know that the only thing keeping me from daily vertigo attacks is topiramate. It saved my life.

    I agree there are side effects- I lost weight, and my brain definitely slowed down. It was significant at first, but is not really too noticeable now. Sometimes I have trouble finding words. At first my sense of taste was severely altered ( probably part of why it causes weight loss?) which was a problem since I work as a Pastry Chef- but that wore off after about 5 months, as did the inability to sense carbonation. The Paresthesia was strange and bothersome at first- a weird tingling in the fingertips and hands. But that too wore off soon and instead of being a daily occurrence only happens rarely. All in all, I feel like the side effects I experienced are easily balanced out by my ability to walk a straight line, drive to work every day, and just live normally without having to worry about when the next attack will come. Thank you for posting the other side of the story.

    1. Dear Amber,

      There is nothing atypical about MAV (migraine activated vertigo). Quite common and many migraineurs have it. There is a non-medicinal solution that has worked for over 4000 migraineurs and would work for you as well if you tried. The problem is that while most researchers believe migraine to be a “disease”, it is not. It is a variance of many functions of the human brain that I wrote about on this blog, explaining how the sensitized “migraine brain” is the default humans brain and all without migraine have adapted to modern life.

      Just as one need not medicate red hair or blue eyes, so there is no need to medicate migraine. Understanding the cause and modifying nutrition to that of what a migraine-brain can metabolize and live on healthily can prevent all migraines. If you want to learn more about it, please read my book or join my migraine group or better yet, do both.

      Best wishes and looking forward to having you in the group,

  8. Just wanted to comment because Topamax ruined me. I took a single dose, 25mg and had over 15 different side effects. I couldn’t think, sleep, coordinate movements or even breathe (I was suddenly very congested, like I had a cold).
    The last 24 hours have been hell and I cannot wait for it to exit my system. A neurologist prescribed it to me as the go-to medication for my cluster migraines but i’d much rather deal with the pain than with such an impairing and ruthless drug.

    1. Dear Ana,

      That sounds horrific. You are not the first one I hear with such incredible side effects! Why don’t you join our migraine group to learn what we do. There are several cluster headache migraineurs in our group. Cluster headaches improve from the use of oxygen but not every doctor knows that. You should ask and see if your doctor is willing to prescribe a test dose to see how it works for you. In the migraine group though we can help. So please join us.


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