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! thanx for your very open and honest comments up there. you mentioned that you started stuttering following the use of topomax?..tell me heather, did u have a previous problem with stuttering and perhaps the meds could have severly aggravated it. well thats exactly what happened to me. i had my speech under contol…now i can barely formulate the word. of course theres the memory loss and confusion and lethargy. is there anything else that can be substituted for topamax…plz let me know.
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?
Hi Elizabeth! How are you? I was just reading the Topamax website and came accross your message,was just wondering how are you doing and if you are still using topamax. Please let me know as I am currently using it as an anti convulsant and am suffering with terrible cognitive decline..what is the alternative?? Hope you’re well.
Hi Lucelle: I haven’t been on this site in quite awhile, worth coming back.
I’ve been off the topamax a year or so. I can actually speak somewhat intelligibly, but still have trouble finishing sentences — I can picture what I want to say, but can’t find the words. Don’t know if this is the backlash from topamax or just getting old. I’ve been taking trileptal (for seizures) for a little over a year. Like I say, I don’t have the real speaking problems I had before, but I don’t think I’ve ever gained it completely back. Looking back over this chain of posts, I see my topamax one was almost exactly 2 years ago — and that’s when I backed off the topa becuz of work criticism, and had a major seizure at work — caused SOOO much. But that is when I started on the trileptal (a month or two later) I am much better off the topamax, but I am still stupider than I ever was — either age or aftereffects, I don’t know. I JUST had another seizure episode yesterday, so I’m fresh on the screwiness, but I don’t lose consciousness anymore. The best drug I ever had was dilantan, but it caused VERY HIGH liver numbers (that no one told me to check for, only found it from giving blood!) — with that I was seizure free completely the whole time.
I am not sure if anti-convulsants are the same as antiseizure, but the trileptal is working good with me with only mild episodes occasionally. The topamax worked good, but caused so many cognitive problems — and I do feel so stupid at times now, in simple matters, I think there is hangover (or I’m just old and stupid…)
Everybody else here seems to have headaches, so the dosage level and how often would be very different from us. That might make the difference in the speech.
Hope all is well with you — how long have you had your problem?
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.
I was on Topomax and Trileptal for almost 3 years to treat prolonged partial focal seizures. I was told of some of the side effects, like tingling head and fingers… but not all of them. Now I have 3 very large kidney stones in one kidney, and two in another. Apparently they’re too large to pass and I have to perform an expensive procedure to break them down. I wish I would have know about this before! Also, I have been off the medication for a couple months now but find that my stuttering and mixing words around hasn’t stop, as well as my ability to stay focused has dropped drastically. I feel like all these side effects are much worst than the migraines they’re meant to cure. (There are also other medications available for epilepsy that don’t seem to have all these side-effects)
I was searching for a connection between high blood pressure and Topamax. I have been on 125mg Tomapax for 8 years and can’t get my BP in control. I didn’t know that my inability to retrive words and the language stumble may be a side effect. I did have the metal taste for a few months. Now I am having steriod injections in my neck and an ablation to burn the nerves that carry the pain signal to the brain.
I have been a migraine sufferer for 30+ years and have tried many preventatives that worked a time and then stopped working. Inderal, Sandomigran. I take Naramig when I get a migraine which works most of the time but just lately it has been failing, so the doctor prescribed Endep which didn’t work, and last week I started on Topamax. 25mg first week increasing by 25mg per week until 100mg. He advised I wouldn’t see the results until I was on the full dose but I would experience side effects. Problem was, he failed to advise me what the side effects would be. I have been extremely tired, having difficulty waking up in the morning so thought that was the side effect, last night I was at the shops and for a couple of seconds couldn’t remember where I was. I haven’t been able to think of words when I’ve been writing, normally I have a very extensive vocabularly. I’ve noticed I’ve been feeling very muddle-headed, so finally made the connection and looked up the side effects. What a relief to see it is the drug and not Alzheimers or a brain tumour or all these other things I started worrying about. I guess I persevere and hope the side effects settle down and the migraine go away. I’ll keep you posted.
