 Topamax – things "tasting funny" a common side effect for migraineurs |
Topamax (topiramate) has been a help to many patients with migraine and epilepsy. Unfortunately, many migraine patients also experience Topamax side effects, and these side effects make them more likely to stop topiramate treatment.
Researchers at the University of California in the United States and the University Medical Center in the Netherlands decided to ask the question – why so many problems? Are migraineurs actually more likely to have side effects from Topamax?
The researchers compared patients with epilepsy and patients with migraine who were taking topiramate alone as a treatment. The data showed that migraineurs were indeed more likely to stop taking the drug because of adverse reactions.
Epilepsy patients were more likely to suffer behaviour reactions and headache. Migraine patients were more likely to find that things "taste different", or have cognitive problems (such as language problems). Migraineurs were also more likely to drop out of topiramate treatment because of adverse reactions.
Technical data for the study can be found here: Are Migraineurs at Increased Risk of Adverse Drug Responses?
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{ 46 comments… read them below or add one }
Something interesting I noticed when I was reading through the full prescribing info on Topamax: the clinical trials used a much lower dosage of Topa for Migraineurs than it did for Epileptics.
I am taking Topamax and have been for 3 years now. I have the language problem and the things taste funny problem and they have not gone away. The language problem is very insidious. I find it difficult to find the right words for things. I cant tell any stories or even really talk to my friends for long periods of time without pausing and searching for a few words. I am willing to take the medications because the Migraines I have are debilitating and quite intoleralble. The only question I have is, If i go off of topamax will I get my language skills back?
Thanks for your comments. Yes, Topamax is generally given at a lower dosage for migraine than for epilepsy.
Gwen, you ask a very good question – how permanent will the side effects be? I don’t think we have enough information to give you an answer. I’ve heard people claim that they got a lot better after stopping the drug, and others who say the problem continued.
I would also like to know if anyone has tried actual therapy for the language problems. It would seem that it would be be better to just take a different medication, but I do understand that if it helps with migraine anyone would be reluctant to start over with another treatment.
I was originally prescribed Topamax, before it was approved for Migraines…
(and was not told that by the doctor) and within a few days, it made taste
terrible, especially soda pop, but I also lost the feelings in my left hand and up to my elbow. I was told to stop taking it… and my taste and loss of feeling would return about 4-5 days afterwards. It took over a year to get my taste back… and not to where it was before, and the loss of feelings still has never returned to my left hand (feels like I slept on my hand) What made me very mad is that I have seen on national morning TV shows on CBS and NBC… that they were tauting Topamax to loose weight (no wonder if it makes food taste like crap) and also to stop alcoholics to stop drinking… well, I know it stopped me from drinking soda pop for a very long time,too!
I take 50mg of Topamax daily for my migraines….and yes, by the second day, ALL soda tasted FLAT and NASTY and still does….it did not seem to change the taste of anything else, though….
Interesting about the numbness in the left arm/hand….I have had numbness/tingling off and on, mostly up and down my left arm and into my hand…I attributed it to a pinched nerve or something and kept going to the chiropractor…I am wondering now if it is the Topamax causing the issue?
I stopped taking Topamax about a year ago (Oct. 2007) for the reasons cited as side effects (word retrieval problems, left arm feeling numb, tinnitus). The language problems have improved, but the numbness in my arm comes and goes, and the tinnitus is constant! Maybe it takes longer than one year for the side effects to subside…?
One more thing…
It’s ironic that my doctor tried convincing me that the pain in my arm, was more than likely… a pinched nerve! Rather than Topamax…real cause! I wonder if they were told to say that, by the manufacturer?
Thanks again for your comments. Yes, the media gets pretty hyped up about drugs, whether it comes directly from the maker of the drug or from elsewhere. I guess it doesn’t make as good a news story if you have to say,”This drug has helped thousands! But then again, many of those people have to live with the side effects…”
We have to remember not to be surprised when drugs have their downsides. They all do, even when they really are a help to many people.
My daughter has tried Topamax and suffered such severe mood swings that she had to stop. The MD then told her to try Verapamil. It is also causing depression and mood swings. Is there nothing else to help? Her migraines were brought on by allergy injections.
Cynthia, there are literally hundreds of combinations of treatments that may be a help. I would be surprised if a doctor tried Topamax first. Though it has helped many, it really is way down the list of things to try because of the side effects.
I recommend that your daughter see a neurologist who is a headache and migraine specialist if she hasn’t already. If your doctor is suggesting you’ve tried everything with those two – you need a new doctor!
