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Topamax (Topiramate) Withdrawal Symptoms + How Long They Last

Topamax (Topiramate) is an anticonvulsant drug that is used to help prevent seizures in epileptics. It was later approved by the FDA in conjunction with phentermine for weight loss. Although the two primary uses of the drug remain to treat epilepsy and to help people lose weight, it is prescribed by some psychiatrists to treat bipolar disorder. Despite the fact that it is used to help treat bipolar disorder, most evidence suggests that it is ineffective for that particular condition.

If you are on this drug to manage bipolar disorder, understand that it has not been proven therapeutically effective. Some newer studies suggest that Topamax may provide some benefit in treating borderline personality disorder, but further research is warranted. Researchers have noted that long-term effects of this particular drug have not been well documented and that using this drug to treat borderline personality disorder is not well-supported.

In the same regard, this drug has been utilized to help people with alcoholism, but there isn’t enough supporting research. Other investigational uses for this particular drug include: PTSD (post-traumatic stress disorder), tremors, eating disorders, smoking cessation, cluster headaches, and OCD (obsessive-compulsive disorder). Fortunately most people end up having more problems with side effects from the medication than they do with any sort of major withdrawal.

Factors that influence Topamax withdrawal

As with any drug, there are going to be various factors that influence withdrawal from Topamax. These factors include things like: how long you took the drug (time span), your dosage, how quickly you tapered, as well as other individual factors.

1. Time Span

How long were you on Topamax? Someone who was on Topamax for a longer period of time may experience a longer withdrawal period compared to someone who was only on it for a few weeks or months. If you took it for years and suddenly quit, it may take some time before you readjust to functioning without it.

2. Dosage (25 mg, 50 mg, 100 mg, 200 mg)

The initial target dose of Topamax for adults is 100 mg per day – typically divided into two doses. The maximum recommended dose is 500 mg per day divided into two doses of 250 mg. In the event that you are on a relatively high dose, it may take longer for your body to adjust to reductions in dose during withdrawal and therefore you may experience more discontinuation symptoms. People that are on higher doses tend to

3. Cold Turkey vs. Tapering

It is always recommended to conduct a gradual taper to prevent rebound headaches as well as seizures upon withdrawal. Those who are susceptible to seizures should take the time to follow a tapering protocol as opposed to quitting cold turkey. To be on the safe side, you may want to withdraw at a rate of 25 mg every 2 weeks. So if you are currently at 100 mg, cut your dose to 75 mg after 14 days.

Some suggest dropping 25 mg every week, which is a little bit quicker, but many people have successfully managed with that tapering protocol.  If these reductions are too intense, you could taper at an even slower rate such as 10 mg per week just to be extra safe. As long as you aren’t cutting from 100 mg to 0 mg or making drastic reductions in your dose over short terms, you should be able to avoid seizures and debilitating withdrawal symptoms. If you have any questions regarding your tapering, be sure to talk to a professional (e.g. a doctor).

4. Individual Factors

Although most research suggests that withdrawal from this particular medication should be relatively short-lived, many people have reported pretty severe symptoms weeks after their last dose. Just know that a lot of the symptoms that you experience will be related to how quickly you tapered, whether you are on any other medications, and how sensitive you are to withdrawals.

Some people may not notice much of anything when they quit taking the drug, while other people may feel relatively sick and unable to function. Just know that your experience with any drug is going to be unique – everyone is different. Having good social support, a withdrawal plan, and doing your best to stay productive can help take your mind off of symptoms and make for a quicker recovery.

Topamax Withdrawal Symptoms: List of Possibilities

Below is a list of symptoms that have been reported during withdrawal from Topamax. Understand that you may not experience all of the symptoms listed below, but you may experience some. Keep in mind that the severity of the symptoms and how quickly you recover from them will be an individual experience.

  • Anger: If you find yourself prone to bouts of anger, just know that it could be due to withdrawal from the medication. Some people have reported that they notice themselves becoming angry during withdrawal when they didn’t have any anger problems prior to using this medication.
  • Anxiety: Many individuals report feeling extra anxious when they reduce dosage and/or discontinue the medication. Although the exact cause isn’t known, it may be due to the effect that this drug has on the GABA receptors. It may take some time for the anxiety to subside, but everything should return to normal.
  • Appetite changes: If you notice that your appetite increases when you quit the medication, this is a normal reaction. Topamax has been approved to help people lose weight and it tends to suppress appetite. When you stop taking it, your appetite may temporarily increase and/or return to baseline.
  • Concentration problems: It may be particularly difficult to concentrate during the acute withdrawal period. You may have a difficult time staying focused at work and/or completing normal tasks involving critical thinking and planning.
  • Confusion: The combination of physical withdrawal symptoms as well as concentration difficulties can lead people to feel “confused” for a few days of withdrawal. The confusion may persist for a week or two, but eventually you should be able to think clearly again.
  • Dehydration: This isn’t necessarily a common withdrawal effect, but some individuals have reported dehydration during withdrawal. It is always recommended to stay hydrated during withdrawal because it helps flush the system of the drug. Don’t overdo it, but drink a healthy quantity of water.
  • Depersonalization: Feeling unlike your normal self is something a lot of people report while on this drug as well as when they quit. Some individuals have gone as far as to say it changed their “personality.” It may have changed it while you were on the drug, but as time passes off the drug, you will eventually return back to normal.
  • Depression: Some people end up experiencing depression on the drug as well as when they withdraw. If you didn’t have any sort of severe depression prior to taking the drug, then your mood will return to normal after you quit.
  • Dizziness: This is perhaps the most common withdrawal symptom from any medication along with headaches. Many people have reported dizziness and vertigo immediately after they quit. The dizziness may last for a couple weeks, but should gradually diminish as time passes.
  • Fatigue: Don’t be surprised if you feel pretty tired during the withdrawal period. You may notice that you have low energy and want to sleep more than usual. After a couple weeks your energy levels should pick back up.
  • Headaches (Migraines): A lot of people take Topamax to help with cluster headaches and migraines. Don’t be surprised if you experience rebound headaches when you discontinue the medication. Additionally even if you didn’t have migraines prior to taking the drug, you may end up dealing with headaches for a few days as you withdraw from the drug.
  • Insomnia: Some people notice that they are unable to sleep when they quit taking this drug. It is thought that the increased anxiety as a result of GABA changes can lead to insomnia. Do your best to reduce your arousal with relaxation exercises if you are experiencing insomnia.
  • Irritability: You may notice yourself becoming increasingly irritable during the withdrawal period. Just keep in mind that this is temporary and a result of your brain readjusting to normal function without the drug.
  • Mood swings: Some individuals have experienced changes in mood upon withdrawal. One minute you may feel angry, the next depressed, the next more like your normal self. As time passes, your mood will stabilize.
  • Muscle pain: A common reported withdrawal effect is that of muscle weakness and pain at the joints. This could be due to the fact that your body is now functioning without the influence of a drug and is no longer getting the subtle pain relief and muscle relaxation that the drug may have been supplying.
  • Nausea: You may feel nauseated during withdrawal as this is a normal reaction to withdrawal from most medications. The nausea is typically not overwhelming and will likely subside within a week or two.
  • Panic attacks: If you experience anxiety and allow it to get out of hand, it may lead to panic attacks. In part this may be due to changes in the GABA receptors during withdrawal. As long as you taper slowly and do your best to practice relaxation exercises if you experience intense anxiety, panic attacks shouldn’t be long lasting.
  • Seizures: It is important to avoid quitting this medication “cold turkey” as you may experience rebound or withdrawal seizures if you aren’t careful. Therefore always follow the protocol as issued by your doctor and report to your doctor if you experience any problems.
  • Shaking: Some people have reported experiencing “shakes” and/or tremors when they discontinue. These should not last more than a couple days unless you quit cold turkey from a high dose.
  • Sweating: In some cases people have intense sweats throughout the day and while they sleep during withdrawal. This may be a detoxification mechanism by the body to help itself readjust to functioning without the drug.
  • Thought changes: Some people have noticed that their thoughts are weird or “odd” during withdrawal. Additionally others have noted that this drug changed the way that they think and/or their entire personality. Once you are off of the drug for awhile, your personality and thoughts should return to normal.
  • Vision changes: A troubling side effect that people report while on the drug is changes in vision and eyesight problems. During withdrawal, people have noted blurred vision and visual changes. In most cases, these changes in vision should return to normal over time.
  • Weight gain: Since this drug is used to help people lose weight and it inherently suppresses appetite, many people gain back the weight that they lost while taking it. Don’t be surprised if you gain a little weight once you withdraw.

Topamax Withdrawal Duration: How long does it last?

There is really no telling how long the withdrawal from Topamax is going to last. Most people suggest that it takes anywhere from a few days to a few weeks to be free of withdrawal symptoms. The half-life of the drug ranges from 19 to 25 hours, meaning it could take over 2 days for the drug to leave your system. Most reports suggest that there isn’t a protracted withdrawal syndrome associated with Topamax, so no need to panic.

Many people experience the usually mental fogginess, low energy, and thought changes for a few days, and end up returning to normal relatively quickly. Some people actually feel better within a couple days of stopping Topamax. Obviously it may take your body longer to adjust if you were on a relatively high dose for an extended period of time and/or you quit cold turkey.

There aren’t many horror stories regarding Topamax withdrawal like there are other drugs. During the withdrawal, it would be in your best interest to make sure that you get plenty of sleep, eat healthy, and get some light exercise (e.g. go for a walk). If you feel anxiety and/or possible panic, take the time to utilize some sort of relaxation techniques.

Most people end up feeling as though they have fully withdrawn within a couple weeks after discontinuing. If you still don’t feel better after a couple weeks, just know that everyone reacts differently to withdrawal. Some people may experience symptoms for a longer time than others upon discontinuation.  Do your best to stay productive, engage in healthy habits, and eventually you will feel fully recovered from the withdrawal period.

If you have been through Topamax withdrawal and/or are currently in the process of withdrawing, feel free to share your experience in the comments section below. Sharing your experience may prove to be very helpful to another person going through the same thing as you.

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{ 265 comments… add one }
  • Lauren August 29, 2014, 2:58 am

    I was on 100mg/day for 6 months for migraines. This is literally the only resource I could find which outlined the withdrawal symptoms so thank you! I even asked my doctor and she said there’s a lot and they vary which wasn’t very useful. It’s hard to tell what is a side effect and what isn’t, but the anxiety I suspect the medication caused has been lifting significantly. I’ve had insomnia. I feel a lot more clever, less aphasia, less confusion, more social confidence. My appetite increased but not significantly. Doctor told me to drop to 50mg for 1 week and 25mg for 1 week which I thought seemed a bit quick but I followed advice and no issues.
    Thanks!

    • Laura April 25, 2016, 4:01 am

      Very helpful information! I thought I was losing it and gaining serious mental illness I had always feared. This cleared up so much for me and gave me the proactive ideas to get me going in the right direction. I had called my pharmacist and he was helpful, but this information literally covered everything I have been experiencing and I feel so much better just knowing it’s normal and I’m gonna be okay. Thanks so much. Laura

    • Nancy May 3, 2016, 5:10 pm

      I went off topamax the same way. Saturday was my last dose. Now I feel depressed!

    • Kayla July 21, 2016, 11:34 pm

      Lauren I’m so glad someone besides me linked their Topamax use to anxiety/depression. I took Topamax for my migraines and very shortly after I upped my dose to 50 mg a day I noticed major mood changes and unexplained crying. I thought it was just regular depression symptoms because it runs in my family but after doing some research I realized there’s people who had the same problems as me.

      Now I’m completely off the Zoloft and Wellbutrin my doctor put me on for the depression as well as the Topamax. However now I’ve noticed some lightheadedness that I’m hoping is just some withdrawal symptoms from the Topamax.

      • Chelsea October 17, 2016, 7:07 pm

        I’m so glad someone mapped this out too! I was on the drug at 50mg a day for migraines and noticed over time my anxiety getting worse and worse to the point of panic attacks which is new for me. I stopped taking it, and my anxiety has significantly decreased! (And no more panic attacks).

        It’s been almost 2 months for me and I’ve def. noticed dizziness (even still) and headaches that are different from the ones I had before… but slowly it’ll all settle, I just know it.

  • Sebatini September 27, 2014, 3:22 pm

    This was the most helpful article I have ever found on topamax withdrawal. This should be spread across the Internet like a virus. I have been on topamax for 4 years at 200mg a day for migraines. I had come to the point where I had lost to much weight and had brain fog so I tapered off but was not prepared by my doctor for the withdrawals I experienced.

    I am particularly sensitive to medications and my doctor did not account for that when she tapered me so I had to go back on topamax due to the anxiety and rage outbursts from withdrawal but I will use the information from this article to create my own slower version of a taper down. My doctor tapered me too fast. My withdrawal symptoms had gone on for 6 weeks and were still getting worse at that point when I finally broke down and went back on topamax.

    But I will try again because the risks to me out way the benefits of the medication in my situation. Thank you for the extremely helpful information that this article provided!!

    • Thea December 22, 2014, 10:47 pm

      I posted on Dec 7 bc the withdrawal symptoms were killing me. I’ve had to withdraw from some hard core antidepressants, street drugs and benzos and this is worse because the symptoms don’t weaken and they don’t stop even though I’m still on the medication, a high dose too. I had gone down from 250-125mg by 25mg a week, after being on Topomax for 4years. I went back up to 175mg that night I posted and felt 100% better the next day.

      Well, I went down 3 nights ago to 150mg (it’s been 2 weeks) and am again suffering….major fatigue, confusion, nausea, insomnia but nodding off all night and day, waking covered head to toe in sweat. My appetite has been worse and I’m underweight! I’m going back up to 175mg tonight. I seriously would rather stay on it forever than feel like this. Neurologist is MIA.

      • B July 24, 2016, 2:13 pm

        Had a similar problem. Went to my PCP and asked for 25 mg tablets. You can break those in half, and take at least two weeks before deciding if you feel well enough for the next 1/2 down. You are coming a long way down. It took me 6 months 200-50mg. Symptoms are vastly minimized. 25 in 1 week is too fast. 1/2 of 25 in 2-4 weeks will get you there functioning. Especially if you’ve taken Topamax for years.

  • Debbie September 29, 2014, 8:56 pm

    Thank you so much for this article. There are hundreds on how it affects you while taking… And this is the only withdrawal website. I stopped taking it abt 2 weeks ago and have been feeling “sick” since. Nausea and dizziness are terrible. Can barely function without feeling like I’ll vomit. This article helped normalize my symptoms.

    • LJ May 18, 2016, 9:57 am

      Looking toward trying to conceive, I have stopped topamax (200 mg/day) and my 40mg/day of Paxil simultaneously. It has been a week now, so I don’t think that I should take any of either to ease the symptoms of withdrawal, but the withdraw is terrible. Sleep aids don’t help with insomnia, and the nausea and vomiting are unreal! I’ve gotten off of opiate pain meds before, and this is worse by far!

      • Robbie December 1, 2016, 7:46 pm

        LJ – I am also trying to quit Topamax (migraines) and Paxil (anxiety & nerve pain). I don’t want to feel so zoned out and numb. It is hell. I can’t stop sweating! The headaches, anxiety and nausea – I can all live with because I can take aspirin, wait for them to go away, distract myself and I’m pretty tough – having dealt w/ chronic nerve pain for 20+ yrs., but the profusion of sweat running down my face, bra, sides…cold and hot, out in public!? Ugh! It seems to never go away! A bath or shower just makes it worse – anything hot to eat or drink sets it off. It gets me every time I try to quit. Anyone have any ideas? Help!

  • Margo October 10, 2014, 11:16 pm

    This is THE ONLY website I have found that lists the symptoms of Topamax withdrawl!! THANK YOU SO MUCH. Again, like the other people, my doctor did not say much. I have been on the med for years for headaches and even though I still had headaches, he hesitated to take me off the stuff. He finally agreed after I started acupuncture and it began to work to stop my headaches and I asked again to be taken off the Topamax. I was on 50 mg in the AM and 100 mg at night. I have started by cutting down to 50 at night just yesterday. Thanks so much for the info! M

    • Lisa July 17, 2016, 7:20 am

      I have been taking only 50 mg at bedtime for migraine prevention. My Dr. had me stop the bedtime dose and start a dose of 100mg in the morning with phentermine for weight loss. I feel like I am going through some kind of withdrawal from the missing 50mgs at bedtime. I’m having muscle tightening feelings in my legs and arms. I’m very tired and I want to sleep. But I can’t! My legs keep spamming.

      • Robbie December 1, 2016, 7:51 pm

        That’s restless legs- it’s a withdrawal symptom. It will go away, but it’s really uncomfortable. They sell beverages in health food stores and also grocery stores that have names like “Sleep Well” that have melatonin and valerian in them – just for the period this is bothering you – you could try one of them. They can take that nasty cramping / aching away. Good luck!

  • Heather October 11, 2014, 4:27 pm

    I quit taking topamax 3 weeks ago and have been feeling extremely tired and dizzy since then. I feel off balance and and don’t even really feel safe driving. I just feel dizzy and “out of it.” I hope this passes soon!!

    • Shaunna February 12, 2016, 2:24 am

      I’m feeling the same thing, so dizzy and sick to my stomach. Had to stop almost instantly cause I ran out and don’t have insurance to get my script filled. I hate this foggy and unstableness that I feel. Hope this passes soon. Heather are you doing better? And if so, how long did your symptoms last?

      • Lisa August 1, 2016, 4:01 am

        Please be sure to let your dr know how you are weaning off. Very important.

    • Claire Cole July 9, 2016, 9:04 pm

      Hi there, I was just wondering if you could tell me how long your withdrawing lasted as you experienced the same symptoms as I am going through but I have just gone cold turkey from 200mg a day… Thanks so much.

      • Peggie October 31, 2016, 3:19 pm

        I too stopped my Topamax cold turkey. I have been taking 200 mg a day for close to a year. I did not ask the doctor or seek advice. I just stopped the drug. It has been a week and a half and I cannot sleep. I am miserable trying to work on 2 hours of sleep a night. I hope this soon gets better.

  • Margo October 11, 2014, 6:27 pm

    Heather, in my opinion, that is a long time to be feeling those symptoms. Did you quit “cold turkey”? How much were you taking before you quit? What were you taking it for? I think you should let your doctor know that you are experiencing these severe problems.

  • Margo October 11, 2014, 6:37 pm

    My doctor has me tapering off at 25-50 mg every 6 weeks. This seems A LOT slower than most of the rest of you are doing. After reading the statements that you made, I will definitely just stop the 50 now and if that works OK, then I will take off 25 more in 6 wks. Slow and easy seems to be the way to go. I REALLY want this to work–I have had the problem of “losing” words at the end of sentences–not being able to think of the word I wanted–for a long time. Never connected it with the Topamax! Also, I do NOT want to take a med that does not do me any good–I still had the headaches!!

    • Sandy August 23, 2015, 11:19 am

      Re: I have had the problem of “losing” words at the end of sentences–not being able to think of the word I wanted–for a long time. Topamax saved my career and my mental health when I began having horrid migraines several years ago and needed to stay home in a darkened room at least twice a week. At that time, I was on a very high dose. I eventually tapered down to a maintenance dose of 50mg twice a day.

      I decided to go off the medication because my word-finding difficulty became worse and worse. Simple over-learned words (quail, garage, butter) were out of reach when I wanted to use them; I knew it was the medication. I have been off the med for about two weeks now but I haven’t seen a major improvement yet. I was on the low dose >10 years. I’m hoping to get my words back.

      • Amy Crissey June 20, 2016, 6:33 pm

        I wish I had NEVER heard of Topamax! I don’t know if it did me any good at all on stopping Migraines, but it has severely impeded my ability to speak with the confidence and intelligence I used to be known for. My word recall and ability to say the last word of my sentences has become a source of continual anxiety and embarrassment.

        When I try to wean off, I experience mind fog, pressure behind my eyes, nausea, diarrhea, hand tremors and heart palpitations. It’s like an unwilled, unwarned addiction my body now has to a drug that shouldn’t have been prescribed without further study! Resuming my regular dose brings relief within hours! Why was I given an addictive drug without being strongly cautioned as to it’s unwanted side effects?

        • Lisa August 1, 2016, 4:04 am

          I feel the same.

        • Plb August 6, 2016, 3:51 am

          I feel the same. (25 mg 2x day) Topamax was prescribed for my intractable migraines but feeling stupid and losing words made me quit the medication. I’m hoping to get back to feeling normal soon. I felt like my IQ dropped 35 points while on Topamax.

          • Mariana August 16, 2016, 12:19 pm

            I haven’t been on topamax for close to 18 months. I still get stuck on words, ending sentences and memory. If I had known I would suffer long term side effects (I’m wondering if it’s permanent), I would have never taken it. I was very articulate before, now I struggle to find words mid and end of sentence. So frustrating.

          • Lisa October 12, 2016, 10:29 pm

            I’m trying to wean off of 400mg a day. 200mg in the morning and 200mg at night. I’ve been on this dose for over 12 years. I used to be smart. Now I can’t remember simple things and the words won’t come out of my mouth. They should call it Dopamax.

