Topamax (Topiramate) is an anticonvulsant drug that is used to help prevent seizures in epileptics. It was later approved by the FDA in conjunction with phentermine for weight loss. Although the two primary uses of the drug remain to treat epilepsy and to help people lose weight, it is prescribed by some psychiatrists to treat bipolar disorder. Despite the fact that it is used to help treat bipolar disorder, most evidence suggests that it is ineffective for that particular condition.
If you are on this drug to manage bipolar disorder, understand that it has not been proven therapeutically effective. Some newer studies suggest that Topamax may provide some benefit in treating borderline personality disorder, but further research is warranted. Researchers have noted that long-term effects of this particular drug have not been well documented and that using this drug to treat borderline personality disorder is not well-supported.
In the same regard, this drug has been utilized to help people with alcoholism, but there isn’t enough supporting research. Other investigational uses for this particular drug include: PTSD (post-traumatic stress disorder), tremors, eating disorders, smoking cessation, cluster headaches, and OCD (obsessive-compulsive disorder). Fortunately most people end up having more problems with side effects from the medication than they do with any sort of major withdrawal.
Factors that influence Topamax withdrawal
As with any drug, there are going to be various factors that influence withdrawal from Topamax. These factors include things like: how long you took the drug (time span), your dosage, how quickly you tapered, as well as other individual factors.
1. Time Span
How long were you on Topamax? Someone who was on Topamax for a longer period of time may experience a longer withdrawal period compared to someone who was only on it for a few weeks or months. If you took it for years and suddenly quit, it may take some time before you readjust to functioning without it.
2. Dosage (25 mg, 50 mg, 100 mg, 200 mg)
The initial target dose of Topamax for adults is 100 mg per day – typically divided into two doses. The maximum recommended dose is 500 mg per day divided into two doses of 250 mg. In the event that you are on a relatively high dose, it may take longer for your body to adjust to reductions in dose during withdrawal and therefore you may experience more discontinuation symptoms. People that are on higher doses tend to
3. Cold Turkey vs. Tapering
It is always recommended to conduct a gradual taper to prevent rebound headaches as well as seizures upon withdrawal. Those who are susceptible to seizures should take the time to follow a tapering protocol as opposed to quitting cold turkey. To be on the safe side, you may want to withdraw at a rate of 25 mg every 2 weeks. So if you are currently at 100 mg, cut your dose to 75 mg after 14 days.
Some suggest dropping 25 mg every week, which is a little bit quicker, but many people have successfully managed with that tapering protocol. If these reductions are too intense, you could taper at an even slower rate such as 10 mg per week just to be extra safe. As long as you aren’t cutting from 100 mg to 0 mg or making drastic reductions in your dose over short terms, you should be able to avoid seizures and debilitating withdrawal symptoms. If you have any questions regarding your tapering, be sure to talk to a professional (e.g. a doctor).
4. Individual Factors
Although most research suggests that withdrawal from this particular medication should be relatively short-lived, many people have reported pretty severe symptoms weeks after their last dose. Just know that a lot of the symptoms that you experience will be related to how quickly you tapered, whether you are on any other medications, and how sensitive you are to withdrawals.
Some people may not notice much of anything when they quit taking the drug, while other people may feel relatively sick and unable to function. Just know that your experience with any drug is going to be unique – everyone is different. Having good social support, a withdrawal plan, and doing your best to stay productive can help take your mind off of symptoms and make for a quicker recovery.
Topamax Withdrawal Symptoms: List of Possibilities
Below is a list of symptoms that have been reported during withdrawal from Topamax. Understand that you may not experience all of the symptoms listed below, but you may experience some. Keep in mind that the severity of the symptoms and how quickly you recover from them will be an individual experience.
- Anger: If you find yourself prone to bouts of anger, just know that it could be due to withdrawal from the medication. Some people have reported that they notice themselves becoming angry during withdrawal when they didn’t have any anger problems prior to using this medication.
- Anxiety: Many individuals report feeling extra anxious when they reduce dosage and/or discontinue the medication. Although the exact cause isn’t known, it may be due to the effect that this drug has on the GABA receptors. It may take some time for the anxiety to subside, but everything should return to normal.
- Appetite changes: If you notice that your appetite increases when you quit the medication, this is a normal reaction. Topamax has been approved to help people lose weight and it tends to suppress appetite. When you stop taking it, your appetite may temporarily increase and/or return to baseline.
- Concentration problems: It may be particularly difficult to concentrate during the acute withdrawal period. You may have a difficult time staying focused at work and/or completing normal tasks involving critical thinking and planning.
- Confusion: The combination of physical withdrawal symptoms as well as concentration difficulties can lead people to feel “confused” for a few days of withdrawal. The confusion may persist for a week or two, but eventually you should be able to think clearly again.
- Dehydration: This isn’t necessarily a common withdrawal effect, but some individuals have reported dehydration during withdrawal. It is always recommended to stay hydrated during withdrawal because it helps flush the system of the drug. Don’t overdo it, but drink a healthy quantity of water.
- Depersonalization: Feeling unlike your normal self is something a lot of people report while on this drug as well as when they quit. Some individuals have gone as far as to say it changed their “personality.” It may have changed it while you were on the drug, but as time passes off the drug, you will eventually return back to normal.
- Depression: Some people end up experiencing depression on the drug as well as when they withdraw. If you didn’t have any sort of severe depression prior to taking the drug, then your mood will return to normal after you quit.
- Dizziness: This is perhaps the most common withdrawal symptom from any medication along with headaches. Many people have reported dizziness and vertigo immediately after they quit. The dizziness may last for a couple weeks, but should gradually diminish as time passes.
- Fatigue: Don’t be surprised if you feel pretty tired during the withdrawal period. You may notice that you have low energy and want to sleep more than usual. After a couple weeks your energy levels should pick back up.
- Headaches (Migraines): A lot of people take Topamax to help with cluster headaches and migraines. Don’t be surprised if you experience rebound headaches when you discontinue the medication. Additionally even if you didn’t have migraines prior to taking the drug, you may end up dealing with headaches for a few days as you withdraw from the drug.
- Insomnia: Some people notice that they are unable to sleep when they quit taking this drug. It is thought that the increased anxiety as a result of GABA changes can lead to insomnia. Do your best to reduce your arousal with relaxation exercises if you are experiencing insomnia.
- Irritability: You may notice yourself becoming increasingly irritable during the withdrawal period. Just keep in mind that this is temporary and a result of your brain readjusting to normal function without the drug.
- Mood swings: Some individuals have experienced changes in mood upon withdrawal. One minute you may feel angry, the next depressed, the next more like your normal self. As time passes, your mood will stabilize.
- Muscle pain: A common reported withdrawal effect is that of muscle weakness and pain at the joints. This could be due to the fact that your body is now functioning without the influence of a drug and is no longer getting the subtle pain relief and muscle relaxation that the drug may have been supplying.
- Nausea: You may feel nauseated during withdrawal as this is a normal reaction to withdrawal from most medications. The nausea is typically not overwhelming and will likely subside within a week or two.
- Panic attacks: If you experience anxiety and allow it to get out of hand, it may lead to panic attacks. In part this may be due to changes in the GABA receptors during withdrawal. As long as you taper slowly and do your best to practice relaxation exercises if you experience intense anxiety, panic attacks shouldn’t be long lasting.
- Seizures: It is important to avoid quitting this medication “cold turkey” as you may experience rebound or withdrawal seizures if you aren’t careful. Therefore always follow the protocol as issued by your doctor and report to your doctor if you experience any problems.
- Shaking: Some people have reported experiencing “shakes” and/or tremors when they discontinue. These should not last more than a couple days unless you quit cold turkey from a high dose.
- Sweating: In some cases people have intense sweats throughout the day and while they sleep during withdrawal. This may be a detoxification mechanism by the body to help itself readjust to functioning without the drug.
- Thought changes: Some people have noticed that their thoughts are weird or “odd” during withdrawal. Additionally others have noted that this drug changed the way that they think and/or their entire personality. Once you are off of the drug for awhile, your personality and thoughts should return to normal.
- Vision changes: A troubling side effect that people report while on the drug is changes in vision and eyesight problems. During withdrawal, people have noted blurred vision and visual changes. In most cases, these changes in vision should return to normal over time.