I’ve been taking 100 mg topamax for several years now. The relief from migraine is great– but I also have the tingling and the loss of word-retrieval problem. I thought I was getting dementia or alzheimers! Thank God it’s not that! At least we hope not…. The tingling comes and goes but has not gotten worse than a certain bearable point. The mind thing I think people think I’m menopausal, but it does bug me.
Thanks Trudy. I’m glad it’s not “unbearable”, but I hope things do improve!
In the past few weeks, since I have started with 2 50mg of Topamax a day, I have started getting terrible light headed dizzy spells…they last only a few seconds….2-3 at the most, but they are vivid and scary!!…the wildest head rush I have ever felt!!!…..the room spins….or suddenly the ground comes up to meet my face…..then just as quickly, everything is right again….
Sad thing is…my migraines are not getting any less lately….
I have been on 100mg of Topamax for over a year, my MD started me on 25MG and gradually we moved up to 100. I do feel some tingling and twitching and have some language / speech problems, i.e., have difficulty searching for the right words at times. It’s a real pain at times because I am a foreign language instructor at a college, I love crossword puzzles and I like to socialize, in general. Still, I put up with all the side effects because the debilitating mimgraines that I don’t get as often were making me suicidal and I no longer feel that. Just like other medications weren’t for me, and I have felt horrible side effects with others, I know Topamax isn’t for everyone and If an improvement appears, I would try it. It’s always such a risk. For now, I am happy not to have migraines 80% of the time, openning up my eyes in the morning with doubt and fear.
okay….I am weaning OFF of Topamax IMMEDIATELY…I cannot FUNCTION today…for a few days now it has gotten worse….to where I have a constant buzz going…like I am drunk and cannot even walk a straight line…so I googled Topamax and Feeling drunk and came up with this website
http://www.druglib.com/adverse-reactions_side-effects/topamax/seriousness_lifethreatening/
NO MORE TOPAMAX FOR ME….I would rather live with the migraines than end up not living at all, because right now, that is where I feel that this medication is sending me towards….
Thanks for your comments both for and against. It certainly is a balancing act trying to decide what medications to take.
Note that druglib.com is listing a whole set of individual cases. These are important as a group, but be cautious taking them one-by-one. Often times a doctor notices an adverse reaction, but there’s no way to be sure if it’s coming from the drug, or a combination of drugs, or something else.
Most people won’t experience a fraction of these side effects. Yes, Topamax is a more powerful drug and there are a lot of side effects. But it effects everyone differently.
Anyway, Tambrey, I hope you can find something that works better. There are a lot of options out there you need to try something like Topamax.
Hi, Ive been on Topamax for nearly 2 years now, and the severe symptoms that I started with began to disappear within a couple of months….I don’t think I could survive without it now, as my migraines were that bad at the time. At the moment though I’m also on Propanolol as well, which just might balance out the serverity of the side effects??
Before Topamax, it was Pizotifen, and that was too difficult to live with, the side effects are worse than Topamax, plus you feel like a zombie constantly, and need to sleep pretty much for 20 hours a day to even slighty function!
At least now I can sort of get on with my life again, I very rarely have the debiliating migraines I used to have (I had hemipeligic migraines with visual aura), but I am on the top dose of 100mg twice a day for migraine use.
Hope this gives hope to somebody else…if you can see out the side effects, it can help!!
Hi – I’ve tried Propranolol and Topamax – neither worked and I have started Zoladex. I can now take a triptan and it will get rid of the pain BUT that only works 3 days a week. Has anyone with hormonal migraines found a prophylactic that works?
Adrienne….I dont suffer from hormonal migriaines do maybe the treatments would be different??
The pain killers that I have are Indomethacin, both orally and as a suppository for when the nausea gets too bad, they take about half an hour to work, but they ceratinly settle the migraine down enough to I can function.
I hope you find something soon that works for you!
Thanks for your comments, everyone! Adrienne, many of the prophylactics that normally work for many with migraine have also worked for hormonal migraines. Some may be promoted more than others, but I think when it comes right down to it it’s like everything else – it depends on the person.
Hormonal therapy itself (ie keeping estrogen levels stable) has also been a helpful treatment.
I have been on Topamax for a year now. I am on 125mg taken at night so that I don’t have any of the side effects that get you when you first take it. I have the tinling but all I have to do is drink more water and it goes away. It starts when I am not hydrated enough. I am not one to drink alot of soda, so that did not bother me at all. The problem with the loss of words I just laugh off. For me Topamax has helped so much that the side effects are tollerable. I am very lucky that it work for me. I have also lost weight on Topamax. Which has also been a plus.