            My fear is that I’ve been on it for so long that my memory won’t come back. My migraines were were so severe that I was vomiting all the time. Migraines lasted for 3 days. Topamax lessened the severity of the headaches but I was still getting them. Now I got a daith piercing in both ears and I’m migraine free!

        • Nina September 20, 2016, 2:01 am

          Wow. I’ve been on Topamax (now the generic because that’s what insurance pays for) for at least 8-9 years. It used to really help my migraines, but now I get them all the time. And I don’t care to up my dosage as I already have trouble finding words and have always had joint aches from it.

          I’ve been slowly tapering from my low dose for the last month and have experienced dizziness, pressure behind my eyes, stomach upset and insomnia. Then I get a bad headache and take a bunch of Imitrex, which makes me sick, and once that passes, I’m back to the withdrawals again. Just want to take less drugs, but I never thought this one would be so hard to quit!

          • Vida November 27, 2016, 6:33 pm

            Hello ladies, so glad I found a place that can relate to what I am going through. I was put on Topamax for seizures due to stress and depression. I have been off of the drug for about four months. There are still days, actually everyday that I am having dizziness and stumbling. I retired due to the fact that I could no longer concentrate of remember things.

            Some days I feel ok, but never 100. I was also taking 3 other meds for depression. Lost so much time from work because of the adjustments and the inability to drive. I would get lost coming home or forget where I was going so I was not allowed to drive.

            This took a toll on my marriage and we separated after 40 years. People just don’t understand what you are going through and some cannot take it. Thanks for letting speak and hope that we all fell better soon and can move past these side effects.

        • Karen A October 18, 2016, 2:09 am

          Been on 100mg for 3 years for severe migraines, went cold turkey because I developed kidney stones about 3 weeks ago. Became angry, panic attacks, and uncontrollable high blood pressure, like 215/120 and heart palpitations. Starting back tonight to see what happens, still have Lots of kidney stones; but which is worse? I guess I will just deal with the stones rather than hypertension, panic attacks, and anger.

          If all works out well after tonight’s dose I may try tapering off later. Only GREAT thing about this drug, Topamax, besides Zero migraines is; I’ve Lost 85 pounds and I love wearing a size 10 now. Damn if I do, damn if I don’t. I refuse to gain any weight back, but I hate I have to pick kidney stones over the above side effects. Very frustrating, but at least I’m not a size 20 anymore.

      • B July 24, 2016, 2:19 pm

        Sandy, how are you doing with words now, nearly a year later?

    • Kara November 12, 2015, 6:24 pm

      I too have had the same problem! I knew all along it was the medication so when my neuro was not much help I found a new OB/GYN. She has helped me tremendously! We switched my birth control to one that has no estrogen in it and within 6 wks I felt like my headaches were so much better. She slowly took me off my night dosage (75mg) and I just took myself off of my morning dosage (also 75mg).

      I have been unable to finish my sentences and my once excellent recall memory is gone! I was really starting to worry… I have been off all medication for 3 days and I am noticing slight headaches. I haven’t had a full out migraine but I am hoping that they will taper off as the medication leaves my body. And, like you, I still had horrible headaches while on such a high dosage! I sincerely hope my recall and memory issues subside in time. Good luck!

      • Christine May 23, 2016, 9:28 pm

        I am so glad I found this as well! It was hard to find an actual list! Don’t ever ever run out of your meds! I do not want to go through this again! I take a good healthy dose and spent 3 days nearly hurling and sweating and complete unpleasantness. I wanted to know if this was due to the sudden stoppage of this and it looks like it was. Gladly I am good to go now but never ever do I want to run out again!

    • Lori May 3, 2016, 12:22 am

      I tapered off 25 mg every two weeks. I was on 200 mg a day. I still have horrible forgetfulness still and I stopped altogether a month ago. I thankfully didn’t have all the other bad symptoms. Slow taper is better.

    • Robbie December 1, 2016, 7:53 pm

      That losing words symptom is common on Topamax according to other patients (& me!) I can’t wait for that to go away! It’s scary.

  • Sue October 12, 2014, 8:21 am

    I had been on Topomax (100mg) for over 2 years for migraine & had been thinking of quitting as I wasn’t seeing any benefit. Then I left for a 4 day trip to a remote cabin & found it wasn’t with my other migraine meds when I got there & unpacked, so I went cold turkey. It’s now been 9 days. My side effects are insomnia (it’s 4 am now!), increased appetite, fatigue, & some nausea. Fortunately, no rebound headaches at all.

  • Tiffany October 14, 2014, 3:41 am

    Thank you so much for this website I have been looking for possible withdrawal symptoms. I was on topamax for 4 months to treat migraines and I realized a change in my mood and attitude after the third month. I loved it for relieving migraines but that was all. I begin tampering iff my 100mg a day with 25mg a day for two weeks. I was getting cluster headaches all day and sleeping a lot.

    My appetite has not changed so far and no weight gain however I did have the withdrawal headaches for about 2 weeks and occasionally nausea. Some foods/drinks I would usually eat/drink made me want to vomit. The headaches were on the left side near my temple and the back of my head near my ear.

    • Caroline January 21, 2016, 1:22 pm

      I could not believe what I was reading when you were describing the locations of your withdrawal headaches. Over the past few weeks I have been tapering off Topiramate from 100mg, and since the day I started dropping my dosage I have had terrible headaches. I have now been completely free from the drug for 4 days and have terrible insomnia and tonight my headache is concentrated on the left side (at eyebrow height and temple) and behind my left ear. I stopped the drug due to the terrible ongoing side effects, but these recent headaches have made me think twice… I would do anything to be free of these headaches and dizziness.

      • B July 24, 2016, 2:34 pm

        Are you able to take one of the sumatriptan medications? Mine (Relpax) now and (imitrex Injectibles) before that, used to work for ages. Topamax only took their place when there were just too many migraines in a week. The sumatriptans if they did help, can help again with break-through and rebound migraine. Hadn’t needed the prescription in years, but am so glad to have it now.

  • Anna October 16, 2014, 1:05 am

    Thank you so much for this list, I’m grateful! I didn’t know sweating was a withdrawal symptom and now my extreme sweating and hot flashes make sense to me. I hope they go away soon!

  • liz October 20, 2014, 12:27 am

    Tapered off of topiramate. Haven’t been on any for four(ish) days and the last two days I have experienced horrible dizziness and nasuea. MAKE IT STOP.

  • Joseph October 21, 2014, 8:33 pm

    Thank you for the withdrawal tips. I was on DOPAMAX (I called it that because it made me stupid like dumbo & Jim Carey on Dumb & Dumbmer) for 3 weeks and I told my doctor to get me off this crap. The side effects were horrific. I was taking Topamax as a mood stabilizer. My doctor told me to come off of if completely because I am taking different meds and it will help with the side effects, and withdrawals symptoms, plus I was on it for a short period of time.

    Never again will I take this annoying and “pain in the butt” medicine. Donald Trump could not pay me a millions dollars to get me to go back on this poison. No way Jose. Just letting people know and getting my point across. All of you people on this site, you all have a joyous and blessed day.

    • Brendan January 21, 2016, 4:37 am

      Best website info I have found to this date. I am currently on 400mg of Topamax for seizure disorder for the last 4 years. It has probably saved my life but at a high cost. I can identity with the “Dopamax” comment completely, words are hard to find for me and I am a shell of the quick witted man I once was.

      I have tried a reduction in dose against Drs, recommendations and I find I have rage problems almost immediately along with overwhelming anxiety. I don’t know, this stuff has its teeth into me pretty good. First step is a new Dr I think.

      • Mindy Glazer June 9, 2016, 12:20 pm

        I know EXACTLY what you mean with the loss of words!!! OMG! I was on 300mg of Topamax for seizures for the past 4 years. It has ruled my life! I have had lethargy, and dizziness so badly I’ve had to stop work. The newest and most troubling problem from Topamax is I have had kidney stones! I was hospitalized in late March with a horrible kidney infection, large stone, and had have I.V. Antibiotics for 3 days, and a stent placed.

        The stone couldn’t even be blasted for a week later because the infection was so bad. Once my Neurologist found out about all of the kidney problems, he was quick to take me off of Topamax! I’m now 5 days into weaning off it and gradually getting onto Keppra…right now I’m on 500 twice a day and will eventually get to 1,000 twice a day.

        I’m down to 100mg Topamax once a day with the Keppra, and I’m so dizzy and tired, I’m not sure WHICH it’s coming from!…the withdrawal of the Topamax, or the starting of the Keppra! I just know I feel like I’m on a Tilt-A-Whirl every time I stand up and walk!…LOL!

        • Karen June 14, 2016, 4:36 pm

          I was on 50 mg a day twice daily, and decided to take myself off also. I tapered it over a 3 week period, and it’s been 2 weeks since I took my last dose. I was taking it for headaches, but still had headaches while on it.

          I noticed that my word recall wasn’t good, and it made me feel like I just wasn’t myself. I also had trouble typing, often getting letters confused, so I spelled words wrong, which isn’t like me at all. I started having nausea last week, feeling like I was going to throw up, but never could. I also have a white tongue, dry mouth, and decreased appetite where others have mentioned an increase.

          Also I have had a rapid heartbeat with higher than normal for me blood pressure. I don’t know if this is a side effect or not, but I have had an EKG done, blood work, and chest X-rays, all of them coming back normal. If this is a symptom, I hope it passes quickly. Nobody else has mentioned it and it wasn’t mentioned in the withdrawal symptoms in the article, so I don’t know what to think.

          Going back to the doc tomorrow. Strange with the timing of it all though. The saga continues.

          • Lisa August 1, 2016, 4:16 am

            I also experience this and my vision is blurred even with my reading glasses.

          • Kassylena Lilley August 9, 2016, 8:27 pm

            Hi your story really spoke to me I have been on topamax for 1 year and it has caused me to loose a year of my life. I started have the Alice in Wonderland effect I would go numb from head to toe and have intense headaches. This July I finally discovered it was the topamax and I got off it by cutting my pills in half. But I think I’ve been having the withdrawals with tingles and the sleepy feeling in my hands and face.

            I also have had the heart issues and went and got checked out and everything was normal. Such a scary felling and Dr’s look at you like your crazy. Thank you for your story to make me not feel alone. I have been having the headaches and fatigue and nausea so it must be the withdrawal effects. Thank you again.

        • Susie June 15, 2016, 6:33 pm

          I’ve been on Topamax for over 10 years due to seizures. I hate it, I’m so dizzy all the time, my doctor has me on 400 mg. I’m not going back to see him, he will just fire me anyway. I’ll just go down to 200 mg. for a couple of weeks, then quit. Then I’ll be on God’s good Grace.

          • B July 24, 2016, 2:46 pm

            Oh my gosh you have to taper slower. You can provoke a seizure. If you don’t like your doctor do find another. Please read what the doctor here said. You’ve been on for 10 years. You may need to take longer between drops, and split the drop from 25 to half that toward the end. At least, and probably a bit longer than 2 weeks for each step down. Please do this successfully and safely. Not miserably. If you have seizures the Topamax withdrawal will need to be supervised and replaced or the seizures otherwise treated.

          • Teresa October 24, 2016, 12:15 am

            I agree with B here, Susie. After having an EMU and finding out that I should not even be on Topamax I had to withdraw from this medication quickly from 350mg to 50 in 4 weeks, from what I see from this article, that is very fast. But because of all of the anticonvulsants I was on, I needed to get off it quickly (but I am replacing it). My doctor says that Topamax stays in your system for a long time, so you need to slowly withdraw.

        • Michelle August 10, 2016, 10:10 am

          8/10/16: I started on Topamax in 2008 for migraines 100mg/twice daily. I too have had kidney stones, twice. I take potassium citrate, 4 tablets daily. The side effects I have experienced from Topamax has affected my life. Big time. Cannot finish a sentence. Forget words that I know, it just won’t come out. Can’t remember simple things.

          I have lost my job 3 times since 2009. I’ve been judged, talked about at work that something is wrong with me, that I don’t retain information. I’m currently unemployed, and I’m weening off of Topamax. I’m getting my life back. I’ve heard of Topamax referred to as Stupamax. I too continued to have headaches while on this med. I’m 45 years old, lost enough time in brain fog, feeling drugged, dizzy, ears ringing, sometimes I hear “talk radio” like a buzz as if a radio is playing.

          But there’s not. You feel like you’re losing your mind. My withdrawal issue now is insomnia, I have not slept for 2 days. But since I’m unemployed, I’m not worried. Thanks for a great blog. Migraines suck, Topamax blows.

        • Nora September 16, 2016, 6:24 pm

          I wish you all the luck. I’m on high dose Keppra and high dose Topamax. It has affected my prefrontal cortex and Broca center. I’m on it for seizures. I was on 3 grams of Keppra for 3 years but I”m currently on 1750mgs and until recently I was taking 600 mg of Topamax. Now I’m on 400mg of Topamax.

          I have been diagnosed with cognitive impairment. I thought I was getting Alzheimers. It’s a relief to find out all my symptoms are caused by this medication. There’s hope for a reversal. They knew about this in 2006! My physician never told me about this risk.

      • Elise August 10, 2016, 4:24 pm

        I’m so relieved to find the comments here! Finally, I see that I AM NOT THE ONLY ONE! My side affects of depression, brain fog and short term memory loss have changed my life for the last 9 months. I’m seeing a new doc next week to find out what else I can take as a migraine preventative and to get off this stuff, I want my brain back! I can’t remember anything anymore! :(

    • Nad September 8, 2016, 7:33 pm

      Joseph, I have been off topamax for about a month now. I have experienced everything: nausea, horrible anxiety, balance issues, and for two days a migraine. All have gone away pretty much except for migraine foggy, and I’m in an absolutely rotten mood. What are you on for that? Not that I want to get on anything else. I am fearful it won’t subside. I was on topamax for 10 years. Weaned off very slowly.

    • Donna Rinn October 11, 2016, 3:07 am

      I was on Topamax almost 10 yrs. This is it I’m done. How ridiculous they can do this to people’s lives? I’ve had many struggles and taken many things but NO MORE going off of Dr knows most and can’t believe. How good I feel… the best in 10 years. Please I hope others will check out what they are on and how long and question on their own. It took me WAY TOO LONG… Thanks for listening.

  • Sue Jones October 21, 2014, 9:15 pm

    Thank you for an informative article, the best I’ve found. I’ve been on topamax for 10 years and started the tapering process yesterday. Originally I took 50 mg twice a day but I dropped the evening pill years ago. My plan is to cut the 50 mg in half and take the 25 mg for 40 days …. split the half and have approx. 12.5 and take it for 40 days and be done. I don’t feel comfortable tapering any faster and hope my plan is slow enough. Comments and suggestions would be greatly appreciated.

    I took my first 25 last night and didn’t expect to feel differently overnight but today I’ve had a slight headache, dizziness and nauseous. When I told my husband how I was feeling he thought perhaps I was coming down with something rather than having withdrawal but I’m confident its withdrawal. I’m very sensitive to medication and remember well how sick I felt after taking the first 25 mg topamax. I’m really interested in reading anyone’s account of stopping topamax and if they’ve successfully stayed off.

    • Christina July 1, 2015, 7:14 pm

      I was on Topamax for about 10 years and it was not helping with the migraines (I also have epilepsy) so I wanted to try something else. I was taking 100mg, twice a day. When I started tapering off my body went into some type of shock mode. I started having episodes where my eyes would close (sensitivity to light), start to tremor, sometimes worse then others; and would also often cry or scream because my body stiffened so bad. I am now on Keppra and seems to be no side effects but still going through these episodes. Waiting to have a 72 hour EEG done. I just want answers.

      • Ricko January 28, 2016, 4:42 am

        Christina – I take 50mg Dopamax 2x/day with 1000mg Keppra 2x/day to control seizures and it is working well for me. It did take a long time to come up with the right combination of meds/dose, years. In the beginning, my Dr only prescribed Keppra and it didn’t control seizures even at over 4000/mg – 2x/day the seizures persisted.

        I didn’t like all the side effects of either drug, but hated the seizures even more. The Dr and I finally agreed on my current dose and it seems to work well, but I still have some pretty major side effects. So having said that, I am going to taper down to half that dose. My doctor doesn’t even want to talk about taper down anymore, but I am sick and tired of the side effects.

        I would suggest to anyone with epilepsy to taper down very slowly. I did quit both drugs “cold turkey” once and had one of the worst seizures ever. For my taper down, I will drop my Keppra dose 250mg/every 90 days. By the end of the year I will be at a 1000mg/day dose instead of 2000mg/day. As for the Dopamax, I am thinking about dropping 25mg/day for 6 months AM and the same 6 months later in the PM.

        In the end it will have me at 50/mg/day. So basically after 2 years I will be taking half of the meds I am now. I want to play it safe and not have any seizures and they can cause serious injury and death. Please let me know your comments/questions/concerns. Thanks, Ricko

    • Virendra December 1, 2015, 3:19 am

      When I started tapering down I also started doing daily enemas. First with water only and then I added coffee enemas to help the liver to clear and let go of held toxins. That helped plenty! I got 3 days headaches when I drooped my last 25mg and it seems that was it. My blood pressure came up during my tapering and seems to come back to normal now after those 3 “stronger” days.

      Often a not clean colon by itself can create the illness needing such medications and cleaning the same for a longer period of time can/might take care of the root cause itself. I do enemas since 3 weeks daily and will still go on for another 4 weeks. It is my higher guidance suggesting to go this route. Through researching the web I had found out that many stronger illnesses can be cleared through longer periods of colon cleansing enemas.

      I also did 3 colonics during my 3 weeks and every time after I only felt great! So, I am sure for myself that the detox process by coming off of any medicine can greatly benefit from doing enemas. I hope everyone will find his/her way to get through the process with as much ease as possible. Love & light to all … Virendra ***

      • Tiffany March 20, 2016, 5:25 am

        How do you do coffee enemas, may I ask? And where do you get colonics from?

    • James F July 26, 2016, 9:42 pm

      It is the withdrawal I felt exactly the same on dropping my 1st pill on detoxing from this drug, in fact had light flu-like symptoms for the first 5 weeks. Topamax never reduced my migraines, and on 100mg I was having hallucinations, cloudy thinking, trouble concentrating and word loss not to mention dizziness and trouble walking without stumbling. I am down to 50 mg now dropping to 25mg Friday…for me, this was the drug from heck! Jim

    • Donna Rinn October 12, 2016, 2:12 pm

      I am so happy you are trying. It’s not for all but me it is and I want people to know I as on over 8 pills a day. God willing he’s helped me become stronger than I’ve ever been. Deciding it’s my body I know what works and doesn’t anymore. My struggles were severe! But doctors are not wonder workers either. Good luck all. Willing to help anyone, been there…

  • Patsy Ferguson October 23, 2014, 8:21 pm

    My doctor has taken me off Topamax cold turkey. Now. I’m a little scared. I was on 100 mg twice per day. I’ve been off for a wk and a half. Starting to feel a little funny in my head like a little confused off and on. Also lots of anixety. I already have an anxiety disorder and taken xanax 1 mg. I’m allowed 4 per day. Still trying to take 3 per day, but now having to take my 4 per day. Still having lots more anixety than ever!!! Can anyone give me some QUICK Suggestions!!!!! Thanks Patsy Ferguson

    • Molly July 12, 2015, 2:19 pm

      I’ve been on 100mg Topamax at bedtime since January (about 7 months) to prevent migraines. I can say that it has worked for that purpose, but it also contributed severely to my struggle with depression and I’ve had some of the foggy brain symptoms like losing words and reduced energy. I decided to go off the med after talking to my therapist.

      I’ll figure something else out for my migraines if I need to, it’s not worth it to stay on Topamax when it’s so detrimental. I’ve been following the 25mg per week titration and have only had a little dizziness here and there, nothing major. I’m already starting to feel more like myself again. Down to my last four days of 25mg! Here’s to hoping I can make it through without more withdrawal symptoms. Fingers crossed!

    • Lisa August 1, 2016, 4:22 am

      I would check with a doctor.

  • Terri October 27, 2014, 2:03 pm

    I was on Topomax for 2 months, when I took the 100mg – after two days I was almost suicidal, and ringing in my ears. I weened myself off over a 5 day period went down to 50 for two days and then 25 for 3 days. The ringing continued and it has now been 9 days that I am Topamax free and yet the ringing is still in my ears. I have been checked by the clinic – no ear infection, but being sent for a hearing test. Doctor at the walk-in clinic thinks it could still be in my system and it may tapper off. I sure as hell hope so. Anyone experience the ear ringing?

    • GLOOM October 27, 2014, 3:05 pm

      Hi Terri, sorry to hear about this, the tinnitus must be driving you crazy. Keep us posted on the results of the hearing test. Hopefully everything checks out alright and the ringing subsides. It could be a result of drug-induced tinnitus, but let’s hope it stops. You may want to consider seeking immediate attention from an ENT (ear, nose throat) specialist. Wish you nothing but the best.