I would highly recommend that you read the book by David Buchholz “Heal Your Headache, The 1 2 3 Program”. Suffered from migraines for 40+ years and am now off all medications and have cut the headaches from >5/week to <1/month!
Thank you, Anne. I have ordered the book today from Book Depository. Nearly 4 weeks of taking Topamax and I still have the concentration span of a gnat so can’t drive anywhere and have been off work as my numerical skills have completely gone as well and that is what I do for a living. My doctor seems to think the side effects are temporary and will subside once I stabilise on the 100mg dose. I look forward to reading the book, I would much rather be drug free and migraine free. Thank you for the recommendation.
Pam~ I recently met my husband’s cousin, who had just read the book. He had “ear pain” and “vertigo” and despite being in the medical field himself (a nurse anesthetist), and seeking diagnosis from multiple doctors, he suffered for years. He was at a point that he needed walking sticks for his daily activities. He self-referred to an ENT, who diagnosed migraine (although patient never reported “headache” symptoms). The ENT told him to read the book and within two weeks he was able to walk unaided and resume his normal life. He said the ear pain returned within minutes of eating one of his food triggers. Hope the book helps in your case. ~Anne
Just so you may feel better, I have been on Verapamil for going on four years now to treat my migraine. And like you, I began experiencing side effects…. specifically forgetting nouns! My issue is mostly while in conversation, and my brain seems to completely stop until I can find the word. The catch 22 of course is that the dosage that finally worked and toned down the intensity of my migraines, caused me to be very forgetful. I actually ended up going back to my neurologist and asked him to test me for Alzheimers!! (Note, I am 44 years old). I enjoy the lowered intensity of the migraine, but also find the side effects very difficult to deal with at times, and socially awkward!
Same thing happened to me. I was on tons of migraine meds, my memory was so bad I would forget where I was and/or where I was going. I would get panic attacks because I had no clue where I was. Doctors did tests on me for Alzheimers, and more. Never found what was wrong. Very frustrating. I decided on my own to cut back on the meds and my memory started to get better. Just haven’t found anything that really works for the migraines and neck pain yet. I am 45 and have been dealing with this since childhood.
I agree regarding the book. It makes some important conclusions that should help anyone with migraines, especially a newcomer to the search for a cure. In particular, it’s helpful to understand the notion of a ‘trigger level’, and that triggers are ‘additive’. Good luck!
I have nearly finished reading “Head your Headache – The 1 2 3 Program”. Wow. I have had so many lightbulb moment while reading it, it is a wonder I’m not glowing. Besides the rebound headaches from all the drugs I have taken in attempts to ward off headaches which have only been exacerbating the problem, I have been on a diet of migraine triggering food since I was about 16 about the time I started getting migraines. It never occurred to me, or I guess to many migraine sufferers that it is compound effect of the triggers that puts you over the threshold. I have done exactly what the book described tried something once and got a migraine and then eaten it again and not got a migraine to dismissed it as not being a trigger food. I have cut out all band-aid drugs and trigger foods for the last two weeks and not one headache or migraine. Thank you, thank you, thank you for recommending this book. Now I just have to get my doctor to read it. I’ll give you another update in 6 months time.
Pamela~ I’m thrilled that the information contained in the book has been so helpful. Kudos to you for suggesting it to your doctor! It was recommended to me by my neurologist, who heard about it from another of her patients. I have suggested it to many people & have purchased it for a few (since I refuse to lend my copy). I think every migraine sufferer should have the chance to read it, and feel we need to spread the word. It has been about 18 months since I read it and changed my diet. I am back to exercising daily and feeling better than I have in years! I look forward to hearing updates from you!
Being a migraine sufferer since I was 11 yrs. old, (now 47) I can say that Topomax also raised my blood pressure and I never had an issue with blood pressure. Once off Topomax, my BP returned to normal levels. And yes, I do find it is hard at times for me to find words to use where once it was easy. Also with my migraines one of the symptoms with me is slurring of speech if the migraine is not caught in time with medication.
Question to all:
I often wonder can migraines over a lifetime also lead to dementia or Alzhiemers?