I was prescribed Topamax for migraines but I went off of it the second day. I was having very scary and racing thoughts, almost like a broken record going over and over the same thing. It felt like someone else was in my head telling me that I had to kill myself. I have neve had suicidial thoughts or a history of mental problems. I have not been able to find anyone else that has had this experience but my doctor took me off Topamax stating that it is a known but really rare side effect.
Anyone else out there have this type of mental side effect? Is there something in a person’s brain chemestry that can cause this so I know what to look out for if I’m prescribed anything like this again? It really scared me and I’m terrified to take anything again.
Kim – glad to hear you’re having some success!
Kimberly: Yes, depression and anxiety and so on can be side effects of Topamax, but they are certainly less common ones. Your doctor is right, and was certainly right to take you off it.
I’m afraid the brain is still too much of a mystery for us to know exactly why certain people experience this side effect. But it’s wise to make sure your doctor knows about it, and keeps an eye on it (with you) while trying future medications. Hopefully something like that won’t happen again – and it may not.
I started with a new neurologist who took me off of propanolol which I had been on for years and started me on topamax. I am up to 75mg and his goal is to get me to 200mg.a day, My biggest concern is my short term memory loss and shortness of breath. I felt like I was doing ok on the propanolol (not perfect,but okay) and since I have been on oxygen at night I haven’t woken up with a migraine which is wonderfull. I experience tingling in my fingers but I can deal with that but I cannot deal with the memory loss nor not remembering words like Gwen. I can’t afford that with my new career of becoming a private invesigator. I don’t like topamax. I still get lower grade migraines. I just want to know if these side affects will EVENTUALLY go away. If not…Topamax can go away. I don’t like the way it makes me feel. Sometimes I’d rather suffer the migraine. I think the folks who creates these drugs have never had a headache in their life!
I’ve been on Topamax for 9 months, 4 months at 50mg three times a day. The medication was prescribed for nerve pain. Due to persistent problems with word retrieval, memory, and fatigue, my dose was reduced to 50mg in the morning and 25mg at noon and in the evening. Since then, I’ve had daily severe headaches, some feel like migraines, some are more like cluster headaches that last all day. Is there anything I can do to mitigate these withdrawal effects?
I’ve been on Topamax for 3 years at 150 mg at night for migraines. In the beginning, I had severe problems with word retrieval, tingling on my hands, feet and face, as well as the “off taste”. All of those side effects have continued relapsing and remitting I’d say about every three months. The side effects are not as severe as they were in the beginning, but they are still bothersome. However, the migraines are so much less frequent (3 times a year versus 3 times a week!) that I’m willing to deal with all of the other side effects.
Hello-
I just started taking Topamax for my migraines about a week and a half ago. I’m on 25 mg a day. Half a pill in the morning and half a pill at night (yuck lol). My boyfriend states that I’m very moody and on a “hairpin trigger”. I’m just noticing that I’m tired all the time and can’t seem to find the right words for things alot. Is all this normal for someone who hasn’t even gotten up to their 50 mg dose a day??
I’m back. I have been off of Topamax now for about 2 months. Bad stuff for me. I have a new neurologist that I am about ready to worship at his feet! We are starting several new things but the one thing that I found most amazing was his recommendation to drink Gatorade. Being the type of person that I am I said to myself, “OK..I am going to prove this guy wrong!” Boy…was I wrong! It doesn’t stop the headache by any means but it sure does slow it down. It has to do with the electrolytes. We now keep Gatorade (low calorie) in the car, in my home and it goes where I go…along with my Maxalt and my Amerge. My doctor is also a migraine sufferer. It sure does make a difference having someone who understands. I would be interested in knowing if anyone else has tried Gatorade.
Greetings from Europe. I just started Topamax (here called Topimax) at a very low dose (25 mg once a day), gradually going up to 50 mg twice daily. Very few side effects so far. I drink plenty of water and take a daily magnesium supplement to prevent muscle cramps (I’m an endurance athlete), maybe that’s why I haven’t experienced any numbing or tingling in my hands or feet. I think omega-3 fatty acids (like ground flaxseed) help protect against word retrieval problems and such. I’m feeling a bit “weird” and restless sometimes, sleeping not as well as before. No migraines so far. So far so good.