- Weight gain: Since this drug is used to help people lose weight and it inherently suppresses appetite, many people gain back the weight that they lost while taking it. Don’t be surprised if you gain a little weight once you withdraw.
Topamax Withdrawal Duration: How long does it last?
There is really no telling how long the withdrawal from Topamax is going to last. Most people suggest that it takes anywhere from a few days to a few weeks to be free of withdrawal symptoms. The half-life of the drug ranges from 19 to 25 hours, meaning it could take over 2 days for the drug to leave your system. Most reports suggest that there isn’t a protracted withdrawal syndrome associated with Topamax, so no need to panic.
Many people experience the usually mental fogginess, low energy, and thought changes for a few days, and end up returning to normal relatively quickly. Some people actually feel better within a couple days of stopping Topamax. Obviously it may take your body longer to adjust if you were on a relatively high dose for an extended period of time and/or you quit cold turkey.
There aren’t many horror stories regarding Topamax withdrawal like there are other drugs. During the withdrawal, it would be in your best interest to make sure that you get plenty of sleep, eat healthy, and get some light exercise (e.g. go for a walk). If you feel anxiety and/or possible panic, take the time to utilize some sort of relaxation techniques.
Most people end up feeling as though they have fully withdrawn within a couple weeks after discontinuing. If you still don’t feel better after a couple weeks, just know that everyone reacts differently to withdrawal. Some people may experience symptoms for a longer time than others upon discontinuation. Do your best to stay productive, engage in healthy habits, and eventually you will feel fully recovered from the withdrawal period.
If you have been through Topamax withdrawal and/or are currently in the process of withdrawing, feel free to share your experience in the comments section below. Sharing your experience may prove to be very helpful to another person going through the same thing as you.
I have been on topamax over 15 years. After experiencing major hair loss, OA, and now kidney disease I am taking myself off. I have been on 300 mg per day. First dose 100mg only noticed eye twitch sometimes. First of the week went down again 50mg some anger still ok.
Waiting a few more weeks to drop the next 25mg. Will continue every few weeks. I am at stage three CKD. GFR was at 46 now at 57. I hope this will help y’all to keep up with your blood work! LJ
I took Topamax for three weeks (25mg and then to 50mg) for severe migraine. I wish my neurologist had talked to me about the mental health risks of this drug. Within about a week of starting it I began to be severely depressed and wishing I was dead.
My personality changed completely and I began to be paranoid about people. I was going to my car in my lunch break to sob and I felt like I was falling apart. When I spoke to my doctor, he had me come off it cold turkey. The first day or two were amazing.
I could articulate my thoughts, feel joy and actually smile again. I was potentially even more elated and high than before I had started the drug, which made me wary. Day three, I had a mega crash. Back to suicidal thoughts and sobbing.
There were also a couple of strong migraines that joined the withdrawal party. It was a hideous experience and I’ll never touch the drug again. It’s hard enough dealing with migraines – but if you lose your mind in the process, you may lose yourself altogether.
I have been weaned off topiramate gradually over the past month or so. Unfortunately I have had a huge breakout of acne on my back & chest & face. This is not normal for me. I have an anxiety disorder regardless, but coming off this drug I’m experiencing a lot more anxiety than when I was on it.
I am also taking Lamotrigine. Both drugs were to control my seizures. Topiramate has also cost me my lower left peripheral vision in my left eye. The ophthalmologist has confirmed I will never get that back. About to become a science experiment again next week when seeing the neurologist to be put on another drug…
I was put on Topiramate for borderline personality disorder and binge eating disorder. At 2 months in I starting breathing ammonia out of my lungs… literally. This was AFTER having had suicidal thoughts, worsening anxiety and insomnia.
I went to the ER and asked them to check my ammonia levels on a hunch and it was through the roof. Topiramate causes high ammonia. If you are having memory issues, fatigue, etc., be aware that those are side effects of high ammonia levels. Now I’ve been off of it for 2 weeks after tapering down slowly and am still having high levels.
I’m seeing my GI doctor this week because now there is something wrong with my liver. Be aware!!! Topiramate is nasty stuff. I’ve never been suicidal and my doctor told me it wasn’t the med. My moods and my mind are so much better now that I’m off of it.
I was only on Topamax for about 2 weeks. I had the awful metallic burning taste, loss of sense of smell, seeing things, hearing things… it was a nightmare! Of course I’m that 1%. My issue is I still can’t smell anything.
It’s been 2 weeks since I tapered off, and everything else seems back to normal. I used to have super smelling ability, like smelling things no one else could. Now all my oils, perfumes, candles, wax melts, foods, body odor, EVERYTHING is gone. Has anyone else had this problem?
I was on 200mg a day for bulimia. I also have borderline personality disorder and anxiety. I was also on 2 other medications for depression and anxiety. At a point I felt nothing was helping with the anxiety and BPD so my GP and I discussed, stopping the other 2 meds and increasing the Topiramate to 400mg as its supposed to help with mood disorders and BPD.
Well I went from bad to worse. I became very depressed, suicidal and experienced major anxiety. My doctor and therapist were not listening to me, so I researched Topiramate and read a lot about it triggering depression and suicidal thoughts. I went cold turkey.
The first 3 days I felt nothing, than bam – I crashed. Total exhaustion and trouble breathing. Five days later breathing has got better, but legs are so weak and can’t walk far. My GP says it’s not withdrawal as these are not the symptoms. I had a full check from the doctor and all bloods done.
Nothing to be found. My doctor and therapist think my problems are just total exhaustion after all the panic, anxiety, depression and suicidal thoughts. Topiramate did help me lose some weight, and I didn’t have my usual headaches, but the depression, suicidal thoughts and anxiety were just so bad.
Topiramate is probably the worst drug you can take for BPD. It gave me the worst depression episode of my life, interfered with my psychotropic meds and made me severely suicidal. When I finally stopped taking it my mood disorder improved to the point that I am now functional.
I tapered off Topiramate slowly over about a month. Withdrawal was not too bad. It is a dangerous drug. Doctors should be more aware of the suicidal side effects and help sufferers taper off. None of my doctors connected the onset of major depression, suicidal ideation and Topiramate. I am lucky to be alive.
Hello my daughter is bipolar and she was on 200 mg topiramate for 4 months for migraine and weight reduction. She was tapered to zero in 2 months because of memory problems, lethargy, etc. During withdrawal she experienced involuntary movement of jaw, tongue, face called Extrapyramidal Symptoms (plus panic attacks, depression, insomnia).
Until today – one month and a half after the complete withdrawal – she has these symptoms. Did anybody experience these involuntary movements and did they go away? What do you take to help these symptoms? Any Vitamins?
I went up to 200mg of Topamax in May 2018… at 175mg then at 200mg I got diarrhea. At first I thought I had ate something bad. So I started going off of it. Last week was 1st full week of June.
As of July 8th I’m still having sweats, insomnia, fatigue and losing weight… down 12lbs from end of April. Not going to take this medication again!!!
I’ve been taking Topamax 200mg for more years than I can correctly say, so I’ll go with over 15 years. I’ve never really had any issues that I can REMEMBER! However, here lately I’ve just started putting 2 and 2 together and after reading these comments I’m incredibly thankful.
I totally believe that the meds helped my headaches for all those years. I have 2 pituitary tumors, but the side effects now don’t outweigh them. All I’m having issues with is this “brain fog”, but it’s horrendous. I say something and literally 2 minutes later I have no recall.
I’m not even 50, my husband tells me I forget things all the time. My Neurologist NEVER asked me if I was having any issues with this at all. It’s like she was waiting for me to tell her, “Hey, I can’t remember my name, but life is great!”
I’m scared of what it’ll be like coming off of it, but I’m done with it if there is a chance my head will clear up. Has anyone else had this happen after they quit taking it, and the withdraw passed, they became more of sound mind? WOW!
I’m just amazed at all the people that have had the same experiences as myself. Thank you for the enlightenment.
I too have been on Topamax for approximately 13 years at 300 mg. It was prescribed for my seizures. I always worried that I was having early onset Alzheimer’s. I wanted to yell out to my daughter to tell her not to run around the wet area in the pool.
I called out “Jenny”! No big deal except her name is Katelyn. I am always at a loss for words. I know the word – I just can’t get it from my head to my mouth. It’s so scary! Confusion, the inability to concentrate. I miss reading a book in 3 days. Now I can’t focus on a chapter.
