Topamax may cause language disturbances
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.
28 March 2008 @ 11:44 am
I’ve taken Topamax for 3 years for migraine and I believe I have a real problem with language disturbance. My friends and family say they don’t notice but I am frustrated with my inability to come up with the word I want to use at a time when I am migraine-free. It’s like what I experience when I have a migraine.
I’ve quit writing because of this problem, it takes me forever just to leave a comment on a blog….like this.
That’s in addition to the other side-effects that I have experienced with this powerful drug.
And why have I taken it for 3 years?
I no long have a daily migraine. So I was having language problems anyway…what a quandary. (Is that the word I was searching for?)
28 March 2008 @ 7:54 pm
Thanks for the comment, Suzie. Yes, I think “quandary” is exactly the word you were searching for! And an appropriate word it is!
I’m curious – did you have any language problems before – due to the migraine attacks? I have that problem sometimes.
Hopefully you will someday be able to change treatments to something that has less side effects – or maybe go off it all together!
28 March 2008 @ 9:27 pm
I have just discovered this site tonight. I am doing personal research to find out what alternatives I might personally have due to the very problem you reference regarding language disturbances while taking the Topamax. It is quite upsetting to me personally and professionally. I might add that it also makes feel in recent months like I am in fog of sorts during the work day.
I have taken Topamax for 4-5 years now. My specialist is working with me to start to lower the dosage to see if that will help. This has been a problem for the last couple of years just continues to worsen.
I have found relief from regular migraine pain but must say is not certain – I do still experience headaches that are difficult to control.
29 March 2008 @ 7:05 am
Thanks again, Lori and Suzie both! I see we’ll have to keep looking at Topamax, and alternatives to it. It must be such a big challenge living with side effects like these. But it also demonstrates how debilitating migraine is, that so many people are willing to put up with the side effects!
1 April 2008 @ 7:45 pm
Took Topamax for only a wk and felt like I’d had a stroke; blurred vision, tinnitus (which continues 1 1/2 yrs later by the way), inability to find or remember the right word, so disconcerting I stopped the medication. I now take Butterbur (Petadolex) twice daily with definite reduction in headaches.
2 April 2008 @ 7:02 am
Glad to hear it’s working for you, Connie! Here’s more about butterbur here.
6 April 2008 @ 4:56 pm
I was taking Topamax for 2 months, and during those two months my migranes were unbearable, and i had the hardest time concetrating and talking. It was like my brain would keep going, even when i wanted it to stop. Since then, the doctor has switched me over to an anti-depressant, and during this time i have felt depressed and the migranes are still unbearable. is there any sugestions of what i should take?
10 April 2008 @ 4:21 pm
Genevieve, you certainly have a bad problem here. In some people when they first start taking antidepressants they actually feel more depressed before they begin to feel better. Some anti-depressants, the SSRI type, may make migraines worse in a small subset of the population, while the TCA anti-depressants usually help migraines.
There are lots of preventative meds that you could try, but they all have some potential side effect, although I think that topamax is the worst.
First try magnesium, at least 200 mg/day as many migraneurs are deficient in magnesium. Aslo try a B-Complex vitamin at 100mg per day. Theses have been shown to help a lot of people with NO side effects as they are just vitamins. Flax seed oil and Omega 3 supplements have been shown to help as well. None of these supplements will make you depressed.
If that doesn’t work then you need to try other prescription medications. I would recommend Epival especially if you still feel depressed and if you still feel like your brain is constantly going.
10 April 2008 @ 5:06 pm
Hi Genevieve,
Brian makes some good points (thanks Brian!). I would like to think that most people that are on Topamax have already tried many of the other natural treatments and less “powerful” medications, but that’s not always the case.
You can read more about magnesium here. MigreLief is one of the best researched combinations of magnesium, vitamin B2 and feverfew. There are a lot of links to other options here.
Do be sure to give the medication time, though, now that you’re on it. Most often these are not instant fixes, but take from a few weeks to a few months to really kick in. You’re doctor can guide you in that area.
21 April 2008 @ 6:56 am
I must admit I’m thrilled to read this. Could Lamictal be causing the same side effects as Topamax? I’ve been complaining about this language/recall stuff for a while, but if it is the meds, I’m scared to go off of them. I did have problems before, but not as bad I don’t believe. I am finally feeling good after being diagnosed and only occasionally have a migraine now. Any thoughts? Thanks
21 April 2008 @ 9:57 am
This is interesting. Topamax has helped my uncontrollable migraines tremendously. In the past, during a migraine phase my speech would slur like I was drunk and I would use incorrect words. I do notice that since taking Topamax for the last couple of years that I have to concentrate on my speech more than usual and will, on occasion, have trouble finding a word or will use an incorrect word out of now where. This will usually occur with fatigue and headache, however, the extreme benefit of migraine control with Topamax outweighs any side effect.