My neurologist has started me on Cymbalta for a oreventative medicine. I still get migraines but they are less severe and tolerable. I am also taking Amerge. I think we are finally getting on top of this and of course the Gatorade is my constant companion!
I think I’ve notice that the Topamax makes me somewhat jittery and wired- and I definitely lost weight on it. It seems like everyone else is saying the opposite, is there anyone one else who thinks the Topamax is making them feel that way as I do?
I thought I was going crazy!!! I am so I guess happy to see I’m not the only one… I have had migraines for most of my life. I’m now 44. I recently started having dizzy spells alternating with my migraines. I was given generic topamax and no migraines but just dizzy then occasionaly dizzy and pins and needles in hands and feet and lose for words. I’ve never been at a lose for words before in my life… I work or possibly use to work for a place where I need to be able to talk 8 hours a day. I thought I was losing my mind and no one seemed to be able to help or wanted to help me I’m so glad I found this page.
Oh! and I have lost some weight
I took topamax for about 1 year. My headaches got better. I still had them but not as frequently and not as savere. I lost weight, which was great, but I was cold all the time and tired all the time. I did find that it was hard for me to complete a thought with words. It was like I couldn’t find the words I wanted to use. I was extra moody and irritable. I found myself getting sad and depressed. I also had the tingly hands. I wanted to go off Topamax to see if some of these things were side effects from the medication, or if they were going on for other reasons. I had also stopped working the long hours that I had been working so I was hoping that getting more rest would help too. I still get my headaches but they haven’t been as bad as they originaly were. I found that the other issues I was haveing went away. I know that they will probably never go away 100% but things are alot better for me now than they were. I don’t know if Topamax helped get them under control or if getting the stress in my life helped. I like to think it was both.
I was doing further research into some of the side effects of topamax and it’s generic conterpart. I read in several places that the tingling of the hands and feet may be tied to the need for potassium…. May need to talk to your dr. I know I am also on diuretics so I did start taking otc and I did find a bit of relief. I am still experiencing if I have not stated mood swings but I am still under extreme stress at this point in my life. My family believes it’s “all in my head”.
So glad to have found this site!
I take Topiramate 100 mg 2x/day and it helps tremendously with the migraines at least. I don’t think I have any side effects. I still get migraines, just fewer of them. Since my insurance company only gives me four Relpax/month, I have to take Fioricet because I get more than 2-3 migraines, which is what four Relpax covers.
Strangely, while the Topiramate doesn’t cause any problems with words, the Fioricet does. I have a lot of trouble retrieving nouns, and only nouns, while on Fioricet. At least I think it’s the Fioricet, although it could be the migraines. Although it doesn’t happen with the Relpax, only the Fioricet.
The problem is, since I started having to take Fioricet because of the insurance problems, I think I’ve developed a dependency on Fioricet and Excedrin, and now my neurologist says I get rebound headaches. I get sinus headaches daily, usually several times a day, in addition to the migraines several times a week. The doctor wants me to go into a hospital to get weaned off the Fioricet and Excedrin. It sounds complicated, and I’d have to stay for several days. I really really don’t want to, but I’m tired of daily painful headaches.
Anybody ever get rebound headaches?
I have had migraines since I was 5 years old, and stared having DAILY dibilitating migraines after my second child in my mid-twenties. I wanted to die, and all the doctors looked at me like I was just some drug addict looking to score. After over a year of constant pain and sedation, I finally found a doctor that looked deeper into my case. While I was on Inderal LA, which I tolerated, my doctor recently switched me to Topamax. I really can’t believe some of the comments here talking about how the tingling and the taste are just too much to handle. It makes me believe you have never REALLY had a true migraine. Every medication is going to have its side effects, but some of theses, including Topamax, have given many of us our lives back. It is a GOOD thing for us to stay away from soda. And a little tingling in my fingers doesn’t bother me nearly as much as not being able to open my eyes.
Katie: I started to get rebounds just before seeing the dr. But they were caught in time before they became unmanagable. Good luck on those and get them taken care of.
