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 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.
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.
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.
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.
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!!
I’ve been off since January and am still recovering. The anxiety and depression are getting better. They’ll go away eventually. How are you doing now?
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?
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…
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.
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.
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.
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.
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.
Did anybody else experience a rash??
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.
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.
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!
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!!
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.
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.
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.
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.
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?
Helen, thank you for your comments. My husband is experiencing these same symptoms. He was on Topamax 100mg for 2 months and is now on a taper down of 50mg for a week and then 50mg every other day for a week and then off. The withdrawal symptoms are the same as when he was at 100mg.
Hoping everything goes away once it’s out of his symptom. He’s taking Omega 3 one tab daily, Vit B1 (Thiamine) one tab daily and Vit D3 2000 I.u daily. These and a healthy diet and exercise seem to be helping. Time will tell. Sending you good wishes for a speedy complete recovery!
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.
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.
Is there anyone that has regained their memory after coming off topamax?
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.
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.
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. :(
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.
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???
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!
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.
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!!!
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.
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!
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!
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.
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. :)
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.
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!
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.
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.
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.
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.
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?
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.
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!
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.
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…
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.
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.
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.
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.
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.
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!!!