A team of researchers led by Dr. Francesca Coppola from the University of Perugia (Universiti degli Studi di Perugia), Italy, recently investigated some side effects of the drug topiramate, sold as Topamax. Specifically, they were looking at patients taking the drug for migraine, as compared to patients taking other medications. They wanted to see if Topamax was more likely to cause "language disturbances".
By language disturbances we mean things like not being able to think of the right word, mixing words up, difficulty coming up with the words you want to use. This is actually a symptom of migraine, so we shouldn’t be surprised to see language problems in migraineurs.
But the research did show a clear difference. Patients on other drugs had no language problems, but over a quarter of those on topiramate did.
The good news is that the symptoms were mild, and usually disappeared after a month without any change in dosage. In other words, it’s something to be aware of, but probably nothing to worry about.
Topamax has helped many migraineurs, but it is a powerful drug and should not be among the first you try. Read more about Topamax and migraine here.
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Maggi – thanks for the info. Yes, I don’t think jaw trouble was specifically mentioned. But I think it fits in with other side effects, such as shakiness and trouble forming words.
marie – yes, I imagine seminary could be a bad place for not remembering words. And remember, many of these side effects are also symptoms of migraine. It’s possible Topamax may make those symptoms worse.
Erin – thanks for the comment! TMJ or TMD could very well be triggering migraine problems. Often though the triggers come from a few sources – in other words, solving jaw issues may help (I hope it does for you!), but there may be other factors that you need to deal with also.
This is some powerful med, and I don’t know how Drs. determine dosage amounts. About a year ago, I was given a prescription to start Topamax at 25 mg. a day and gradually work my way up to 100mg. Well, with all the side effects along the way, I decided that there was no way I could go above 50mg a day (it’s scarey sitting behind the wheel and completely forgetting where you’re supposed to be going). I have continued to split my dosage, 25mg in morn, 25 at night (I read somewhere that some patients do better taking twice a day) and have gotten used to the side effects that still linger, tingling toes, word loss, occassional “lost” feeling. The great benefit that Topamax has been to me is that I’m not so sensitive to bright lights and loud noises. I can now go to a movie without getting a migraine! And I can eat in a noisy restaurant that has TV monitors in my line of vision, and work at my computer at work while conversations and music are blaring around me, and these things do not trigger a migraine! Maybe a higher dose would free me from some of my other triggers, and although I would LOVE to be free of migraine, the reason I want to be free is to be able to function and really use the time I’ve been given, and I don’t see that I would be very functional on a higer dose.
Your doctor will determine your dosage based on the studies he reads about, recommendations, and your medical history. And probably a little intuition.
That’s an excellent reminder that experimenting with dosages, under a doctor’s care, is very important. What works for someone else may not work for you. Taking medication at different times, in different amounts, can make all the difference.
Thanks for the reminder!
Although my personal experience with Topamax was difficult (see above note), I actually envy those of you who either have had no bothersome side effects or have been able to pass through the side effects to a point where they’re no longer a problem. I have nothing against Topamax per se – it’s just that the side effects for me were intolerable as a professional – and I still took it for 3 years! It did, however, decrease my migraine frequency – from almost daily to about half that. Unfortunately the side effects for me were significant enough to make it unworth the decreased migraine frequency. Heck, I *wish* I hadn’t had the side effects so badly!
That said, my new neurologist wants to try me on it again at very low doses. She says there’s evidence that says that someone who’s had bad side effects with Topamax and then re-starts it after a period without it *may* be able to tolerate it better the second time around. I remain a bit skeptical and told her that I’d give it a shot, but if it shows any signs of causing the cognitive problems it caused last time, I WILL go off it. She agreed. This is supposed to start January 5th when she comes back from vacation.
In the meantime, however, she started me with acupuncture, which has had a far greater effect than the Topamax ever did – I’ve been migraine-free for 4 days, despite storms coming through and the ones I’ve had since starting acupuncture 3 weeks ago have been much less severe. I’m hoping that by the time she comes back, I may not even need to try the Topamax again…
Another good reminder, Betsy. Not only may restarting it give different results, it’s amazing how much our bodies may change in a short time. You can have a very different reaction to a drug some time later.
Then again, with so many dozens – even hundreds of combinations of things to try, going back to Topamax is certainly not your only option.
I’m sure your neurologist is leaning on the fact that it did cut down your attacks so dramatically. If she can lessen the side effects, there may still be hope for Topamax in particular.
Update on my previous post from 10/24/08. I am headache free, except for the occassional mild stress headache.
