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 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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{ 26 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.