The worst part, I have always been physically fit… I had a set back with a couple accidents but nothing affecting my hips. I was diagnosed with Osteoporosis at 46! Whhhat? Now at 51, I have severe OA in left hip and moderate in right hip.
I did not give it a thought regarding Topomax till I read the most updated side effects which no says that it causes brittle bones and Osteoporosis! My memory issues and other cognitive issues started around the early stages of taking the drug and progressed.
I’m down to 250mg and starting 200mg tonight. I’m very nervous. I sense myself a little agitated and cry easily. Insomnia has already been a problem so I will have to see if it gets worse. Side note: the Topamax never completely cured my seizures!
Seriously it “causes” arthritis? I have it all over my body now! I too have been taking it for years and do and feel much like you. Words are lost, names I should know will not come through. My husband says I am the smartest person he knows but I feel so stupid most days… Lost even.
I started taking it because I have nerve damage in my legs, but I don’t even see anyone else using it for that. My legs are killing me so it isn’t working!
If you have nerve damage in your legs Topamax is not going to help that. I have pain in my feet my hands my elbows and it’s due to nerve damage and I take gabapentin and that helps. I checked Topamax that does not help the nerve pain.
Rhonda, Your experience is a mirror image of mine, it literally brought tears to my eyes! This drug is the Worst!!! ? It also affected my eyesight!
Dear Kelly, I have taken topiramate since 2004 for migraines and seizures. I initially started on 100mg in the AM and 100mg in the PM. In the beginning of withdrawing due to the fog and osteoporosis I took away 50mg and had real tough withdrawals of all kinds.
I learned to go down slower with 25mg. The clarity was amazing after the first 50mg. The next 25mg were tough as I lost my Dad and it came in too clear along with the depression from loss and drug withdrawal.
Once all this clears I’m sure we will see how much easier life can be without working against meds. Best of luck with your new life. Happy Trails, Karen
I have been on Topamax for Migraines since 2005. It has been great in terms of migraine prevention but I have been having increasing difficulty in finding my words in conversation, which is a big problem for someone who talks for a living. I take 200 mg in the morning and 200 mg at night.
I just started to taper 175mg at night and 200 in the morning, next week going to 175 mg both times. Not looking forward to the side effects – they were rough going up and seems like they will be rough going down too… but I can’t be mixing up words at my job – it’s been embarrassing.
Hello! I was only taking 25MG for about 3 weeks (I was prescribed it for 6 months) but I never took it diligently until about 3 weeks ago when my headaches came back with vengeance per direction of my doctor.
Fast forward to this past Monday, I got dizzy, lightheaded and the tingling in my hands was jumping from one side to the other rather quickly. I was confused because I only take the pill at night. Not knowing if this was a side effect of the medication or something more, I went to the ER.
They said everything was clear. I went to follow up with my doctor the next day and he told me to quit the medication for a week and report back because the numbness factor he didn’t love.
Here I am (2) full days off the medication and I find myself shaking, being foggy and the pins and needles in my legs and hands is UNREAL. Is this common? HELP please I cannot take this.
I have been off Topamax for about a month and am still feeling the side effect of shaking. It is horrible. Makes me feel like my head is shaking off my body. People can’t see me shaking – but I can feel the shakes.
Hi. I also took Topamax for tremors for about 9 years. My highest dosage was 200 mg twice a day. Like everyone, I also had brain fog so I decided to slowly get off Topamax.
It’s been at least 6 weeks and my tremors are returning very furiously. Luckily I had no withdrawals or symptoms until now. I just saw my neurologist this past week, but the shaking has increased terribly since seeing her.
Pins and needles is normal when you are first starting Topamax. It will eventually go away, or at least it did for me. The brain fog did as well. The only side effect, which I have not seen mentioned here that I still had to contend with, after being on it for about 15+ years, was oxalate kidney stones.
For this reason, I have chosen to taper off. Thankfully, the tapering has gone fairly smoothly. My only REAL issue has been that I have gained weight. More than I care to deal with. I haven’t really noticed increased appetite, so I am assuming that it has changed my metabolism.
I have been taking 25 mg for 2 weeks at night as well started getting sick – puking, feeling like jello all inside, etc. So I quit cold turkey to see if it’s the med. That was 4 days ago – still all the same symptoms. This med is crazy dangerous! I can’t take much more of feeling like this, I truly feel like I’m dying!
Thanks for your article on Topiramate withdrawal. My nephrologist suggested that I stop taking Topiramate but didn’t give me much of a guideline for how quickly/slowly to taper off. I mentioned the tapering off regime I was using to my neurologist and she didn’t object to it.
She is giving me nerve blocks and medical cannabis to replace the Topiramate. I’ve been on Topiramate for 13 years for trigeminal neuralgia. I take 225mg per day in three divided doses of 75mg. I went down to 50mg 3 times a day for a month, then I went to 25mg 3 times a day.
I didn’t notice a problem in the first month although in hindsight I realize that I was an emotional mess. Since I went down to 25 mg 3 times per day I have been dizzy, shaky, nauseous, irritable (okay, more like REALLY angry) and my blood pressure keeps dropping suddenly. I’m going to try adding 25mg back in twice a day, and call my doc on Monday.
On the plus side my kidney pain has cleared up!
Hi Anne. I’m having a rough time with withdrawal and I was wondering if you could explain more about how it affected your kidney?
I have been on Topamax 100 mg split into two doses daily for probably three or four years now. I am on it for migraine symptoms without the headache-electrical zapping in my head and neck when I move my head or eyes, seeing flashes, pupils being different sizes.
I inadvertently stopped cold turkey Monday due to running out and the pharmacy and doctor office not coordinating my refill. I now have the medicine (it is Saturday) and was planning to take a half dose for several days. Now I’m not sure if it will be to wean off or get back on.
I feel awful. I just took a nap for over four hours with vivid dreams, I am extremely anxious. I have anxiety which is controlled until today! I have no appetite and am worried if I eat I’ll get sick (vomiting is a panic trigger for me. This is all tied up with my anxiety being so high!).
The zapping is back, I’m dizzy, zero interest (and ability?) to do my normal activities. I am an interpreter and I worked today and had to hyper concentrate to do a basic job. It’s the weekend and not an emergency, so no doctor to reach out to. Feedback would be nice.
On a different note, my 14 year old has daily migraines and meds aren’t helping. We had her right daith pierced a month ago. That side of her head has had ZERO migraine pain since the piercing. She is excited to get the second done a year from the first. Best wishes to all!!
My original dosage was 50mg daily. I was prescribed Topamax for migraines back in 2010. It seemed to work pretty well. I decided I wanted to have a baby recently and went over my list of medications. Every doctor and specialist I talked to said I needed to stop the Topamax. It has the potential to cause cleft palettes and other malformations in Baby.
I tapered from 50mg to 25mg a month ago. I did not notice any major changes in migraine activity. I had one aura migraine which lasted 30 min and had no after effects. So mild. I guess weight gain is part of this. I gained 7pounds and I didn’t know why. Now I do. Mystery solved.
Two days ago I tapered from 25mg to 0mg. It seemed like I was doing fine. Then whammo! A migraine hit today. I’m hydrating to get it to go away. It’s down to a three after 2 hours of a 6. I’m hoping I don’t gain more weight, but I’ll deal with it as it comes.
I’m not experiencing any of the other symptoms of withdrawal other than nausea, but I always feel nauseous above a certain level of pain. And possible fatigue, but that is hard to gauge since I have Fibromyalgia. I am fastidious with my nutrition, my exercise regiment, and sleep cycle.
Hopefully, this is just a rebound headache and I can finally flush this med out of my system. I’m very glad I started this process and very grateful for information like this. It has put my mind at ease.
I quit cold turkey on 5/19/18. At first the major depression went away so I thought I was fine. It’s been a week now, and things are NOT fine.
I actually still feel depressed, although not nearly as much as I did when I was on Topamax, but I have had episodes of severe crying (even in dreams), sense of sadness, incredible inability to stay out of my head-constantly wandering thoughts, esp about past negative experiences, to just about anything-imaginary conversations, i.e. just stuck in my thought-world, really hard to concentrate on a movie or read.
Unfortunately, I live alone, have no people who phone, text or visit regularly to if ever. As pathetic as that is to admit, so, of course that doesn’t help. Medium to medium (+) irritability. And a weird feeling in my gut, anxious, worrying that I MIGHT have a panic attack – especially when I lay down to go to sleep.