I am a 35 yo female who has had migraines since 2007. Mine are complex migraines, with my first one resulting in right sided paralysis, left sided facial droop and the inability to talk. Since then, I have been on gabapentin the most for prevention, with Fioricet and Ultram for abortive meds. My migraines are brought on by weather changes, especially precipitation, and living in the Ohio River Valley is making it difficult. We’ve had rain every other or every third day. My migraines start anywhere from 24 to 48 hours before the rain begins. Due to the fact that I’ve been having pretty much non-stop headaches, I switched to Topamax. I got through the initial side effects of numbness, tingling, word finding difficulties, math problems, etc. The weight loss, increased shedding of hair and inability to drink carbonated beverages stayed though. But here is where I need help from someone – or at least affirmation that I am not crazy. And let me state that I am a graduate of med school, so that might make my neurologist think I am crazy.
I had audiology testing about four and 1/2 weeks ago and one portion of it set off a complex migraine. I was unable to talk for about two hours – until the Fioricet and Ultram took effect. Two days later, I ended up with another complex migraine, a really bad one. Since then, I have had trouble talking. My speech is slurred, almost like I have had a stroke. I am getting off the Topamax – my last pill is in two days. It sounds like some of you have had stuttering problems with Topamax, which a nephrologist that I met told me he had heard of. My neurologist hasn’t heard of it, nor my pharmacists. But, I wonder if I am stuck in a complex migraine as well, making the problem worse. I feel as if my tongue or something else motor related to speech is not working correctly. Since dropping the dose of Topamax, the tone of my voice has gone back to normal, which is good. But, I still have this motor issue.
Yesterday I went to get my Vitamin B12 injection. The nurse at the neurologist’s office told me that they wanted to refer me to a speech pathologist who specializes in neuro issues, which I am fine with. Then she said they also wanted to send me to a psychiatrist to see if I had a conversion disorder. If I am upset about anything, it’s the fact that my speech has been messed up for over four weeks and that I still have this headache that has gone on forever!
It looks like from above, some of you have had the same speech issues. So, I am led to believe that I am not crazy. If any of you read this and have had this issue, could you respond and let me know how you are doing and how you went about taking care of the speech issue. I would greatly appreciate any information that anyone could give. Being a md probably makes them think that I more likely to be making this up or somehow my body decided to do this to cope with something. But, it all started with the headache, the audiology testing and two days after I reached the full 100 mg dose of Topamax. Reading your stories above make me think that I’m not alone in this side effect. If this is happening to more than me, it needs to be reported to the FDA so that it can be added to the side effects list.
Thanks for any help anyone can give! And sorry for the long message and venting. It was quite distressful yesterday to be told this. I hope that all of you who are having trouble with migraines and Topamax or other meds and side effects are doing better or will do so soon!
Hi Lindsay,
I have no doubt at all that the audiology testing triggered a migraine for you. Certain tones trigger them for me too. Believe it or not, whistling is the worst. I can’t stand the sound of somebody whistling – I have a co-worker who does it a lot and I had to ask her to stop. I know she thinks I’m crazy, but the sound cuts right through my brain and the flashing lights and tingling fingers start about half an hour later.
As for the Topamax, it took several weeks after I got completely off it for my speech to return to almost normal. Any change in dosage – even cutting the dose – made the problem worse. I’d stumble over my words, or they’d come out slurred – especially if I were tired or stressed. I still have a little trouble sometimes, but it’s manageable.
Fortunately, I have a doctor who is very understanding and easy to talk to. That makes all the difference in the world.
Marti – in response to your post about whistling – I can completely relate to that! Whistling, and strangely, clapping, set me off very quickly. I have three children and at times, when they sing in the car or start to clap their hands in the vehicle the sound is over-whelming!! I have always thought I just had over-sensitive hearing with no idea that this may be part of the migraine issue! Thank you for your input, I feel less….. crazy!
I am with you Lisa! I have a dad who likes to whistle and sing. When I am around him and he is doing either, if I have a headache it’s torture. I definitely have phonophobia with my migraines, more so than photophobia. I am with you too on feeling less crazy after reading other people’s stories on here. I’m glad I’m not the only one who has had strange side effects. I hope you are doing well! Take care of yourself!