    • jessica October 29, 2014, 5:09 pm

      YES! I thought I was having a stroke!! I have Raynaud’s so I should not have taken this. I had no idea it stayed in your system for so long. HORRIBLE drug. Hot flushes. Ringing in ears. You could see every vein in my foot. I couldn’t function for days. I will never take this again.

      • Caroline January 21, 2016, 1:31 pm

        Why should this drug not be taken if you have Raynaud’s? I too have Raynaud’s and have been taking Topamax for the last 7 months. Finally weaned myself off, but now suffering from continuous headaches, dizziness and insomnia.

        • Sabrina Siriano April 11, 2016, 12:46 am

          I had to stop taking this medication cold turkey because I found out I was pregnant and this is very bad for the baby. I have had a headache non-stop for over a week. This is not just any headache, I feel like my head is in a tunnel. I have to turn my head slowly and if I don’t, it basically buckles me.

          I am so upset because I was prescribed this medicine for bipolar disorder and come to find out, it hasn’t even been proven to work for bipolar disorder. Now I’m stuck with withdrawals and with the terror that taking this medication my whole first trimester (I didn’t know I was pregnant) can cause deformities to my baby as I’ve been told by my doctor. :(

      • melissa March 21, 2016, 11:44 pm

        I’m glad in not alone. Thursday was my last day on it yesterday was OK. I seized last night… was a small one and I have felt today, like I was in seizure mode all day, now I know it’s w/d symptoms. I did call my doctor though. I hate this and had no idea w/d would be like this.

    • Shawn November 15, 2014, 4:15 pm

      I have been on Topamax for over 3 years now to treat headaches and trigeminal nerve pain due to a brain stem tumor. I recently moved from one state to another and had to switch doctors. I am also on other medication to control seizures and migraines due to the tumor as well. The medication I take for the migraines (that works the best is Migranal). Well this MD wanted me to increase the Topamax to 200 ML a day to control the headaches to I wouldn’t have to take as much Miganal).

      I did it for 2 day and the side effect’s were such that I just could not continue to I just went back down to 50 ML 2x . With that dose I got terrible vertigo and dizziness! And now I am having this weird noise in my head like “muted zapping” every time I move my head and I feel like I’m in a fog. Has anyone had that? I was determined to just quite taking the medicine all together until I read your postings… now I’m not sure that is the best thing to do.

      • Angela December 19, 2015, 8:22 pm

        Did you have any trouble looking at the Computer or Driving. How long did your symptoms last? Did you have to go back on Topamax?

      • Brendan January 21, 2016, 4:53 am

        I can attest to the zapping felling from trigeminal neuralgia. I had that symptom as well prior to taking the topamax fo TN. Over time it went away. Ask your Dr. about Tegratol and Neurontin which both helped me with TN.

    • Pip May 6, 2015, 5:02 am

      Did the ringing in the ears subside over time? I am two week’s off tompamax and experiencing ringing in ears, throbbing head and unable to sleep. Also forgetful and just not feeling with it. When will this stop?

    • Juliet December 4, 2015, 7:15 am

      I too have had ringing in the ears – along with joint pain, visual changes that include this odd dizziness without movement, and abdominal pain. I was on 175 mg/day for migraines. I am trying to decide if I should go back on it.

      • B July 24, 2016, 2:59 pm

        Juliet, how are your Topamax symptoms now, 8 months later? Did the ringing in ears, joint pain, vision, dizziness and abdominal pain subside? How quickly had you been tapering?

      • Lee September 28, 2016, 2:53 am

        I was only on it for a month up to 75 and couldn’t handle the side effects. Withdrawal has been worse though… tinnitus, pain behind my ears, and best of all; I now have tachycardia every time I stand up.

    • zuzu February 2, 2016, 9:52 am

      I have had ringing in my ears before starting Topamax, but it has gotten worse over time. Not sure if it’s the Topamax or just my tinnitus, which runs in my family on my mom’s side. The ringing has gotten much worse since coming off the medication, it’s been 4 days. I’d like to know if the ringing would improve if I was off it long enough.

      • Adele lawless May 3, 2016, 10:50 pm

        I too have tinnitus, have come off Topiramate cold turkey 2 and half weeks ago and have much worse tinnitus now as well as serious dizziness and fatigue.

    • Emma May 17, 2016, 10:25 am

      Has the ringing now gone? I have this.

      • YerkesDodsonCurve May 19, 2016, 8:29 am

        I am on Topamax and am happy with it but notice some of this ringing while on it. I don’t mind it too much but it makes me think that when it’s time to come off, I’ll need to go verrrryyy slowly. Also, on Topamax, I never seem to be able to make myself go to bed. It’s 2:30 AM now!

      • Adele May 29, 2016, 12:25 pm

        Mine hasn’t gone yet. I’m 6 weeks off now and still having symptoms. The dizziness is much improved, but the tinnitus happens intermittently, accompanied by lightheadedness, something going on with my eyes and an almost bubbling feeling in my head. Hopefully it will wear off soon.

    • Paula July 22, 2016, 9:25 pm

      Been on Topamax for migraines about 10 years. Over the last six months have had upper respiratory issues and ringing in my ears intermittently. Am tapering off of my 100mg daily dosage now. Ears still ringing but respiratory symptoms improving. Can’t wait to get off the drug to see if all symptoms subside. I am praying they do!!!

      • VCT August 22, 2016, 6:35 pm

        Paula, what dose did you take for the 10 years? Did you taper down slowly?

        • Paula August 23, 2016, 2:52 am

          VCT. I was on 100mg daily. Tapered off by 25 MG a week over 3 weeks. Now almost 4 weeks later still having intermittent tinnitus, occasional nausea and vomiting/ dizziness, and headaches that are relieved by Maxalt. Still coughing some with congestion. Go back to ENT tomorrow.

    • Nad September 8, 2016, 7:35 pm

      I have and sometimes still do after being off it. Terry

  • Matt October 27, 2014, 4:24 pm

    I have been suffering for migraines for about a year now. I am a male and 30 years old. I have tried Elavil, and I have been on Metoprolol for blood pressure. I cannot function on these drugs as I become fatigued. My doctor switched me to an Ace Inhibitor. Then the doctor put me in Topamax. Started 25 mg a day and after a week I was at 50 mg a day.

    After being on the Topamax for almost 3 months I had bad GI systems of infrequent stools and severe gastric pain, so my doctor decided to wean me off the Topamax. My weaning off period was fairly quick as I was not on the drug that long. 4 days at 25mgs and every other day for 6 days at 25mgs was my weaning off period.

    So a few things to report. There were other symptoms that Topamax helped with that I did not give much thought to (the headaches were the main reason). I would get intermittent twitching in my biceps, triceps, and quads. Physical Therapy exercise I was given before the Topamax has helped me get these mostly under control. The rebound headaches are the worst.

    I do not remember the headaches being this bad. It literally feels like an ice pick is constantly going through the crown of my head on the left side, the pain never leaves 24/7, and now I have pain in my inner ear, and my vision is slightly decreased on the same side. Also, my headaches are now starting to spread to both sides! My headaches were almost always on the left (in fairness the left side of my head hurts a lot more than the right). They wake me up at night and I have a headache when I wake for the day up 50% of the time. The Topamax never broke my migraines as I have had a constant headache, with only one 10 day break since August 2013, but muted the pain about 60%-70%. It is the exact same feeling I get when I take imitrex.

    I have not been on this drug this long. Has anyone else had worse headaches when stepping off the drug, after only taking it for a short time? I finished my 6 day, every other day taper 5 days ago and the bad headaches began when I stepped down to the 25mg taper does, almost 2 weeks ago. Any insights would be appreciated.

  • Sue November 2, 2014, 4:44 pm

    Wondering how everyone is doing? I changed my taper schedule and feel it’s working fine. I went from one 50 mg at bedtime to 25 mg at bedtime and 12.5 in the morning. I’ve done that for 10 days and tonight will take 12.5 at bedtime and 12.5 in the morning. I’m taking Fish Oil 1200 2x daily, Vit D 5000 IU 1x daily, Folic Acid 800 mcg 2x daily and Natural Calm 2x daily. Feeling pretty good other than a slight headache and dizziness. Looking forward to being totally off and hoping for renewed energy. Please post updates.

    • Nina September 20, 2016, 2:26 am

      You’re the only person who had said anything positive. It gives me hope that there is a light at the end of the tunnel. It just never occurred to me that this drug has caused me so many problems. I’ve never known about it. I don’t take much now, but I still have a little left to taper off of. And I will make a pint to remember to take my vitamin D and fish oil! Thank you.

  • Cate November 4, 2014, 4:03 pm

    Thank you, all, for your sharings. I am being encouraged by my homeopath to come off this drug after successfully stopping Paxil. That withdrawal was a nightmare, mostly because my M.D. never told me of possible withdrawal and she took me down WAY too fast, I discovered after-the-fact. This time, I found this site and all your generous postings ahead of time. I am properly apprehensive.

  • tina hebert November 5, 2014, 2:04 am

    On topamax I was fine for a few months then started getting confused, so had to slowly get off of it. Its been two months since quitting and I’ve been going through withdrawals. And everyone is telling me there are no withdrawals from topamax. Well it is horrible. I had every withdrawal symptom listed in this article.

    • Dun November 24, 2014, 5:11 pm

      Hi Tina, I was hoping to find someone like yourself that seems to be in the boat as me. I too have been off of Topamax for about 2 months WITH withdrawal symptoms and it SUCKS! I know your pain, and it’s even worse when there is nothing anyone can do to help. I’m hoping I wake up one of these days and all the symptoms are gone. I suffer from migraines and at one point I was thought to have seizures so I was prescribed Topamax.

      I had side effects for the first few days then they went away. About 3 months later I had just a sick feeling and no appetite. I fought through it and continued for about a yr and a half and decided to just stop cold turkey. I had one withdrawal symptom the first week, then slowly the symptoms got severe, to the point where I was in the ER because I literally thought I was going to die. Again, I’m hoping they go away soon. They have gotten better but now that my appetite is back, I eat and get extreme . And if I don’t eat I get fatigue and leg tingling. I know this is a long reply but it is very refreshing to know I’m not alone.

      • Tiffany March 20, 2016, 5:37 am

        Hi ladies, I’ve been going through the same thing. I’m so unsure anymore about whether or not I should just stay on it. I’ve come off it a few times over the last 11 years, and ended up back on it every time. My rebound headaches have been horrible, I wake up with then and go to bed with them. I’ve been off it cold turkey, per my doctor, for almost 1 month. I feel like sh*t!

  • Molina Davis November 6, 2014, 3:42 pm

    Let me start by saying this is the most annoying med ever, it doesn’t really work, the side affects are ridiculous, and the withdrawal symptoms are even worse. Its been about a month since I tapered off topamax and I feel like I’ve been hit by a bus. The muscle pain and weakness are unbelievable. I’m dehydrated even though I’m drinking plenty of water. I feel like I’m having an out of body experience. The migraines – no words, I have headaches and I can’t even describe them. On paper, my blood work is perfect, but I feel so bad. This is taking too long. Anyone experiencing the same please help, I need to know if this will ever stop.

    • Tiffany March 20, 2016, 5:38 am

      I’m going through the same exact feelings and it’s been almost a month I’ve been off.

      • B July 24, 2016, 3:09 pm

        How long did you take to get off vs. how long you were on? How high was the dose? Do you think you would do anything differently? Perhaps you have advice for those of us trying to get off and worried by your pretty rotten report!

  • M. Fisher November 7, 2014, 4:08 am

    My symptoms seem to flare up rather than remain constant. Is that similar to anyone else’s experience? I’ve been tapering off for a week. I’ll be fine for several hours, and then the nausea and hot flashes will start. I’m tapering off because I’ve developed kidney stones, and it was unclear if the kidney stones were causing the headache / nausea / hot flashes. But my urologist thinks it has more to do with the tapering off. I’m not having any pain associated with the stones. The mood swings/agitation is off the charts. My head get so flushed, I feel like a tick full of blood. But then the next day I can feel fine. I just wish I knew what was triggering it… a meal, eating a certain food, so I could avoid it or at least plan my day better.

  • Tricia Simon Ward November 12, 2014, 3:43 pm

    I failed to have my script for Topamax refilled soon enough as my Doctor went out of town for several of weeks and the pharmacy never called back as to why they could not or were not filling my order. After a week of not hearing from the pharmacy or doctor I thought I might just stop the drug it never seem to help control the headaches. So I had been on 200mg of Topamax for at least 4 years I am going cold turkey. First week insomnia and increase headaches and some depression or anxiety tending toward depression.

    But the second week was horrible depression, crying, headaches with pinching near eyes would not abate even with meds. Muscles tight in neck, shoulders and back very bad. Nausea and vomiting. It is then I woke up and got my Topomax refilled. First night slept through night and woke up at 9:30 am. No eye pain as yet. No nausea as yet. Yep I know cowards way out but I had no symptoms of it. But hate to think my body is this “addicted” to it. May some day try to come of slowly.

  • Nikki November 12, 2014, 7:33 pm

    Greer! Yes all of these are very true… sad but true. Also very helpful. I honestly had no clue as to what was going on with me, one day I just felt very lightheaded my heart was pounding fast and I felt very nauseous, and then came the anxiety. I had went to two hospitals whom ran blood tests and all came back negative. So here I am thinking I am losing my mind well needless to say my neurologist never mentioned withdrawals either. So I had no money for my script went out cold turkey for about 2 weeks and here I am still trying to deal with withdrawals. Oh but I did go to my family physician who told me I was experiencing withdrawals and he prescribed me an anxiety med. So I am back on topamax and an anxiety med. Yay me!

  • Brian November 14, 2014, 9:46 am

    The drug had caused me 5 kidney stones, which impaired my renal function and topamax metabolism. This started the initial withdrawal symptoms. I was then taken off the meds (200mg b.i.d., 400mg daily) because of the stones. Nobody warned me of the incredible impact it would have on my life. This website let me realize I was not going insane, I think it’s about time that pharmaceuticals warn us not only potential side effects while on meds but the far worse effects upon stopping them.

    • Lisa August 1, 2016, 4:33 am

      Yes.

    • Leslie August 7, 2016, 11:33 am

      I have stage 3 renal failure that I did not have before…

  • Linda November 18, 2014, 2:52 am

    I’m glad I found this web site because I was never told what to expect after stopping Topamax. I was on 200mg/day for 5 years and my new opthalmologist made me go off of it. I tapered down slowly and have been completely off it for 5 months. I am still having withdrawal symptoms after all this time. I have had anxiety, depression, dizziness, insomnia, ear problems (ringing, fluttering feelings and sounds), return of the migraines, and personality changes (extremely emotional with crying, rage, negativity). My family is avoiding me and I am becoming more isolated. I have reached the point I might go back on it if it were not damaging my eyes. I am going to see my PCP about something to calm me down. I can’t keep on this way.

    • Margaret October 27, 2016, 5:45 pm

      Linda, How are you doing now, 2 years later? I ask because I am tapering off 200 mg/day for 5+ years and am scared to death although I know it is the best thing for me.

  • Margo November 19, 2014, 5:16 am

    I was on Topamax for many years–100 mg at night and 50 in the morning. I am now tapering and after 6 weeks am down to 25 morning and evening. My neurologist said to go 25 mg every 6 wks, but since there were no withdrawl symptoms after 3 wks except for maybe some bowel trouble, I decided to do it more quickly. I HAVE had some stiffness in neck and shoulders. The doctor has given me some muscle relaxers for that. I have also been getting acupuncture treatments for my headaches and for the pain/stiffness in my neck and shoulders and I am getting regular massages.

    All of these things have helped A LOT! The Topamax never worked for my frequent headaches. I have had fewer headaches since I started the acupuncture. I think the key to going off the Topamax is to do it SLOWLY, over several weeks or months, if you can. The kidney stones were always a worry for me–my doctor warned me every time I went in to see him to drink LOTS of water to avoid them. Hope you all feel better soon!

  • Gin F November 20, 2014, 12:31 am

    I’m wondering if someone else has had a similar experience with Topiramate as I am having. I was only on it recently for literally 4 consecutive days at 25 mgs each day. I was not able to tolerate the side effects, so I stopped taking it after the fourth day. 3 days after I took my last dose, severe vertigo hit me. I also experienced nausea, throwing up, and severe headaches. The vertigo was so bad I thought I had a tumor in my brain. It was frightening, until I realized what it was. It has been 14 days since I stopped taking that topiramate and 11 days since the withdrawal symptoms kicked in. The first three days felt like I was stuck inside a blender with the speed turned on high.

    The fourth day until today I just feel like I’m drunk all the time. I can’t focus, my eyesight has diminished, I cannot drive a car, do chores around the house, and I get nauseous and headachy when I move around too much. I was only on the stuff for four days! I should also mention that I’m also taking a low 10mg daily dose of Citralopram (for depression and anxiety). I learned that the Topiramate increases serotonin production. So I’m wondering if I’m experiencing serotonin syndrome???? I also have always slowly metabolized medications. Medications stay in my system twice as long as the average person. Can anyone give me some helpful advice, confirmation of my suspicions, or helpful hints?

    • Kristi March 4, 2015, 7:44 pm

      Gin F, I was only on topamax for 8 days at 25mg per night. I experienced horrible side effects immediately upon starting this medication. Tingling sensation in my hands and feet, increased headaches, brain fog, loss of words, blurred vision, double vision. It was my neurologist that prescribed me this medication for headaches. My optometrist had me discontinue it due to vision problems and eye pressure. I am on day 3 of withdrawal. I was told by my neurologist that I’d experience zero withdrawal symptoms because I wasn’t taking it for seizures. WRONG! I’m experiencing severe blurred vision, increased headaches, stomach pain with nausea, anxiety that is almost panic attacks and just overall not right in my head.

      • Rhonda May 10, 2016, 5:54 pm

        I started Topamax last week. 25 mg once a day in the evening. I too began having adverse side effects immediately. My neuro told me I’d have numbness and tingling in the hands but to just push through the symptoms, it would be better in a few weeks. I stopped taking it after three days. That was this last Saturday.

        Here we are three days later and I am still miserable. I cannot believe this drug is even out there. It was prescribed for migraines. I will take the headaches over how this made me feel any day. I don’t know how those of you that have taken this for years did it. I could not function! Three days people!!! I just want to feel “normal again”.

    • Grace December 20, 2015, 6:34 pm

      Hi Christi, how long your symptom went away after you withdraw the topamax? My daughter just stopped last night after two 25 mg pills and she is suffering pain in her muscle. Your replay is greatly appreciated. Thanks you very much. – Grace

  • dana November 20, 2014, 12:56 am

    I finished tapering off Topamax about a week an a half ago. A week ago I started experiencing mono-like fatigue. I can barely function and couldn’t figure out what in the world was wrong with me. I see that on the list, which is comforting. Just wondering if others have experienced it to this degree and how long it lasts (I tapered off of 50mg).

    • Gina July 10, 2016, 1:27 pm

      I have been slowly tapering off of 50mg and have extreme fatigue, increased appetite, sleep disturbances, vivid dreams, moodiness, some depersonalization, feeling hopeless. And I am still on 12.5mg daily! I started at 50 milligrams and was there for about four years, I tapered down to 25 milligrams and stayed there for three weeks, then went down to 12.5 milligrams.

      I didn’t notice any of the withdrawal side effects until I got down to the 12.5 milligrams. I’ve been on this dose for almost two weeks, and will probably remain here for at least another week, and then maybe taper to 12.5 milligrams every other day so that I withdraw slowly.

  • emma November 21, 2014, 2:14 am

    I cant believe this. It makes me want to cry. I took topamax for migraines 150mg per day. I had the worst panic attacks. Anxiety. Hair loss. Pins and needles. Depression. Confusion . Forgetfulness. The day I had my worst panic attack I quit cold turkey. I wasn’t going to put up with all those horrible symptoms again. The worst mistake of all. I assumed you had to taper off them if you had epilepsy.

    Four weeks since going cold turkey I feel terrible i haven’t had any bad panic attacks but I’ve suffered everything that is on the withdrawal list. The third week I went to the doc and listed my symptoms and I have now been put on prozac . I didn’t tell her that I hadn’t tapered off the topamax because I was unaware of the withdrawal symptoms. I’m scared I’m not gonna get better because the prozac is making me feel worse. I’m on my 5th day of 10mg. :(

    • Angie June 17, 2015, 11:09 am

      Yes. You will get better! You probably already have! Make sure you have a support system to help you…spouse, friend, parent, pastor, even this website!

      • Stephanie August 25, 2015, 7:43 pm

        You are the first comment I’ve read about it getting better! I haven’t started the taper yet; I’m afraid of the withdrawal, I’m afraid of getting the headaches again that I started taking Topamax for in the first place, I’m vainly afraid of gaining a lot weight! I experience all the side effects and want the clear head, memory, motivation and my personality back more.

        How long until you felt better? Weeks, months? I just want a general idea of what to prepare myself for. And do you have any suggestions of anything else to help? I do have a great support system, but any homeopathic things I can do?