Not tired enough, and oddly enough, not hungry like I was when I was on the stuff (opposite reaction to typical reported withdrawal symptoms) and some nausea. And when I pray the rosary I do not feel anything, like I usually would. Best wishes to all of us, ??? Gen*
Can I ask you why you quit cold turkey? What dose were you on and why were you taking it? I’m tapering off it for migraines. It is not a good idea to not do a taper with topamax. I was only on 150 mg in divided doses. Now tapered down to 50 mg right now. Tapering down 25 mg a week.
I will be done in 2 weeks. I have to say during the time I took topamax I cried all the time. Changed my personality. Had to get off it. I hope all goes well with you. It will take your brain a while to catch up. You might still be able to do a taper though which I recommend.
I was taking 100mg once a day for headaches. It was causing brain fog and problems with word retrieval so I stopped. It has been 4 days and I feel better but today I had a migraine. I am thinking it is too late to go back and try tapering off. I have some 25mg left. May try one of those for the next week.
I was on it for mood swings and anxiety. It caused me suicidal thoughts and more anxiety so I went off it. I have been crippled with exhaustion breathlessness and dizziness since I stopped.
My doctor has done all test and can only come up with hyperventilating through anxiety and has insisted I go back on it. I have gone back on it against my own better judgement. I think my symptoms are not what my doctor says they are.
I think they are side effects from thyroid medication I have just recently started but he says not. I’m tired of going to him and getting nowhere.
I’m so thankful I found your comment on this board. I have been taking Topamax for nearly a year, because NOTHING else was working on its own. I’ve been on Fioricet for almost 8yrs now, and it did nothing on its own, so my doctor had me try Topamax with it.
I felt after a period of time, it stopped working as well, and I went back to having daily headaches/migraines. I stopped Topamax cold turkey, because my doctor “forgot” to refill my prescription during my last appointment and is on vacation. ?♀️ Over the last week, I’ve been experiencing the EXACT SAME symptoms as you, right down to the weird feelings.
It took me a while to figure out while I was constantly nauseous, having mood swings ALL the time, feeling a lot more emotional, very easily irritated/angered, experiencing an “off” feeling all day, having weird dreams, thinking of upsetting past situations, waking up because I experience anxiety, as well as everything else you mentioned in your comment.
As crappy as this feeling is, it comforting to know I haven’t completely lost my mind. ? I hope these symptoms go away soon for you.
Hello. I am experiencing the same side effects coming off Topamax as Gen. Thanks for sharing. I feel better knowing this is withdrawal from the medication. It will pass has become my motto, God is here even when I feel nothing spiritual. Peace to all.
I’ve been suffering continuous Migraine headaches for the best part of 50 odd years and almost in a daily fashion too. I’ve tried everything and up until say a little over 2 weeks back was on 100mg of Topamax daily plus the Imigran/Tramal/Paracetamol and the 3 monthly Botox injections thrown in too.
So I was virtually a walking drug store. Roughly about 3 weeks back nothing was working. I decided not to go back next month for the Botox as it just wasn’t working and I was getting the Migraines daily and taking the Imigran/Tramal and Paracetamol and it wasn’t working and the headaches were just getting worse.
My wife knew this woman at the local store who also suffered from Migraines and she asked about my headaches. Wife just said – “Nothing changed!… He always has them.” Well that part was true so she is used to it. I must mention too that the Botox and all the other meds served their purpose and worked fine until your body just get plain used to it. After that you have to up the doses just to manage the daily grind.
Back to the story. The woman mentioned she had been to a body piercer who did – Daith Piercing – for Migraine headache control. Just google and it will pop up and for those who don’t know just a section of the ear where the piercer does the work. I didn’t fool about as I get my Migraines on both sides of my head. Only ever one side at a time with severe eye ache.
Either left eye aching and so on and if it switches to the right… I know it’s not going to be a picnic and I am in some serious pain. Anyway I thought I had nothing to lose and with Migraines – you’ll try anything. Botox is roughly 30 odd needles jabbed throughout your head so surely I could handle one needle and a barb in each ear.
Well the experience I think was no worse than Botox. Just lay on the Piercer’s table and turn your face to the left and right and I won’t say I didn’t feel it BUT it was quick! In preparation I’d already taken a Tramal prior to going in so actually left with a slight headache and another Migraine the following day. The next day I got up NOTHING! No headache and I felt pretty good.
Prior to this I had not had a Migraine free day for months so it was a shock. Actually went all day headache free. Next day No headache and I was outside walking around without sunglasses on… Had not done that for years. Everyone knows how light affects your eyes and how quick a headache can follow.
Now I was starting to get a bit worried I’d been taking Imigran/Tramal/ Topamax daily and consisted of 1/2 tablet Imigran as 2 years earlier I had bad chest pains for actually taking 2 Imigran per day. So 1/2 Imigran/3 Tramal/100 mg Topamax and 8 Paracetamol daily for the past several months.
After that I had another 3 perfect days with no sign of headaches but I was still taking the daily medication. More like I just needed a fix. I knew exactly when I took the doses and I still took them for no reason at all. I started thinking… maybe I could get off this stuff while I have the Opportunity OR reduce the medication. So that’s exactly what I did.
About the 3rd May 018 it will be 3 weeks since the piercings and my medication has dropped to NO IMIGRAN DAILY – 12.5 MG TOPAMAX OR A 25MG TABLET SPLIT – ONE 1/2 TRAMAL AND 4 PARACETAMOL DAILY. Within a week I should be off the Tramal and Topamax fully. I’ve been on Tramadol for 15 years too. So I am no newbie here!
In the past 3 weeks I’ve had a couple of minor headaches but nothing compared to the headaches I had prior to the piercings. I have absolutely no regrets that I had them done and it worked and worked well. Sure it’s not going to wipe them out totally but and I say but it’s really worth the effort to seek out some-one who knows how to do it.
Even I had doubts that a needle piercing in the cartilage of the ear would stop a Migraine… but it worked and my huge reduction in the meds proved it. Naturally I couldn’t go straight cold turkey on the meds for fear of withdrawal symptoms and bad side effects. Although I have suffered one slight dizzy bought a few days back and probably Topamax related.
So if you have not thought of this or just stumbled across it like I did – it might just be worth your trouble to seek it out.Plus I really hated it when you I went to Dr after Dr and the specialists etc and they put you on to meds etc and so far I have not meet a Dr yet who has suffered from migraines… and they tell you what works best! LOL.
Now if you ask me – well how bad were your migraine headaches? They were bad enough to effect me to be classified as medically unfit for work! Too late to do anything about that now as that was many years ago BUT I think someone else may get some benefit from what I have said.
I didn’t bother listing all the meds I’ve been on but before any-one is classed as medically unfit for work – you certainly get a chance to try a very wide range of drugs. I had quite a few and like all drugs were only good for a short time and the older you get or the longer you are on them… the less effective they are!
So do yourself a favor and look into what I said. I am sure relief is heading your way. You may thank me later. Just like I did to the woman who told my wife.
So glad I found this…I’ve been on 100mg of Topamax for almost 19 years for chronic migraines. Just in the last 6 months have I added Botox to the mix and it has worked for the most part (unless I have to use a Triptan).
Topamax has caused me to stopped sweating completely; therefore, I overheat very easily. Most times I’m at a loss for words/brain fog, have tremors, and the list goes on.
I’m terrified of withdrawals since being on this medication for so many years. I am seriously considering daith piercing as well!
I was on 150 mg daily in divided dosages of topamax for migraines. I was on it less than a year. But because of the forgetfulness I tapered off. It also worked at first then didn’t work.
I wasn’t increasing my dose. I’m a nurse and can not have brain fog/forgetfulness. I tapered down 25 mg a week but used CBD hemp oil the whole time. This took away the tremors and anxiety. It also takes away the pain. I highly recommend it.
Thank you SO much. I have been thinking about having a Daith piercing for some time now and I also have been on Topiramate for many years, Tramadol, etc. Have been laid off work due to ill health. Still having the damn migraines almost each and every day.
Reading your post has made me smile, yes smile. I am off to book that double piercing tomorrow. Like you, mine is mainly above my left eye, but can move to my right. Best wishes from England.
