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.
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.
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…
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.
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!
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.
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.
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?
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!!
I just wish I could HUG EACH AND EVERY ONE OF YOU. BE STRONG!
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.
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.
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.
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.
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.
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.
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.
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!
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.
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.
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!
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.
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?
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.
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.
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.
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.
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!
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!
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?
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?
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.
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!
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!
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.
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!
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?
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!
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!
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!
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!
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!!
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
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.
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!
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.
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
Julie, how are you doing with stopping Topamax? Please do keep us posted.
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!
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.
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.
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?
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
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…
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.
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.
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.
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.
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).
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!
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.