        • Katharine Lee October 29, 2015, 6:50 pm

          Hello Stephanie, I have been on Topamax 50mg twice a day since 2005 and 2 months ago, but because my seizures and migraines stopped, I asked my Doctor to cut it down to 25mg twice daily. I have experienced very little in the way of side effects, in fact, my memory has improved tremendously and I no longer grope for words. Yes, I do get hot flushes (I am 68) and feel nauseous every second day, but I am tapering off very slowly, taking great care not to do anything that might precipitate a seizure, or migraine.

          For example, no flashing lights, do not get over tired, avoid getting stressed, loud, busy, noisy places, too much mental stimulation, get enough sleep, and drink plenty of water. I also meditate regularly and avoid watching TV because I find it overstimulates me mentally, and I stay away from busy shopping malls. I also limit myself to two cups of coffee a day, no alcohol and have never used hallucinatory drugs.

          I am well into my second month of withdrawal now, and have never felt better. People also comment on how well I look. I have always been chubby, but have not regained the weight I lost whilst on Topamax, because I watch what I eat and exercise regularly. Good Luck!

          • YerkesDodsonCurve May 19, 2016, 8:32 am

            That’s nice to hear that you did not regain your weight. I have been concerned about that part. I have a hard time making myself GO TO BED while on it. Anyone have that problem besides me?

  • lena November 23, 2014, 6:02 am

    Thanks for the great article. I am sitting here in a foreign country after forgetting to bring my topamax. It wasn’t helping my migraines anyway, and I was about to ask to taper down. I can’t believe I forgot the meds. I was only on them for 3 months this time and had only had time to work up to 200 mg / day to see if it worked in conjunction with botox.

    It’s been about 36 hours because of the long flight and my travels – and I have searched and there aren’t many options to get more of the medication, so I am debating just going cold turkey. By the time I get the medication (see a doctor) I am well into the 2-3 day mark and will have wasted 1/3 of an extremely expensive holiday. I actually feel great right now, jet lag AND no topamax. Is this the calm before the storm?

  • Cheri DeBusk November 24, 2014, 4:46 am

    This is day four of coming off Topamax. My Dr. has me reducing from 100mg, to 50mg for 2 weeks, to 25mg for 1 week. I have taken Topamax for 2 years for migraines. Since I have gone 6 months with no major headache my Dr. felt it might be time to come off the drug and see what happens. So far I have had a headache for 2 of the 4 days and a sick stomach. Also, my emotions seem to be on edge. I’ve got another 2 1/2 weeks before I’m completely finished. I hope this feeling doesn’t last much longer. Yuck!

  • Erica November 25, 2014, 2:49 pm

    I have been on topamax 100 milligrams BID for 5 years now. The side effects that I’m experiencing from going cold turkey about a week and a half ago are horrid. The anxiety attacks that I am getting are debilitating to say the least. I am trying a new drug called Propanolol 10mg BID and hopefully that will work but last night i experienced vertigo so bad that I was paralyzed in my bed. This has affected my life in such a negative way and has created so much depression and anxiety because I have no energy.

    I have no ability to concentrate, I feel unsafe driving to my job and the fatigue is so unbelievable I feel like I’m going to drop at any second. This has been very very hard. The propanolol has also created a huge amount of vertigo and it’s like I have a double whammy. I will never ever in my life take topamax ever again. It is absolute poison. It never stopped my migraines and I have been in a cloud of fog in my mind for far too long. This article has really helped me to understand I am NOT alone. Thank you to everyone else that has shared because you have helped me as well.

  • Elizabeth December 4, 2014, 11:19 pm

    I have been on 100 mg topamax for about 2 years for migraines. The med never really worked that well but it did control them somewhat. My neurologist placed me on new meds and wanted me to come off of the topamax knowing it already gave me a dopey feeling. He suggested tapering it down from 100 mg to 50 for a week then going without. Two weeks ago I decided it wouldn’t be so bad to just stop taking it instead of tapering off. (This is the ONLY article about coming off of the med so I was never aware there were intense side effects).

    After going cold turkey, a week later I began to notice I was feeling dizzy, disoriented, confused, severe nausea and so on. I thought my God I’m dying! I actually went to the ER where they couldn’t find anything wrong with me (I didn’t think about it could be the cease of this medicine). I have been feeling progressively worse. I am off of the topamax for about 2 weeks now and have gone to my regular doctor knowing something was still wrong with me for him to find nothing again. It frustrated me to no end knowing I felt as if I were ready to die.

    I just found this article after thinking back and now realizing my problems are likely the topamax. I feel a bit relieved to know it is likely this medicine but now that I’ve been off of it for 2 weeks I’m thinking of going back to take 50 mgs in hope the effects stop! I read where others have experienced withdrawal effects for a month or longer and I cannot imagine feeling like this 2 weeks more or longer. No idea what to do!? Anyone have ideas/suggestions or been in the same boat?

  • Thea December 7, 2014, 8:55 pm

    I have been on Topamax for 4 years. I was up to 250mg for prevention of migraines. I’m on a few other meds for MI too, so my neurologist and psychiatrist decided the topamax wasn’t working. I have been going down 25mg/wk. I had started a new med with no side effects but wanted to blame it BC I feel horrible! I’m nauseous, taking zofran 2x/day, having hot flashes, chills, more migraines, night sweats, extreme fatigue during the day, I mean I’m nodding off and almost crashed my car last week.

    My dreams are crazy PTSD anxiety dreams, I keep waking up and don’t know if it’s day or night, I’m so confused!!! I’m physically fighting, waking up not even in bed. Half the time I feel like I’m in another world. I honestly didn’t think you could withdraw from Topamax, now I think I’m tapering way too fast. Thanks for the article and everyone’s insight!

  • M. December 9, 2014, 3:02 am

    I’ve been on 50 mg of Topamax on and off since 2009. The medication curved my migraines, but side effects were terrible. I didn’t mind losing some weight, but my eye sight capacity suffered the most, I now have to wear glasses all the time. Had heavy periods for a few months until they come to an abrupt stop, making me an early menopausal female.

    Then I switched to Propranolol, it was good for a while, tremors where gone, but I was gaining weight and felt too tired all the time, since it is a beta blocker. So I went back to Propranolol a few weeks ago. This time I can feel the withdrawal effects, unlike the first time I stopped taking it. Night sweats are a pain, sometimes I have to change my pajamas three times during the night.

    My doctor says it is a withdrawal symptom that may last from weeks to months. Eventually everything will go back to normal, but the in between time, is slow and bothersome. I feel nauseated everyday, don’t have much appetite though I’ve gained a few pounds back, tremors are gone, but the mind fog has increased. Scared to mention it at home, as they will label my struggle as a result of taking a drug for “crazy” people.

  • Val December 11, 2014, 2:06 pm

    I’ve been on Topamax for 7 years for migraine-related vertigo and am currently tapering off — down 25mg every two weeks, as recommended by my neurologist. I may be the only person alive who initially lost weight, but they gained a lot of weight with this drug. I’m at 50mg now, and I do have to say that that hot flashes have started, and my appetite is back.

    It’s like I forgot what hungry actually felt like, which worries me, because I’m already overweight and want to lose, not gain. That said, I wanted to go off this med because I suspect it causes inflammation in the body. My legs and joints have been swollen up for years and I’m dying to reset my system. I had no idea that the drug stayed in the body for this long…great info!

  • Ariel December 15, 2014, 9:23 pm

    I have been on Topamax for 2 years now at 100mg as a mood stabilizer and have never had any issues while on it, but a few weeks ago my doctor and I decided its time to come off some of my medicines (I already take medicine for depression and very bad anxiety). I’ve been on 50mg for 5 days now of the Topamax and already feeling the withdrawal symptoms. I actually don’t have an appetite because my anxiety has increased so much that when I eat I feel like I’m going to be sick, I have constant nausea and its really starting to bother me.

    I’ve had withdrawals from other medications before, and I definitely do not want to experience this again. I actually tried calling the dr. to see if these symptoms were normal but still can’t get a call back from her, so I decided to just start taking the normal 100mg again that I was originally on because I fear the withdrawals, and especially reading peoples stories about withdrawal symptoms lasting for months even after coming off the medicine… I really hope the medicine gets quickly back into my system and the current withdrawals subside asap!

  • Sue December 18, 2014, 3:45 am

    Finished my taper around Thanksgiving and have felt fine until last week and the migraines are back. Have had a migraine every other day this week. I do not want to reinstate Topamax so will try awhile longer in hopes the migraines regress. Please keep posting… it’s so helpful to read how everyone is progressing.

    • B July 24, 2016, 3:33 pm

      Thanks for letting us know you’re doing well besides having migraines again. Can you tell us what your dose was and how long you took to taper off and feel yourself again?

  • Meagan December 26, 2014, 3:43 am

    I was on 150mg of Topamax for 5 years. I began tapering March 2014. It has been a journey, to say the least. It got worse as I continued to reduce my dose- I remember experiencing severe symptoms at taper 100-75, and from then on. I experienced mood swings, dizziness, nausea (!!!), muscle cramps, difficulty staying asleep, night sweats, sensitivity to light, anxiety..I’m sure I could think of more. I have gained 5 pounds (solid) since stopping the medication. The ONLY thing that helped was .25mg dose of alprazolam and 4mg dose of Zofran. I was much much better after that… I wouldn’t have been able to get off the medication without them. Good luck! It’s absolutely worth it! Hang in there.

  • Jennifer December 26, 2014, 11:55 am

    I have been on Topamax nearly 5 years now. I am finished. I can’t do it anymore. It’s not working anymore, my migraines never fully go away, my memory is just so terrible that I feel like an 80 year old with Dementia. I’ve decided to treat myself naturally. I’m over doctors that don’t care and don’t know what they’re doing. Trust me, they don’t, I’m in nursing, this is the worst medication I’ve ever been on.

    • Renee S. February 24, 2016, 4:45 am

      Jennifer, I know it’s been more than a year since you wrote this but I’d be interested in knowing number one how you went off of Topamax and number two what you chose as a natural alternative. I have also been taking it for 5 years at 200mg at bedtime for migraines. It hasn’t helped at all. I asked two years ago to stop but the dr didn’t feel it was the right time.

      This time I didn’t ask. I started taking the evening dose on Mon., Wed., Fri. And Sun. then after two weeks discontinued Sun. I’m ready to just drop it all at this point. It seems like I have severe muscle pain, migraines and irritability when I take the next dose. I have been trying to find natural alternatives for anything necessary for sometime now. Thanks for your input.

      • Rhonda B. April 4, 2016, 7:10 am

        Renee, I have been on Topamax for 9 years and am now tapering down and probably off. I have epilepsy, but was actually put on Topamax due to severe migraines. At first it really helped the migraines, I believe I have had only 2 grand mal seizures during the last 7 years and I also lost 20 lbs in the first year.

        However, my memory got very bad. Now I have gained the 20 lbs and another 40, am depressed, my memory is very very bad, I have terrible mood swings, I have ringing in the ears and continued problems with blurred vision. My neurologist is not longer available. I know it is the Topamax. I take 200 mg at bedtime. About a week ago I reduced it to 150 mg.

        I have had anxiety and migraines but not too bad. I am going to reduce it by 25mg every 2 weeks. After reading the terrible withdrawal effects, I want to be careful I don’t have a seizure or start a cluster migraine. There are too many side affects to be on this medicine for long term. Good Luck.

  • Bonnie December 31, 2014, 5:47 pm

    Thank you everyone for your comments. I had been on Topamax, high dose for 10 plus yrs. as a migraine preventative. About a year ago, or more, started tapering down and got to 2/25 twice a day. Could not get any lower. The resulting headache was horrible. I don’t think it was a migraine. Reminded me of hangover headaches (that led to migraine) of my younger days. I also feel weak and shaky- like there is no ability to ‘fight it off’. So sick I almost can’t talk. And then the nausea. By then I can’t stand it any more and take some Topamax. A short sleep later, I feel better.

    Last night, I ‘forgot’ to take the 50 mg of Topamax. I woke up in the hell described above. Desperate I take 50 mg of Topamax, and try to sleep. Two hours later, I still feel the same way and wonder if maybe it’s the flu as well as the withdrawal. I take my regular daily dose of 50 mg. 1 hour later I feel better. I don’t know how long it would take me to get off this Topamax roller coaster. It was a God send for migraine in the beginning, and now a nightmare.

    • B July 24, 2016, 3:50 pm

      Thanks for your comments. Do you have a sumatriptan to try for this migraine? They can be taken together. There are some new ones. I too have found 50 mg to maybe be my minimum, and have taken it from 200 down to 50 mg for 8 years.

      Between migraines and nerve pain from cervical and lumbar disk degeneration, that is just what works. However, I still want my brain back. Am trying to step down 12.5 mg every other night for 3 months then every for 3. Then so on. Have my fingers crossed. Meanwhile, I take Relpax for the break through migraines. It’s what I took before Topamax.

  • Karen January 4, 2015, 12:31 am

    The comments expressed by everyone are so confirming! Went on Topamax for migraines and thought it was a lifesaver. But after 6 years it was time to taper off. No increase in migraines, and side effects are wearing off but withdrawal symptoms mirror others. Sweats, leg & joint pains. Irritability. Will see how long it takes to work through it. 2 weeks so far.

    • B July 24, 2016, 3:52 pm

      6 years, I’m at 8. What was your dose and how fast are you tapering? Most importantly, how are you doing?

  • Brian January 9, 2015, 4:51 am

    This website may have saved me from checking into a mental hospital or ER. I have been taking 100mg once daily for probably 3-4 years along w/ Effexor for “Bipolar Depression”. I take too many meds in my opinion and asked my primary if I could get off Topamax. It had the adverse reaction for myself than most. I actually gained weight. I’m so appreciative of all the comments here because I have had kidney stones and worsening vision since I started this med.

    My doc told me to take every other day for 7-10 days to taper off. I did that and was off for about a week and a half with no real effects. Well just 3 days ago I felt different. Not better, not worse just different. Almost felt like coming back to life a little. Yesterday felt more anxious. Still thought maybe energy just coming back. At the same time had racing thoughts so voiced my concern to my wife.

    Today went to work and again racing type thoughts, brain going off in “tangents”. I vowed to my wife I’d take it as a positive but by the time 5pm rolled around I thought for sure I was losing my mind. After reading all these generous posts from all of you I popped a Topamax and will taper much, much slower. Good luck to all. Maybe 2015 will be our year !!! :)

  • Cheryl January 14, 2015, 9:11 pm

    Have been taking Topamax 200mg years for migraines. The migraines really haven’t been successfully abated, but I began to have severe aphasia. My neurologist suggested changing my dose to 100 mg at night. That made insomnia worse plus the aphasia was still there. Have tried all the major migraine therapies with no relief. Now the neurologist decided the aphasia was caused by the Topamax and to taper off by 25 mg each week. The side effects have pretty much been what everyone here is experiencing. I will stick with it until next appointment. Have been off completely for 2 weeks and only had 3 migraine free days. Shoot me now!! Good luck and Happy New year to us all.

  • Alicia January 15, 2015, 7:47 pm

    I was put on topomax when I was 17 as a mood stabilizer at 400mg/daily. It has been 12 years and over the last two years I have noticed a considerable brain fog, poor memory and concentration. I also have begun to wonder why they put me on such a high dose when I was still quite young. This past weekend I ran out, and after two days felt great, much clearer, remembering things quickly and generally more comfortable in my own body.

    Now at day six I am starting to feel shaky and a bit anxious. Not terrible but definitely noticeable. After reading this I am now really wondering how long these symptoms will last! I knew cold turkey was not advised, but I feel so much better off it that I don’t care too much. Knowing what to expect is very helpful though, so now I am just hoping I can deal with these side effects and that they dont last long. Fingers crossed!!

    • Jo June 3, 2016, 6:57 am

      I have been on topamax for years, and within the last year went up to 400 mg. I love topamax. It had several initial dose effects when I started it but after a few weeks, it was so helpful in preventing migraines that it was worth it. Given that it makes soda taste horrible, I was able to quit that addiction as well.

      About 3 months ago, I went to an all plant based diet, which has changed my life unbelievably so. I quit cold turkey because of how great I feel on this diet. I knew it was stupid but did it anyway. I have had the cold sweats the first few days along with a jittery feeling, and major insomnia as it always helped me sleep.

      Dizziness on and off, some brain fog, irritability, but worst of all is the joint and muscle aches. However, in reading others” reports, I am not having near the severity in my symptoms. Mine are annoying, uncomfortable, and night is hard with the insomnia and aches. I have been taking ibuprofen and a Xanax at night to help with pain and relaxing/sleep.

      It’s been 8 days now and every day is different but most symptoms are decreasing in intensity and duration, but not gone. I am going to do something natural with the joint/muscle pain if I can get to an apothecary and ask for something. No major headaches yet.

      • B July 24, 2016, 3:57 pm

        How are you doing? You were on a high dose for a long time. Did you find help in the naturopathic medicine?

  • Janna February 6, 2015, 7:38 pm

    I am so very grateful for finding this site. My post relates to the use of Topamax use for alcohol dependence and withdrawal. I began taking Topamax in addition to Acamprosate for alcohol dependence 5 months ago. I maintained a dose of Topamax at 300 mg daily for 4 months. After experiencing extreme bouts of depression, suicidal thoughts, racing thoughts, insomnia, etc.

    I made the decision to discontinue both Acamprosate and Topamax as I have maintained over 6 months of sobriety. The withdrawal from Acamprosate (Campral) lasted nothing longer than 36 hours. My first ‘taper’ from Topamax was on Tuesday was 50mg. It has been a terrible reminder of what a human body feels like when it is chemically dependent. I am very fortunate that I do not seek to fill this craving with alcohol, but I am painfully aware that this burning desire is only satiated when the next dose of Topamax kicks in.

    I have decided to forego medical advice for the moment and taper down at a very quick pace. 300-250-150-50-??? My goal is to be at 0 by Monday. I understand the risk of seizures in the near future but I feel that the risk of my body craving a drug over a tapering period of 6 weeks is a greater risk to my sobriety which is my long term future. Since I did not see any posts on here commenting on addiction medication use of Topamax and withdrawal I thought it would be relevant to share.

    • Brendan January 23, 2016, 4:20 pm

      Hey man Janna your not alone. I to have been on Topamax 400 mg for years for substance abuse/seizure disorder. I have been sober for over 3 years and I have to think that Topamax has something to do with cravings. I was out of control and outside of a power greater than myself topamax has been the only other thing I can give credit to.

      Fast forward to today, I have terrible problems finding the right words to say and have gone from a clever man to a dumbed up version of my old self. I have this sinking feeling that my real personality is somewhere in the distant past becoming more and more difficult to recapture each dose of topamax I take. So I am torn.

      It has helped perhaps but I think God saved me from the depths of alcoholism in the end. Now I am finding myself dependent again. Chasing my tail if you will.

  • Ruth February 10, 2015, 9:05 pm

    Thanks so much for this article. I thought I was the only one. I’ve been on Topamax since 2006- 200mg per day for a mood stabilizer. I started coming off this drug in September of 2014. 200-100-50…then when I hit 25 I started having those panic attacks. I backed up to 50. Have been in a holding pattern since then. I just recently went back down to 25 hoping this time I can finally get off this med. my reason? Frequent UTI’s and blood tests reveal high creatinine levels. Did topamax cause this? We will see.

  • Beth February 15, 2015, 4:32 am

    I’ve been on Topomax for probably 12+ years – 50 mg for migraines. I tried coming off years ago and had trouble and went back on. I now realize that it was rebound headaches from drug withdrawal. I am tired of losing my words. Had the MRI just to make myself feel better that it wasn’t early onset Alzheimer’s. I recently went up to 150 mg a day after a bad summer of headaches.

    Thinking back now they were probably caused by caffeine withdrawal.. I guess I should go off one “drug” at a time. Ha ha! I’ve dropped to 50 mg a day for one week and then went cold turkey. Was wondering about these headaches I’ve had since stopping and started looking up “rebound headaches after coming off of Topomax.” Thank you all! Just popped 50 mg and will see if that works. Have been feeling absolutely empty…gee is that hunger? And queasy. Avoid glare, stay inside during weather changes and kick the topamax! Here is to hoping.

  • AD February 17, 2015, 10:39 pm

    I know I am repeating what everyone else has said, but THANK YOU! I was ready to go to the ER because I have been having dizzy spells for the past 4 days. I tapered Topamax down from 100 mg to 25 mg, and finally discontinued it the end of January. The vertigo started 2 and 1/2 weeks after stopping, and it seems as if it’s getting worse as the days go by. Hopefully, it won’t last long!

  • Kristi February 18, 2015, 2:14 am

    I was given this medicine for weight loss. Mind you I only have 30lbs to lose and in comparison to many people I feel like I should have opted out of taking this. Nonetheless, I took it. I started out taking 50 mg at night. The next day, I was not feeling myself. I had no patience. Little things were pushing me to a breaking point, and I felt very nervous inside – almost like I wanted to just jump out of my skin!

    So I did not take it again. Again that is until 2 weeks later when I thought, I wonder if that was just a fluke thing. So as if I am asking for trouble or I just really envision finally looking good in a bathing suit. I took 50 mil again this morning. (This is half of the pill. The whole thing was 100 mg.) I can finally make a very strong decision that topamax was what was making me feel the way I did 2 weeks ago, because I feel the same this evening. I feel so bad for my family, as I am not being a good and patient mother and wife.

