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 given this medicine for weight loss. Mind you I only have 30lbs to lose and in comparison to many people I feel like I should have opted out of taking this. Nonetheless, I took it. I started out taking 50 mg at night. The next day, I was not feeling myself. I had no patience. Little things were pushing me to a breaking point, and I felt very nervous inside – almost like I wanted to just jump out of my skin!
So I did not take it again. Again that is until 2 weeks later when I thought, I wonder if that was just a fluke thing. So as if I am asking for trouble or I just really envision finally looking good in a bathing suit. I took 50 mil again this morning. (This is half of the pill. The whole thing was 100 mg.) I can finally make a very strong decision that topamax was what was making me feel the way I did 2 weeks ago, because I feel the same this evening. I feel so bad for my family, as I am not being a good and patient mother and wife.
I can’t wait for this to get out of my system. I know I just need to diet and exercise and not try the easy way out. I know. It’s not worth it. How I am as a mom and a wife are far more important. I would never recommend this to anyone for the purpose of losing weight. I’m going to bed hopefully it will be out of my system by tomorrow. It was 50 mg. For just a day and I took it this morning. I just hope.
I hear you. Same here.
I know I am repeating what everyone else has said, but THANK YOU! I was ready to go to the ER because I have been having dizzy spells for the past 4 days. I tapered Topamax down from 100 mg to 25 mg, and finally discontinued it the end of January. The vertigo started 2 and 1/2 weeks after stopping, and it seems as if it’s getting worse as the days go by. Hopefully, it won’t last long!
I’ve been on Topomax for probably 12+ years – 50 mg for migraines. I tried coming off years ago and had trouble and went back on. I now realize that it was rebound headaches from drug withdrawal. I am tired of losing my words. Had the MRI just to make myself feel better that it wasn’t early onset Alzheimer’s. I recently went up to 150 mg a day after a bad summer of headaches.
Thinking back now they were probably caused by caffeine withdrawal.. I guess I should go off one “drug” at a time. Ha ha! I’ve dropped to 50 mg a day for one week and then went cold turkey. Was wondering about these headaches I’ve had since stopping and started looking up “rebound headaches after coming off of Topomax.” Thank you all! Just popped 50 mg and will see if that works. Have been feeling absolutely empty…gee is that hunger? And queasy. Avoid glare, stay inside during weather changes and kick the topamax! Here is to hoping.
Thanks so much for this article. I thought I was the only one. I’ve been on Topamax since 2006- 200mg per day for a mood stabilizer. I started coming off this drug in September of 2014. 200-100-50…then when I hit 25 I started having those panic attacks. I backed up to 50. Have been in a holding pattern since then. I just recently went back down to 25 hoping this time I can finally get off this med. my reason? Frequent UTI’s and blood tests reveal high creatinine levels. Did topamax cause this? We will see.
I am so very grateful for finding this site. My post relates to the use of Topamax use for alcohol dependence and withdrawal. I began taking Topamax in addition to Acamprosate for alcohol dependence 5 months ago. I maintained a dose of Topamax at 300 mg daily for 4 months. After experiencing extreme bouts of depression, suicidal thoughts, racing thoughts, insomnia, etc.
I made the decision to discontinue both Acamprosate and Topamax as I have maintained over 6 months of sobriety. The withdrawal from Acamprosate (Campral) lasted nothing longer than 36 hours. My first ‘taper’ from Topamax was on Tuesday was 50mg. It has been a terrible reminder of what a human body feels like when it is chemically dependent. I am very fortunate that I do not seek to fill this craving with alcohol, but I am painfully aware that this burning desire is only satiated when the next dose of Topamax kicks in.
I have decided to forego medical advice for the moment and taper down at a very quick pace. 300-250-150-50-??? My goal is to be at 0 by Monday. I understand the risk of seizures in the near future but I feel that the risk of my body craving a drug over a tapering period of 6 weeks is a greater risk to my sobriety which is my long term future. Since I did not see any posts on here commenting on addiction medication use of Topamax and withdrawal I thought it would be relevant to share.
Hey man Janna your not alone. I to have been on Topamax 400 mg for years for substance abuse/seizure disorder. I have been sober for over 3 years and I have to think that Topamax has something to do with cravings. I was out of control and outside of a power greater than myself topamax has been the only other thing I can give credit to.
Fast forward to today, I have terrible problems finding the right words to say and have gone from a clever man to a dumbed up version of my old self. I have this sinking feeling that my real personality is somewhere in the distant past becoming more and more difficult to recapture each dose of topamax I take. So I am torn.
It has helped perhaps but I think God saved me from the depths of alcoholism in the end. Now I am finding myself dependent again. Chasing my tail if you will.
I was put on topomax when I was 17 as a mood stabilizer at 400mg/daily. It has been 12 years and over the last two years I have noticed a considerable brain fog, poor memory and concentration. I also have begun to wonder why they put me on such a high dose when I was still quite young. This past weekend I ran out, and after two days felt great, much clearer, remembering things quickly and generally more comfortable in my own body.
Now at day six I am starting to feel shaky and a bit anxious. Not terrible but definitely noticeable. After reading this I am now really wondering how long these symptoms will last! I knew cold turkey was not advised, but I feel so much better off it that I don’t care too much. Knowing what to expect is very helpful though, so now I am just hoping I can deal with these side effects and that they dont last long. Fingers crossed!!
I have been on topamax for years, and within the last year went up to 400 mg. I love topamax. It had several initial dose effects when I started it but after a few weeks, it was so helpful in preventing migraines that it was worth it. Given that it makes soda taste horrible, I was able to quit that addiction as well.
About 3 months ago, I went to an all plant based diet, which has changed my life unbelievably so. I quit cold turkey because of how great I feel on this diet. I knew it was stupid but did it anyway. I have had the cold sweats the first few days along with a jittery feeling, and major insomnia as it always helped me sleep.
Dizziness on and off, some brain fog, irritability, but worst of all is the joint and muscle aches. However, in reading others” reports, I am not having near the severity in my symptoms. Mine are annoying, uncomfortable, and night is hard with the insomnia and aches. I have been taking ibuprofen and a Xanax at night to help with pain and relaxing/sleep.
It’s been 8 days now and every day is different but most symptoms are decreasing in intensity and duration, but not gone. I am going to do something natural with the joint/muscle pain if I can get to an apothecary and ask for something. No major headaches yet.
How are you doing? You were on a high dose for a long time. Did you find help in the naturopathic medicine?
Have been taking Topamax 200mg years for migraines. The migraines really haven’t been successfully abated, but I began to have severe aphasia. My neurologist suggested changing my dose to 100 mg at night. That made insomnia worse plus the aphasia was still there. Have tried all the major migraine therapies with no relief. Now the neurologist decided the aphasia was caused by the Topamax and to taper off by 25 mg each week. The side effects have pretty much been what everyone here is experiencing. I will stick with it until next appointment. Have been off completely for 2 weeks and only had 3 migraine free days. Shoot me now!! Good luck and Happy New year to us all.
This website may have saved me from checking into a mental hospital or ER. I have been taking 100mg once daily for probably 3-4 years along w/ Effexor for “Bipolar Depression”. I take too many meds in my opinion and asked my primary if I could get off Topamax. It had the adverse reaction for myself than most. I actually gained weight. I’m so appreciative of all the comments here because I have had kidney stones and worsening vision since I started this med.
My doc told me to take every other day for 7-10 days to taper off. I did that and was off for about a week and a half with no real effects. Well just 3 days ago I felt different. Not better, not worse just different. Almost felt like coming back to life a little. Yesterday felt more anxious. Still thought maybe energy just coming back. At the same time had racing thoughts so voiced my concern to my wife.
Today went to work and again racing type thoughts, brain going off in “tangents”. I vowed to my wife I’d take it as a positive but by the time 5pm rolled around I thought for sure I was losing my mind. After reading all these generous posts from all of you I popped a Topamax and will taper much, much slower. Good luck to all. Maybe 2015 will be our year !!! :)
The comments expressed by everyone are so confirming! Went on Topamax for migraines and thought it was a lifesaver. But after 6 years it was time to taper off. No increase in migraines, and side effects are wearing off but withdrawal symptoms mirror others. Sweats, leg & joint pains. Irritability. Will see how long it takes to work through it. 2 weeks so far.
6 years, I’m at 8. What was your dose and how fast are you tapering? Most importantly, how are you doing?
Thank you everyone for your comments. I had been on Topamax, high dose for 10 plus yrs. as a migraine preventative. About a year ago, or more, started tapering down and got to 2/25 twice a day. Could not get any lower. The resulting headache was horrible. I don’t think it was a migraine. Reminded me of hangover headaches (that led to migraine) of my younger days. I also feel weak and shaky- like there is no ability to ‘fight it off’. So sick I almost can’t talk. And then the nausea. By then I can’t stand it any more and take some Topamax. A short sleep later, I feel better.