I stopped Topamax 4 days ago cold turkey, 50 mg. in the morning and the same at night. I also take 400 mg of Dilantin and any where from 3-5 mg. of Ativan for my seizures and anxiety. I know it takes time to get out of my system but I think I had more side effects from Topamax than withdrawal symptoms because am finding that certain memories I had are coming back to me one by one.
I do get shaky but, if I eat something light when I feel the shakes, it normally goes away. My stomach does hurt in the morning but it did that before stopping the Topamax. I’ve always had issues with my tummy and my doctors have never figured it out so, I live with it.
Warm ginger tea calms it, sometimes, as well as the CBD oils. (they taste nasty) I have a very sensitive stomach so there are times that… what goes in might come back out. I didn’t even plan to stop taking Topamax so, I hope it works out for the better (obviously). The reason I quit taking it was due to forgetting doses and not feeling anything from it.
I took the brand name Topamax because Topiramate is not the same. Doctors will tell you it’s the same thing so they can write the prescription. The pharmacist (which I trust more than my general practitioner, I don’t have a neurologist because he retired) I feel, knows way more about these drugs than doctors do.
Where I live anyway. The pharmacist told me that there is a 15% difference between the two drugs, generic and brand name. I paid about 14 dollars for generic and brand is slightly over $800…for 30 pills! I am on Johnson & Johnson patient assistance through my doctor’s office but when my Topamax needs a refill my doc wants to see me every time I need a one. (She gives me 2 refills at once).
My doctor is always full, she never has an appointment open for 2-3 months. I called and made an appointment ahead of time and a week later the front desk lady called me back and to tell me that appointment won’t work for my doc because she’s going on vacation! She told me to call back in April (this was at the beginning of March by the way) to make another appointment because she didn’t know when my doc would be back!!
I told her to just set one for the end of April because my memory to refill meds and make doctors appointments is horrible and she knows this. The lady at the desk says, just put a reminder on your fridge or somewhere so you remember. Well I did what she said even though I knew I was going to forget.
I saw the note a couple weeks later so, I got reminded to call! She still didn’t have anything open until the end of May!! I said I already had an appointment set and you took it from me. Now I have to wait until my appointment to get Topamax? No, thanks. I’m done with it.
In the next couple days…weeks…whatever it may turn out to be, I will deal with the withdrawals and when I finally do go back in to see her, I’m gonna tell her I quite Topamax without her lazy ass helping me to taper. Why do I only get 2-3 refills of Topamax and Ativan but through patient assistance, they give me 6 bottles of Dilantin at the same time?
Every one of those drugs is to treat seizures and anxiety. I get an occasional migraine that can be quite debilitating and that is what the Topamax is used for. I think I will go natural for the migraines and stick to the drugs that my doctor refills on time. I feel a slight headache coming on so, I am going to go take care of that before it gets too bad.
While I’m happy I found this board, I feel more confused than ever about whether I should decrease or end my relationship with this med. I take topamax for Migraines that I’ve had since early childhood. I’ve been taking 200mg (once daily) of Topamax for about 15 years.
I’m not sure if the parts of my life that are blanks because of the migraines are worse than the memory loss and cognitive issues I’ve had since being on the Topamax. I live in fear of the thought of the headaches returning in full, frequent force like they were before this medication.
But then there are the days I forget my address, or how to get to everyday places. It’s the worst. Then there is the joint and muscle pain. It’s becoming more and more severe. Almost unbearable. Yet is anything as bad as a debilitating migraine?
My vision is often blurry and I am seeing spots. I’ve become accustomed to the tingling and the numbness. I’ve developed a severe case of Raynaud’s Syndrome too.
Does your memory function return, your pain diminish, your eyesight improve etc., once you stop taking or decrease your dosage? Or do you only get your migraines back along with some scary side effects? :(
I have chronic migraines (18-25 per month) and after trying every other medication regiment, my doctor gave me Topamax, hoping it would be the “miracle” drug for me. I started out on 25 mg. twice a day, eventually taking 100 mg. twice day – just 200 mg. per day. From the very beginning, the nausea was overwhelming, but my doctor assured me it would not last.
The nausea never stopped for me and increased with every dose change. I did not get any migraine reduction until I hit the 200 mg. per day dose. Unfortunately, the nausea became so severe, I was dry-heaving a few times per day. Along with this, I developed extreme muscle and joint pain.
I decided to stop the Topamax, dropping 50 mg. every three days. I thought since I was only on it for a few months, this would work for me. I have been completely off the drug for 10 days now and withdrawal has been horrible. Severe nausea, dry heaves every morning, migraines every day, and feeling so unwell I can hardly function.
I probably, in hindsight, should have tapered off the Topamax much more slowly. My neurologist labeled me “side effect” sensitive, but I have never experienced this severe side effects with migraine medications before.
I have decided to go back to just living with my chronic migraine and using my abortive as needed. Yes, it impacts my life, but it doesn’t make me feel extremely unwell when I don’t have a migraine. Hoping to be back to my “normal” soon.
I stopped taking the Topiramate that was prescribed for me for seizures. I first eliminated my nightly dose for a two week period and then eliminated my daytime dose. I haven’t experienced any horrible side effects. The medication on the other hand caused me to feel depressed and angry.
Hi, I’ve been on 50mg/day (for migraines) for 4 months and had hair loss, blurred vision, a more general deterioration of my vision, plus memory and cognitive problems which I hoped were transient. I’ve also had fairly bad muscular and joint pain but it was initially more like a flare-up of previously injuries, so I didn’t make the connection.
The final straw was the lower back pain. I initially attributed it to a persistent chest infection/associated coughing, but two months later and the pain is so bad I cannot move from sitting to standing (or vice-versa) without significant pain. I’ve been taking 6-8th hourly ibuprofen for months, just to cope with the other generalised muscle and joint pain, but nothing really touches the sides for the back pain.
I have a young child, and went on the drug to try and improve our quality of life (migraines were sucking away days of my life at a time) but this is no better, just different. I’ve had 30 years of functioning with migraine pain and at this stage I prefer that.
I was gonna go cold turkey but having read others’ comments, feel I should maybe taper by cutting tablets in half… Thanks everyone for sharing your experiences.
Since going off Topamax, my blood pressure has gone through the roof. I never had a problem before. Has anyone else experienced this?
Yes. I’ve been taking Topamax 50mg daily for mild bipolar disorder. I weaned myself down to 25mg a day for a week then stopped completely. Within 3 days I began to experience extremely high blood pressure 195/110. This was accompanied with anxiety, chest pain, dizziness and nausea.
I went to the ER thinking I was having a heart attack. After 24 hours I was discharged when all tests were normal. The next day I still had chest discomfort and anxiety, so I decided to take a 25mg Topamax pill.
Within 1 hour the discomfort disappeared. I am convinced it was the Topamax withdrawal that caused this to happen.
Topamax caused me to become suicidal, depressed, anxious and overall non-functional. I was on 50mg for 2.5 years for migraine and cluster headaches. Most of that time I was a psychological mess. I figured it out and discussed stopping the drug with my doctor. I went to 25mg for two weeks and alternate night dosing for one week.
I am doing better even though my anxiety increased a bit. I take Latuda for drug resistant depression. Latuda also has terrible side effects. I am going to taper off Latuda next. I am beginning to think better and am not suicidal. I think my depression will improve when I can think clearly and my memory is improved.
Hello, I have taken topamax 200 mg nightly for 15 years. I also was given Depakote about 6 years ago. At the time I did not realize how much of a fog I was in on a daily basis and how constantly tired I was. I started to have a tremor in my right hand which the doc noted it to be a side effect of the Depakote.
The tremor became so embarrassing and uncontrollable. I am going through menopause and my migraines were always associated with hormones. I figured why not titrate and just see what happens. It has taken me 3 months and I am now down to 1/2 a tablet of each every other night. The first titration was the worse, sweating, insomnia, snapping, etc.
After that it has not been too bad. However, the past week I have been having migraines on the days which I do not take the meds. I do have a rescue medication which I take and that relieves the headache very quickly.
I am determined not to go back on these medications as I have started to realize that I have more energy, less aches and pains, clearer thinking, and the tremor is gone. I will be at my doc next to to report in. At this point in my life I feel that I would rather sleep the migraine out than lose years off my life like I have in the past.
Jacqueline – Glad you are seeing some changes. Was wondering how long did it take you to realize the brain fog itself was lifting? I am about to take a 4 hour test and would rather suffer migraines until then rather than forget what I need to know for the test.