I have eliminated Aspartame from my diet. No more diet drinks that contain aspartame. I have been migraine free for about 3 weeks now. I now know what it feels like to wakeup without a migraine. Do your research on aspartame and the effects this chemical has on the human body. Good Luck!
Another big side effect I’m having is loss of appetite and it’s becoming a real problem. I’ve just recently been up’ed to 100mg a day. Since it is the holidays it has been difficult to get in touch with my doctors so I am going to have to cut the dosage myself. I have to FORCE myself to eat eventhough it makes me sick to my stomach to even discuss food let alone try to eat it. I’m lucky if I’ve eaten once a day in the last 3 days!
Janis – that’s great! Wish it would work for me.
But I do avoid aspartame because I think it makes things worse.
Erin – is there another doctor you can talk to? There may be something else going on besides the medication. Hope you can find a solution soon!
Hi
I have been on Topimax since May and have seen lots of effects but I have found that once I get so fet up after the the latest taper up drop down for a day or two… It becomes easier to tolerate the side effect again…My Doc has me on 100 mg I only weigh 115 lbs and I take it all before bed. It is working. I was not crippled by our last batch of storms as I would have been in the summer and spring and when I started this stuff I never thought you could get that much in me without me losing my mind…it all got better….I should say I am also taking Lyrica and have noticed much of the improvements since I have taken these meds together.I am so amazed I am no longer in daily pain I am starting to think that I could function in life again, maybe help other people. I also go to see a chiropractor and go for massage therapy and avoid as many triggers as I can.Many many foods.I hope that you all try to relax and follow your heart listen to your inner voice if you think things are for you or not. Our instincts serve us well.Do not give up trying to find something that works,there is always another way, somebody always can help.(sometime you just have to wade through the puddle of almosts)
Time for an update.I have been seeing a head ache doc who seems excellent. I have been going since Sept and I am happy to say that there is a human being emerging…I have tried everything I still do…I have cut out and still reduce aspartame but do not find a huge difference left it behind for a year…no effect.anyway…Thanks Topimax
Happy New Year and Take Care
Karin
Betsy –
I just wanted to let you know I was in the same situation. I took Topamax several years ago and the cognitive side effects were too much. I couldn’t put a coherent sentence together and I could barely remember my way home from work so I stopped taking it even though it completely stopped my migraines. The headaches have gotten much worse lately so after several other things didn’t work I finally agreed to try Topamax again even though I was afraid because my job is very detail oriented. I worked my way up to 50 mg in the morning and 100 mg at night, the same dosage I took last time, but the side effects are much less severe this time. I still have a little trouble remembering things, and I tend to type words twice without realizing it, but it’s nothing like it was before. The bad thing is that it hasn’t stopped my migraines this time; it’s cut them in about half, but I’ll take it.
Thanks Karin and Marti. Good to hear the updates and personal experiences. Another reminder that everyone’s different – and even individuals are different over time!
I wish I would have known about the language effects from this medicine. I was on topomax for 3 years and it worked for a while. Then my MD had to put me on a higher dosage, that is when the problems started. I was in a meeting several days later, stuttering like a fool. I knew what I wanted to say but was so confused, it wouldn’t come out. My MD finally took me off of it because I was so frazzled. Now, two years later, I rarely have migraines but am having to closely watch how I talk and still sound like a bumbling fool. Maybe they should have done more testing?
Hi Heather,
Thanks for sharing your experience. I hope that doctors are sharing with patients more clearly about the possible side effects now. There are so many options out there, Topamax is certainly not for everyone!
I have been on Topamax for approx 3 months. Was on 50 mg for 3 weeks then increased to 100. Seemed to be working well..but I missed 2 doses…I developed a bladder infection. Don’t know if you’ve ever had one but they are very painful. I forgot to take the topamax one night and the next morning. Hasn’t worked the same since. My Dr. has increased my doseage to 200 mg a day but it doesn’t seem to be helping.
I do not have the typical migrane..no “aura”, no pain on one side..I do have some light sensitivity. But I have headaches every day. And have had for over a year. I’ve probably tried very medicine there is. Talk about being depressed! I have noticed some language problems since taking the 200mg dose but thought I was imaging it. Imagine reading the comments here..nice to know I’m not losing my mind!
I’m going to a headache clinic next week..hoping that they will be able to determine a cause for my headaches.
This is definitely a website I will keep in my “favorites”!