Last night, I ‘forgot’ to take the 50 mg of Topamax. I woke up in the hell described above. Desperate I take 50 mg of Topamax, and try to sleep. Two hours later, I still feel the same way and wonder if maybe it’s the flu as well as the withdrawal. I take my regular daily dose of 50 mg. 1 hour later I feel better. I don’t know how long it would take me to get off this Topamax roller coaster. It was a God send for migraine in the beginning, and now a nightmare.
Thanks for your comments. Do you have a sumatriptan to try for this migraine? They can be taken together. There are some new ones. I too have found 50 mg to maybe be my minimum, and have taken it from 200 down to 50 mg for 8 years.
Between migraines and nerve pain from cervical and lumbar disk degeneration, that is just what works. However, I still want my brain back. Am trying to step down 12.5 mg every other night for 3 months then every for 3. Then so on. Have my fingers crossed. Meanwhile, I take Relpax for the break through migraines. It’s what I took before Topamax.
I have been on Topamax nearly 5 years now. I am finished. I can’t do it anymore. It’s not working anymore, my migraines never fully go away, my memory is just so terrible that I feel like an 80 year old with Dementia. I’ve decided to treat myself naturally. I’m over doctors that don’t care and don’t know what they’re doing. Trust me, they don’t, I’m in nursing, this is the worst medication I’ve ever been on.
Jennifer, I know it’s been more than a year since you wrote this but I’d be interested in knowing number one how you went off of Topamax and number two what you chose as a natural alternative. I have also been taking it for 5 years at 200mg at bedtime for migraines. It hasn’t helped at all. I asked two years ago to stop but the dr didn’t feel it was the right time.
This time I didn’t ask. I started taking the evening dose on Mon., Wed., Fri. And Sun. then after two weeks discontinued Sun. I’m ready to just drop it all at this point. It seems like I have severe muscle pain, migraines and irritability when I take the next dose. I have been trying to find natural alternatives for anything necessary for sometime now. Thanks for your input.
Renee, I have been on Topamax for 9 years and am now tapering down and probably off. I have epilepsy, but was actually put on Topamax due to severe migraines. At first it really helped the migraines, I believe I have had only 2 grand mal seizures during the last 7 years and I also lost 20 lbs in the first year.
However, my memory got very bad. Now I have gained the 20 lbs and another 40, am depressed, my memory is very very bad, I have terrible mood swings, I have ringing in the ears and continued problems with blurred vision. My neurologist is not longer available. I know it is the Topamax. I take 200 mg at bedtime. About a week ago I reduced it to 150 mg.
I have had anxiety and migraines but not too bad. I am going to reduce it by 25mg every 2 weeks. After reading the terrible withdrawal effects, I want to be careful I don’t have a seizure or start a cluster migraine. There are too many side affects to be on this medicine for long term. Good Luck.
I was on 150mg of Topamax for 5 years. I began tapering March 2014. It has been a journey, to say the least. It got worse as I continued to reduce my dose- I remember experiencing severe symptoms at taper 100-75, and from then on. I experienced mood swings, dizziness, nausea (!!!), muscle cramps, difficulty staying asleep, night sweats, sensitivity to light, anxiety..I’m sure I could think of more. I have gained 5 pounds (solid) since stopping the medication. The ONLY thing that helped was .25mg dose of alprazolam and 4mg dose of Zofran. I was much much better after that… I wouldn’t have been able to get off the medication without them. Good luck! It’s absolutely worth it! Hang in there.
Finished my taper around Thanksgiving and have felt fine until last week and the migraines are back. Have had a migraine every other day this week. I do not want to reinstate Topamax so will try awhile longer in hopes the migraines regress. Please keep posting… it’s so helpful to read how everyone is progressing.
Thanks for letting us know you’re doing well besides having migraines again. Can you tell us what your dose was and how long you took to taper off and feel yourself again?
I have been on Topamax for 2 years now at 100mg as a mood stabilizer and have never had any issues while on it, but a few weeks ago my doctor and I decided its time to come off some of my medicines (I already take medicine for depression and very bad anxiety). I’ve been on 50mg for 5 days now of the Topamax and already feeling the withdrawal symptoms. I actually don’t have an appetite because my anxiety has increased so much that when I eat I feel like I’m going to be sick, I have constant nausea and its really starting to bother me.
I’ve had withdrawals from other medications before, and I definitely do not want to experience this again. I actually tried calling the dr. to see if these symptoms were normal but still can’t get a call back from her, so I decided to just start taking the normal 100mg again that I was originally on because I fear the withdrawals, and especially reading peoples stories about withdrawal symptoms lasting for months even after coming off the medicine… I really hope the medicine gets quickly back into my system and the current withdrawals subside asap!
I’ve been on Topamax for 7 years for migraine-related vertigo and am currently tapering off — down 25mg every two weeks, as recommended by my neurologist. I may be the only person alive who initially lost weight, but they gained a lot of weight with this drug. I’m at 50mg now, and I do have to say that that hot flashes have started, and my appetite is back.
It’s like I forgot what hungry actually felt like, which worries me, because I’m already overweight and want to lose, not gain. That said, I wanted to go off this med because I suspect it causes inflammation in the body. My legs and joints have been swollen up for years and I’m dying to reset my system. I had no idea that the drug stayed in the body for this long…great info!
I’ve been on 50 mg of Topamax on and off since 2009. The medication curved my migraines, but side effects were terrible. I didn’t mind losing some weight, but my eye sight capacity suffered the most, I now have to wear glasses all the time. Had heavy periods for a few months until they come to an abrupt stop, making me an early menopausal female.
Then I switched to Propranolol, it was good for a while, tremors where gone, but I was gaining weight and felt too tired all the time, since it is a beta blocker. So I went back to Propranolol a few weeks ago. This time I can feel the withdrawal effects, unlike the first time I stopped taking it. Night sweats are a pain, sometimes I have to change my pajamas three times during the night.
My doctor says it is a withdrawal symptom that may last from weeks to months. Eventually everything will go back to normal, but the in between time, is slow and bothersome. I feel nauseated everyday, don’t have much appetite though I’ve gained a few pounds back, tremors are gone, but the mind fog has increased. Scared to mention it at home, as they will label my struggle as a result of taking a drug for “crazy” people.
I have been on Topamax for 4 years. I was up to 250mg for prevention of migraines. I’m on a few other meds for MI too, so my neurologist and psychiatrist decided the topamax wasn’t working. I have been going down 25mg/wk. I had started a new med with no side effects but wanted to blame it BC I feel horrible! I’m nauseous, taking zofran 2x/day, having hot flashes, chills, more migraines, night sweats, extreme fatigue during the day, I mean I’m nodding off and almost crashed my car last week.
My dreams are crazy PTSD anxiety dreams, I keep waking up and don’t know if it’s day or night, I’m so confused!!! I’m physically fighting, waking up not even in bed. Half the time I feel like I’m in another world. I honestly didn’t think you could withdraw from Topamax, now I think I’m tapering way too fast. Thanks for the article and everyone’s insight!
I have been on 100 mg topamax for about 2 years for migraines. The med never really worked that well but it did control them somewhat. My neurologist placed me on new meds and wanted me to come off of the topamax knowing it already gave me a dopey feeling. He suggested tapering it down from 100 mg to 50 for a week then going without. Two weeks ago I decided it wouldn’t be so bad to just stop taking it instead of tapering off. (This is the ONLY article about coming off of the med so I was never aware there were intense side effects).
After going cold turkey, a week later I began to notice I was feeling dizzy, disoriented, confused, severe nausea and so on. I thought my God I’m dying! I actually went to the ER where they couldn’t find anything wrong with me (I didn’t think about it could be the cease of this medicine). I have been feeling progressively worse. I am off of the topamax for about 2 weeks now and have gone to my regular doctor knowing something was still wrong with me for him to find nothing again. It frustrated me to no end knowing I felt as if I were ready to die.
I just found this article after thinking back and now realizing my problems are likely the topamax. I feel a bit relieved to know it is likely this medicine but now that I’ve been off of it for 2 weeks I’m thinking of going back to take 50 mgs in hope the effects stop! I read where others have experienced withdrawal effects for a month or longer and I cannot imagine feeling like this 2 weeks more or longer. No idea what to do!? Anyone have ideas/suggestions or been in the same boat?
I have been on topamax 100 milligrams BID for 5 years now. The side effects that I’m experiencing from going cold turkey about a week and a half ago are horrid. The anxiety attacks that I am getting are debilitating to say the least. I am trying a new drug called Propanolol 10mg BID and hopefully that will work but last night i experienced vertigo so bad that I was paralyzed in my bed. This has affected my life in such a negative way and has created so much depression and anxiety because I have no energy.
I have no ability to concentrate, I feel unsafe driving to my job and the fatigue is so unbelievable I feel like I’m going to drop at any second. This has been very very hard. The propanolol has also created a huge amount of vertigo and it’s like I have a double whammy. I will never ever in my life take topamax ever again. It is absolute poison. It never stopped my migraines and I have been in a cloud of fog in my mind for far too long. This article has really helped me to understand I am NOT alone. Thank you to everyone else that has shared because you have helped me as well.