After I did the first taper, I noticed I was extremely focused and starting writing more often. I felt like my old self again. :)
I did not know about the psychological effects. No one told me. It makes me wonder if that was a major contributor to my symptoms. Something to think about.
Hi – I’ve been on 200mg for 12 years for migraines. I am dying to get off of it but am really afraid. I’m in NYC. I don’t have a neurologist and want to get this started ASAP.
I didn’t think anyone had been on it for as long as me and on as high of a dose. I’m so relieved – does anyone have any suggestions on how to begin and if in NY – any docs?
I was on 200 mg of topiramate daily for about 4 & 1/2 years in the hope it would help with chronic nerve pain in my head/face. I was also on oxys because of the pain. I had a spinal cord stimulator put in (surgical) to combat the pain with excellent results… and then got switched off my oxys, which worked week and which I never abused, to Xtampza because the insurance company wants to be less responsible for the opioid crisis.
Bad, bad results, constant head pressure, pounding headaches constantly… I went completely off the Xtampza/oxys with understandable symptoms, so thot, hey, let’s lose the topiramate, too. BIG ISSUES. Joint pain, headaches from hell (I never really have had headaches before, and don’t know if they’re from topiramate or residual from the Xtampza, which can constrict the blood vessels in the brain, I found out later), general aches and pains, malaise…
I had to go back on low doses of oxys to even be able to titrate off topiramate, which I did relatively fast, 25 mg at a time over about 3 weeks. Still struggling mightily with side effects, 6 weeks later. If you do decide to do this, given the length of time you’ve been on it, I recommend a very slow titration, 25 mg each time, every 2 to 3 weeks.
This stuff is NOT good for you. Blessings to you in your quest to be med free… and perhaps check out that cartilage piercing option that was mentioned in one of the top posts to help with migraines. Would be worth a try.
I am so glad I found this website. It has been so helpful reading your comments and knowing that I am not alone. I was hit in the head with a baseball in 1992 completely knocked out. I was carried to the hospital, had lots of test ran. Everything showed up OK, just monitored for a concussion.
Two years later started having seizures. I was put on topamax 400 mg. a day and klonopin. I am now down to 200 mg. a day and in the middle of cold turkey with my klonopin. After I get through with my withdrawals, I will start slowly getting off of my topamax. I would never recommend this crazy medication to anyone.
For whatever reason, physicians do not tell you everything about this medicine. I looked it up before I took it, but this looked better than some of the other drugs offered to me. I have tried to come off of it twice but couldn’t do it. I will try some of the ways that you guys are doing it. Thanks for the information everyone posted.
So sorry to hear that a concussion also caused your seizures. This also happened to me at nine years old. I’m still withdrawing from Topamax and can’t believe the recall I now have. Please be very careful with klonopin. I was on very little, but prior to surgery was taken off it. It can be a very hard withdrawal. Best wishes, Karen
I’ve been on topamax for many years 250mg for migraines. When I started having difficulty with aching hips at night and sore legs the doctor put me on Arthrotec a very strong NSAID. Plus I was weaning off cell a for anxiety – I decided to go cold turkey because I was taking so many meds. I stopped celexa and topamax at the same time.
Withdrawal symptoms include a general foggy in the head feeling. Cold and hot sweats day and night. It’s been 7 days and I’m hoping in another 7 days that I’ll be ok.
Hello Shannon. I have been on Topamax for at least 7 years now, 100mg per day, and I have begun to have hip and leg joint pain as well. Although the medication has been very successful at stopping migraines the last 7-8 years, I am worried about eventual RA.
Did your hip/joint pain subside after stopping the medication? I have begun weaning by 25mg each week or so, and I am down to 25mg already this week. However, I am tired, have gained about five pounds, and feel somewhat depressed. I am hoping this is all temporary. Just wondering.
I have been on Topamax for 12-14 years- 100 mg QD for migraines. It was truly a wonder drug for me. The migraines and cluster headaches were unbearable. My neurologist thought that they were hormonally related and at some point I would be able to come off Topamax. I have been very hesitant because it works so well but since I have now fully embraced Menopause, now is the time.
I’m down to 50 mg QD and next week will start 25 mg. The only side effects that I have really experienced have been the muscle and joint achiness and the crazy excessive sweating. This should hopefully disappear but Topamax was a drug for me for my migraines. Unfortunately didn’t lose any weight either!
I am slowly weaning off 200 mg of Topamax after 2004. The first 25mg were the hardest as I did too much at once. 10 mg every 6 weeks is the way to go. My ability to think now is amazing and bring back words. Hopefully no damage has been done to our eyesight from this dangerous drug. Best wishes to all.
Congratulations. I have been on it since 1994. I have just now come off of Klonopin cold turkey. So hard. I have looked up how to get off this crazy medicine. I hope and pray I can do it. I will do it slow like you. I wish you well.
I am so grateful that I found this website!! I am slowly weaning off 150 mg. of Topamax per day after being on the drug for 2-1/2 years. I just tapered down to 100 mg. over the past two weeks and am reducing down another 25 mg. starting this week. So far I am doing pretty well.
The drug worked great at first and completely eliminated my migraines but recently they are creeping back in here and there even at the 150 mg. The other side effects of the drug I can not longer bare. I’m fatigued all the time and I do not have good mental clarity!!
I’m no longer the happy person I used to be – I have high anxiety!! I pray that I can successfully get off this drug with no long term effects. Good luck to everyone trying to do the same!!
I was in 200mg for nearly 10 years for migraines. So far I’m down to 100mg taking myself off and the side effects are invading my personal and professional life. Going without sleep, being anxious, irritable, outbursts of anger, and sweating just seems to make all that worse. I sought out help from a nutritionist who put me on a clean diet, detox tea, activated charcoal, a vitamin B complex, magnesium, fish oil w/ D and CBD on top of my regular multivitamin.
I noticed it take the edge off the symptoms. It was a bit costly but I have been on Topamax a decade and fully intend to get off in one try. I have had a hysterectomy last year and been put on estrogen. They believe now that was the cause of my migraine and other issues. The symptoms I described did not start until the day I cut my Topamax dose. My hysterectomy was a blessing and a success.
I’ve been on Topamax for about 10 years I moved to another state and it’s hard to find a doctor. I’ve been without my medication for about five days and I’m starting to feel really bad. I’m getting headaches I’m not eating well, so I’m gonna see if I can just wean myself off.
I take 100 mg in the morning and 100 mg at night. Right now it’s not too bad I mean I can barely remember stuff and I’m always shaky and nervous but let’s see will happen because I don’t want to get worse than what it is. I had no idea this medication could do all these things to you.
I wonder how you feel right now. I’m currently in the hospital for video monitoring to remove my Topamax. Today is my first day without Topamax. But what worries me is they removed my dose, which is 250 mg, during a period of 4 days. I couldn’t sleep tonight and am feeling nauseous. Did your symptoms get worse?
I found a doctor and got the medication 3 weeks ago. I’m only taking it 3x weekly. I will get myself off.
I am now having small tics in my upper lip and headaches, but they go away with Tylenol. They are not too frequent but a bit annoying. I’m done. My mental clarity is somewhat returning.
Since my second posting I have stopped the medication completely. I stopped having the withdrawal headaches, however, I shake uncontrollably at the most inconvenient times and I have a small facial tick in my bottom lip. My memory is still horrendous, hoping that it gets better though.
My 67 y/o husband took Topamax 100 mg a day for 2 months in conjunction with Phentermine for weight loss. 2 weeks after starting he began loosing his words , asking the same question 2-3 times during a conversation and loosing small tracts of time. Plus anxiety and panic attacks are daily.
His MD just began a taper down of 50mg daily for a week then 50 mg every other day for a week then stop. My question is has anyone else suffered the memory loss with this med and how long after withdrawal before these symptoms stop? So scared and concerned for my sweetie.
Yes. I’ve been taking topamax and phentermine for several months- 6 months ago I began with phentermine, weight loss was slow. By 3rd month topamax was added… in total I lost 30 pounds. However, I ended up in a drug-induced manic state irritable and angry, so doctor decreased phentermine, increased topamax.
At 100mg topamax I can’t function. Work productivity I severely low. Sometimes It takes me hours to write an intelligible email, type up reports or do anything at a higher level of cognitive ability. I’m dosing off, trying to find my words at this moment.