Judy
As others have said, this is a great discussion! Thanks for all your input! I have suffered from migraines since a child; I’m now 55. It’s been a long journey; too long to tell the story here. I’ve finally identified two trigger groups for me — food and weather. The foods were VERY hard to identify, but I have finally pretty much got a comprehensive understanding of the ones that affect me. Weather, well, that I can’t control and I would very much like to find a preventative solution.
Some time ago I took Topamax for about a year, maybe two. Low dose if I recall, 10 mg. Just about all the side effects I’ve read about above. The good news was that most side effects dissappeared or became minimal after a couple of months, and it did work to iliminate nearly daily migraines. But, I developed a severe speach problem – studdering on certain words. It was mildly embarassing personally, but a huge problem professionally. I stopped taking Topamax 4 years ago, but the speach problem remains. It is not as frequent, but now seems permanent. It is clearly worse under stress. (My doctor didn’t believe me either!)
I have been on Topamax for 4-5 years for partial complex seizures, and am up to 200 mg twice a day. When I first started, I absolutely couldn’t put together sentences, had me in tears. I adapted over time, and got better at it, but my problem is I have to get up in front of adults and teach, and they are very critical. I do have great problems finishing my sentences, coming up with the words I need. I can picture what I want, but can’t get it out. I’ve recently taken a big career slam because of this, and am planning on pulling back on my dosage before my next class checks in, just in hopes I can keep from sounding like a stuttering fool. I am glad to have found this site, though, as I feel so much better knowing it isn’t just me. Another thing — where I graduated from HS with math & science honors, I can’t hardly add simple numbers together without paper or a calculator.
Also, those that spoke of joint problems — I had not heard of that before. I have alot of pain in my hips and knees at times, but just accounted that to age. Is this possibly from the drug?
Time for an update. My headache specialist ended up not putting me back on Topamax, but on Zonegran (zonisamide)- another anticonvulsant that she feels works as well, but without the cognitive side effects. I’m up to 375mg at bedtime and the migraines are marginally fewer, but not really a significant reduction. One big bonus for me has been a significant weight loss, however – 30 pounds (which was not a bad thing
.
I had an excellent result, however, from accupuncture combined with my meds- after a month or so of twice weekly visits, I went 6 weeks headache-free. Unfortunately, they came back. But I’m back in acupuncture therapy and it’s working well. They feel that it should take less time this time to get me headache free and hopefully it will last longer. If you can’t afford a private acupuncturist (and who can?), think about a community acupuncture clinic – find one near you at http://www.communityacupuncturenetwork.org/ – they work on a sliding fee scale at what YOU feel you can pay. Love the concept! I have no idea why this is working for me and I haven’t drunk the Koolaid on the background theory – I only know that it does work – at least for me. So for now – the Topamax is on hold – I’ll keep it as a possibility in my hip pocket.
Tried Topomax 2 years ago to try to prevent almost daily migraine. I noticed the word loss immediately and my husband noticed that I had trouble with spelling (transposing letters) when we worked crosswords together. (I was usually the one to correct his spelling.) When I couldn’t find the right words when speaking to patients in my office, I knew it was time to give it up. I did experience some hair loss, but had no idea until reading others comments here that it may have been the culprit.
I’ve suffered with migraine since childhood with a respite of several years between childbirth and peri-menopause. They came back with a vengence and, as I said, increased to almost daily. (The Imitrex and Maxalt were causing rebound.) I am several weeks into a regimine of stopping all triptans or anelgesics, following a strict diet to avoid dietary triggers, and taking a small bedtime dose of amitriptyline (10 mg) as suggested by David Buchholtz in ‘Heal Your Headache 1-2-3′. Although it was more than a little scary to do without the triptans, I finally feel human again and have cut the headaches to about one per week. (Those have come when I have inadvertantly eaten MSG). Prior to reading the book, I knew that some foods were triggers, ie, chocolate, red wine and aged cheeses and I had no problem avoiding those. What I learned is that there are many other possible triggers that are often hard to detect because they may not be a problem at times when other triggers (stress, hormones or barometric pressure) are not an issue, but in combination with those triggers may bring on migraine.
I have had to accept that I will not cure my migraine, but I can have some control over the frequency and that is liberating!
I have been on Topamax for 3 years now, with the dose slowly being increased. I am on it for seizure control though. It is doing a great job for that but I am noticing that I too am struggling to find the words I need to finish a sentence, sometimes just drawing a blank! I fumble for words when normally I never had any problem. Whats so frustrating is alot of the time I’m in mis sentence and can’t find the simplest of words!! Also, I’m starting to sort of stutter, which I never did.