This is day four of coming off Topamax. My Dr. has me reducing from 100mg, to 50mg for 2 weeks, to 25mg for 1 week. I have taken Topamax for 2 years for migraines. Since I have gone 6 months with no major headache my Dr. felt it might be time to come off the drug and see what happens. So far I have had a headache for 2 of the 4 days and a sick stomach. Also, my emotions seem to be on edge. I’ve got another 2 1/2 weeks before I’m completely finished. I hope this feeling doesn’t last much longer. Yuck!
Thanks for the great article. I am sitting here in a foreign country after forgetting to bring my topamax. It wasn’t helping my migraines anyway, and I was about to ask to taper down. I can’t believe I forgot the meds. I was only on them for 3 months this time and had only had time to work up to 200 mg / day to see if it worked in conjunction with botox.
It’s been about 36 hours because of the long flight and my travels – and I have searched and there aren’t many options to get more of the medication, so I am debating just going cold turkey. By the time I get the medication (see a doctor) I am well into the 2-3 day mark and will have wasted 1/3 of an extremely expensive holiday. I actually feel great right now, jet lag AND no topamax. Is this the calm before the storm?
I cant believe this. It makes me want to cry. I took topamax for migraines 150mg per day. I had the worst panic attacks. Anxiety. Hair loss. Pins and needles. Depression. Confusion . Forgetfulness. The day I had my worst panic attack I quit cold turkey. I wasn’t going to put up with all those horrible symptoms again. The worst mistake of all. I assumed you had to taper off them if you had epilepsy.
Four weeks since going cold turkey I feel terrible i haven’t had any bad panic attacks but I’ve suffered everything that is on the withdrawal list. The third week I went to the doc and listed my symptoms and I have now been put on prozac . I didn’t tell her that I hadn’t tapered off the topamax because I was unaware of the withdrawal symptoms. I’m scared I’m not gonna get better because the prozac is making me feel worse. I’m on my 5th day of 10mg. :(
Yes. You will get better! You probably already have! Make sure you have a support system to help you…spouse, friend, parent, pastor, even this website!
You are the first comment I’ve read about it getting better! I haven’t started the taper yet; I’m afraid of the withdrawal, I’m afraid of getting the headaches again that I started taking Topamax for in the first place, I’m vainly afraid of gaining a lot weight! I experience all the side effects and want the clear head, memory, motivation and my personality back more.
How long until you felt better? Weeks, months? I just want a general idea of what to prepare myself for. And do you have any suggestions of anything else to help? I do have a great support system, but any homeopathic things I can do?
Hello Stephanie, I have been on Topamax 50mg twice a day since 2005 and 2 months ago, but because my seizures and migraines stopped, I asked my Doctor to cut it down to 25mg twice daily. I have experienced very little in the way of side effects, in fact, my memory has improved tremendously and I no longer grope for words. Yes, I do get hot flushes (I am 68) and feel nauseous every second day, but I am tapering off very slowly, taking great care not to do anything that might precipitate a seizure, or migraine.
For example, no flashing lights, do not get over tired, avoid getting stressed, loud, busy, noisy places, too much mental stimulation, get enough sleep, and drink plenty of water. I also meditate regularly and avoid watching TV because I find it overstimulates me mentally, and I stay away from busy shopping malls. I also limit myself to two cups of coffee a day, no alcohol and have never used hallucinatory drugs.
I am well into my second month of withdrawal now, and have never felt better. People also comment on how well I look. I have always been chubby, but have not regained the weight I lost whilst on Topamax, because I watch what I eat and exercise regularly. Good Luck!
That’s nice to hear that you did not regain your weight. I have been concerned about that part. I have a hard time making myself GO TO BED while on it. Anyone have that problem besides me?
I finished tapering off Topamax about a week an a half ago. A week ago I started experiencing mono-like fatigue. I can barely function and couldn’t figure out what in the world was wrong with me. I see that on the list, which is comforting. Just wondering if others have experienced it to this degree and how long it lasts (I tapered off of 50mg).
I have been slowly tapering off of 50mg and have extreme fatigue, increased appetite, sleep disturbances, vivid dreams, moodiness, some depersonalization, feeling hopeless. And I am still on 12.5mg daily! I started at 50 milligrams and was there for about four years, I tapered down to 25 milligrams and stayed there for three weeks, then went down to 12.5 milligrams.
I didn’t notice any of the withdrawal side effects until I got down to the 12.5 milligrams. I’ve been on this dose for almost two weeks, and will probably remain here for at least another week, and then maybe taper to 12.5 milligrams every other day so that I withdraw slowly.
Following up again: I ended up with severe depression as a result of trying to taper off of Topamax. My doctor put me on 25 milligrams of Zoloft to help with the Topamax withdrawal. I am getting ready to try to get pregnant, so I need a pregnancy safe drug.
I have now been completely off of Topamax since February 1st of 2017, and things have gone pretty well, had a little bit of restless leg at night, but over the last five days or so, my appetite has exploded. This is terrifying, since I have worked extremely hard to lose a hundred pounds over the last few years, and gaining back weight is my nightmare.
I’m hoping that the extreme appetite goes away. Could I still be in the withdrawal period just 20 days after stopping? If anyone sees this and has had appetite increase after stopping Topamax, please let me know. Thank you.
I’m wondering if someone else has had a similar experience with Topiramate as I am having. I was only on it recently for literally 4 consecutive days at 25 mgs each day. I was not able to tolerate the side effects, so I stopped taking it after the fourth day. 3 days after I took my last dose, severe vertigo hit me. I also experienced nausea, throwing up, and severe headaches. The vertigo was so bad I thought I had a tumor in my brain. It was frightening, until I realized what it was. It has been 14 days since I stopped taking that topiramate and 11 days since the withdrawal symptoms kicked in. The first three days felt like I was stuck inside a blender with the speed turned on high.
The fourth day until today I just feel like I’m drunk all the time. I can’t focus, my eyesight has diminished, I cannot drive a car, do chores around the house, and I get nauseous and headachy when I move around too much. I was only on the stuff for four days! I should also mention that I’m also taking a low 10mg daily dose of Citralopram (for depression and anxiety). I learned that the Topiramate increases serotonin production. So I’m wondering if I’m experiencing serotonin syndrome???? I also have always slowly metabolized medications. Medications stay in my system twice as long as the average person. Can anyone give me some helpful advice, confirmation of my suspicions, or helpful hints?
Gin F, I was only on topamax for 8 days at 25mg per night. I experienced horrible side effects immediately upon starting this medication. Tingling sensation in my hands and feet, increased headaches, brain fog, loss of words, blurred vision, double vision. It was my neurologist that prescribed me this medication for headaches. My optometrist had me discontinue it due to vision problems and eye pressure. I am on day 3 of withdrawal. I was told by my neurologist that I’d experience zero withdrawal symptoms because I wasn’t taking it for seizures. WRONG! I’m experiencing severe blurred vision, increased headaches, stomach pain with nausea, anxiety that is almost panic attacks and just overall not right in my head.
I started Topamax last week. 25 mg once a day in the evening. I too began having adverse side effects immediately. My neuro told me I’d have numbness and tingling in the hands but to just push through the symptoms, it would be better in a few weeks. I stopped taking it after three days. That was this last Saturday.
Here we are three days later and I am still miserable. I cannot believe this drug is even out there. It was prescribed for migraines. I will take the headaches over how this made me feel any day. I don’t know how those of you that have taken this for years did it. I could not function! Three days people!!! I just want to feel “normal again”.
Hi Christi, how long your symptom went away after you withdraw the topamax? My daughter just stopped last night after two 25 mg pills and she is suffering pain in her muscle. Your replay is greatly appreciated. Thanks you very much. – Grace
I was on Topamax for many years–100 mg at night and 50 in the morning. I am now tapering and after 6 weeks am down to 25 morning and evening. My neurologist said to go 25 mg every 6 wks, but since there were no withdrawl symptoms after 3 wks except for maybe some bowel trouble, I decided to do it more quickly. I HAVE had some stiffness in neck and shoulders. The doctor has given me some muscle relaxers for that. I have also been getting acupuncture treatments for my headaches and for the pain/stiffness in my neck and shoulders and I am getting regular massages.
All of these things have helped A LOT! The Topamax never worked for my frequent headaches. I have had fewer headaches since I started the acupuncture. I think the key to going off the Topamax is to do it SLOWLY, over several weeks or months, if you can. The kidney stones were always a worry for me–my doctor warned me every time I went in to see him to drink LOTS of water to avoid them. Hope you all feel better soon!
I’m glad I found this web site because I was never told what to expect after stopping Topamax. I was on 200mg/day for 5 years and my new opthalmologist made me go off of it. I tapered down slowly and have been completely off it for 5 months. I am still having withdrawal symptoms after all this time. I have had anxiety, depression, dizziness, insomnia, ear problems (ringing, fluttering feelings and sounds), return of the migraines, and personality changes (extremely emotional with crying, rage, negativity). My family is avoiding me and I am becoming more isolated. I have reached the point I might go back on it if it were not damaging my eyes. I am going to see my PCP about something to calm me down. I can’t keep on this way.