21 April 2008 @ 11:00 am
I was on Topamax 2 years ago for Basilar Migraines. After taking the drug for 2 months and many side effects, I awoke one morning studdering.
I went to my GP doctor, he looked at me as if I was crazy! He told me he had not heard of anyone or any medical white papers telling of this side effect. At first my family thought I had a stroke after a bad migraine. After stopping the medication my language returned to normal.
It’s great to know that the side effect was not just my imagination!
21 April 2008 @ 1:47 pm
Hi All:
I took Topomax for three years and was in a constant fog, couldn’t concentrate, could not find words and was just overall depressed and often suicidal. I still suffered migraines a couple to times a month.
I decided to stop taking the Topomax, antidepressants and all other medications. It took about 4 months to get off of everything. It’s been about 4 1/2 months and I feel incredible (good). I can think again, my migraines have been very few (about one or less a month). I feel like I have my life back.
I can’t tell everyone that not taking any medications will be better for them, but after 30 years of migraine medications (too numerous to remember) and living in an altered world/fog, I finally feel like a real human being again.
22 April 2008 @ 3:10 am
I took topomax for six months for my migraines. Although the side effects out weighed the out come. I became severely depressed and would cry uncontrolably. My speech was much slower and trying to find the right words that I wanted to say was so frustrating and embarrasing. I was on 100mg a day. I had many comments from friends and family. Such as: Are you ok?? You seem to be different and like you are in outer space. Not the girl that you used to be. I became distant from people and going out. My husband just did not know what to do. I would recommend that if you are thinking of trying Topomax, do some research and heavy thinking about this drug. It is very powerful and could change you all together. I have been off of Topomax now for nine months and will never take Topomax again. My life is so much better with out it. I would rather have a headache!!
Donna
22 April 2008 @ 11:17 am
I’ve been on topamax for almost a year now. My migraines became unbearable and topamax has been a blessing and a curse. When I first started taking it, I felt I was “drugged” and at times almost scary; very forgetful, confused, not only did words escape me but often times I couldn’t concentrate on what was being said to me. One day I got into my car before I started driving, I had to remind myself what side of the road I was supposed to be driving in! I told my md. who dialed my dosage down and migraines returned. Slowly I returned to 100mg per day and the weird “mind game” symptoms did not return but YES, I have trouble w/ speech and loss of the “right” word (like now), especially when I feel stressed or in social situations. I forget how to spell words etc., it’s frustrating. However, blinding migraines that lasted 3-5 days 2 to 3 times a month were terrible.
My main concern now is that I had the flu 3x’s this winter and just heard that topamax has been known to cause repiratory infections, which I had. That really concerns me. I’ve also had some nausea lately and stomach upsets; which I feel may be related to topamax as well. I’m between a rock and a hard place. I can’t live with those migraines, yet the side effects are no small matter. I wish it were “merely” a loss of words; a much as I mourn them.
25 April 2008 @ 8:32 am
After years of worsening migraines that became more frequent and trying every new product as it came on the market, I started taking 200 mg.Topamax daily about 5 years ago. I experience language disturbances off and on along with other symptoms, but I don’t have migraines on a daily basis any more and for me that’s worth it. I see my neurologist annually and we discuss the frequency of my headaches and my symptoms and decide whether or not to continue the Topamax. So far he hasn’t suggested anything that will replace Topamax with less severe side effects so I’ve stuck with it despite the many times I’ve done or said something really stupid at work!
By the way, what’s all this talk of weight loss being a side effect? The one side effect I would welcome and I haven’t experienced it!
25 April 2008 @ 12:55 pm
Great discussion here – it’s interesting to hear about various experiences with this drug. Sounds like not too many people have had “minimal” problems with side effects – it’s more a matter of “is it worth it?”
Yeah, Lonna, weight loss – not happening with a lot of people. Not one of the most common “side effects”, and with the other issues the drug has it’s never taken off as a “weight loss drug”.