I’m tapering myself off before I lose my job. I love what I do and it’s not worth it. Plus my personality has shifted… I’m grateful for the assistance with 30 pound loss. But I’m tapering off as of yesterday.
I’ve been on Topamax 50 mg twice a day for migraines for 4 years. I finally decided to stop talking it after I couldn’t remember the simplest things. I was having horrible memory problems and brain fog, to where I seriously thought I was losing my mind.
I’m currently tapering off from 50 mg to 25 for 10 days, then 25 every other day for 5 days as told by my doctor. I’ve experienced, hot and cold flashes and mental fog and small panic attacks. If I could go back I would have never started this drug.
Hi, I just wanted to come and share my experience of weaning off topiramate. I was on it for 4 months looking to control my extremely infrequent focal seizures. This is my 5th attempt at finding an AED I can tolerate and I’m desperate to get driving again, so I persisted past early weeks of feeling completely rubbish and eventually, very slowly titrated up to 100mg.
Once I stabilized at this dose, I felt completely fine – but then I had some auras just before my morning dose (I’d never had auras before, but given my type of epilepsy, this made sense), so drs gradually increased to 200mg per day. Due to some side effects suddenly having a severely detrimental impact on my career, it became apparent that although I ‘felt’ fine, I actually wasn’t fine at all.
My dr agreed I could wean off rapidly and helped me to do so. I won’t put the details of the schedule here as I wouldn’t suggest anyone does this without medical supervision, but I went from 200mg per day down to 0 per day within a much shorter period of time than usual (not cold turkey, but very, very fast). My career was literally in jeopardy, and I was desperate – so my drs and I both felt it was worth accepting the risk of rebound seizure and a few unpleasant weeks.
Initially I felt very ‘twitchy’ and incredibly restless, but it wasn’t nearly as bad as I expected. I had a few afternoons where I had a minor headache, and a few occurrences of aura just before my next dose. I had 2 days where I felt like I had a cold coming on (but this never happened), a bit of an upset tummy that I assume was related but this was tolerable, and a few nights where it was difficult to fall into then stay in a deep sleep.
Finally, right at the end, I felt vaguely dizzy all of the time – but this was so vague I sometimes felt like I might be imagining it. The day I stopped altogether, I had one episode of severe depersonalization that passed within seconds, and later, another aura. Best of all – even as the dosage dropped, the issues with my work resolved.
So for me at least, the withdrawal process was not nearly as bad as it has been for many others who have commented here, even though I weaned off super fast. But given what I’d read on this page and others, I had expected the experience would be horrific, and it just wasn’t. I’ve been completely off topiramate now for a few days, and I do feel like myself again, except for a little lingering fatigue and maybe a tiny bit of lingering short term memory degradation – but I’d say that’s already getting better every day.
I just wanted to share a positive story here to give some hope to others who might be weaning off. It’s not always a horrendous process. Good luck to you all.
Thank you for your post Kelly. Can you tell me how you did in the days following and now how you are doing? I just started tapering down because of high ammonia levels in my blood and insomnia, not to mention suicidal thoughts, fatigue, anger, anxiety and bleeding gums.
I am so glad that I found this article. I was put on 50 milligrams of Topamax a day after having a Thunderclap migraine. I hate this medicine and I am really upset with my doctor for not properly giving all the upfront information about it! I could be the poster child for the side effects of this drug.
Its horrible! I have a job that requires concentration and being precise and I feel like I have my head in the sand for most of the day. I can’t concentrate on anything or finish my sentences. I didn’t even make it a full month on this medication.
After I figured out that is was the medicine that was actually making me worse, I cut my last week of pills in half and tapered myself off this drug. Now I am experiencing vision issues and dizziness. Hoping this doesn’t last long.
I have been taking between 75-150mg of Topamax for 2 years for migraines. Have tapered for several months now to nothing. Having a lot of withdrawal symptoms to the point where I present as manic/depressive (or bipolar). Feel like anxiety had hit the roof, muscle pain, fatigue, insomnia, very moody, combative and all the while feeling like I live in a brain fog. Hope it gets better soon.
I was on Topamax for 6 months for migraines and seizure-like episodes. My doctor recommended an alternative treatment and I tapered off of my 100 mg per day dosage over a 2 week period. That was three months ago and I am still suffering from insomnia, anxiety and minor depression.
It has been awful. My doctor said they could put me on an antidepressant for the anxiety and depression, but I don’t want to get dependent on another drug and then face more withdrawal symptoms at some point. Has anyone else had the symptoms last this long? Any advice?
Yes, still struggling with withdrawal. I went from 50 milligrams to 25 last June, and became very depressed. I recovered a bit with the use of Zoloft, and then stopped the 25 milligrams of the beginning of February, and things have gotten bad again. I don’t know how long it will last. I feel like perhaps my brain is permanently altered from taking Topamax for 4 years. I was never on a very high dose, usually just 50 to 75 milligrams.
So relieved for finding this forum! I think I was only on topiramate for maybe 2-3 weeks tops. Never upped my dose. Dr prescribed for eating disorder control. Decided I didn’t like being foggy and exhausted all the time so quit cold turkey. Already prone to anger/anxiety/depression and now my anger is out of control. Debating if I should get back on just to taper off.
If you can, stick it out. You weren’t on it too long, should be easier to recover. Good luck!
I have been trying for the last month to taper down my Topamax from 500mg would like to get down to 200 or 100mg. So glad I found this site was feeling awful, couldn’t understand why have only reduced 50 mg so far tried 25 mg more this week and I have been so tired, dizzy and nauseous. At least now I can understand why… I am going to try and cut the 25’s in half. Thanks for the support!
This is such a needed website! So much pertinent information. I too had been on Topamax 100 mg for 10+ yrs for migraine issues. Recently I’ve made healthy choices with my lifestyle, going Vegan and cutting out sugar, and I wanted to go off meds.
I love my doctor but he’s never been the best at advising me with proper protocol. I cut back to 50 mg and then went to every other night. After a couple few weeks I thought that should do it. After only 3 nights without it, I suffered tremendously!
I had the worse migraine all day and was nauseated all day. In bed all day and then finally took 50 mg that evening. Next morning still feeling a bit shaky. Not worth going thru that again. Will slowly decrease to 25 mg over a longer period of time and hope to eventually get off of it one day.
I’ve been off Topamax since January 30. I was taking 50 mg twice a day. Most of the time I feel okay – I’m sleeping a little better, although I’m still pretty tired, but the rebound headaches are torture. It’s just constantly there and I can’t deal with it – nothing provides relief – not ibuprofen or Frovatriptan. Does anyone have any advice? How long did the rebound headaches last?
My headaches have been controlled by drinking plenty of water, a balanced diet, reduced caffeine, exercise and ibuprofen. You may have tried this already. Hope you find relief soon!
To those who may need help with rebound migraines, a drug called Zomig has been a big help. If taken upon onset of migraine, it will take the pain away. Best wishes, Karen
I started Dopamax 14 years ago. My pdoc put me on it to help me loose the 35 lbs. I’d gained from the depakote I’m on. Went up to 200 mgs. And it worked taking that weight off! Plus it made me very manic a lot which was fun. Better than being depressed. But I hated the dumbness. And it’s just gotten worse over the years.
Besides this drug, I’m on four others ?. I’ve weaned off of much of the depakote. But I’m just starting on tapering topamax. I’m down to 100 mgs. A miracle happened a few months ago. I went to get my prescription filled and instead of the 200 mg pill they gave me 100 mgs. So I took them not realizing the difference.
I did that for over a month and finally saw what happened but never noticed any withdrawal. Only slightly for a couple of days and I thought it was allergies. I had dropped 100 mgs all at once! Wow. Wish it was always that easy. Now I’m cutting 25 mg pills into quarters and going slow. Have 100 mgs. to go.
I’m getting clearer headed. I want to get off of as many of my pills as possible. Taking depakote, Wellbutrin, topamax, celexa, xanax. Ick… way too many. I want my life and mind back. I’m tired of being stuck on the couch and feeling like I have gum in my head all the time. I want to live! I want to see color in the world again and notice things around me again and feel feelings again!!!