Linda, How are you doing now, 2 years later? I ask because I am tapering off 200 mg/day for 5+ years and am scared to death although I know it is the best thing for me.
The drug had caused me 5 kidney stones, which impaired my renal function and topamax metabolism. This started the initial withdrawal symptoms. I was then taken off the meds (200mg b.i.d., 400mg daily) because of the stones. Nobody warned me of the incredible impact it would have on my life. This website let me realize I was not going insane, I think it’s about time that pharmaceuticals warn us not only potential side effects while on meds but the far worse effects upon stopping them.
Yes.
I have stage 3 renal failure that I did not have before…
Greer! Yes all of these are very true… sad but true. Also very helpful. I honestly had no clue as to what was going on with me, one day I just felt very lightheaded my heart was pounding fast and I felt very nauseous, and then came the anxiety. I had went to two hospitals whom ran blood tests and all came back negative. So here I am thinking I am losing my mind well needless to say my neurologist never mentioned withdrawals either. So I had no money for my script went out cold turkey for about 2 weeks and here I am still trying to deal with withdrawals. Oh but I did go to my family physician who told me I was experiencing withdrawals and he prescribed me an anxiety med. So I am back on topamax and an anxiety med. Yay me!
I failed to have my script for Topamax refilled soon enough as my Doctor went out of town for several of weeks and the pharmacy never called back as to why they could not or were not filling my order. After a week of not hearing from the pharmacy or doctor I thought I might just stop the drug it never seem to help control the headaches. So I had been on 200mg of Topamax for at least 4 years I am going cold turkey. First week insomnia and increase headaches and some depression or anxiety tending toward depression.
But the second week was horrible depression, crying, headaches with pinching near eyes would not abate even with meds. Muscles tight in neck, shoulders and back very bad. Nausea and vomiting. It is then I woke up and got my Topomax refilled. First night slept through night and woke up at 9:30 am. No eye pain as yet. No nausea as yet. Yep I know cowards way out but I had no symptoms of it. But hate to think my body is this “addicted” to it. May some day try to come of slowly.
My symptoms seem to flare up rather than remain constant. Is that similar to anyone else’s experience? I’ve been tapering off for a week. I’ll be fine for several hours, and then the nausea and hot flashes will start. I’m tapering off because I’ve developed kidney stones, and it was unclear if the kidney stones were causing the headache / nausea / hot flashes. But my urologist thinks it has more to do with the tapering off. I’m not having any pain associated with the stones. The mood swings/agitation is off the charts. My head get so flushed, I feel like a tick full of blood. But then the next day I can feel fine. I just wish I knew what was triggering it… a meal, eating a certain food, so I could avoid it or at least plan my day better.
Let me start by saying this is the most annoying med ever, it doesn’t really work, the side affects are ridiculous, and the withdrawal symptoms are even worse. Its been about a month since I tapered off topamax and I feel like I’ve been hit by a bus. The muscle pain and weakness are unbelievable. I’m dehydrated even though I’m drinking plenty of water. I feel like I’m having an out of body experience. The migraines – no words, I have headaches and I can’t even describe them. On paper, my blood work is perfect, but I feel so bad. This is taking too long. Anyone experiencing the same please help, I need to know if this will ever stop.
I’m going through the same exact feelings and it’s been almost a month I’ve been off.
How long did you take to get off vs. how long you were on? How high was the dose? Do you think you would do anything differently? Perhaps you have advice for those of us trying to get off and worried by your pretty rotten report!
On topamax I was fine for a few months then started getting confused, so had to slowly get off of it. Its been two months since quitting and I’ve been going through withdrawals. And everyone is telling me there are no withdrawals from topamax. Well it is horrible. I had every withdrawal symptom listed in this article.
Hi Tina, I was hoping to find someone like yourself that seems to be in the boat as me. I too have been off of Topamax for about 2 months WITH withdrawal symptoms and it SUCKS! I know your pain, and it’s even worse when there is nothing anyone can do to help. I’m hoping I wake up one of these days and all the symptoms are gone. I suffer from migraines and at one point I was thought to have seizures so I was prescribed Topamax.
I had side effects for the first few days then they went away. About 3 months later I had just a sick feeling and no appetite. I fought through it and continued for about a yr and a half and decided to just stop cold turkey. I had one withdrawal symptom the first week, then slowly the symptoms got severe, to the point where I was in the ER because I literally thought I was going to die. Again, I’m hoping they go away soon. They have gotten better but now that my appetite is back, I eat and get extreme . And if I don’t eat I get fatigue and leg tingling. I know this is a long reply but it is very refreshing to know I’m not alone.
Hi ladies, I’ve been going through the same thing. I’m so unsure anymore about whether or not I should just stay on it. I’ve come off it a few times over the last 11 years, and ended up back on it every time. My rebound headaches have been horrible, I wake up with then and go to bed with them. I’ve been off it cold turkey, per my doctor, for almost 1 month. I feel like sh*t!
Thank you, all, for your sharings. I am being encouraged by my homeopath to come off this drug after successfully stopping Paxil. That withdrawal was a nightmare, mostly because my M.D. never told me of possible withdrawal and she took me down WAY too fast, I discovered after-the-fact. This time, I found this site and all your generous postings ahead of time. I am properly apprehensive.
Wondering how everyone is doing? I changed my taper schedule and feel it’s working fine. I went from one 50 mg at bedtime to 25 mg at bedtime and 12.5 in the morning. I’ve done that for 10 days and tonight will take 12.5 at bedtime and 12.5 in the morning. I’m taking Fish Oil 1200 2x daily, Vit D 5000 IU 1x daily, Folic Acid 800 mcg 2x daily and Natural Calm 2x daily. Feeling pretty good other than a slight headache and dizziness. Looking forward to being totally off and hoping for renewed energy. Please post updates.
You’re the only person who had said anything positive. It gives me hope that there is a light at the end of the tunnel. It just never occurred to me that this drug has caused me so many problems. I’ve never known about it. I don’t take much now, but I still have a little left to taper off of. And I will make a pint to remember to take my vitamin D and fish oil! Thank you.
I have been suffering for migraines for about a year now. I am a male and 30 years old. I have tried Elavil, and I have been on Metoprolol for blood pressure. I cannot function on these drugs as I become fatigued. My doctor switched me to an Ace Inhibitor. Then the doctor put me in Topamax. Started 25 mg a day and after a week I was at 50 mg a day.
After being on the Topamax for almost 3 months I had bad GI systems of infrequent stools and severe gastric pain, so my doctor decided to wean me off the Topamax. My weaning off period was fairly quick as I was not on the drug that long. 4 days at 25mgs and every other day for 6 days at 25mgs was my weaning off period.
So a few things to report. There were other symptoms that Topamax helped with that I did not give much thought to (the headaches were the main reason). I would get intermittent twitching in my biceps, triceps, and quads. Physical Therapy exercise I was given before the Topamax has helped me get these mostly under control. The rebound headaches are the worst.
I do not remember the headaches being this bad. It literally feels like an ice pick is constantly going through the crown of my head on the left side, the pain never leaves 24/7, and now I have pain in my inner ear, and my vision is slightly decreased on the same side. Also, my headaches are now starting to spread to both sides! My headaches were almost always on the left (in fairness the left side of my head hurts a lot more than the right). They wake me up at night and I have a headache when I wake for the day up 50% of the time. The Topamax never broke my migraines as I have had a constant headache, with only one 10 day break since August 2013, but muted the pain about 60%-70%. It is the exact same feeling I get when I take imitrex.
I have not been on this drug this long. Has anyone else had worse headaches when stepping off the drug, after only taking it for a short time? I finished my 6 day, every other day taper 5 days ago and the bad headaches began when I stepped down to the 25mg taper does, almost 2 weeks ago. Any insights would be appreciated.
I was on Topomax for 2 months, when I took the 100mg – after two days I was almost suicidal, and ringing in my ears. I weened myself off over a 5 day period went down to 50 for two days and then 25 for 3 days. The ringing continued and it has now been 9 days that I am Topamax free and yet the ringing is still in my ears. I have been checked by the clinic – no ear infection, but being sent for a hearing test. Doctor at the walk-in clinic thinks it could still be in my system and it may tapper off. I sure as hell hope so. Anyone experience the ear ringing?
Hi Terri, sorry to hear about this, the tinnitus must be driving you crazy. Keep us posted on the results of the hearing test. Hopefully everything checks out alright and the ringing subsides. It could be a result of drug-induced tinnitus, but let’s hope it stops. You may want to consider seeking immediate attention from an ENT (ear, nose throat) specialist. Wish you nothing but the best.
YES! I thought I was having a stroke!! I have Raynaud’s so I should not have taken this. I had no idea it stayed in your system for so long. HORRIBLE drug. Hot flushes. Ringing in ears. You could see every vein in my foot. I couldn’t function for days. I will never take this again.
Why should this drug not be taken if you have Raynaud’s? I too have Raynaud’s and have been taking Topamax for the last 7 months. Finally weaned myself off, but now suffering from continuous headaches, dizziness and insomnia.