Hi Marti,
First, thank you for your response! I am glad to know I am not the only one who has had this problem! My mom and I called the company that makes Topamax. The woman we talked to looked up speech problems in their reseacrch bank and said that it has been reported – slurred, stuttered speech problems. No follow-up on how patients have done though. She ended up taking a lot of information on me to send in a side effect report to the FDA. At the end of it all, she said I wasn’t crazy, that this was probably the Topamax causing it.
I am off Topa now – have been for a week. My pharmacist said it will probably be two weeks for it to be completely gone. Since the last week, my speech has improved some. It does get worse when I have a migraine though. Mine are strictly weather related and it’s raining every other or every third day in the South – not helping. When I have no headache though, it sounds pretty good. I feel like my tongue does not want to work right – like a motor problem with it. I guess the Topa ended up target that portion of my brain. I am so glad to hear that you have improved – that is really exciting for me to hear after all I’ve been through the past six weeks.
Whistling and loud noises really bother me. I have more issues with phonophobia than photophobia generally. Thus earplugs are a favorite. The part of the audiology test that caused my complex migraine was actually when they shoot warm water into the ear as part of testing the vestibular system. But, I am sure all the tones and beeps I listened to for the first hour plus of testing did not help.
I’m back on Gabapentin for prevention. Have had a couple of times when I have had facial tingling, but no paralysis. These darn complex migraines are just no fun – especially when it comes to trying to find a treatment for them.
Thanks again for responding! It’s comforting to know that I am not the only one out there. If you have reported to the FDA about your speech problems, I would suggest it. It’s the only way things will change! Hope you are doing well! Take care!
I forgot to ask Marti, what kind of speech trouble did you have exactly?
I stumbled over my words and I couldn’t think of the word I wanted, or I’d forget what I was saying in mid-sentence. Sometimes the completely wrong word would come out. And sometimes it felt like my brain was idling in neutral – like my thoughts had stalled and I had to struggle to get moving again.
Hi Lindsay, I don’t know about the audiology test causing the problems, but I can confirm that changing the dose of Topamax caused just as many side effect in the weaning off as they did weaning on. I’m guessing by the timing of the test that you may have started weaning off Topamax as it takes about 3 weeks to get off them completely from a 100mg dose – therefore, it may be a coincidence of the timing of starting to wean off Topamax rather than the audio testing causing the problems.
I have been off Topamax for a while now and feel like a new person, I’m back in the land of the living instead of a muddleheaded blur for the entire time I was on Topamax. It is a powerful mind altering drug and GPs seem to be a bit blase about information regarding the side effects.
I have changed my diet and have also had acupuncture and this has resulted in a reduction of approximately 12 migraines per month to only 2 last month. My GP is still sceptical of the diet change and acupuncture as being the cure, and wanted to prescribe me more drugs, which I am happy to say I have not used.
I will be interested to know whether it was the audiology test that triggered your migraine or the weaning off Topamax, only time will tell, but my feeling is that when you have been off Topamax for a month or so you will feel like a real human being again and the fog will lift. I hope my feeling it right.
Pamela, were you the one who’s diet changes included no aspartame, no caffeine? I thought I remembered reading a comment about that. I hate to think of what aspartame might do to the human body. My mom is allergic to it – really weird reaction to it – so I stick away from it. And I’m really thin anyway, so I don’t need diet drinks. As far as caffeine, I do like it! With my B12 deficiency, I am tired – a lot! And Fioricet has caffeine in it as well. It’s odd though, for when I quit it, as when carbonated beverages started tasting bad, I do not have headaches from withdrawal. All my migraines are weather related – and apparently audiology related. The ENT said no more audiology testing for me – yeah!!
As far as my speech, my pharmacist said the Topomax should be out of my system completely in two weeks total time – I have a week to go today! My speech has already started to improve over the last week, so I am hopeful!
Did you have hair loss? If so, have you taken Biotin and Selenium? My hair loss has slowed down, but I thought I might try them. Thanks for your help and responding to me! Take care!
Hi everyone. I’ve noticed that no one has commented on this since April but I am hoping that I get a reply.