    I can’t wait for this to get out of my system. I know I just need to diet and exercise and not try the easy way out. I know. It’s not worth it. How I am as a mom and a wife are far more important. I would never recommend this to anyone for the purpose of losing weight. I’m going to bed hopefully it will be out of my system by tomorrow. It was 50 mg. For just a day and I took it this morning. I just hope.

    • Susan February 8, 2016, 6:16 am

      I hear you. Same here.

  • audrey February 20, 2015, 1:06 am

    Took topamax for headaches for round three years. Got down to 50mg a day when the headaches subsided. Decided to stop taking any since I’d been pain free for a year. Man, all of a sudden I feel happier. More interested in doing things. More energy. I knew I had depression before, but didn’t link any of it to the topamax, until I stopped taking it. Thank you universe.

  • Cynthia February 20, 2015, 7:01 pm

    I found this page because I have been tapering off Topamax. I have been on it for about 2 years for migraines and also for nerve pain and it has really helped, but I would like to do away with it if possible, especially because of its contraindication with alcohol. Ugh! I did fine going from 100 to 50 and now I am down to 25. I admit I have done this all pretty fast, in the course of 2 weeks or so, maybe a little longer.

    I cannot sleep AT ALL now and I was never a good sleeper to begin with, and I am having terrible heart palpitations. I took have had anxiety and disorientation and mood swings. I am sure this is from tapering quickly, but I am not going to stop now. I want off this medication and hopefully these things will resolve. I, like everyone here and just grateful to know I am not alone and I am not CRAZY. That this is all related to the Topamax. Here’s to us all feeling better!

  • Marisa February 24, 2015, 4:15 pm

    I’m so glad I came across this article. I’ve been on this TERRIBLE drug going on 10 months. In my 9th month it was increased to 175mg and I was on it for my Migraines. I ended up in the ER with anxiety. I was then taken down to 150mg… In the week I was tapered off, I was in a store completely standing not knowing where I was or what day it was. The words were not coming out of my mouth and I felt like I had suffered a stroke. I was also experiencing hair loss, but my doc said it wasn’t due to the drug.

    Within the month I started getting very depressed, anxious, irritable, angry, impulsive, suicidal, etc. I contacted my doc right away and they had told me go skip the pm dose which was 75mg at night as I was taking 50mg in the am and told me to go down to 25mg. To me this seems like a drastic drop and now I’m in bed with chills and feeling like total crap. I did lose weight on the med, but I don’t care if I gain it back. I’d rather have the person I was, than the person I lost due to being on this horrible drug (that should be taken off the market).

  • Mark March 13, 2015, 11:57 pm

    I was on this for 7 months for migraines and got some really bad reactions to it, like dizziness. Constant to the point where I couldn’t walk and constant memory loss and confusion. I came off them in October 2014 and I have never felt right after, the dizziness has lessened, but its still there catching me off-guard and the memory loss and confusion is still happening and causing a decent amount of problems. I was wondering if it is possible for the withdrawal symptoms to take this long to pass or if something else has gone wrong in the process. Thanks.

    • Rose March 23, 2015, 1:09 am

      I was put on Topamax for seizures five years ago. It was the third anti-seizure medication I was prescribed but I was better on it than the others so that’s where I stayed. I was taking 100 mg morning and 100 mg at night – maybe 200 mg at night. I reduced the amount I was taking over a period of two months or longer until I was only taking a quarter of a 100 mg. pill a day. I then took that for about 2 or 3 weeks.

      And then I stopped taking it. I have experienced strange feelings lately and do feel extremely anxious from time to time. I completely lose my words sometimes when I’m talking and feel like I’m beginning with Alzheimer’s. It’s very disturbing and seems to be getting worse instead of better. My Neurologist did not want to take me off this because of the possibility of the return of seizures but I also have to take Gabapentin for neuropathy and the combination was just too much.

      I cannot function on both. I’ve asked for a new doctor and hopefully he will be able to tell me if the weird feelings are side effects. I can see how people could become addicted to it because it truly made me “out of it” at night especially. I take Ambien and 1200 mg. of Tylenol at night for pain of fibromyalgia but at least I can rest at night. So happy to find a place that addresses the withdrawal issues! Good luck everybody. I wouldn’t wish this on my worst enemy.

  • Megan March 20, 2015, 1:57 am

    I took this horrid medicine for 7 months because of my migraines. First off, I still got the migraines despite the medicine. I lost over 20 lbs (I’m small to begin with and didn’t have the weight to lose), I was, for lack of a better word, crazy (mood swings, very emotional), I would forget things mid sentence (not be able to remember basic words, and I’m a college student. That’s NOT OK! I could not taste anything carbonated and my sight was worse (I stopped driving at night all together because I didn’t trust myself).

    I was on 100mg a day for 7 months and then my doctor had me taper off (50mg for a week, then 25 for a week). Since I started that (I’ve been off completely for 6 days now) I have has severe hives all over my body every day, uncontrollable itching to the point I make myself bleed, headaches every day (no migraine yet but I’m sure it’s coming), every food has a weird taste (even water), I have been eating everything in sight (gaining some weight back), and I can’t bring myself to get out of bed in the mornings, I’m so tired. If the hives and itching don’t start soon I’m not sure what I’ll do!!! This medicine is a nightmare.

  • Erin K. March 27, 2015, 12:24 am

    I am happy to have finally found this article. Crying now. For some background info: I am a 39 year-old married female, I am also diagnosed Schizo-Affective (Schizo-Affective disorder is having Schizophrenia along with another substantial mental illness in conjunction, for me: Schizophrenia and Cyclical Major Depression/generally only depressed in the Fall but it comes and goes along with my anxiety), I was on 200mg Topamax for almost one year. I was prescribed this medication by my Primary Care Physician for weight loss due to taking Atypical Anti-Psychotic meds and gaining 40lbs from them, I have been off Topamax for several months, CAN’T REMEMBER how long.

    I went off 200mg to 100mg for maybe a month (again CAN’T REMEMBER, WHO KNOWS how long it was:well my Dr. probably knows, I just can’t remember) as soon as I went from 200mg to 100mg all of my friends and family said I sounded so much better, as in not stopping mid-sentence and not remember at all what the crap I was trying to say. Then when I went from 100mg to nothing, they all said it again, you sound so much better, more with it. I wondered to myself, if I sounded so bad and out of it, why didn’t anyone tell me their concerns?? WTF?

    Since quitting I have had the worst cognitive symptoms, the memory loss is crippling. I tell my husband the same stories even up to five times. I am SO frustrated with this that I started doing some brain training from an excellent book of puzzles called, “The Complete Brain Workout” by Marcel Danesi, PhD. Ever since I started the puzzles, things have been slowly getting better. I work on the puzzles for a minimum of 15minutes per day, though I most of the time work on them much longer; and I have felt a difference, for the most part I now can remember whether I have said anything already to someone, Dr. Danesi has 2 more earlier books of brain improving puzzles, the newest is the one I’m working on now because they didn’t have the earlier books at my town’s bookstore.

    I have since purchased the middle book for when I finish the new one, its called, “Extreme Brain Workout.” The memory loss has been the most debilitating and frustrating side-effect/withdrawal symptom, though now that I’ve read this article, I realize why I had an anger freak-out at the grocery store today, and why I had the first panic attack my early 20s last weekend. And the crazy hot flash/sweat fest the day before yesterday! Geez Louise! At least I now know that these are just withdrawal symptoms, and I believe that the fact that I take other (what do you call it…) brain-altering medications that is making my recovery so slow.

    I pray that it won’t last a whole year (as in how long I was on the drug). I know I would have made any brain improvement if it wasn”t for the puzzles, and just so you guys know, word-puzzles are the type of puzzles that are used for memory, so crosswords, acrostics, etc. are puzzles you can do to improve your memory and word-recall. I can say for sure I barely ever have word substitutions (like wanting to say, “vase” and saying,”monkey” instead) or lost words anymore.

    I should also probably point out that I have severe Fibromyalgia, and I’ve been in lots of extra muscle pain the past few months, so I guess the Topamax withdrawal has affected that as well. Anyways, sorry this is so long, I just wanted to be really clear about the other things going on with me, and why I took the drug. Oh, btw, I totally binge-eat at night now. I’ve never done that before, but its like I have never seen food in a month or something. Hope that ends soon!! I HATE TOPAMAX. Thanks for reading this, good luck to all who are suffering. I kinda want to sue.

    I forgot to add, I have very bad transitory vision impairment, like, one day everything is blurry, and I cant read the menus on my T.V., and some days my vision is much better. I can’t concentrate enough to drive very far. I can do maybe 2 miles, but my parents house is 9 miles from my house, and I got into a car accident with a mailbox when I was driving there at night, and now my dad drives to pick me up and drop me off when I visit them. Cause even though its bad at night, I still cant trust myself driving for more than 2 miles. My husband does most of the driving for us, obviously. I hope my story helps someone. I have been helped by your stories and thank you all. -Erin

    • Kris December 25, 2015, 7:14 am

      I was on 100 MG for only 3 month prescribed by my endocrinologist to lose weight. Then after 3 months I went through extensive tests because of chest pains. They found nothing. Everything fine with my heart. But my GP told me to quit taking the topiramate and phentermine combo until I am done testing. So naively I went off cold turkey.

      Since then I have severe pain in my legs and joints in my legs. I am so stiff I can hardly walk some days. I literally felt like I must have some severe health issues. Then tonight my husband suggested I may be having withdrawal from the drug. Does anybody feel this is possible? And I wonder If I’ll be back to norm? Able to walk with no pain…

    • GeorgiaF May 21, 2016, 2:53 am

      Man, this comment is late enough to probably be irrelevant, but hey. I find it inspiring how resourceful and proactive your stop-gap solution of mnemonic strengthening exercise is. Seems as though even through the mental fog and mountain of other crappy symptoms, you still found a way to take back the reins. Just had to be said. Good on you, Erin. Thanks for the reminder that we’re never truly powerless in any of this.

  • louise April 1, 2015, 3:32 pm

    I had been taking Topamax as a mood stabilizer for 10 years. However I started having eye problems and stopped old turkey and went on Tegretol for 4 weeks. Then I got the Steven’s Johnston rash. I was told no more anticonvulsants after this. It has been more than a month since I stopped Tegretol cold turkey, Topamax 2 months and though I no longer felt stuporous. I am now getting headaches, trouble with anger and bouts of extreme sleepiness and disrupted sleep. Anyone know how long this may last?

  • Rachel April 4, 2015, 1:36 pm

    My doctor gave me this for my anxiety and depression. This was, for me personally, the worst possible experience. I became violent and broke things around my house and tried harmed the people I love. I couldn’t control the thoughts in my head of harming people and what was worse is that the images of hurting people was making me feel good. I felt like I wasn’t in control of my body or thoughts and I spiraled into panic attacks trying to control myself. The withdrawal is horrible as well, I feel bad for anyone who has to work and take this medication and have the same reaction as I did.

  • Anna April 13, 2015, 2:51 am

    I have been weaning off of Topamax as well. I was taking 50mg. I am reducing by taking off 1/4 off a week. It may not seem much but after taking it more than a year you have to give your body time to readjust it self. I have been feeling weakness in my legs and thought it was because I worked on my feet all day. After reading the withdrawals I realize it may be the medicine. I also felt very moody and agitated one week. It all makes sense and that is all with just taking 1/4 off a week. I’m starting to feel better. Take your time weaning off of this medicine. I will start my 4th week Monday with 25mg. Two more weeks and I’m done. I figured it will take me 6 weeks to get off of 50mg. To me, it’s worth the slow process rather than the horrible withdrawals.

  • Julie April 14, 2015, 1:47 pm

    I was only on this drug for about 3 weeks. During that time I got horrible acne,my period was a week late,I was tired all the time, and I got severely depressed. I guess I’m one of those people who feels better quitting it then I did taking it. I was only on 50mg once a night. Then I halved my dose for two nights and stopped. First two days I did get some headaches and dizziness. Now I have some insomnia. Other then that, my mood is way better being off!

  • Julie L April 19, 2015, 9:16 pm

    Greetings all. I have been taking 200 mg every morning for several years for migraine prevention. It’s done OK, but, I’ve reached a point where I’m not sure the benefits outweigh the side effects. I knew there were side effects being on the drug – mostly what bothered me was losing my train of thought in the middle of a conversation, focus and just plain mental acuity.

    About 6 days ago I stopped cold turkey. It wasn’t until I had had a backache (since day 1), was warm–I hear similar to hot flashes (day 4) & insomnia (day 4) that I thought to check out the withdrawal symptoms. Duh! Many have also commented about anxiety & depression. I’m hoping that since I take an antidepressant I will avoid those issues. I hope this is the worst of the withdrawal symptoms I experience. Will keep you posted. – J

    • B July 24, 2016, 4:06 pm

      Julie, how are you doing with stopping Topamax? Please do keep us posted.

  • Christina May 3, 2015, 1:33 am

    I was tapering off Topamax (25mg) at a time, switching to another seizure medication. Topamax was not helping my headaches and I suffered from some short term memory loss, losing focus, and constantly feeling tired. The moment I started to decrease the Topamax I started having severe tremors and being off the medication I lost balance severely and some feeling in my legs. I was hospitalized for 4 days and am now in physical therapy. I am now taking a new medication and I already within 2 weeks feel a lot better; less tired, no headaches, and feel more alert.

  • Sarah May 26, 2015, 5:45 pm

    Thanks for this information! I have been on Topamax 100mg for 6 months to treat my epilepsy, however the side effects were horrible and I had more seizures while on this medicine than without. I have slowly lowered my dose until I took my last pill one week ago. It has been a rough week and this information has helped me understand why!

    I just want to be back to myself again, and I am excited to be seeing the light at the end of this hellish tunnel! I am one week seizure free when before, I wasn’t able to go more than 2 hours without having one in 6 months! I am feeling much better now off the pills than before and I am hoping this continues because I have been a mess since Topamax! Here’s to another week of no seizures and no Topamax!

  • Ang June 2, 2015, 4:43 am

    I certainly appreciate this site. I have been on Topamax, 100mg for 10 years. since my ruptured brain aneurysm. I still experienced pain and headaches from the rupture and all my neurologist could come up with is to increase the Topamax. Since it never controlled the pain, I could not see upping the dosage. Now I am taking control and taking myself off of it. I took it down to 75 mg for a month and down to 50 mg just last week. The first month was a breeze, but the past day or so has been a little tough.

    I am determined though and gotta hang strong on this. I will be decreasing 25 mg a month at a time. Something that has helped me is a drop or 2 of peppermint oil in a glass of water (and plenty of water through the day) helps with nausea. I also mix a little peppermint oil with coconut oil and apply to my forehead. If my head continues to hurt, I will use a hot pack on it. Yes, I smell like a candy cane, but it helps. My best to any of you trying to relieve yourself of the medications in your life.

  • Lexie June 4, 2015, 9:55 pm

    Hi Everyone- So glad I found this site. I am now on day 4 of decreasing 50mg twice a day Topamax and also Wellbutrin. The Topamax is the one I’m more concerned with. Today has been the hardest day by far. Woke up with a huge headache, blurred vision (which caused me to panic because I didn’t know what the heck was going on), rapid heart beat, maybe because I was in a panic not sure, sweaty hands, upset stomach, and dizzy. I also felt a little confused, similar to not knowing what to do with myself, or where to go, what to do, or even what I wanted to do.

    Just blank. My instant response was, “OK, can’t do crap about my vision, so lets try to get this headache under control”. Tylenol and coffee, and then more coffee, still have the headache but not as bad. Aches, similar to the flu but no fever. Been laying down most of the day due to dizziness and headache. Really had to work on relaxing and telling myself it’s ok, this will pass and I can get through this.

    The only reason I’m getting off of the meds is they are no longer working and I don’t see a point in staying on something that hasn’t been beneficial. Depression and anxiety run in my family and I’ve been working on relaxation techniques for quit awhile since the meds quit working. Before I decided to get off the meds I did increase the dose in Topamax. My speech was affected. I would have to think harder to come up with the words for sentences, and it just felt too difficult to do that, so I became a lot more quiet.

    I went back to my regular dose and then later decided to get off the meds completely. I knew the road to Clean Slate would not be easy, fun, or feel good, and I do hope the side effects don’t linger after it’s all said and done. One day at a time kinda thing, but I’m willing to continue forward. I wish everyone the best, as were all just trying to feel a bit better than we did the day before. -Lexie

  • Paula June 5, 2015, 6:49 pm

    Wow, so glad I found this. I have been on Topamax for about a year now, 25 mg in am, 25 mg in pm for migraines. I started Lamictal about March for depression. Lately almost all of the symptoms mentioned have hit me and I thought I was loosing my mind. My psychiatrist increased the Lamictal to 150 mg and that has really helped with the anxiety and mood swings. He also gave me clorazapate (anti anxiety) to take at night to sleep, works awesome.

    I work full time and have hardly been able to function. I met with my neurologist recently who’s tapering me down from the topamax, only 25 mg at night for six weeks. Still really shaky, dopey and forgetful, including losing my sense of direction (forgot how to get to the neurologist’s office) but hopeful things will get better. This website helped!!

  • Sue June 6, 2015, 11:00 pm

    Hi All…Am now finishing up with week one tapering off from 100 mg Topamax by 1/2 pill each week until I’m off. My Neuro put me on this as an adjunct to my other anti seizure meds for Epilepsy. I’m 52 & have grand mals. My husband has been the most loving & supportive person through all this but I’ve been mean to him on & off this drug. Mostly mood swings this week. Will not miss the initial side effects of tingling feet & hands, not tasting sodas, eye pressure, more depressed. Bye to you soon Topamax! You will not be missed!

    • Sarah May 29, 2016, 5:46 pm

      I’m currently decreasing off Topamax 400mg daily after the neurologist put me on it with some other medicine for epilepsy. I’ve had epilepsy since having an accident when young. I’m now 48 so I’ve tried most meds. Topamax must be one of the worst I’ve ever taken. I’ve since found out from a different Neurologist it shouldn’t be taken with the other epilepsy tablet I take due to major interactions!

      Hence my reason now 2 years later, many epileptic seizures now can’t wait to take the final topamax but didn’t expect the extreme tiredness whilst reducing them! I think this drug is Evil and should be banned!

      • Teresa October 24, 2016, 12:07 am

        Hello Sarah, My situation is so similar to yours. I have had epilepsy since I was 7 and I am 43 now. I have tried many anticonvulsants, I think Topamax is one of the worst as well, I have taken one other that had a cognitive effect, I had to leave school because of it, but I don’t remember what the name of it is. I was prescribed Topamax 8 years ago with Lamictal for seizures.

        In the past year I started telling my neurologist that I didn’t think that my medication was working for me anymore. She kept increasing the Topamax. I finally told her that I wanted to try something else. She suggested an EMU. The results suggested that Topamax was not even the type of anticonvulsant I should be taking for my type of epilepsy. After that I changed neurologist and started seeing an epileptologist.

        He gave me options of Dilantin and Keppra. I first chose Dilantin (I had taken it in the paste) , but then gained 8 pounds in 2 weeks. I asked him to put me on Keppra. In the process of adding the Keppra and withdrawing the Dilantin, I had negative reaction, so he had to decrease my Topamax more quickly than planned.

        The EMU was just two months ago. I was taking 350 mg a day and will start 100 a day this week, next week I will be off it. From what I read, this is quickly, but for me, it is necessary. My hands are shaking, I feel nausea, sweating; I didn’t know if it was because of the Keppra or withdrawal. I feel better now that I have found this article, I was hesitant about the new medication, hopefully the withdrawal side effects subside soon, I will not return to this medication!

  • Meredith July 11, 2015, 2:22 pm

    I’m going down from 100mg to 75mg of Topamax just to see if I can retain the positive effects of the drug without being as zombied out all the time. But even this small transition (I was at 100mg for a year and a half) has been hard. It’s been one week at the new dosage, and I’m still experiencing mood swings, sudden fatigue, and anxiety. I feel as though there is a weight sitting in the middle of my chest.

    I don’t normally write on comment boards but wanted to share this information in case it helps someone else in the same position. Everyone else’s comments helped me a lot. I keep coming back to this thread over and over, looking for answers about when I will adjust at the new dose. There are not many case studies available online to help you feel like what you’re experiencing is normal. Thank you for this writeup!

  • srhdoll July 11, 2015, 11:21 pm

    Awesome stuff! I Was taking 100 mg of topamax for 4-5 yrs along with gabapentin 300-900mg daily. I’ve been off of topamax since November and have gained back all the weight I lost plus some I was prescribed these meds due to a misfiring nerve and complications with my titanium equipment in my sinuses and skull. After a couple of years on these drugs my mra got to the right specialist and I had my left anvil implanted (missing for 16 yrs) after the ear procedure I had a drastic improvement in my pressure changes and head aches. I was prescribed glasses for the first time in my life the same week I had my ear surgery.