I had to stop taking this medication cold turkey because I found out I was pregnant and this is very bad for the baby. I have had a headache non-stop for over a week. This is not just any headache, I feel like my head is in a tunnel. I have to turn my head slowly and if I don’t, it basically buckles me.
I am so upset because I was prescribed this medicine for bipolar disorder and come to find out, it hasn’t even been proven to work for bipolar disorder. Now I’m stuck with withdrawals and with the terror that taking this medication my whole first trimester (I didn’t know I was pregnant) can cause deformities to my baby as I’ve been told by my doctor. :(
I’m glad in not alone. Thursday was my last day on it yesterday was OK. I seized last night… was a small one and I have felt today, like I was in seizure mode all day, now I know it’s w/d symptoms. I did call my doctor though. I hate this and had no idea w/d would be like this.
I have been on Topamax for over 3 years now to treat headaches and trigeminal nerve pain due to a brain stem tumor. I recently moved from one state to another and had to switch doctors. I am also on other medication to control seizures and migraines due to the tumor as well. The medication I take for the migraines (that works the best is Migranal). Well this MD wanted me to increase the Topamax to 200 ML a day to control the headaches to I wouldn’t have to take as much Miganal).
I did it for 2 day and the side effect’s were such that I just could not continue to I just went back down to 50 ML 2x . With that dose I got terrible vertigo and dizziness! And now I am having this weird noise in my head like “muted zapping” every time I move my head and I feel like I’m in a fog. Has anyone had that? I was determined to just quite taking the medicine all together until I read your postings… now I’m not sure that is the best thing to do.
Did you have any trouble looking at the Computer or Driving. How long did your symptoms last? Did you have to go back on Topamax?
I can attest to the zapping felling from trigeminal neuralgia. I had that symptom as well prior to taking the topamax fo TN. Over time it went away. Ask your Dr. about Tegratol and Neurontin which both helped me with TN.
Did the ringing in the ears subside over time? I am two week’s off tompamax and experiencing ringing in ears, throbbing head and unable to sleep. Also forgetful and just not feeling with it. When will this stop?
I too have had ringing in the ears – along with joint pain, visual changes that include this odd dizziness without movement, and abdominal pain. I was on 175 mg/day for migraines. I am trying to decide if I should go back on it.
Juliet, how are your Topamax symptoms now, 8 months later? Did the ringing in ears, joint pain, vision, dizziness and abdominal pain subside? How quickly had you been tapering?
I was only on it for a month up to 75 and couldn’t handle the side effects. Withdrawal has been worse though… tinnitus, pain behind my ears, and best of all; I now have tachycardia every time I stand up.
I have had ringing in my ears before starting Topamax, but it has gotten worse over time. Not sure if it’s the Topamax or just my tinnitus, which runs in my family on my mom’s side. The ringing has gotten much worse since coming off the medication, it’s been 4 days. I’d like to know if the ringing would improve if I was off it long enough.
I too have tinnitus, have come off Topiramate cold turkey 2 and half weeks ago and have much worse tinnitus now as well as serious dizziness and fatigue.
Has the ringing now gone? I have this.
I am on Topamax and am happy with it but notice some of this ringing while on it. I don’t mind it too much but it makes me think that when it’s time to come off, I’ll need to go verrrryyy slowly. Also, on Topamax, I never seem to be able to make myself go to bed. It’s 2:30 AM now!
I was on 100 mg for migraines. Side effects at FIRST were: pins and needles, fogginess and a bit of confusion. I had 2 migraine attacks in 24 hours and “stroke effects” Doc upped me to 200mg a day. It was awful: pins and needles all over my body, vision got worse, lost lots more weight, didn’t know if I was coming or going – the memory loss was let’s say, scary.
I told doc about my side effects and he started weaning me off. It took me 3/4 weeks to wean off Topiramate. It was a nightmare for me. I could hear music playing when there was no noise in the house. I was thinking all sorts of things. I cracked up one day when I was putting things all over the house, staring into space. I didn’t know what I was doing.
Been off them 2 weeks and I feel great. I have not 1 had migraine and I can function. My friends have noticed that ‘I’m back to me.’ Doc wanted to put me on Gabapentin 2 days after the weaning but I haven’t taken them, they are still in my cupboard. I feel fab… No more medication for this one.
Mine hasn’t gone yet. I’m 6 weeks off now and still having symptoms. The dizziness is much improved, but the tinnitus happens intermittently, accompanied by lightheadedness, something going on with my eyes and an almost bubbling feeling in my head. Hopefully it will wear off soon.
Been on Topamax for migraines about 10 years. Over the last six months have had upper respiratory issues and ringing in my ears intermittently. Am tapering off of my 100mg daily dosage now. Ears still ringing but respiratory symptoms improving. Can’t wait to get off the drug to see if all symptoms subside. I am praying they do!!!
Paula, what dose did you take for the 10 years? Did you taper down slowly?
VCT. I was on 100mg daily. Tapered off by 25 MG a week over 3 weeks. Now almost 4 weeks later still having intermittent tinnitus, occasional nausea and vomiting/ dizziness, and headaches that are relieved by Maxalt. Still coughing some with congestion. Go back to ENT tomorrow.
Hi Paula, it’s been a while since you have been off the meds, how are you feeling? I had been on Topamax for about two months, I weaned off them because I kept getting bronchial inflammation. Two weeks ago was my last 25mg.
Here two weeks later I’m still feeling lightheaded/dizzy, feel breathless and have congestion in my chest. It almost feels like I have asthma or my chest feels heavy, but won’t cough anything up. I’ll especially feel lightheaded when I try to cough something up as to not feel congested.
I’m just wondering how long your withdrawal symptoms lasted.
I have and sometimes still do after being off it. Terry
My doctor has taken me off Topamax cold turkey. Now. I’m a little scared. I was on 100 mg twice per day. I’ve been off for a wk and a half. Starting to feel a little funny in my head like a little confused off and on. Also lots of anixety. I already have an anxiety disorder and taken xanax 1 mg. I’m allowed 4 per day. Still trying to take 3 per day, but now having to take my 4 per day. Still having lots more anixety than ever!!! Can anyone give me some QUICK Suggestions!!!!! Thanks Patsy Ferguson
I’ve been on 100mg Topamax at bedtime since January (about 7 months) to prevent migraines. I can say that it has worked for that purpose, but it also contributed severely to my struggle with depression and I’ve had some of the foggy brain symptoms like losing words and reduced energy. I decided to go off the med after talking to my therapist.
I’ll figure something else out for my migraines if I need to, it’s not worth it to stay on Topamax when it’s so detrimental. I’ve been following the 25mg per week titration and have only had a little dizziness here and there, nothing major. I’m already starting to feel more like myself again. Down to my last four days of 25mg! Here’s to hoping I can make it through without more withdrawal symptoms. Fingers crossed!
I would check with a doctor.
Thank you for an informative article, the best I’ve found. I’ve been on topamax for 10 years and started the tapering process yesterday. Originally I took 50 mg twice a day but I dropped the evening pill years ago. My plan is to cut the 50 mg in half and take the 25 mg for 40 days …. split the half and have approx. 12.5 and take it for 40 days and be done. I don’t feel comfortable tapering any faster and hope my plan is slow enough. Comments and suggestions would be greatly appreciated.
I took my first 25 last night and didn’t expect to feel differently overnight but today I’ve had a slight headache, dizziness and nauseous. When I told my husband how I was feeling he thought perhaps I was coming down with something rather than having withdrawal but I’m confident its withdrawal. I’m very sensitive to medication and remember well how sick I felt after taking the first 25 mg topamax. I’m really interested in reading anyone’s account of stopping topamax and if they’ve successfully stayed off.
I was on Topamax for about 10 years and it was not helping with the migraines (I also have epilepsy) so I wanted to try something else. I was taking 100mg, twice a day. When I started tapering off my body went into some type of shock mode. I started having episodes where my eyes would close (sensitivity to light), start to tremor, sometimes worse then others; and would also often cry or scream because my body stiffened so bad. I am now on Keppra and seems to be no side effects but still going through these episodes. Waiting to have a 72 hour EEG done. I just want answers.
Christina – I take 50mg Dopamax 2x/day with 1000mg Keppra 2x/day to control seizures and it is working well for me. It did take a long time to come up with the right combination of meds/dose, years. In the beginning, my Dr only prescribed Keppra and it didn’t control seizures even at over 4000/mg – 2x/day the seizures persisted.
I didn’t like all the side effects of either drug, but hated the seizures even more. The Dr and I finally agreed on my current dose and it seems to work well, but I still have some pretty major side effects. So having said that, I am going to taper down to half that dose. My doctor doesn’t even want to talk about taper down anymore, but I am sick and tired of the side effects.
I would suggest to anyone with epilepsy to taper down very slowly. I did quit both drugs “cold turkey” once and had one of the worst seizures ever. For my taper down, I will drop my Keppra dose 250mg/every 90 days. By the end of the year I will be at a 1000mg/day dose instead of 2000mg/day. As for the Dopamax, I am thinking about dropping 25mg/day for 6 months AM and the same 6 months later in the PM.