Danielle: For me the headaches just started to get worse with age and onset of perimenopause. My headaches started at 8 with onset of puberty they were bad then got better then got worse with teens got better with 1st child got bad with 2nd pregnancy and so on and on and on…. The taste thing for me is I’m and emotional eater too… I’m also or should be on but not on anti depressant but not… But so far this is working for me… I’ve actually lost weight. but can’t wait for menopause I have been told this will help with migraines.(crossing fingers) My family history is riddled with migraines… Mom, her dad, both had them. Mom’s stopped immediately when she had a hysterectomy. I’m not trying to be that drastic but. I do know what a migraine is as I’m sure other’s are but some are as I’m sure have security needs… When I first started with the tingling the dr. didn’t give proper warning. I was scared I was having some sort of attack of some sort. Now that I know and do know that I can do something to help or possibly help to reduce some of the affects if helps to make me feel a bit more in control of my health and my life instead of something else controlling me. That’s all that is so yea to some it may seem minimal but it’s all about security and mental well being.
One issue to be very aware of is the fact that Topamax also increases the risk of kidney stones. especially if you have any family history.
I took Topamax for a few years and ended up with enough stones to gravel your driveway. Talk about pain!!
Hi. I have taken topomax 100mg 2x a day for four years and I am currently weaning off of it because my migraines are pretty out of control so we are trying some new drugs. The sides effects, like the tingling and rapid weight loss do stop, the memory and speech issues do not stop but you just really learn to deal with it, hey who can carry on a coherent converation or even dares speak their or anyone else’s name with a migraine going on anyway? The topomax does get better, really, as long as it is still working and you are not having any suicidal or unusally depressed thoughts I recommend hanging in there. Right now my doctor is working with a pain clinic that specializes with migraines and I feel like a guinea pig, all of these drugs have side effects and the last one they were trying me on had me fainting suddenly. When the side effects seem to annoy you just remind yourself of those nasty migraine side effects; vomiting, agitation, depression, light sensitivity, noise sensitivity, aura, blurred vision, want to slam your head through the window (or is that just me with a migraine) etc. Best Wishes. Jenn
Due to some issues with my primary care physician I have to come off of my meds on my own. I’m really scared because I have no way of getting medical assistance. I know there are issues with cold turkey on topamax can’t find anything online can anyone recommend and website?
Danielle, I know what you mean…i happily lived with the side effects of Topamax, rather have a few side effects than the migraines and all that comes with that!!
I have now had to come off all my medications, and quickly as Im pregnant, there were no withdrawal effects from either Topamax or Propanolol….so now my migraines arent as bad due to the pregnancy hormones, but I can only take paracetamol if I do get one, so I seem to be spending alot of time in bed, trying make myself feel better!!!
My Neurologist is hoping keep me off all medications after baby is born, but I think its unlikely as Im still suffering!
I went off topamax cold turkey once I found it might be a major cause of my kidney stones. I had no real issues. Of course, your mileage may vary…..
I’ve been on Topamax for about 6 weeks now (had migraines for 30+ years, recently become 75% of my life with possible perimenopause). I get the pins & needles in both arms and right leg, and the loss of words, muddy thoughts, I am freezing cold all the time and cannot get warm. As for the depression, crying and aversion to socal situations, I’m just confused as to whether this is hormonal or drug related now – it’s very upsetting when you’ve been active all your life then suddenly you can’t do anything except plan your life around pain or the possibility of it. I’m dreading the first review as I know they’ll want to increase the Topamax dosage – I never used to take drugs but when it’s that or the migraines…. Jenn described it perfectly earlier when she said ‘you want to slam your head through a window’. Do I live as a depressive hermit and hope the migraines go – for what kind of life? Or do I carry on year after year trying different drugs? At the moment I just don’t know.
*edit “never used to take PROPHYLACTIC drugs”
Well, I’ve been totally off for about a week now. I have been getting migraines but they have been a bit different. I still get the throbbing headaches but not as strong. Instead of aura or the feeling of dread before the headaches I now get numbness or tingling feelings in my face and on my nose.
The memory, the unsteady steps and the lose for words are still there but not as bad just only if I need to think quick. I still notice when a migraine is coming I can’t look up and down too quickly or the migraine comes up quickly. Strange.
One old problem that has returned, which is new as far as my migraines are concerned is the dizziness just before the migraine. I fully expected everything to go back to the way it was except for the memory and lose for words from what I was told and read but hmmm…?
I do notice when I get stressed I get migraines quicker then I use to. My eating habits haven’t returned and things still taste off but that’s ok.
I told another medical professional when my migraines first started to become worse then usual and the additional issues before using topamax and they stated it sounded like PTSD or Post tramatic stress disorder. I have several issues in private and work life that really got to me. But anyway, we will see what will happen in the next month or two.
I know someone who was in a medical study where it was used to help them quit smoking, it worked, however same troublesome side effects.