    I went to my neurologist and expressed my concerns, I was feeling stupid as sh*t. I had severe social anxiety and I couldn’t get a sentence out without reiterating my mixed words or stuttering on my thought blocks. I had severe withdrawal symptoms kick in about a month after no topamax. I didn’t associate anything that was happening with my “preventative medications”. I was in the er 3 times since March. I stopped taking the gabapentin as well because I noticed I was more withdrawn than normal and no matter how many I took the pain did not subside.

    It still hasn’t, I take ibuprofen every so often but nothing seems to work. I’m frustrated and do not want to depend on any drugs just to function. I feel like my speech is worse now at times then it ever has been. My neck, shoulders and back have become a primary source of my pain. I have impulsive anger or bouts of sadness. Sometimes I can not get myself to do anything besides think about what I need to get done and other times I am restless and compulsive. The social anxiety has almost completely gone, and I feel like my thought process is closer to my true “drug free” thought process.

    I do not have insurance that covers holistic treatments like acupuncture and massage. But I know these are a couple of the only things that I have had in the past that help with the spinal and limb stiffness. I find it unfortunate that I was not made aware of the possible side effects-withdrawals, considering I took it so long. I am hoping for the best and trying to ignore how much I struggle until the 1yr mark. I will do anything, everything, whatever it takes to avoid taking either of these anticonvulsants again.

    My eyes are a little worse than a yr ago today and I have muffled, or muted ringing in my left ear still as well. I NEVER would have contributed ear symptoms with the drugs, especially since my titanium equipment is on my left side and in my sinuses. Tinnitus and progressive hearing loss is something I was managing from a re-injury, or so I thought. After my anvil implant I have been a happier, more comfortable gal. But I’m hoping that the ear symptoms will slowly regress the longer I am drug free.

    I appreciate reading all the input and hope my rant can confirm and council someone as well! Any tips on how to regain physical confidence and motivation after being a dumb boring drugged up weirdie for so long?

  • Shana July 18, 2015, 2:43 am

    I have been on it for 6 days, 50mg twice a day for 4 days. I noticed my eyes could not focus so I called my doctor no one has called me back. I cut it down to one pill Thursday and one pill today, I do not plan on taking any more. I was only on it for weight loss so I pray that it was not long enough to do any long lasting damage and that I will not have too many withdrawal problems. I go back to work in two and I need to be able to drive and read and work on the computer so I hope everything goes back to normal. I hope all of you get better really soon as well, this is a terrible drug!

  • Amanda July 27, 2015, 3:39 pm

    I’ve been on Topamax for 2 years. I’ve been tapering off for 2 weeks now. I went to my doctor complaining of left side chest pain…more to the point a feeling of a leg cramp in my chest wall that happens over and over again. His solution was to put me on the “new” Trokendi which is Topamax extended release. That way Topamax is NEVER out of your system and your side effects are lessened.

    It worked for a while, but then when they pharmacy wanted a prior-auth and the office never got back to them, I just decided on my own that I would suffer with the migraines rather then the chest pain. Done with it. I’m still having the chest/back pain and hopefully that will subside with time. I am also experiencing the anger bursts which I thought was due to something else…but my boyfriend will be glad to know that I’m not going crazy after all. Thanks for the tips.

  • Jill July 30, 2015, 11:39 pm

    I am so glad I found this website. I’m kind of scared now though after reading about 50 comments. I have taken 150 mg of Topamax, 50mg in the morning and 100mg at bedtime for quite a few years. This was for migraines. Recently, I told my doctor I wanted to go off of it because it hadn’t helped me for a long time. He just told me not to go cold turkey, but didn’t tell me how fast to discontinue the pills.

    I went down 50 mg a week and had my last pill about a week ago. Two days ago I started feeling nauseas, body pain, and a severe headache. I had just worked out and it’s very hot here, so I thought it may have been the heat and my arthritis. Now I know what it is! I’ve felt like I have the flu and I never get sick. Just constant headaches. I think I was having side effects from taking it now too from reading this.

    Confusion, tingling, dropping words and fatigue. I am going to take 50 mg tonight and call my doctor tomorrow. I still want off this drug! I wish everyone the best. This information needs to get out to everyone and be printed on the sheet that comes with the prescription. This is horrible!

  • Ashley August 4, 2015, 2:27 pm

    I was only on topamax for a few days – less than a week – at 50 mg when I started having eye pain. I initially thought nothing of it, but I did think something of the peripheral neuropathy I was having and that seemed somewhat scary to me considering I was otherwise perfectly healthy (sans TBI and migraines) and only 26. I came across an article from an optmalogist warning people about acute glaucoma from topamax (or as I like to call it dopamax) and how he saw a patient who was otherwise healthy but had migraines go blind from this medicine after only a few days of taking it.

    I called my pharmacist and stopped the drug immediately. Apparently feeling like you’ve been crying all day is the sign of a severe reaction that leads to blindness. As of last night I stopped, and so far I can’t stop sleeping and my joints and muscles were killing me. I hope that’s all it is for a few days and then I’m back to normal. The hospital gave me SO MUCH B.S. for smoking weed because it helps my migraines meanwhile they prescribe me a medication that can make me go blind and I’m the one with the problem?! Galileo was a heretic once too for saying the earth was round!

  • BARB August 6, 2015, 3:07 am

    Been on topamax for 5 years for migraines. I take 200 mg. Started botox, so I want to eventually get off. Weaning down 25mg the first week, some rebound headache the first day. Second week some increase in anxiety and nausea. This will probably go away. I will stay at 150mg for a few weeks and try another 25mg when I feel ready. Unless my headaches become worse, I’m going to continue to taper. I am also on 150 mg lyrica and 30mg nortripyline.

  • Laura August 8, 2015, 7:03 pm

    I was on topamax for about 6 months and I started noticing right away that I had blurred vision, anxiety, tingling in the hands/feet and mood swings. My doc moved me up to 50mg and it slowly got worse and I started having chest pain and muscle pain as well. Doc said I was crazy the medicine wouldn’t cause any of that but I never had any of it before topamax so I started tapering off and now I’ve been off for 4 days the anxiety is completely gone but the chest pain is hanging around. Anyone else ever had any of these problems?

  • Becky August 13, 2015, 4:23 am

    Excellent feedback. I’m sitting here wondering if I should try to taper. I went cold turkey almost a week ago. I’ve felt nauseated, had a hangover type headache and back aches. I also started my period (on schedule) the same week. I thought many symptoms were due to pms, etc. Did anyone have mild symptoms and how long did they last? Parting question…how is this a legal drug and marijuana is not?

  • Buffy August 16, 2015, 5:50 pm

    Great Article! Thanks for all the helpful info! Side note for people with migraines: LOOK at what you are EATING. Your Diet can be a big part of your migraines and most doctors don’t teach this. I suffered from migraines for 8+ years, finally got on Topamax (which helped initially) but I still had migraines, & definitely could not think straight…always foggy!

    Eventually, I had a food allergy test done and found out I have food allergies. (for example: I’m highly allergic to beef & garlic, which is in everything that tastes good…when you put “poisons” into your body, it does not matter what medication you are taking!) If this is your issue, take it from me, changing your diet takes practice, and there can be lots of trial and error!

    The first time I tapered off of Topamax, my headaches returned (I believe due to eating improperly) and my Dr. put me back on it. After many years of being on Topamax, I am over it. I FINALLY understand the cause of my migraines! Now, I am tapering off for a 2nd time, eating according to plan, and I am experiencing insomnia and muscle pain, but no headaches! This website is empowering and validating! Thank you!

  • Jen G September 13, 2015, 7:33 pm

    I’m on 100mg of Topamax at night and have not been able to take it the past 2 nights. On night two I had what must have been sleep paralysis, which resulted in a panic attack in my sleep. I had the worst nightmares ever, stuck in my bed feeling paralyzed and helpless. It took me what felt like forever to snap out of it. Could this sleep paralysis/nightmare/panic attack be a result of me not taking my meds for 2 days? I didn’t think I would withdraw after only two days but the dream scared me so much, I just want an explanation why it happened. I’m on 300mg Wellbutrin and 20mg Latuda and have been taking those as prescribed, just not the Topamax.

    • daisy November 14, 2015, 9:38 am

      I have been on 100mg. of Topamax 3 times a day for about 10 years for migraines! I am now trying to wean off it for the 2nd miserable time. I hate the drug! I have had every side effect on the list. With my eyes, losing 3/4 of my hair and all the above. I also am on 450mg of wellbutrin and have been on it for many years. My Doctor then tried putting me on Latuda and within about 2-3 weeks I woke up with the worst nightmare paralyzing panic attack ever!!

      I thought I was going to die, I didn’t know how to move and I thought I was suffocating. It seemed to last forever. The next day I called my Dr. and he told me to stop taking the Latuda, and that in some cases it cause Extreme panic attacks! I’ve never experienced it again although I do get anxiety attacks, but they are nothing like that!

  • Kelly September 16, 2015, 1:19 pm

    I have been on Topamax for over a year, taking up to 200mg for depression and impulsivity. I was on 125mg and my Dr. told me to just stop taking it. It’s been 2 weeks now and I am still having problems with dizziness, nausea and body aches. I’ve also been experiencing a lot of headaches and some insomnia. I had to go to the ER last week due to dehydration on top of these symptoms. Of course all of my lab work came back “normal”, so they sent me home having no idea what was wrong with me. But now I know what’s going on!! Thank you so much for this article, it has been very insightful for my recovery.

  • Andrew September 25, 2015, 2:33 am

    I have been on Topamax for three years 200mg a day, as a mood stabilizer. At the beginning when I first started taking the med I really didn’t notice anything thing weird or different. I just thought the symptoms and feelings I had were caused maybe from something else I never related it to the pill. Little did I know this medication was causing me blurry vision, sever muscle cramps that would wake me up in agonizing pain at night, dehydration, twitches, tremors, paranoia, very easily agitated, bothered and acid reflux which I had to start taking medication for it.

    Topamax changes the acidity of your blood and its so acidic that causes GERD. After reading this article and doing some of my own research I decided its time to stop taking this horrible drug. Its poison, I have just recently cut back now for a week from 200mg to 100mg a day. I can already see changes I no longer have acid reflux any longer but still take the medication to prevent it, my family and girlfriend say they notice a change in how I react to things I am more passive and not so high-strong.

    I do though take alprazolam 1mg sometimes 2mg a day because of the anxiety I get since I cut back which helps tremendously. I cannot wait to drop down from 100mg to 50mg next week, let see how it goes. And for all those who are struggling with withdrawal of this medication do not get back on it you are stronger than a pill no matter what anyone says you are in control and can over come this! This medication is horrible and harmful to your body. You all will overcome this and we all will not take this drug anymore that is harming us.

  • Melissa September 28, 2015, 3:36 pm

    I have been on Topamax for migraines for over a year, and noticed the blurry vision within a few weeks of taking it. I didn’t realize at first that it was a side effect – I chalked it up to getting older and thinking it was finally time for reading glasses. I broke down a few weeks ago and bought a pair, and it made a huge difference.

    My problem was that even being on the med (increased to 50 mg a day after two weeks), I was still having migraines at least once a month. I finally decided that I would go off and see if my vision got better – and it did! I don’t need the reading glasses to read up close or to read my laptop (which I work on all day). In my opinion, it’s not worth the chance of harming my eyesight to continue taking it.

    Yes, my appetite increased and I gained about 6 pounds, but I am working on getting that taken care of and after two weeks, I don’t feel hungry all the time. I decided I’d rather take Excedrin Migraine prophylactically every day to help prevent the migraines than take this stuff anymore. I am scheduling an eye doctor visit just to be sure, but I KNOW that’s the answer.

    I also read another commenter that stated that they were forgetting words – OMG, that is me and that is NOT like me! I will be excited if that diminishes. I do have to say that while tapering, I have been excessively fatigued, but it does feel like it’s abating.

  • Cynthia October 10, 2015, 2:49 pm

    I have been taking Topamax (100mg per day) in the last 5 months, and I am supposed to stop taking it at the end of November, as my neurologist has prescribed it for my migraines for only 6 months. I have seen major health improvements and apart from a bit of weight loss, I have not had any other significant side effects.

    However, I am VERY worried about the withdrawal process, especially because I am in my final year at University and I my final project is due in December, just a month after I finish with my treatment – so the lack of concentration, insomnia, dizziness, anxiety etc are really not welcome now. Do you think I should extend my treatment for one more month? Or do you think that extending it would cause more harm than the actual withdrawal?

  • Jessica October 14, 2015, 2:19 am

    I’ve been on 200mg/day for a long time now for migraines and 5 days ago I ran out without refills. I called my doctors office numerous times and couldn’t get my refill until tonight. The day after I ran out of my medication I immediately felt withdrawal symptoms. Almost everything listed except seizures. I had a migraine for days and couldn’t get out of bed. As soon as I got my refill and took my dose, I felt the withdrawal symptoms lightening. I never want to go through that again.

  • Nancy October 19, 2015, 6:23 am

    I feel like I’m in a roomful of people who all just get it. I came in to try to figure out if I am right in trying to go off Topamax. I’ve been on it for 8 years for migraines. At first, it was awful, I felt like a cloud had descended on me and I lost my cognitive abilities, but the headaches and vertigo abated. However, nobody, my doctor included, ever told me that the tinnitus, the anxiety, the blurry vision, the memory loss, the sudden mood swings, and whatever else could possibly be connected.

    So, now I want to go off it. My headaches are back daily anyway, so why not? The question is – how is everyone holding down their jobs while they go through withdrawals? I have a relatively high profile position at the company; I can’t become a quivering mess for weeks on end.

    • B July 24, 2016, 4:50 pm

      I’ve been taking Topamax for 8 years too. We have to go down really slowly. If you taper 25 mg in 2 week increments, you don’t give your dose, but for example 100 mg.

      -First step down is 25/100 = 25%.
      -Second step is (25+25) or 50/100 = 50%.
      -Third step is (25+50) or 75/100 75%
      -Fourth step down is = 100%.

      Each step down is a percent of the total dose your brain has become used to, you can’t go 25% then in 2 weeks 50%, and two more 75% then two more and wham 100%. In 6 weeks after 8 years that’s too much. The steps can be taken for a month, six weeks or until you feel ready.

      There are 25 mg tablets which can be broken in half. Those of us at higher doses for longer periods have to be kinder to our brains, go slow and steady, if we want this to work, and not wreck the function we still have left!

  • Theresa October 20, 2015, 12:58 am

    I was on topamax (50 twice daily) for a little over 8 yrs. I tried tapering off about a year ago and had to stop the withdrawal effects were too much. About 3 months ago I started tapering again, much slower this time. I have been off completely for a month. I am still having horrible nausea, vomiting, and dizziness. I saw my physician today and he said it could take months for the symptoms to completely disappear. I will never start taking this med again or any other meds long term.

  • Stefanie October 23, 2015, 8:22 pm

    I started Topamax 50mg twice per day around December 2013 for headaches/migraines. I initially had good control with minimal adverse side effects. About six months later the headaches and migraines re-emerged, so my doctor and I decided to increase my dose to 50mg in the morning and 100mg at night. Three days later, I was driving to the grocery store and I suddenly began crying and wishing I did not have to exist. I had no will to live, but also no real will to die.

    I just had no motivation to do anything but lie in bed and cry. After three weeks of debilitating misery and suicidal wishes, I realized the sudden onset of severe depression was likely related to the increased dosage of Topmax. I spoke with my doctor, who decided to add Wellbutrin 150mg twice daily to counter those effects. Another drug. Yay. Slowly but surely, my mood improved (though not quite to my usual happy, easygoing baseline pre-Topamax).

    Fast forward to October 2015. I was unexpectedly out of Topamax for five days. So essentially I had quit cold turkey. I began experiencing debilitating panic attacks, confusion, crying spells (plus the headaches that had been under pretty good control). I’ve never felt such a feeling of impending doom. It has been awful. I can only assume that these are symptoms of withdrawal from the Topamax.

    I’ve now resumed my normal dose of Topamax. I hope that the panic attacks, confusion, and anxiety are temporary and will resolve once the therapeutic threshold has been met again. What a horrible experience. If you are thinking of quitting Topamax, please please please TAPER OFF!

  • Cheryl October 26, 2015, 12:21 pm

    I’ve only been on 50mg of this horrible drug for 2 years and after reading what could happen just tapering started slowly cutting 12.5 out, the side effects from just that have been awful!! I’m having panic attacks, irritability, depression and sweats! I’m determined to do this though! And yes I’m very sensitive to medication.

  • Inez November 2, 2015, 6:51 pm

    Took 25mg for 8 years. Never missed a dosage and no migraines during its therapy. My migraines were related to mymenstruation and hormones. After rntering menopause, decided to stop it. Cut dosage to half (12.5mg) for 2 weeks, then off. Experienced mild headaches for several days managed with ibuprofen. Had strong pressure on my head when going from sitting to standing for 1 week on and off. Had insomnia and some mood swings or anger that I suppressed well. I stopped because the blurring of vision.

    No optometrist can give me a pair of prescription glasses that would resolve this vision problem. And the ringing in my ears is quite loud. Have been on zero for 1 week and still eye sight blurred bit ringing less loud. Still having palpitations and insomnia. I would start it again if was not for the ringing and eye sight tha is quite anoying. Hope to get my silence and eyesight back.

  • Rachel November 6, 2015, 6:24 am

    I’m tapering from 200 mg and I’ve been taking it since 2000. I’m scared to go off but know that it’s time. It’s been a gift and a blessing and I wouldn’t want the negative comments here to discourage one who needs a daily med from taking it to do so. My own daughter does and I will continue to have her take it. There is a season for everything. My season of effectiveness has passed. Perhaps one day it will once again be a useful tool. For now, thank you for your comments as I am up, tapering, nauseous, sleepless, itching all over, unable to think straight and only down to 100 mg in 2.5 weeks.

  • Lynnie November 9, 2015, 4:52 am

    Thank you everyone! :) I’M NOT A CRAZY PERSON!!! (apparently I owe my husband some huge apologies and let him know he isn’t an ogre! – but at least I’m not nuts!) Took first dose of botox which has guaranteed me a daily migraine because of failure of other drugs. Last visit he wanted to put me on a time-released Gabapentin (that you have to titrate up… “but it’s safe” hahahahaha!).

    I went in with concerns about botox not working, got another drug. Not happy. I suffer with fibromyalgia also, as well as auto-immune everything. Also lost large intestine to ulcerative colitis and get dehydrated all on my own. Addition of meds were in response to complaint of extreme fatigue, continued migraine, and daily nausea, crying, anxiety, anger, etc.

    However I already take 34 pills daily and was PISSED that he just wanted to add 6 more. I determined that instead of adding meds, I’m ready to get rid of them. I hurt like hell taking them, and not taking them, so why am I wasting my money? After realizing I didn’t pick up topirimate from pharmacy, and then seeing this post, I see that my worse fibromyalgia may not be that, but rather withdrawals. I’m on the fence about starting on a lower dose and tapering off again, as I’ve already done 6 days sans drug.

    (Dose was 50mg at night. Never took migraines away. Never lost weight except in my wallet.) I guess if it gets totally unbearable I’ll have to go on and titrate off. I’m just hoping I’m more pissed off than I am sick, so I can stay focused on getting off this drug that has stolen my last year. If anyone does a class action, I’m in.

  • Mark November 12, 2015, 1:11 pm

    I took Topamax (topiramate, more accurately) from July of 2010 through January of 2013 with a maximum dose of 150mg/day and experienced withdrawal symptoms that lasted much longer than just a few weeks or months. These included, but were not limited to: seizure, changes in my vision and hearing, significant cognitive and psychomotor impairment, dramatic emotional changes (anxiety, panic attacks, depression, rage, altered states, etc).

    The situation was complicated by my already being in withdrawal from antidepressant and antipsychotic medications for the 6-12 months preceding my tapering off of Topamax, but there were noticeable additional contributions of side effects from Topamax for 1-2 years after I tapered completely off it. This is especially evident because I was not taking Topamax as an anticonvulsant or for any other neurological problems and had never experienced seizures like that before discontinuing Topamax.

    It was the last medication from my final cocktail that I tapered off of, as I spent 13 months discontinuing them one at a time, and I am STILL in withdrawal from those collective medications four years later.

  • TM December 6, 2015, 5:52 pm

    You write, glibly, “Fortunately most people end up having more problems with side effects from the medication than they do with any sort of major withdrawal.” I’ve been through hell on this medication and still have a long, uncertain climb—with a broken mind, body, and spirit—to extricate myself from this pit. My family and friends have been through hell, too, watching me waste, replace mentation with base, often emotional reaction, endure bouts of aphasia while titrating, and writhe in pain. The doctors and the dead ends. The frustration. Now, the fear that it took me too long to realize this drug was the culprit; and I’m only halfway through tapering. Last night I did experience some significant withdrawal effects but, fortunately, they have generally been insignificant compared to its life-shattering side effects.

    • B July 24, 2016, 5:05 pm

      Very well put. I used to be a voracious reader and learner, interested in so many things. With migraines. 8 years in, It can be hard to read anything significant for long. Tapering really slowly. Can you provide details of how fast you tapered and how long it took to feel like “yourself” mentally. I’m hoping that you do again, after what you’ve been through.