In the end it will have me at 50/mg/day. So basically after 2 years I will be taking half of the meds I am now. I want to play it safe and not have any seizures and they can cause serious injury and death. Please let me know your comments/questions/concerns. Thanks, Ricko
When I started tapering down I also started doing daily enemas. First with water only and then I added coffee enemas to help the liver to clear and let go of held toxins. That helped plenty! I got 3 days headaches when I drooped my last 25mg and it seems that was it. My blood pressure came up during my tapering and seems to come back to normal now after those 3 “stronger” days.
Often a not clean colon by itself can create the illness needing such medications and cleaning the same for a longer period of time can/might take care of the root cause itself. I do enemas since 3 weeks daily and will still go on for another 4 weeks. It is my higher guidance suggesting to go this route. Through researching the web I had found out that many stronger illnesses can be cleared through longer periods of colon cleansing enemas.
I also did 3 colonics during my 3 weeks and every time after I only felt great! So, I am sure for myself that the detox process by coming off of any medicine can greatly benefit from doing enemas. I hope everyone will find his/her way to get through the process with as much ease as possible. Love & light to all … Virendra ***
How do you do coffee enemas, may I ask? And where do you get colonics from?
It is the withdrawal I felt exactly the same on dropping my 1st pill on detoxing from this drug, in fact had light flu-like symptoms for the first 5 weeks. Topamax never reduced my migraines, and on 100mg I was having hallucinations, cloudy thinking, trouble concentrating and word loss not to mention dizziness and trouble walking without stumbling. I am down to 50 mg now dropping to 25mg Friday…for me, this was the drug from heck! Jim
I am so happy you are trying. It’s not for all but me it is and I want people to know I as on over 8 pills a day. God willing he’s helped me become stronger than I’ve ever been. Deciding it’s my body I know what works and doesn’t anymore. My struggles were severe! But doctors are not wonder workers either. Good luck all. Willing to help anyone, been there…
Thank you for the withdrawal tips. I was on DOPAMAX (I called it that because it made me stupid like dumbo & Jim Carey on Dumb & Dumbmer) for 3 weeks and I told my doctor to get me off this crap. The side effects were horrific. I was taking Topamax as a mood stabilizer. My doctor told me to come off of if completely because I am taking different meds and it will help with the side effects, and withdrawals symptoms, plus I was on it for a short period of time.
Never again will I take this annoying and “pain in the butt” medicine. Donald Trump could not pay me a millions dollars to get me to go back on this poison. No way Jose. Just letting people know and getting my point across. All of you people on this site, you all have a joyous and blessed day.
Best website info I have found to this date. I am currently on 400mg of Topamax for seizure disorder for the last 4 years. It has probably saved my life but at a high cost. I can identity with the “Dopamax” comment completely, words are hard to find for me and I am a shell of the quick witted man I once was.
I have tried a reduction in dose against Drs, recommendations and I find I have rage problems almost immediately along with overwhelming anxiety. I don’t know, this stuff has its teeth into me pretty good. First step is a new Dr I think.
I know EXACTLY what you mean with the loss of words!!! OMG! I was on 300mg of Topamax for seizures for the past 4 years. It has ruled my life! I have had lethargy, and dizziness so badly I’ve had to stop work. The newest and most troubling problem from Topamax is I have had kidney stones! I was hospitalized in late March with a horrible kidney infection, large stone, and had have I.V. Antibiotics for 3 days, and a stent placed.
The stone couldn’t even be blasted for a week later because the infection was so bad. Once my Neurologist found out about all of the kidney problems, he was quick to take me off of Topamax! I’m now 5 days into weaning off it and gradually getting onto Keppra…right now I’m on 500 twice a day and will eventually get to 1,000 twice a day.
I’m down to 100mg Topamax once a day with the Keppra, and I’m so dizzy and tired, I’m not sure WHICH it’s coming from!…the withdrawal of the Topamax, or the starting of the Keppra! I just know I feel like I’m on a Tilt-A-Whirl every time I stand up and walk!…LOL!
I was on 50 mg a day twice daily, and decided to take myself off also. I tapered it over a 3 week period, and it’s been 2 weeks since I took my last dose. I was taking it for headaches, but still had headaches while on it.
I noticed that my word recall wasn’t good, and it made me feel like I just wasn’t myself. I also had trouble typing, often getting letters confused, so I spelled words wrong, which isn’t like me at all. I started having nausea last week, feeling like I was going to throw up, but never could. I also have a white tongue, dry mouth, and decreased appetite where others have mentioned an increase.
Also I have had a rapid heartbeat with higher than normal for me blood pressure. I don’t know if this is a side effect or not, but I have had an EKG done, blood work, and chest X-rays, all of them coming back normal. If this is a symptom, I hope it passes quickly. Nobody else has mentioned it and it wasn’t mentioned in the withdrawal symptoms in the article, so I don’t know what to think.
Going back to the doc tomorrow. Strange with the timing of it all though. The saga continues.
I also experience this and my vision is blurred even with my reading glasses.
Hi your story really spoke to me I have been on topamax for 1 year and it has caused me to loose a year of my life. I started have the Alice in Wonderland effect I would go numb from head to toe and have intense headaches. This July I finally discovered it was the topamax and I got off it by cutting my pills in half. But I think I’ve been having the withdrawals with tingles and the sleepy feeling in my hands and face.
I also have had the heart issues and went and got checked out and everything was normal. Such a scary felling and Dr’s look at you like your crazy. Thank you for your story to make me not feel alone. I have been having the headaches and fatigue and nausea so it must be the withdrawal effects. Thank you again.
I’ve been on Topamax for over 10 years due to seizures. I hate it, I’m so dizzy all the time, my doctor has me on 400 mg. I’m not going back to see him, he will just fire me anyway. I’ll just go down to 200 mg. for a couple of weeks, then quit. Then I’ll be on God’s good Grace.
Oh my gosh you have to taper slower. You can provoke a seizure. If you don’t like your doctor do find another. Please read what the doctor here said. You’ve been on for 10 years. You may need to take longer between drops, and split the drop from 25 to half that toward the end. At least, and probably a bit longer than 2 weeks for each step down. Please do this successfully and safely. Not miserably. If you have seizures the Topamax withdrawal will need to be supervised and replaced or the seizures otherwise treated.
I agree with B here, Susie. After having an EMU and finding out that I should not even be on Topamax I had to withdraw from this medication quickly from 350mg to 50 in 4 weeks, from what I see from this article, that is very fast. But because of all of the anticonvulsants I was on, I needed to get off it quickly (but I am replacing it). My doctor says that Topamax stays in your system for a long time, so you need to slowly withdraw.
8/10/16: I started on Topamax in 2008 for migraines 100mg/twice daily. I too have had kidney stones, twice. I take potassium citrate, 4 tablets daily. The side effects I have experienced from Topamax has affected my life. Big time. Cannot finish a sentence. Forget words that I know, it just won’t come out. Can’t remember simple things.
I have lost my job 3 times since 2009. I’ve been judged, talked about at work that something is wrong with me, that I don’t retain information. I’m currently unemployed, and I’m weening off of Topamax. I’m getting my life back. I’ve heard of Topamax referred to as Stupamax. I too continued to have headaches while on this med. I’m 45 years old, lost enough time in brain fog, feeling drugged, dizzy, ears ringing, sometimes I hear “talk radio” like a buzz as if a radio is playing.
But there’s not. You feel like you’re losing your mind. My withdrawal issue now is insomnia, I have not slept for 2 days. But since I’m unemployed, I’m not worried. Thanks for a great blog. Migraines suck, Topamax blows.
I just came across this info because I have misplaced my meds. So scared of withdrawal symptoms being that xmas is in 4 days. Been taking Topiramate for probably 8-10 years now 1st for migraines, then as a mood stabilizer when I was diagnosed with Bi-Polar II. This info is invaluable to me & it’s nice to know that I’m not alone. M
I wish you all the luck. I’m on high dose Keppra and high dose Topamax. It has affected my prefrontal cortex and Broca center. I’m on it for seizures. I was on 3 grams of Keppra for 3 years but I”m currently on 1750mgs and until recently I was taking 600 mg of Topamax. Now I’m on 400mg of Topamax.
I have been diagnosed with cognitive impairment. I thought I was getting Alzheimers. It’s a relief to find out all my symptoms are caused by this medication. There’s hope for a reversal. They knew about this in 2006! My physician never told me about this risk.
I’m so relieved to find the comments here! Finally, I see that I AM NOT THE ONLY ONE! My side affects of depression, brain fog and short term memory loss have changed my life for the last 9 months. I’m seeing a new doc next week to find out what else I can take as a migraine preventative and to get off this stuff, I want my brain back! I can’t remember anything anymore! :(
Joseph, I have been off topamax for about a month now. I have experienced everything: nausea, horrible anxiety, balance issues, and for two days a migraine. All have gone away pretty much except for migraine foggy, and I’m in an absolutely rotten mood. What are you on for that? Not that I want to get on anything else. I am fearful it won’t subside. I was on topamax for 10 years. Weaned off very slowly.