I have been on Topamax 100mg twice daily for a year. A month ago I had a pregnancy scare so stopped taking the medication until I could take a pregnancy test. When my test was negative a week later I restarted the medication. I began to experience muscle spasms/tremors but cannot be sure if they started before or after I started re taking the medication as they began as very mild and have progressively gotten worse. I had always experienced tingling sensations, hair loss, forgetfullness and mild confustion but with the addition of these spasms/tremors I couldn’t bear to continue on it. My Dr perscribed me a tapered dose but I must admit I have come off it a little quicker than I should have from sheer frustration. I took my last dose 5 days ago. The muscle spasms/tremors have not gotten any better and this morning I woke up with tinitus which hasn’t gone away. Could these be withdrawl symptoms? If anyone else has experienced similar symptoms how long after stopping the drug did they find the symptoms went away?
Any comments would be appreciated.
I started to take Topiramate (Topamax) a few months ago after trying several other medications over the past few years. The only thing that had given me any relief in the past had been Sodium Valporate, but I was taken off that really quickly because of the side effects. Every other medication I have tried to date has just made the migraines worse, or has had no effect whatsoever and had such bad side effects that I gave up on taking it. Until I got Topiramate, I had no pain relief other than paracetamol and was having at least one migraine a week which would make me faint, hallucinate, and would force me to stay in bed all day which is not an option when you’re at university and they have a strict rule on attendance, even with a doctor’s note. If you have more than 2 absences in a semester, you’re withdrawn from the course and therefore fail. I was basically told that Topiramate was my last option, as I’ve tried pretty much every other drug that they can give me.
When I started , I was on a 25mg dose in the evening for the first week, and then this was increased by 25mg each week split between morning and evening until I was on 100mg a day.
I’d been warned of the ‘major’ side effects – glaucoma and kidney stones. However not the less severe ones, which are the ones which have actually given me problems. I’ve had problems with panic attacks in the past, and so when I was sitting in a tutorial and my hands, feet and face started tingling and going numb, I thought it was the onset of a panic attack and this induced one. I was mortified to say the least. I’m still having problems with tingling in my hands, feet and face but I’m getting used to it now so it isn’t so much of a problem.
I was also not warned that when it says that there may be some loss of appetite, I would not have any desire to eat at all. I’ve had problems with food for years, so being on medication which has completely removed my desire to eat is not a good thing. For the first month or two of being on the pills, I was eating about 500 calories a day maximum and even that was a struggle, because I felt sick every time I tried to eat.
The other issue I faced was that I got singles around the time I started on the pills. I became incredibly confused and forgetful – I found myself half way to university one day when I didn’t have any classes to go to, with an empty backpack on my back and no idea why I was outside. I went to lectures and tutorials at university during the time I had shingles (I didn’t realise I had it until a week or so after I got it, by which time I was apparently well enough to be in class anyway) and there is a 2 week or so time frame in which I have a really hazy memory. There are some classes I do not remember, and some classes I can remember going into the room, and then I remember nothing else. When I went to the doctor, I was really struggling to explain what was wrong, I could not find the words. I knew exactly what I wanted to say to her but it just would not come to mind. I thought I was going mad! I tried my best to explain that I couldn’t remember and she said I must just be anxious and offered me anti-depressants, but then ended up giving me nothing, saying I needed a holiday. It was a huge issue, and this led to me begging the university for an extension on my essay for the semester, which they didn’t give me. But from reading the comments here, I realise that since the problem hasn’t gone away entirely it could be the pills and not the shingles as I thought it had been.
Over the past few weeks, I’ve developed severe tinnitus, and I can’t get rid of it. My migraines have come back after being free from pain for over a month. The auras never disappeared, however I’d not had any days where I couldn’t get out of bed until the past few weeks. I’m debating whether to come off the pills if they are causing the confusion, memory problems and inability to speak properly, especially since I’m training to be a teacher and I’m going on my first placement in a few weeks. But on the other hand, not having migraines has meant that I’ve actually been able to attend classes for a whole week without having a migraine interrupting my studies for the first time in years! It’s meant that I’m not falling behind everyone else and I don’t want to give that up.
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