  • c. gifford December 13, 2015, 3:28 pm

    I decreased my topamax by half doses for 2 weeks at a time, my last dose was 3 weeks ago and I’m still having the damn side effects! I’m shaky, dizzy and feeling muscle weakness. I just want this to stop!!

    • Donna Rinn October 12, 2016, 3:37 pm

      I just wish I could HUG EACH AND EVERY ONE OF YOU. BE STRONG!

  • Cathy December 31, 2015, 8:03 pm

    I’ve only been on this stuff for a month and I want OFF! It was prescribed for headaches, but the side effects of dizziness blurred vision fogginess, like feeling high, kinda confused, can’t think of words!! NO WAY!! I’ll deal with the headaches! Nothing tastes the same! I’m only taking 50mg a day I can’t imagine taking any more and functioning! BEWARE PEOPLE! This stuff isn’t for everyone, certainly not for me! I called my pharmacist he said start taking every other day for a couple weeks to taper off, but he didn’t say for how long! Any suggestions?

  • P January 22, 2016, 7:08 pm

    I’ve been on 50 mg daily dose of Topamax for 1-1/2 years for migraines. Other than staying away from carbonated products, I didn’t really get any side effects (not even the losing weight – darn!). I had a hysterectomy last year, so my migraines have decreased by half (mine started due to hormone surges and ablation surgery 5 years ago).

    With my migraine doctor’s help, I am now tapering off Topamax. I went straight to 25 mg for the past two weeks until my prescription runs out that I have on hand. I don’t feel any differently, so we’ll see what happens in the next few weeks when all of it is out of my body.

    It will also be interesting to see how the next six months play out with my migraines…to see if the Topamax was making a difference anyway.

  • Alex January 26, 2016, 1:11 pm

    I was taking topamax for 5 years. A relatively low dose, 50mg at night. I tapered for about a week and quit. However, I’ve been severely depressed. It has been to the point where I can’t get out of bed, go to work, and I cry all the time. I have always suffered from depression and I was getting really worried as to why it has increased so dramatically. This article has made me feel better that this is a side effect. However, I’m afraid I may have to continue taking the medication to stabilize my mood.

  • Valerie_Roman January 31, 2016, 3:14 am

    Thank you so much for taking the time write this! And thank you as well to the people that also commented, there is so much helpful information in the article and the comment section! I am terrified to wean off of dopamax err, Topamax, currently at 100 mg for migraine treatment; been on it for almost 3 years now. It’s no longer working effectively, and although I know I can (very easily) get my dosage increased, after doing my own research.

    I now realize that the risks and side effects (especially long term) far out weigh the benefits. In this day and age we basically have to be our own doctor and merely visit one with a legit title and piece of paper behind their name with our own research, remedies, and suggestions in hand in order to get the (best/well meaning) care we truly need. If I am going to have headaches anyway, I may as well be off of this drug and get my life back!

  • Diana January 31, 2016, 5:29 am

    I started taking Topiramate as prescribed by my Doctors as my regular preventative Sandomigran isn’t available (distribution issues here in Australia) but didn’t last 9 days. The overwhelming nausea, dizziness, fatigue and head fuzziness along with other symptoms were unbearable. I’ve been off it 3 days and I’ve had some side effects including: muscle pain, nausea, fatigue… but at least my head is now clear. Never again.

  • Nova February 3, 2016, 12:38 pm

    I am currently trying to get myself off of topamax. I take 50mg a day for bipolar disorder. I also suffer from borderline personality disorder. My doctor is having me taking buspar while I try to get myself off topamax. The side effects were horrible. The withdrawal effects are even worse. I tried to go yesterday without taking any, but by late afternoon my agitation had gotten so bad I literally wanted to crawl out of my skin.

    My anger and aggression is out of hand in just a few days. I felt like I was having a nervous breakdown while trying to get ready for work this morning I couldn’t stop crying. This is exactly why I never wanted to take meds for my mental illness. My mind is so confused I feel like this paragraph makes no sense. I am an internet tech support specialist so I am very intelligent, this is just a prime example of how this medicine is causing me problems…

  • Karen February 4, 2016, 6:40 pm

    I was on 100mg of topamax for about a year twice. I went off once and then was put back on when the headaches kept coming back. It has been 35 days since I slowly tapered off at 25mg’s every two weeks. Was feeling great and then about a week ago left head pain and ear pain back. It’s consistent and doesn’t stop.

    I take an Advil to help cut the pain but it comes back as I don’t want to jump back in taking topamax. I’ve had 3 major migraines in the past along with consistent lower grade head pain. One for 30 days, one 60 and one 90 days. At level 8 to 10’s. Felt like a grenade was exploding in my head. Extensive testing done MRI’s, scans etc. nothing wrong.

    Tried everything, multiple neurologists, did acupuncture tried just about every medicine in the book. All I do is research on my own as no one really has an answer. I feel badly for everyone who suffers from migraines… not good.

  • Paula February 5, 2016, 4:23 pm

    I’ve been on Topamax for over 10 years (treatment for complex migraines with seizure and stroke like symptoms ) as much as 400Mg a day. That dose gave me serotonin syndrome (a build up of too much serotonin in the brain) and I almost went into a coma. I tried going off, but my neuro tapered too quickly and I literally felt like throwing myself out the window and down the hallway steps.

    I now take 100Mg a day and during extreme weather conditions will up dosage to 200. Insurance does not cover brand Topamax and I can’t take generics, most of which contain gluten. The cost is astronomical at over $800.00 a month. I would like to try to taper off again, but I am afraid!!!

  • Kristie February 6, 2016, 3:36 am

    I am so grateful for finding this website. I knew some of the withdrawal symptoms because they are the same as when you first start but some of the others I had no idea and reading what others have gone through? So helpful. I’ve been on Topamax for migraines that were brought on by Letrozole. It’s a hormone based aromatase inhibitor used for breast cancer treatment. After 5 years I’m finally off that drug so I can finally get off the Topamax.

    I had NO idea that part of my brain fog was Topamax not just chemo brain compounded by Letrozole. I’ve cut back from 75mg twice a day to 50mg and can already feel a difference. I’m a zombie as far as fatigue is concerned but now I know there’s an end and soon I feel so much better, and the nausea. I’m babbling I know but I’m so grateful to have found this site. You folks are a godsend.

  • Kara February 7, 2016, 8:34 pm

    I have been on Topamax for two weeks. Same symptoms as above. I have had blurred vision, foggy brain, trouble with word recall and so on. I was using the med for migraines. My neurologist prescribed Sumatriptan in combination with Topamax. (I have been prescribed Sumatriptan before with no problem) I had a reaction to theses meds and had temporary blindness.

    Went to ER, they said if I took it again, I would have permanent blindness and stroke. Now I am going through withdrawal just after two weeks. This drug is a serious drug. I would really look at the pros and cons before taking this med. I consider this med deadly or at least for me.

  • Susan February 9, 2016, 4:18 am

    I was on this medication for about two years for migraines and had some minor symptoms while on it. My migraines were under control due to me becoming more aware of triggers and some lifestyle changes to remove unnecessary stress. So I was titrated down off the meds and didn’t experience withdrawal symptoms to the degree that some have. And they completely disappeared after a few weeks.

    However, I went back on 50 mg for 4 days just recently when my migraines returned due to some stress. I did then experience the side effects, particularly the foggy brain and balance issues. I immediately stopped taking the med cold turkey. The next day my head cleared of the fog. I had no sick stomach, appetite seems to be returning, but I am still a bit dizzy. My shoulders and neck feel sort of tight bunched up. I am seeing a chiropractor for that to help. I’m thinking that this will pass within a few days.

  • Diana February 14, 2016, 9:13 am

    Update… I must admit I am starting to feel a little better (I’ve been off it just over 2 weeks) but I was only on it for 9 days but they were the worst 9 days. Up until the last few days I had no appetite, still felt nauseated and struggled with some pretty bad muscle pain which woke me up every night, last night was the first night I slept through.

    I still feel really tired, but no more dizziness. I am hoping to stay off Sandomigran. Only a couple of minor headaches so far. Went back to the doctors recently and got a script for Maxalt wafers to try instead of sumatriptan as it makes me really drowsy. Hope everyone feels a lot better really soon.

  • Joy February 24, 2016, 3:46 am

    The side effects I experienced from Topamax were crying spells, depression, nausea, muscle pain especially in my neck and shoulders, and my headaches were worse. I didn’t realize it was the Topamax at first. My neurologist did not realize it either. He actually wanted me to increase my dose when I complained of my symptoms. I am now tapering off. I can handle a daily headache, but I cannot handle a daily headache and everything else Topamax has done to me. Thank you for all of your posts. It helps to know that I am not alone.

  • Veronica February 24, 2016, 3:24 pm

    My daughter 16 yrs old, which has bad migraine headaches, started the lowest dose of Topamax 25mg on Friday February 19, initial dose. About 30 minutes later she was having chest pain, sob, bad tremors & spacing out. Rushed her to the emergency room where they made us wait 2 hours in the waiting room. By the time we got to the back she had calmed down a bit.

    After waiting in the ER they only advised that unfortunately she experienced some bad side effects & were about to send us on our way after 4 hours total. I reminded them of her chest pain & they decided to do an EKG on her. I have not & will not give her Topamax ever again. It has been 4 days now & almost everyday she has experienced those same effects.

    She has not been able to function well since that damn pill. We are very scared especially her & hope there is no permanent damage. Please any information anyone has will be greatly appreciated. I don’t know if to rush her to the ER again or what? I am so confused & feel lost on what to do! Help…

  • Arlene February 27, 2016, 12:41 pm

    I have been taking Topamax 100 mg for several years for migraine prevention. It helped me quite a bit. I have had large kidney stones. The last time I saw my urologist he presented me with a report which stated that taking Topamax has been proven to cause kidney stones and advised me to discontinue the medicine as soon as possible.

    I did stop taking the medicine and now have had the most severe migraines I have ever had. These have continued daily for over a month, since the time I quit Topamax. See your doctor for help with the withdrawal symptoms. I researched and found Depakote can be used to prevent migraines. I’m going to discuss this with my doctor.

    This is a drug with serious consequences! Be careful please. If you have kidney stones, please do the research regarding Topamax causing them and weigh the consequences of continuing this medication.

  • Jane March 8, 2016, 4:08 pm

    Wow! Was I ever happy to find this website! I have just recently stopped Topamax after taking it about 10 years – what a nightmare! My doctor never even mentioned the possibility of withdrawal symptoms! I was weaned off in a matter of two weeks, WAY too fast. It’s now been a week since I finished my last dose – I have about every withdrawal symptom people have mentioned… COLD SWEATS -OMG, they’re awful!

    Headache (which is what I’ve been taking it for – same headache for the past 11years!), muscle pain, feels like I have cobwebs in my brain, anxiety, joint pain, etc. Had I known I would’ve never even started!! I’m determined to get through this-I refuse to start it up again! Sorry this is such a long post, I’m hoping for all of you withdrawing that the symptoms are mild and end quickly!

  • Karen March 12, 2016, 3:10 pm

    I took Topamax 50mg three times a day for 10 years. It was prescribed for CRPS (Complex Regional Pain Syndrome) in 2006. I am now 5 days off (tapered slowly over 6 weeks), my doctor recommended this to see if it will stop occasional seizures I am having. The symptoms of CRPS are back also: My joints ache, my muscles ache, I have headaches every morning and later. My left leg is HOT. It feels like I am sitting next to a fire. On one hand I hope it stops the seizures on the other I want to go back on it so the CRPS is controlled.

  • Patricia March 13, 2016, 2:15 am

    All I want to know is – will your hearing come back to normal after weaning off the medication? I have been on 100 mg for over a year now. Has anyone else had this issue?

  • Ashley March 20, 2016, 5:02 pm

    Currently going through withdraw. Don’t feel like myself and have been getting dizzy, along with having trouble sleeping. I have been on one pill a day for almost two years. Just wondering how long this is gonna last.

  • melissa March 22, 2016, 1:53 am

    This med is awful. I don’t ever want to go on it again. I’m in withdrawal and it’s like someone coming off crack. I was only on it for 3 months… hope it ends quick.

  • Beth March 25, 2016, 7:56 pm

    Thank you so much for the article and thank you to everyone who has shared their story. I’ve been on topamax for about 4 years for migraine prevention after several months of frequent migraines that included an almost constant migraine for 6 weeks. During the four years, I was diagnosed with other issues and put on Lyrica and Savella for nerve pain from fibromyalgia and spinal stenosis.

    I feel lethargic, really disconnected from everyone and I want to be me again so my doctor suggested eliminating the topamax. I was on 100 and he dropped me to 50. It’s been 4 days and I have splitting headaches everyday. At first I thought it might be sinus since spring has sprung where I live but i have no other allergy symptoms.

    I’m on a little getaway at a casino resort with my hubby and I feel so bad that I can’t stand to be in the casino and I am not much fun. Really bad timing. I wish I could know for sure that this will end or if I need the Topamax to control the headaches.

  • Lorrie Kelly March 26, 2016, 8:33 am

    I have been on Topamax since 2000 & take 200 mg a day. My head felt cloudy & finding words when I needed them were hard at times. One month ago I started to go off slowly by taking 75mg in the morning, 100 at night. I did this for one week. I then started 50mg in the morning, & 75 mg at night. I did this for two days & a terrible migraine started so I went back to 150 mg a day & my headaches left.

    Also I am taking 120mg verapamil for cluster migraines. Which I have been taking for 4 months. I am going to cut down 12.5 this next week in the morning for 3 weeks & hope this goes well. I came down with cluster migraines this last summer – fall even though I was taking Topamax. Verapamil has helped so much & I am hoping that it will help me get down to at least 50 mg a day.

  • Cat March 31, 2016, 4:49 pm

    Reading the symptoms of others convinced me that I am not crazy. I was worried I had lost my mind with this feeling of panic and insomnia that no one warned me might happen. Then the sudden sweating was overwhelming. I am now hoping it doesn’t last more than a few days!

  • Anny April 7, 2016, 10:04 pm

    I stopped taking Topamax cold turkey because after only 3 weeks of use it completely plummeted me back into my depression. I’m being treated for it and I was doing very well until the Topamax. I couldn’t stand being that depressed again so I just stopped taking it and I’ve had terrible insomnia and also had a small panic attack. It’s been 6 days now and last night sleep has greatly improved. I’m hoping the anxiety and shakiness continues to fade as well.

  • Katie April 25, 2016, 7:51 pm

    I have been on topamax for 3-4 years, maybe even longer, but thanks to the side effects, I can’t even remember. It’s good to know the severity or lack there regarding the withdraw symptoms. I have been on 100mg 2x a day for a while and in the beginning of April I tapered my dose down to 100mg 1x a day in the morning. The only side effect I noticed at the time was a little increase in anxiety at night and insomnia, and rebound headaches.

    Everything lasted no more than 2 weeks and I was still able to function (minus one day). Instead of completely stopping topamax from a dose of 100mg, I think I might start tapering it by taking it every other day for a month or so and then stop all together. It really hasn’t done much for my migraines as of late and the side effects are not worth it at all especially for a medicine that isn’t doing what it’s intended to do.

    Luckily I had no weight loss tho. I started at about 105, lowest I got was 101, highest I got was 112. I noticed a difference in my taste buds in the very beginning but I never had an issue with pop. Good luck to everyone on this med and everyone trying to get off. :)

  • Shelly Lavallee April 28, 2016, 1:59 pm

    I’ve been on Topamax for over 10 years I was taking a hundred milligrams a day for about 4 years. I took myself off the medication 2 months ago because the medication seemed like it was not working for me anymore when it came to my weight loss. Going through menopause and taking Topamax does not go together too well especially if you’ve been on Topamax for several years, Topamax stops working!!

    I’m still getting withdrawal feelings. I’m getting a lot of nausea feelings. I put on 25 pounds in 2 years, I put on 10 pounds in the last month. I’m hoping in another month or so I can start my Topamax again once I feel it’s totally out of my system and then I can lose the weight that I have gained. I really do think going through menopause causes a lot of problems with the Topamax.

  • Amanda April 30, 2016, 7:53 am

    I was on 300mg of Topamax for chronic migraines… I started it in 2008, and tried to come off this year… it worked well for about 7 years but it kinda lost its effectiveness. My doc and I discussed and I started to wean off slowly cutting down the dose every fortnight. It’s been 2 months I’m now off it and I have never been SO ill in my life.

    I’ve had agonizing neck pain, headaches/migraines, vertigo, nausea, ravenous appetite, nightmares, gained weight, I’m sleepy, moody and have to take a lot of Maxalt wafers and Imigran, painkillers… you get the idea. This is no way of living. I didn’t realize how much relief these tablets gave me, until I stopped them. Can’t cope – going back on ASAP!

  • Hannah May 4, 2016, 7:37 am

    I have been on 100mg for 2 years and am (quickly!) tapering off. I’m only taking 25mg at night now. It’s worked really well for my migraines but I’m young and would like to be medication free. Acupuncture is in my future. I’ve had off the charts anxiety! My heart seems to always be pounding and I just feel paranoid.

    Not like someone is out to get me, but like there’s something really wrong with me and I’m super sick? It’s such an odd feeling and hard to explain. It’s reassuring and comforting to know other people have the same symptoms (unfortunately!). I’ve been feeling like this since the beginning of tapering down and praying it doesn’t last much longer!

  • Heather Holthouser May 10, 2016, 9:18 pm

    I’m so thankful I found this article before I lost my mind! I’ve taken Topamax for 2 years at 200 mg for chronic daily migraines. While in the beginning it seemed to help the intensity of my migraines, in the last few months it hasn’t helped much at all. My neuro knew that I had wanted to quit taking any of the 7 medications that I am currently on at my visit in April, so he suggested we quit the Topamax.

    He told me to cut down 50 mg per week. Last Monday, I was down to 100 mg and began to start feeling some effects around Saturday night with a stiff neck and insomnia. I didn’t think much of it and celebrated Mother’s Day and college graduation with my family. By Sunday night, I felt really rough. I felt like I had electricity coursing through my veins and hyper sensitivity on my skin.

    I tried to go to bed early, but again, insomnia. Yesterday and today have been the worst. The muscle cramps, the mood swings, and these are just compounded on everything else. My doc called to check on me yesterday and I explained my symptoms to him. He said that he may have weaned me too quickly and called me in a refill. Now, I’m supposed to stay at 100 mg for this week and then cut it down to 50 mg for 2 weeks.

    I’m afraid that these withdrawal symptoms are here for a while. This pain is ridiculous!!!

    • Heather May 19, 2016, 11:15 pm

      I am currently going through withdrawals. I like how you described the skin, hypersensitive. I think of it as electricity, especially down the back of my arms. I’ve done the weaning and when my doctor saw me last, she put me on disability to go through the symptoms.

  • JJ May 27, 2016, 11:43 am

    I’ve been taking Topamax for migraines 10+ years, my Neurologist said these pills are my last hope as Botox treatment doesn’t work & outrageously expensive ($3000/month for both sides) I was on 200mg/day my refills ran out. Withdrawal symptoms were horrible I was so dizzy I fainted fell on the floor, blurry vision having trouble reading words, insomnia even with sleeping pills, nerve pain, anger/irritable especially driving. Lack of motivation. My GP gave me a pep talk to fill the prescription.

  • Amanda June 2, 2016, 4:43 pm

    Ran out and have to wait until I get paid again to get my refill (2 weeks)… Migraines (and neck pain from injury which is why I am on it) are back in full swing, so yes, the meds help…but these withdrawal symptoms, (nausea/pain/car sickness/fogginess/muscle weakness, etc.) are horrible!

    Also, I get NIGHTMARES whenever I miss a dose… so I am having them every night now. Waking up multiple times a night and feel like a zombie all day long. I cannot wait for payday… ready for this to all be stopped!

  • Sara June 3, 2016, 4:43 am

    I am on Topamax 200mg twice a day for a lot of years now and I really need to get myself off this medication. I have since developed kidney stones, had my gallbladder removed, and now my parathyroid may be affected at this point. All thanks to Topamax. I’m fearful of the rebound headaches though. I’m not sure what else is going to help those, and the wean sounds scary in and of itself. Help???

  • Jolene June 6, 2016, 10:17 pm

    I was on 100mg of topamax twice daily. I cut myself back to once a day about a year ago. I didn’t experience any withdrawal symptoms at that time. But now I am quitting it all together. My neurologist only put me on it because I have issues with dizziness. But it is not vertigo. She says I have vestibular ocular syndrome.

    I’ve had it for 4 years and I do not feel that the topamax helps at all. I still have issues with the dizziness and once I started taking the medicine I also began having more headaches. So, I feel it is time to quit taking it. If it doesn’t help, why take it? Anyway, I am down to 50mg. every other day. I just started that. And today is when the withdrawal symptoms are hitting me. I feel very fatigued.

    I slept very well last night, but I still just want to sleep today. I haven’t given in to taking a nap. I’ve forced myself to stay awake and do things today and I have experienced peaks and valleys with feeling fatigued. But I guess with all the withdrawal symptoms that are listed, if this is it, then I will be happy.