I was on Topamax almost 10 yrs. This is it I’m done. How ridiculous they can do this to people’s lives? I’ve had many struggles and taken many things but NO MORE going off of Dr knows most and can’t believe. How good I feel… the best in 10 years. Please I hope others will check out what they are on and how long and question on their own. It took me WAY TOO LONG… Thanks for listening.
Tapered off of topiramate. Haven’t been on any for four(ish) days and the last two days I have experienced horrible dizziness and nasuea. MAKE IT STOP.
Thank you so much for this list, I’m grateful! I didn’t know sweating was a withdrawal symptom and now my extreme sweating and hot flashes make sense to me. I hope they go away soon!
Thank you so much for this website I have been looking for possible withdrawal symptoms. I was on topamax for 4 months to treat migraines and I realized a change in my mood and attitude after the third month. I loved it for relieving migraines but that was all. I begin tampering iff my 100mg a day with 25mg a day for two weeks. I was getting cluster headaches all day and sleeping a lot.
My appetite has not changed so far and no weight gain however I did have the withdrawal headaches for about 2 weeks and occasionally nausea. Some foods/drinks I would usually eat/drink made me want to vomit. The headaches were on the left side near my temple and the back of my head near my ear.
I could not believe what I was reading when you were describing the locations of your withdrawal headaches. Over the past few weeks I have been tapering off Topiramate from 100mg, and since the day I started dropping my dosage I have had terrible headaches. I have now been completely free from the drug for 4 days and have terrible insomnia and tonight my headache is concentrated on the left side (at eyebrow height and temple) and behind my left ear. I stopped the drug due to the terrible ongoing side effects, but these recent headaches have made me think twice… I would do anything to be free of these headaches and dizziness.
Are you able to take one of the sumatriptan medications? Mine (Relpax) now and (imitrex Injectibles) before that, used to work for ages. Topamax only took their place when there were just too many migraines in a week. The sumatriptans if they did help, can help again with break-through and rebound migraine. Hadn’t needed the prescription in years, but am so glad to have it now.
I had been on Topomax (100mg) for over 2 years for migraine & had been thinking of quitting as I wasn’t seeing any benefit. Then I left for a 4 day trip to a remote cabin & found it wasn’t with my other migraine meds when I got there & unpacked, so I went cold turkey. It’s now been 9 days. My side effects are insomnia (it’s 4 am now!), increased appetite, fatigue, & some nausea. Fortunately, no rebound headaches at all.
My doctor has me tapering off at 25-50 mg every 6 weeks. This seems A LOT slower than most of the rest of you are doing. After reading the statements that you made, I will definitely just stop the 50 now and if that works OK, then I will take off 25 more in 6 wks. Slow and easy seems to be the way to go. I REALLY want this to work–I have had the problem of “losing” words at the end of sentences–not being able to think of the word I wanted–for a long time. Never connected it with the Topamax! Also, I do NOT want to take a med that does not do me any good–I still had the headaches!!
Re: I have had the problem of “losing” words at the end of sentences–not being able to think of the word I wanted–for a long time. Topamax saved my career and my mental health when I began having horrid migraines several years ago and needed to stay home in a darkened room at least twice a week. At that time, I was on a very high dose. I eventually tapered down to a maintenance dose of 50mg twice a day.
I decided to go off the medication because my word-finding difficulty became worse and worse. Simple over-learned words (quail, garage, butter) were out of reach when I wanted to use them; I knew it was the medication. I have been off the med for about two weeks now but I haven’t seen a major improvement yet. I was on the low dose >10 years. I’m hoping to get my words back.
I wish I had NEVER heard of Topamax! I don’t know if it did me any good at all on stopping Migraines, but it has severely impeded my ability to speak with the confidence and intelligence I used to be known for. My word recall and ability to say the last word of my sentences has become a source of continual anxiety and embarrassment.
When I try to wean off, I experience mind fog, pressure behind my eyes, nausea, diarrhea, hand tremors and heart palpitations. It’s like an unwilled, unwarned addiction my body now has to a drug that shouldn’t have been prescribed without further study! Resuming my regular dose brings relief within hours! Why was I given an addictive drug without being strongly cautioned as to it’s unwanted side effects?
I feel the same.
I feel the same. (25 mg 2x day) Topamax was prescribed for my intractable migraines but feeling stupid and losing words made me quit the medication. I’m hoping to get back to feeling normal soon. I felt like my IQ dropped 35 points while on Topamax.
I haven’t been on topamax for close to 18 months. I still get stuck on words, ending sentences and memory. If I had known I would suffer long term side effects (I’m wondering if it’s permanent), I would have never taken it. I was very articulate before, now I struggle to find words mid and end of sentence. So frustrating.
I’m trying to wean off of 400mg a day. 200mg in the morning and 200mg at night. I’ve been on this dose for over 12 years. I used to be smart. Now I can’t remember simple things and the words won’t come out of my mouth. They should call it Dopamax.
My fear is that I’ve been on it for so long that my memory won’t come back. My migraines were were so severe that I was vomiting all the time. Migraines lasted for 3 days. Topamax lessened the severity of the headaches but I was still getting them. Now I got a daith piercing in both ears and I’m migraine free!
Wow. Took the words right out of my mouth. I was not warned about this drug either. Luckily I’ve only been taking it a very short time less then 5 months… I’m on 50mg a day and I’m going to 25mg tomorrow – my choice I want off. I forget everything. All the same feelings… this medication is a nightmare and no warning when it was prescribed. I feel cheated. Not to mention it didn’t help my migraines.
Wow. I’ve been on Topamax (now the generic because that’s what insurance pays for) for at least 8-9 years. It used to really help my migraines, but now I get them all the time. And I don’t care to up my dosage as I already have trouble finding words and have always had joint aches from it.
I’ve been slowly tapering from my low dose for the last month and have experienced dizziness, pressure behind my eyes, stomach upset and insomnia. Then I get a bad headache and take a bunch of Imitrex, which makes me sick, and once that passes, I’m back to the withdrawals again. Just want to take less drugs, but I never thought this one would be so hard to quit!
Hello ladies, so glad I found a place that can relate to what I am going through. I was put on Topamax for seizures due to stress and depression. I have been off of the drug for about four months. There are still days, actually everyday that I am having dizziness and stumbling. I retired due to the fact that I could no longer concentrate of remember things.
Some days I feel ok, but never 100. I was also taking 3 other meds for depression. Lost so much time from work because of the adjustments and the inability to drive. I would get lost coming home or forget where I was going so I was not allowed to drive.
This took a toll on my marriage and we separated after 40 years. People just don’t understand what you are going through and some cannot take it. Thanks for letting speak and hope that we all fell better soon and can move past these side effects.
Been on 100mg for 3 years for severe migraines, went cold turkey because I developed kidney stones about 3 weeks ago. Became angry, panic attacks, and uncontrollable high blood pressure, like 215/120 and heart palpitations. Starting back tonight to see what happens, still have Lots of kidney stones; but which is worse? I guess I will just deal with the stones rather than hypertension, panic attacks, and anger.
If all works out well after tonight’s dose I may try tapering off later. Only GREAT thing about this drug, Topamax, besides Zero migraines is; I’ve Lost 85 pounds and I love wearing a size 10 now. Damn if I do, damn if I don’t. I refuse to gain any weight back, but I hate I have to pick kidney stones over the above side effects. Very frustrating, but at least I’m not a size 20 anymore.
Sandy, how are you doing with words now, nearly a year later?
Sandy, Have your word-finding problems resolved? You wrote a long time ago about them. Wondering if your difficulties improved after being off Topamax for a much longer period of time.
I too have had the same problem! I knew all along it was the medication so when my neuro was not much help I found a new OB/GYN. She has helped me tremendously! We switched my birth control to one that has no estrogen in it and within 6 wks I felt like my headaches were so much better. She slowly took me off my night dosage (75mg) and I just took myself off of my morning dosage (also 75mg).
I have been unable to finish my sentences and my once excellent recall memory is gone! I was really starting to worry… I have been off all medication for 3 days and I am noticing slight headaches. I haven’t had a full out migraine but I am hoping that they will taper off as the medication leaves my body. And, like you, I still had horrible headaches while on such a high dosage! I sincerely hope my recall and memory issues subside in time. Good luck!
I am so glad I found this as well! It was hard to find an actual list! Don’t ever ever run out of your meds! I do not want to go through this again! I take a good healthy dose and spent 3 days nearly hurling and sweating and complete unpleasantness. I wanted to know if this was due to the sudden stoppage of this and it looks like it was. Gladly I am good to go now but never ever do I want to run out again!
Did your cognitive function return completely, Kara? How long have you been off Topamax now and how is your word recall? I’ve just started tapering off 200mg and I’m worried.
I tapered off 25 mg every two weeks. I was on 200 mg a day. I still have horrible forgetfulness still and I stopped altogether a month ago. I thankfully didn’t have all the other bad symptoms. Slow taper is better.
That losing words symptom is common on Topamax according to other patients (& me!) I can’t wait for that to go away! It’s scary.