I took 100mg-150mg each day for 3 years and my migraines eventually returned, so I tapered off recently. When I started the doses, I lost 20lbs (I’m not overweight), patches of hair, and had severe trouble remembering basic things like words, tasks, etc. Now that I’ve been off for a month, I’ve experienced some minor weight gain, severe fatigue, listlessness, vision problems, and depression to the point of breaking down into crying spells and wanting to withdraw from my friends and family. After reading this article I am hoping that I can return to my normal self because I’ve never had depression issues or fatigue before. I’m afraid my eyesight is just worse altogether.
I’ve had the depression as well. It’s been 3 months but I feel like it’s going away. My doctor recommended exercise, fun activities, redirecting sad thoughts, balanced diet and staying active. Good luck!
Your experience is the exact same as mine: Some minor weight gain, severe fatigue, listlessness, vision problems, and depression to the point of breaking down into crying spells and wanting to withdraw from my friends and family. I am so tired, so hungry all the time. Have been off Topamax since Feb 1.
I am tapering off 100mg that I have been on for over 7 years. I am having the exact same problems: depression, fatigue, weight gain, vision issues. Just wondering if these will resolve after being off the medication for a while?
I started taking 100 mg of Topamax and went up to 200 mg after six months. After I began taking Topamax and then increased the dosage, I experienced severe depression, anxiety and exhaustion – I could not get out of bed. Each time the symptoms subsided after four weeks or so. My neurologist prescribed it for the basal migraines I frequently had (and are breaking through again).
The Topamax has stopped working. Therefore my neurologist is taking me off of it after five years or so – not sure how long. But the weaning process is supposed to take place within ten days. Directly afterward I am to stop Primidone, and then Effexor. After reading this article and the comments (thank for all of the the input), I realise there is a reason why I feel so awful going from 200 mg to 25 mg of Topamax within seven days.
I am going back up to 50 mg of Topamax and will then see how I feel. I’ll go from there. If and when I am off of Topamax I will give my body a long break before weaning from anything else. I continually kick myself for not asking the right questions of my doctors. Just once I wish I could fully trust a doctor, but after twenty-five years I know I must be my own advocate.
I had been taking Topamax 400mg PO every day since summer of 2014. My MD cut me down to 200mg PO daily a couple months ago. It was originally prescribed for migraines but I was also on it to treat my bi-polar disorder. I stopped taking this medication cold turkey and have ended up suffering from most of the symptoms above.
I have been off of this medication for a week now and still do not feel like myself. I am tired, feel like sleeping all day, have had extreme bouts of anger (like I have never had before), I am nauseous and don’t feel like eating, and find myself crying a lot because I am overwhelmed by things that wouldn’t normally be overwhelming for me to deal with. I am kicking myself in the ass that I did not taper off this medication as opposed to going cold turkey.
I highly recommend that anyone coming off this medication talk to their MD and get a proper taper schedule before stopping this medication.
Hope this helps. Comments are welcome.
My sister has epilepsy and a bipolar disorder which causes her to become very angry and violent and she has been taking topamax for the past 16 years. She decided that the medication was no longer helping her with seizures or with her bipolar disorder and decided to go see a different Neurologist than the one she usually goes to.
This neurologist recommended she stop taking Topamax, so she did and then everyday she started having anxiety and panic attacks that lasted an hour. She shakes, screams, and her body turns bright red! I would like to know what others like her have done to relieve withdrawal symptoms like anxiety and panic attacks? Any advice will help thanks!
I am having a similar experience. I was on topamax for 6 years, 400 mg a day, then tapered down slowly until I was finally able to quit in March. I quickly began regaining weight (had lost 90 lbs. initially) so after a month or two decided I would try going back on it again.
I was starting out slowly at about 50 mg a day. I took this dose for about two weeks, then remembered why I had gotten off the med in the first place so I quit again. Shortly after stopping, I began having once (or more) daily episodes where my pulse would race, especially if I stood up or did any activity, sometimes up to over 160 BPM.
On these occasions my blood pressure would also spike to about 150/100, I would get uncontrollable shakes, and my face and neck would turn hot and bright red. I was constantly waking up in cold sweats, and it was hard to sleep.
This has been going on for the last week or two, even though I only restarted a small dose. I think the problem is that I didn’t taper off this time but quit abruptly. Please taper off slowly!
I have been on the drug for 4 years @ 100mg daily for migraines. It worked great, until I can’t remember my kids birthdays or how old I am. I’ve been detoxing for a few weeks with a taper system but decided not to refill & try to go cold turkey the rest of the way. Insomnia, excessive joint paint, headaches that remind me of why I started the med & some very location specific ones due to the detox.
I am frustrated! It seems like I’m never going to be free of pain in someway or the other. This is my 2nd detox, the headaches got the best of me last time, but this is worse. The symptoms don’t wane. I can’t see, I can’t speak, I’m dizzy, I’m nauseated, I’m in pain. I do massage therapy, acupuncture, yoga, eat healthy all in the hopes of staving off pain/ discomfort that I can grow through… there’s no growing through this.
This is a fog that I am anxious to have clear so I can see whats ahead.
I decided to discontinue taking Topiramate 100 mg. daily due to severe hair loss and memory problems such as getting lost, can’t remember words phrases, my own address, etc. I have a master’s degree and feel like my ability to communicate was at a first grade level. I had been on it for 3 years and didn’t know this drug may be the cause.
I had been taking it for seizure related and migraine headaches. I dosed down very slowly and have been off of it for 2 months. My side effects during and shortly afterward were rebound headaches, blurred vision, insomnia and increased appetite. All the side effects have become much better.
I have not gained any weight back. This is probably due to the fact that I never had much to lose in the first place and I always eat very healthy. I am a borderline diabetic and have eaten frequent, but very small portions at a time for many years, to stabilize my blood sugar.
I have read all the comments and can’t find any one off the medication for a significant amount of time. What I really want to know is if your cognitive function returns, as so far my memory problems continue. Please tell me this is not permanent!
Topamax is a nightmare. 3 months after I tapered off and I’m still feeling the huge mind fog and can’t make a sentence. I really hope it will go away, otherwise I have no idea what I will do. I used to be a sharp and talented cookie, I feel like an idiot now.
The recall issue is the most problematic and both short and long memory. Overwhelming concentration issues. Keeping a conversation is just so difficult when you can’t recall words you have known all your life.
They are somewhere there (just like all the rest of the lost memory) but it feels like they’re locked up somewhere without any natural smooth direct access to it. So frustrating and embarrassing. DON’T Ever TAKE IT!!! Try CBD instead.
This was very helpful information and I’ve been taking Topamax for several years now. I had been suffering from migraines for almost 20 years and although they increased my dosage to 100mg daily I was still having more migraines than I should have. Most times when I took it my head would burn as if I had sores on my brain and I wanted to stop taking it.
I had a car accident on 28 July 2016, got a concussion and could not keep up with my dosage. By 30 July I had completely stopped taking Topamax. At first all I did was sleep, didn’t want to eat or do anything but things got better. Unfortunately, three months later and I am still lethargic, it’s very hard for me to get motivated and I have gained 15 pounds!!
It’s not that I eat more but I’m gaining weight almost every day even when I can get it together and exercise. I do not want depression to set in and I know that I need to see my doctor but I don’t want to be handed more pills. I still get headaches but they are nothing like the severe migraines I had while on Topamax.
I have been on Topamax 75mg for migraines for a couple of years now and remember how hard it was to adjust to the side effects which took about two months. I lost about 20 pounds, have poor concentration and cognitive issues but did cut my headaches in half. Now I have to come off because I have kidney stones on both sides; not necessarily because of the Topamax (had them in the past) but it can make them worse and now I am worried about the withdrawal symptoms.
My Dr. has me tapering 50 mg for three weeks, 50 mg for 2 weeks then 25 for 3 then 25 mg for 2 then stop. I am grateful for this website and find comfort in sharing this experience with others. Thank you and will keep you posted.
I’ve been on Topamax 100mg at night for several years. It helped my migraines/headaches… however I too have had increase problem in word finding and memory. I can not remember names of people or my own address for several minutes until I can finally grab them and say them. My MD has dropped me to 50mg at night x1 wk then supposed to stop.
I have a horrible appetite right now with this transition off… and I have some 25mg tabs in the home and am going to take those for a week prior to stopping, but it sounds like that is still really fast. I have had 3 migraines already in the first week too. :( I am glad I am not alone though with the cognitive changes… being 44 and not being able to remember things is really scary and just not right.