  • Mari June 13, 2016, 1:00 am

    Hi, I’ve been on Topamax for three years at 100 mg a day. And just recently decreased to 50 mg because it lowered my sex drive, unfortunately for my husband. And now I’m having trouble now with constant indigestion and heart burn. Don’t know if I should hang in there or get back on regular dosage. This is horrible either way. :(

  • Nancy-Lee June 23, 2016, 8:36 pm

    I have been on topamax for 10 years. I was up to 800 mg a day. It helped me lose 100 lbs. I have been weaning myself off over the past year. I have 100 mg to go. I am exercising, eating well and working hard to lose weight. I put a fitbit on in March. I went from days of no activity to currently walking about 20,000 steps a day. 10 miles.

    I have only lost 10 pounds. I am incredibly frustrated. The only sense I can make of this is coming off of topamax. I imagine I would probably be gaining a lot of weight if I weren’t eating correctly and getting a lot of exercise. Insomnia is a chronic condition. I hope this works itself out. I am extremely sorry I ever got involved with this drug.

  • Angelina Chancey June 27, 2016, 3:15 am

    Is there anyone that has regained their memory after coming off topamax?

    • Ophelia June 30, 2016, 12:59 am

      I would really like to know this about memory as well. I’ve been taking Topamax for about 13 years for migraines and yes, I’ve had word-finding problems, and yes, it made me dizzy and shaky at times, my eidetic memory is gone (and probably other things but it’s been so long I can’t remember), but none of those things mattered at the time because it allowed me to keep my career.

      I was getting migraines 4 or 5 times a week and I had a mortgage to pay, so when Topamax reduced the frequency and severity of my migraines, I was so very thankful. The benefits definitely outweighed the costs at the time. They still don’t happen as frequently and they don’t ruin my whole day like they used to.

      I recently decided to go back to school however, and find that my memory is worse than I thought it had become. I’ve begun to taper off, but I don’t really want to stop taking it altogether if my memory isn’t going to return.

  • Mary July 4, 2016, 2:05 am

    I was on 150 mg and experienced depersonalization for over 3 months… Coming back to me has been so hard it’s affected my relationship. Now I’m down to 75 mg after slow tapering off. But every pill I come down from brings new side effects. First it was migraines (which was why I was on it even tho yes I have seizures) and rebound headaches.

    Now it’s muscle cramping sooo bad. I have a syndrome called complex regional pain syndrome all ready so adding muscle cramping all over my body but especially my left arm affected with the syndrome mentioned above is torture. Plus I’m so exhausted. I’m expected down another pill in two weeks. It’ll be two week downing of the Med till off permanently NEVER TO USE AGAIN!!

    It’s the hell drug for me. I don’t remember the full 3 months that I wasn’t really myself.

  • Ms Sparkle July 13, 2016, 12:51 am

    My plan now requires a prior authorization for me to receive topiramate 100 mg. What was a normal 5 day process of receiving my medication, turned into a 3 week process which left me almost 14 days without my medication. I began to suffer from daily migraines, which I expected. I have fibromyalgia and what I did not expect was the nausea, dizziness, brain fog and severe joint pain and cramping.

    Contacting the Dr was of no use. They could not verify my issue was due to withdrawals. There needs additional information regarding the side effects and withdrawals. I am miserable waiting for medication and fear not taking it again or not taking it again. The symptoms are seriously uncomfortable and dangerous since 80% of the time I have no help.

    During this time its painful to care for myself. Please help bring awareness to these kind of issues. If you think there is something wrong, it usually is. Keep a medication/medical journal to keep track of symptoms. This may help for clinical research and for your treatment and recovery.

  • HELEN July 16, 2016, 11:39 am

    I was on topiramate end of 2015 for chronic migraines, have also taken gabapentin and am now on venlafaxine and naproxen. I came off topiramate due to the side effects but 6 months on and I am still having short term memory problems and struggling to finish sentences. It is difficult to explain to people who have not experienced it… you begin a sentence and then lots of random thoughts come rushing into your head at once and you can’t identify which word you want to use and by then the person you are speaking to has become tired of waiting and gives up.

    I am now also having botox for the migraines which does seem to help. Have had the “dementia” tests and scored highly to suggest there is nothing wrong. However when asked to name as many words as you can think of within a minute starting with a certain letter I struggle. Everyday words become slippery which effect every day communication and I too also forget if I have already told someone something and end up telling them again 5 minutes later. Has anyone else experienced this?

  • Nad July 19, 2016, 1:42 am

    I have been on Topamax for easily 10 years for migraines. I was extremely scared to get off of it, however I felt that it was definitely time due to side effects. I took 150mg down to 50mg over the years time. I thought that being on a lower dosage would make it easier to titrate off. I then went to 25mg for 6 day’s and was pretty good. After 2 nights off totally I saw scary spider’s in my head.

    I went back on 25mg and am still on it at least until tomorrow. I am hoping that I can continue getting off, because this is extremely difficult. I am very tired, and I feel as if I am not myself at all. As for exercising, I do not even feel like it. I am seriously considering getting back on it because my Dr wants me to stay on something for my migraines. I am seriously scared to start anything else after this.

    • B July 24, 2016, 5:18 pm

      50 mg to 25 is 50% of what your brain is used to. Ten years is a long time. Maybe you can take 25 + 1/2 tab of 25 for a month or two or so. Then the 25 mg. Then 25 one night half tab next for some time. Finally the 12.5 half tab, then 12.5 every other night, then every third etc.

      You completed a long, successful taper, so you will know what you need as you go. Taking your brain 100% off should go very carefully too. You’re nearly there just up against that 100%. This worked for a relative and I’m trying it too. He’s been off and using sumatriptan for 5 years.

  • Cris July 24, 2016, 3:08 pm

    I have been on Topamax I think 5 years. Same issue with the brain fog, so I don’t actually remember when I began. I didn’t realize that when I started the medication it made me absolutely crazy. Moody, anxious, defensive, rude. It ruined relationships. My father, in fact, still thinks I’m crazy from that episode of 4-6 months.

    Anyways, only writing to add another symptom, I began to smell sewage! Yes, sewage! At the same time in the evening for some reason. I drove my property manager nuts because I thought it must be the pipes. I realized once I moved, everywhere I am smells like sewage at midnight. It was only after stopping Topamax once, I realized the connection.

    Well, I’m stopping it again, as I went back on it out of migrainic desperation, and the withdrawals are the worst yet! My shoulder and neck are so spasmodic, I worried I may be having some other event like a stroke. Well, I have chronic back pain and some meds, so I took a short acting 2mg Dilaudid to help. I never ever take them. It has helped for the moment.

    Definitely won’t make a habit of it. Lovely group. So nice to find camaraderie in this dark corner. I will also add, I have tried the bulletproof diet, which I think because of its concepts of high fat and intermittent fasting, has really helped me a lot with pain and inflammation in general. I also have started Pilates over the past 3 years.

    Life changing. Keep the faith guys!! Find your good routine and love life. Withdrawal is very temporary.

  • Nad July 30, 2016, 8:03 pm

    I had been on 50mgs of topiramate for roughly 10 years. I wanted to go off of it due to many side effects that I could not ignore any longer. I went to 1 pill for 2-3 weeks, then 1 pill every other day for 5 days. I am having trouble with withdrawal symptoms. They include: anxiety, nausea, tremors while asleep, when I can sleep, fatigue and insomnia, feeling panicked, and can’t remember words or what I am supposed to do next. I kind of feel like I did when I first got on it. Did I get off too fast and not titrate long enough? I wonder.

  • Paula August 10, 2016, 10:48 pm

    Been off Topamax for almost two weeks. Tapered from 100mg daily dose over a period of three weeks. Having intermittent tinnitus, dizziness, headaches every two to three days. Also have had upper respiratory issues such as cough, wheezing, stuffy nose which is why I decided to stop this drug after being on it for 10+ years. I am determined not to go back on it, but the withdrawal is not fun. Thanks for this website and all the comments. Helps to understand and know I am not alone!!

  • Linda August 11, 2016, 4:54 pm

    I have been on 100mg of Topiramate for almost 2 years. I’ve been experiencing extreme fatigue, double & blurry vision, droopy eyelid, brain fog, couldn’t recall words, memory loss, depression, muscle weakness & an overall loss of myself. Because of all of these symptoms my neuro opthalmologist thought I had a rare neuromuscular disease called Myasthenia Gravis but once I was tested for this disease the results came back negative. Yet I had all these symptoms! So off to Mayo Clinic we go. Fortunately my son was able to go with me & he is a Pharmacist.

    All along he suspected it was the Topiramate causing the problem but I could get no one to listen to me. When we got to Mayo Clinic & told our story the first thing she said was we call that “dopamax”. “Why is she still on it?” They went ahead & ran tests to be sure it was not Myasthenia Gravis, which it wasn’t. What we found out was my body cannot metabolize this med through the liver as it should & I have 2 other meds going through the same pathway, therefore, it was building up in my body & causing toxic levels of the drug!

    We have started titrating me down by 25mg for 2 weeks & the only thing I’ve noticed is the sweating, hot flashes & fatigue. Last night we cut it back another 25mg & I’m noticing deep muscle ache but so far this is tolerable compared to what I dealt with on the med! Three days into the titration brain fog lifted, my droopy eye lid went away & I am starting to feel like myself again!! I appreciate all the stories here & I hope this helps someone! Good luck & good health!

  • Candi August 30, 2016, 3:38 am

    After dealing with losing hair and gaining weight, 30lbs, since I was first put on topamax for migraine, doctor decided I needed to get off it, after being on it for a year. He cut dosage from 100mg. Down to 50mg. Took that 50mgs for a few days, started on a Friday. I had no idea I would have withdrawals from it, started having skipped heart beat by Monday, angry outburst, and agitation.

    Not even a week of that stuff and by Thursday’s I was flown to hospital, and almost died because I got soooo depressed and angry that I overdosed. Bad bad bad medication! Now I’m extremely hesitant not only taking any meds over the counter or prescribed by I lack a lot faith/trust in Drs.

  • Jo September 12, 2016, 7:29 pm

    I wasn’t on the medication even for a full year but my doctor switched me to something with an L and he said to stop taking the Topamax and just start the other medication in it’s place. But the other medication gave me a rash and he said if that happened, stop taking that immediately. So now I’m off the Topamax and I have a foggy type of headache and my stomach is sour.

    And I was in a horrible mood all day. I’m hoping my symptoms don’t last or get worse because I have to work so early in the morning and I’m the only one that can go in at that time. I’m really starting to regret any of these medications.

  • Jo long September 15, 2016, 9:51 am

    Did anybody else experience a rash??

  • Dee September 16, 2016, 12:25 am

    This is the best article I’ve ever seen on this medication. Reading the experiences of others brings me to tears. Almost all of them ring true. I am planning on starting my withdrawal very soon. I have been taking this medication for 6 years now. When I first started, my neurologist put me on 100mg, the first month I lost my words, it was such a paralyzing and traumatic moment.

    It was very quickly reduced to 75mg which still had a huge effect on me, I don’t know if it’s because I am sensitive to drugs or this medication is far too aggressive. My condition, episodes, ‘aura’ were so bad and started happening so often I couldn’t function at work or drive, that I had to start taking medication. It stopped my episodes which used to be 2 a week before medication, to about once every couple of month the first two years and now maybe once every six months.

    I can’t do basic math anymore or remember basic things and don’t retain information! my IQ is down, I find myself in a fog very often and depression hits very hard. Even my personality and dreams changed. I am very short tempered now and have horrible anxiety. That list of withdrawal symptoms are mostly all side effects I have from the Topamax.

    I have been asking my neurologist (the head of the department) to get me off the medication for 2 years now. I have even seen his fellow M.D.’s and they disagree because they don’t believe the symptoms outweigh the necessity of the drug. I, and I am sure ever other commenter who has gone through this knows what it is like to have a change in personality or not be able to function at basic things.

    I hope my body has adjusted enough that it will no longer have these episodes and I can avoid them and avoid panic attacks and strong lights that won’t blur my vision and induce the episodes. Thankfully we don’t have epilepsy otherwise this would be a different conversation. I plan on slowly tapering off, if that is reducing 25mg every two weeks or maybe going slower every 3-4 weeks because I have been on it for so long then that is what I will do.

    I will just have to see how I feel with time but, I don’t want this in my system by the end of the year. It has affected my life for far too long.

  • Donna September 29, 2016, 5:05 pm

    I have been on 300 mg Topamax for several months. I’m a GI patient and all my GI problems returned right after they had used my dose to 150 mg in am 150 mg pm. My acid reflux, stomach cramps and nausea were unbearable. Yesterday I had a colonoscopy and EGD and my GI DR said he believes it’s the Topamax. So today I am quitting it completely cold turkey. Everyone please wish me good luck and I will follow up with my progress.

    • Bianca S. October 16, 2016, 3:50 am

      Don’t quit cold turkey!! I got off 100mg too quick and I feel terrible. The nausea, headaches, depression, insomnia with the craziest dreams, and fatigue are the worst! I wouldn’t wish this on anyone.

  • Cynthia October 11, 2016, 5:23 pm

    I was on 50 mg for almost 5 months for migraines. It did help my migraines but my anxiety was awful! My Dr. said because I was only on 50 mg that I could quit cold turkey but it was up to me if I wanted to taper. I decided to taper in 2 weeks but after 1 day at 25 mg, I decided I just wanted to quit. I quit cold turkey.

    The first day, I felt a little brain fog, nausea and strange headaches. By the second day, I felt fantastic – like I just walked out of a foggy room after 4 months. Now I’m on day 5 without the meds and feel better every day. If you’re not happy on this medication, talk to your Dr about stopping. I wish I stopped a couple months ago because I feel like I lost 4 months of my life.

  • Annemarie October 13, 2016, 10:50 am

    I had to stop taking Topamax due my change in health insurance. I tried to wean off but I didn’t follow proper tapering and I had rebound migraine that lasted for a week, I still can’t sleep and my legs hurt. I am so happy I found this website with the withdrawal symptoms because I feel awful and I didn’t know what was going on. Looks like I will restart Topamax to feel normal again.

  • Natalie October 15, 2016, 12:35 am

    I only been on Topamax for a 2-3 months. During my 4th week I noticed some horrible itching. Feeling like I had bugs crawling all over my body. Severe itching on my head. I just tapered off and took my last dose 3 days ago and I’m still itchy like mad hell!!! Anyone else experience itching?

    • Bianca S. October 16, 2016, 3:46 am

      I’ve had the feeling of bugs crawling on me too!! And it is super itchy at the same time!! Now that I’m off I don’t feel the bugs anymore. But the withdrawal symptoms are horrible…

  • Bianca S. October 16, 2016, 3:43 am

    Wow this is scary! I’m having a lot of the symptoms that are listed. The depression is bad and I’m on 300 mg of Wellbutrin extended release. I thought that my depression was due needing to go up on my antidepressant but after seeing this it’s helpful. I’ve also have really bad insomnia with the most vivid and crazy dreams that wake me up at night with anxiety feeling or feeling super confused.

    I’ve also had the constant headaches nearly every day since I got off. I’ve had nausea to the point of throwing up 3 times in one day. I’ve gotten the dehydration symptoms too which really suck! I’ve also had memory loss, dizziness, fatigue. I was on it for 4/5 months at 100 mg once a day.

    My doctor tapered me off this medication very quick too. My doctor told me to go down to 50mg for one week then stop. Now I feel like crap and it’s only been 11 days. How long is it going to take for me to feel like a normal person? I’m worried!!

  • Leah October 18, 2016, 12:31 am

    I was on 300mg for almost 10 years and am now tapering off. The withdrawal symptoms have worsened as the dosage has been lower. I have tapered 25mg every 2 weeks. My symptoms have been severe anxiety, crying and irritability. I am wondering how long after I withdrawal will I return to myself? This is really impacting my daily life.

  • Lori October 18, 2016, 12:24 pm

    Thank you all for your stories! My nightmare started when Cigna–not my doctor–decided that I needed to try a different migraine preventive again, not due to demonstrable health outcomes, but due to them not wanting to pay for Botox. I told my neurologist that I’d had mood and vision problems with Topamax previously, but he said that my vision issues “were not a known side effect” (translate: must be you) and they’d changed the formula to a timed release.

    I had taken and withdrawn from Topamax before without difficulty so I thought, okay, try it again, It can’t hurt. Seven days at 100 mgs. was all right, though the blurred vision and after-images when I close my eyes looked like a real side effect to me. Then we upped it to a 200 mg. capsule. I have been on that dose for two weeks.

    My stomach became a constant, churning, burning, nauseated disaster. I have been a puddle of uselessness at home and barely functional at work with the brain fog and constant G-I issues and weird eye things. With the timed release, it goes on all day long.

    I asked the pharmacist if I could taper down the dosage myself, by pouring the little balls out of the capsule, but evidently they aren’t distributed randomly inside there the way I think they are. So no. I skipped a night, took one, skipped a night. I am going to call the doctor this morning as soon as they open and get a real taper-down schedule.

    I am so angry with myself for letting a business interest dictate how I feel, what I put into my body, and how I act around my family. There was no reason for me to take this disastrous pill when the Botox was already helping me in combination with abortives.

  • Rachel October 31, 2016, 4:24 pm

    I was not on Topamax long at all. I was prescribed it for migraines, and told to wean up to 100mg. I had to go up 25mg daily, weekly. I was in my 75mg week and got nearly 100% of all the serious side effects that warn you to call a doctor right away. I didn’t realize this for nearly a week. Finally after 5 days, I called my neurologist. He told me to stop cold turkey because I wasn’t on it long and not on it for seizures so he didn’t think I’d get withdrawal symptoms.

    WRONG. Not only do I have a ton of kidney stones from the medicine, but I’ve had tremors, palpitations, mixture of insane sweating and intense dryness, dizziness, nausea, and neat vomiting for almost a week. The side effects while in my 3rd week of weaning were worse but this is awful. With my immune system being compromised from all this, now I’m really sick and am at the doctor to see what can be done.

  • Zoe November 3, 2016, 9:38 pm

    I have been using Topamax (topiramate) for 9 years 150 mg daily (75 & 75) following a craniotomy. I recently changed doctors (PCP) & needed refills. The new doc decided he wasn’t going to refill my topiramate & my B12. No reason for the B12 but he considered my topiramate a “speciality” drug. No shucks, Sherlock, but as an internist wouldn’t you consider perhaps titration first?

    At our initial ( and only visit so far) we reviewed my medication list. The only meds he didn’t want to refill were my triplicates. Not a problem; I have another doc (specialist) been with for years who will not let me go into withdrawals. The new doc knew I started Neurontin & Topomax @ same time. Whatever happened to the Hippocratic oath?

    The new doc had referred me to a neurologist for “chronic headaches”. That’s not in my history nor did I make this complaint. Was he guessing? Pretty scary situation. Topiramate is a useful medication; used for many things. Perhaps it’s the doctors not knowing how to Rx or titrate that are the worst scenario.

  • Kristie November 16, 2016, 7:09 am

    I’ve been on Topamax 100mg at night for several years. It helped my migraines/headaches… however I too have had increase problem in word finding and memory. I can not remember names of people or my own address for several minutes until I can finally grab them and say them. My MD has dropped me to 50mg at night x1 wk then supposed to stop.

    I have a horrible appetite right now with this transition off… and I have some 25mg tabs in the home and am going to take those for a week prior to stopping, but it sounds like that is still really fast. I have had 3 migraines already in the first week too. :( I am glad I am not alone though with the cognitive changes… being 44 and not being able to remember things is really scary and just not right.

  • Diane DeLorenzo November 18, 2016, 4:45 pm

    I have been on Topamax 75mg for migraines for a couple of years now and remember how hard it was to adjust to the side effects which took about two months. I lost about 20 pounds, have poor concentration and cognitive issues but did cut my headaches in half. Now I have to come off because I have kidney stones on both sides; not necessarily because of the Topamax (had them in the past) but it can make them worse and now I am worried about the withdrawal symptoms.

    My Dr. has me tapering 50 mg for three weeks, 50 mg for 2 weeks then 25 for 3 then 25 mg for 2 then stop. I am grateful for this website and find comfort in sharing this experience with others. Thank you and will keep you posted.

  • Tonya November 29, 2016, 4:07 pm

    This was very helpful information and I’ve been taking Topamax for several years now. I had been suffering from migraines for almost 20 years and although they increased my dosage to 100mg daily I was still having more migraines than I should have. Most times when I took it my head would burn as if I had sores on my brain and I wanted to stop taking it.

    I had a car accident on 28 July 2016, got a concussion and could not keep up with my dosage. By 30 July I had completely stopped taking Topamax. At first all I did was sleep, didn’t want to eat or do anything but things got better. Unfortunately, three months later and I am still lethargic, it’s very hard for me to get motivated and I have gained 15 pounds!!

    It’s not that I eat more but I’m gaining weight almost every day even when I can get it together and exercise. I do not want depression to set in and I know that I need to see my doctor but I don’t want to be handed more pills. I still get headaches but they are nothing like the severe migraines I had while on Topamax.

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