Heather, in my opinion, that is a long time to be feeling those symptoms. Did you quit “cold turkey”? How much were you taking before you quit? What were you taking it for? I think you should let your doctor know that you are experiencing these severe problems.
I quit taking topamax 3 weeks ago and have been feeling extremely tired and dizzy since then. I feel off balance and and don’t even really feel safe driving. I just feel dizzy and “out of it.” I hope this passes soon!!
I’m feeling the same thing, so dizzy and sick to my stomach. Had to stop almost instantly cause I ran out and don’t have insurance to get my script filled. I hate this foggy and unstableness that I feel. Hope this passes soon. Heather are you doing better? And if so, how long did your symptoms last?
Please be sure to let your dr know how you are weaning off. Very important.
Hi there, I was just wondering if you could tell me how long your withdrawing lasted as you experienced the same symptoms as I am going through but I have just gone cold turkey from 200mg a day… Thanks so much.
I too stopped my Topamax cold turkey. I have been taking 200 mg a day for close to a year. I did not ask the doctor or seek advice. I just stopped the drug. It has been a week and a half and I cannot sleep. I am miserable trying to work on 2 hours of sleep a night. I hope this soon gets better.
This is THE ONLY website I have found that lists the symptoms of Topamax withdrawl!! THANK YOU SO MUCH. Again, like the other people, my doctor did not say much. I have been on the med for years for headaches and even though I still had headaches, he hesitated to take me off the stuff. He finally agreed after I started acupuncture and it began to work to stop my headaches and I asked again to be taken off the Topamax. I was on 50 mg in the AM and 100 mg at night. I have started by cutting down to 50 at night just yesterday. Thanks so much for the info! M
I have been taking only 50 mg at bedtime for migraine prevention. My Dr. had me stop the bedtime dose and start a dose of 100mg in the morning with phentermine for weight loss. I feel like I am going through some kind of withdrawal from the missing 50mgs at bedtime. I’m having muscle tightening feelings in my legs and arms. I’m very tired and I want to sleep. But I can’t! My legs keep spamming.
That’s restless legs- it’s a withdrawal symptom. It will go away, but it’s really uncomfortable. They sell beverages in health food stores and also grocery stores that have names like “Sleep Well” that have melatonin and valerian in them – just for the period this is bothering you – you could try one of them. They can take that nasty cramping / aching away. Good luck!
Robbie, how are you doing now it’s been a month? My neurologist had me change from 150 mg topamax to another med and that was a disaster! Full blown withdrawals. Went back on topamax and still dealing with the withdrawal symptoms but want to start to taper off. Wondering how long you took to taper and how you are dealing?
I am SO frustrated! I have never had such a horrible experience trying to get off a medication! I could cope w/ the headaches, muscle cramps and nausea but I sweated through my clothes several times a day for 5 weeks and finally gave up and went back on 50 mg 2x a day. I am still having headaches daily because this is half the dose I used to take for migraines.
I don’t want to take this medicine any longer. I am going to find a medication to help me withdraw which I have never had to do for anything and I have taken hardcore meds for my nerve damage. I wish my doctors had warned me about this when I was given this drug. How are you doing? The only other drug I consider this awful is OxyContin – terrible!
Oh – I was taking 200 mg a day and I very slowly tapered down to 0 over several weeks at doctor’s suggestion to go slowly – it was bad – so tried again going even more slowly…. it’s been bleak. We should write to the manufacturer :(
Thank you so much for this article. There are hundreds on how it affects you while taking… And this is the only withdrawal website. I stopped taking it abt 2 weeks ago and have been feeling “sick” since. Nausea and dizziness are terrible. Can barely function without feeling like I’ll vomit. This article helped normalize my symptoms.
Looking toward trying to conceive, I have stopped topamax (200 mg/day) and my 40mg/day of Paxil simultaneously. It has been a week now, so I don’t think that I should take any of either to ease the symptoms of withdrawal, but the withdraw is terrible. Sleep aids don’t help with insomnia, and the nausea and vomiting are unreal! I’ve gotten off of opiate pain meds before, and this is worse by far!
LJ – I am also trying to quit Topamax (migraines) and Paxil (anxiety & nerve pain). I don’t want to feel so zoned out and numb. It is hell. I can’t stop sweating! The headaches, anxiety and nausea – I can all live with because I can take aspirin, wait for them to go away, distract myself and I’m pretty tough – having dealt w/ chronic nerve pain for 20+ yrs., but the profusion of sweat running down my face, bra, sides…cold and hot, out in public!? Ugh! It seems to never go away! A bath or shower just makes it worse – anything hot to eat or drink sets it off. It gets me every time I try to quit. Anyone have any ideas? Help!
This was the most helpful article I have ever found on topamax withdrawal. This should be spread across the Internet like a virus. I have been on topamax for 4 years at 200mg a day for migraines. I had come to the point where I had lost to much weight and had brain fog so I tapered off but was not prepared by my doctor for the withdrawals I experienced.
I am particularly sensitive to medications and my doctor did not account for that when she tapered me so I had to go back on topamax due to the anxiety and rage outbursts from withdrawal but I will use the information from this article to create my own slower version of a taper down. My doctor tapered me too fast. My withdrawal symptoms had gone on for 6 weeks and were still getting worse at that point when I finally broke down and went back on topamax.
But I will try again because the risks to me out way the benefits of the medication in my situation. Thank you for the extremely helpful information that this article provided!!
I posted on Dec 7 bc the withdrawal symptoms were killing me. I’ve had to withdraw from some hard core antidepressants, street drugs and benzos and this is worse because the symptoms don’t weaken and they don’t stop even though I’m still on the medication, a high dose too. I had gone down from 250-125mg by 25mg a week, after being on Topomax for 4years. I went back up to 175mg that night I posted and felt 100% better the next day.
Well, I went down 3 nights ago to 150mg (it’s been 2 weeks) and am again suffering….major fatigue, confusion, nausea, insomnia but nodding off all night and day, waking covered head to toe in sweat. My appetite has been worse and I’m underweight! I’m going back up to 175mg tonight. I seriously would rather stay on it forever than feel like this. Neurologist is MIA.
Had a similar problem. Went to my PCP and asked for 25 mg tablets. You can break those in half, and take at least two weeks before deciding if you feel well enough for the next 1/2 down. You are coming a long way down. It took me 6 months 200-50mg. Symptoms are vastly minimized. 25 in 1 week is too fast. 1/2 of 25 in 2-4 weeks will get you there functioning. Especially if you’ve taken Topamax for years.
Hi, I was also on topamax for years. I went to rehab and they took me off everything except my antidepressants. 2 years later and I am now trying to get off those two. The only thing is, I have a limited supply left and I am in China. No idea how to go about seeing a western doctor here, without paying a fortune, because the health care system is SO different. Everything for foreigners is out of pocket.
So, I have cut down to taking 50 mg of topamax everyday for at least 1-2 months. And then I tried taking it every other day. And now I’ve been up all night sick with fever and no sleep. I have 100 mg tablets, so they’re not super easy to break, but it’s all I have. I will try 25 mg for two weeks and see how that goes.
Thanks for all the comments and the article!
I was on 100mg/day for 6 months for migraines. This is literally the only resource I could find which outlined the withdrawal symptoms so thank you! I even asked my doctor and she said there’s a lot and they vary which wasn’t very useful. It’s hard to tell what is a side effect and what isn’t, but the anxiety I suspect the medication caused has been lifting significantly. I’ve had insomnia. I feel a lot more clever, less aphasia, less confusion, more social confidence. My appetite increased but not significantly. Doctor told me to drop to 50mg for 1 week and 25mg for 1 week which I thought seemed a bit quick but I followed advice and no issues.
Thanks!
Very helpful information! I thought I was losing it and gaining serious mental illness I had always feared. This cleared up so much for me and gave me the proactive ideas to get me going in the right direction. I had called my pharmacist and he was helpful, but this information literally covered everything I have been experiencing and I feel so much better just knowing it’s normal and I’m gonna be okay. Thanks so much. Laura
I went off topamax the same way. Saturday was my last dose. Now I feel depressed!
I’m glad I have read your comments. I was prescribed Topamax for what they thought were migraines only for two months but help so I went off gradually. However I feel very depressed to the point of crying a lot. Did your depression go?
Lauren I’m so glad someone besides me linked their Topamax use to anxiety/depression. I took Topamax for my migraines and very shortly after I upped my dose to 50 mg a day I noticed major mood changes and unexplained crying. I thought it was just regular depression symptoms because it runs in my family but after doing some research I realized there’s people who had the same problems as me.
Now I’m completely off the Zoloft and Wellbutrin my doctor put me on for the depression as well as the Topamax. However now I’ve noticed some lightheadedness that I’m hoping is just some withdrawal symptoms from the Topamax.
I’m so glad someone mapped this out too! I was on the drug at 50mg a day for migraines and noticed over time my anxiety getting worse and worse to the point of panic attacks which is new for me. I stopped taking it, and my anxiety has significantly decreased! (And no more panic attacks).
It’s been almost 2 months for me and I’ve def. noticed dizziness (even still) and headaches that are different from the ones I had before… but slowly it’ll all settle, I just know it.