I’ve commented previously that I developed stuttering from Topamax use, but following this dialog has made me think of a couple other symptoms that I now recognize. First, the stuttering is only on two or three similar sounding words (“tw..” and “dis” like twenty and distribute) and only under times of extreme stress. Also, I too am at times unable to think of the right word. And, despite stopping Topamax use about 4 years ago, the symptoms have not improved or worsened at all.
It may be a hopeful note for some of you … After a year and three months without Topamaxx, I have regained my ability to read, write, and speak without stuttering or word loss. i don’t know if the recent mild concussion helped, but I can say that after my concussion, I was able to write more fluently than in the previous year.
I tried Topamax in 2007, and immediately started having loud Tinnitus which felt and sounded like a high pressure air leak in my brain. I stopped the Topamax after a couple of weeks due to the high pressure in my brain sensation, and was put on Pamelor which has reduced my migraine frequency tremendously. I continue to have the Tinnitus, which I can’t help but to believe is due to the Topamax.
Topomax caused high blood pressure in me so i got off of it and my blood pressure returned to normal.
Okay guys, it has been a while since I posted any comments; however, i would like to update everyone. Despite the many challenges that i encountered along the way, by the grace of God, i managed to successfully complete the MBA program on December 13. I stopped taking topomax 4 months; however, due to a gradual onset of migraines, three weeks ago i started taking the drug again (50mg). I am doing well, no headaches.
As i have mentioned from previous comments, i have been diagnosed with pseudotumor cerebri (which is under control). My reason for posting my comment today is that i am interested in having Lasik surgery and wanted to know if anyone has had the procedure and if they would be willing to share their experience with me. Specifically how it affected their condition (headaches, vision, etc.) Thanks
Tenecka~ A 40-year migraine sufferer, I had Lasik approx 2 years ago. I noticed no change in my migraines, but am thrilled with my vision. I consider it one of the best things I have ever done for myself, right behind following the 1-2-3 program prescribed by David Buchholz in his book ‘Heal Your Headache’. After years of having increasing headaches and migraine symptoms (to the point 6 months ago, when due to rebound, they were almost daily) I feel alive again! I can actually go weeks now with no symptoms and attended the first family event in years (my daughter’s graduation from nursing school) that was not ruined by migraine! Best wishes with your Lasik!
Anne- Thanks for the feedback. I am really anxious about the procedure. I am supposed to confirm my appointment on 5/18/30 (Monday), so I am sure that you can understand how emotional and overwhelming this process has been for me. At any rate, I have spent the past month trying to find out as much information as i can, before finalizing my decision. My research tells me that i may be a better candidate for PRK, instead of Lasik since the procedure doesn’t create as much pressure to the eye.
If anyone else has an experience that they can share, please feel free to do so. The more the better. Thanks
I have been taking Topamax for the past 7 or 8 years, I cant say that it has made my “fog” any worse than normal. Apart from having Migraine I also have Hemicrania Continua and I also suffer from Fibromyalgia and fibrofog is a well known symptom. Therefore I could not tell to be honest if it was being made worse by the drug. What I do know is that fibro makes you incredibly sensitive to most meds and yet I get no side affects from Topamax at all except in the first 18 mths I did loose weight which is apparently quite normal. I also get pins and needles. But like everything in this life you have to balance it out. What would you rather have that or be bed-bound and in severe pain????
I have a question. I took Topamax 2 years ago for about a year. I started taking it with my regular dr. then when the 100 mg a day dose didn’t help, I was sent to a neurologist. He upped my dosage steadily until I was at 300 mg a day! I quickly lost 35 lbs, and my mind as well! I never knew where I was, I was in a constant “fog”. I was still having migraines! I finally stopped seeing this “quack” and my regular Dr. helped me to get off Topamax. My question is: What about permanent side affects? I still get that “can’t think of the right word” thing, and that was NEVER a problem for me before. I also have some short term memory problems that weren’t a problem before I took this drug! Could the extremely high dose have given me permanent side affects??
“Could the extremely high dose have given me permanent side affects??”
It may take a while to re-wire your brain again, but so far my side effects have almost disappeared after two years.
I have been on increasing doses of Topamax, and now the generic form, for 9 years. I have never had any of the side effects everyone is complaining about. I have speech, and writing difficulty associated with my migraines. The Topamax did not cause mine or worsen them. I have found some relief with it, though not enough by my standards. I am currently on 400mg per day in divided doses. My doc is planning to increase the dosage over the next 3 months to 600. Hopefully I will gain more relief from my daily migraines and constant aura.
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