8 May 2008 @ 10:28 pm
I took Topamax for over 2 years and, while it started out working well for me, my migraines returned with a vengeance. I take (and continue to take) two types of migraine treatments as well: Tramadol and Relpax, because I experience several types of migraine and have done so since my first (remembered) migraine at 10 yrs old. Mine are not hormone, stress, sleep, or food related, but the change in the barometer can drastically affect me. Topamax was the last resort for me, besides herbal remedies, and it was probably the one with the worst side effects. I experienced the most commonly discussed side effect – what I call “tip of the tongue” syndrome – where you know the word you need to use, and you know that you know it, but it will just not come out of your mouth. Even this effect on the linguistic center of my brain did not stop me though, as it worked. It stopped working several months ago, despite the increased dosage (200 mg/day) and finally led me into a depression so black, I was practically begging my doctor to help me get off of it. As soon as I started the weaning process, I felt better and now am completely off of it. One effect I noticed just the other day – my hair feels thicker than it has in the past year. I didn’t notice until it felt thicker again that anything had changed. My migraines are right back to where they were when I first started – more than 1 per week on average – but I can finally speak my mind!
4 June 2008 @ 8:54 pm
Hi there
I have been having migraines 1-3 times/month and daily headaches for approx 2 years.This started just prior to our 2nd child being born. I am reluctant to try the topamax due to side effects. Magnesium does not seem to help and I just don’t know where to turn to next. The neurologist feels that they are hormonal but how can I change that! I have started some herbal supplements as well but the headaches and migraines just don’t seem to subside. I am at my witts end and not sure what to try next.
16 June 2008 @ 11:02 am
Susan,
I have been battling migraines for a few years now, recently they have changed and hae become more severe, I tried Topamax and I had major side effects, keep trying to find treatment, it doesn’t seem like there is a lot Doctors can do right now. My latest migraine came with paralysis, scared everyone. Apparently this is also a symptom. CRAZy. Keep searching.
8 July 2008 @ 7:11 pm
After taking Topamax for about four years, I am coming off it this summer, 25mg a week from the full dosage of 100mg that I’ve been taking. While the migraines I’ve had all my adult life – I’m 64 – have almost completely disappeared, so has my facility with words. As an English and history teacher, it’s been rather disturbing to struggle for vocabulary that was well known to me as a ten year old. Seeing family and friends slightly older than I am being plagued with normal ‘senior moments’, I’ve decided I need all the brain power I can muster for the coming years. Other side effects have been difficult too; loss of appetite resulting in no enjoyment of food though I weigh the same as I always have, tinnitus, and most of all, enormous hair loss. Though the last two are common with aging, the hair loss especially has been very linked by many to Topamax and I had massive amounts of hair when I started taking it. I’m nervous about migraines becoming more frequent, but enough is enough and Maxalt works great for me when I do get a headache. It’s going to have to be my plan B.
26 July 2008 @ 1:08 am
I started taking topamax a month ago and have had lots of side effects. Numbness in my hands and feet and problem with my brain processing. Like I go to thread my sewing machine which I have done a thousand times and I know step 1 and 3 and 4 but I just cant remember step 2. or I just can’t think of what I’m trying to say but I know it;s on the tip of my tounge. My Dr. said I was having a nervous breakdown and that I dont want to get better. But I dont feel Like i’m having a nervous breakdown I feel like everyone else on this web site. It’s a relief to know I’m not crazy.
26 July 2008 @ 7:11 am
I really appreciate all your comments! Although everyone doesn’t have major side effects with Topamax, it’s helpful to hear what many of you have experienced. Thanks!
27 July 2008 @ 4:16 pm
Hi All
I stumbled onto this website looking for sites about language disturbances. I have a 31 yr old son who suffered a traumatic head injury 8 years ago. Since the injury he has suffered from a seizure disorder. His neurologist prescribes Topomax 200 mg twice a day for the last 5 years. All his doctors told me that the aphasia is from his head injury. Now after reading what others have written about this medication, I am very very concerned. Thank you so much everyone ! By the way he has no appetite, goes all day without eating. Over time he’s lost about 60 lbs and kept it off.
30 July 2008 @ 6:21 pm
Hi Everyone,
I have been on Topamax for five months now. I do experience some side effects. Tingling in the hands (goes away if you drink enough water) Loss for the right words (just laugh that off). Have had depression all my life no worse. Loss of appetite. Have lost 20 pounds. Don’t crave sweets or fattening foods any more. eating heathier. My migraines have almost completely dissapeared. I am on 150mg and I take it at night. I am finding alot of people who are having the zone out feeling are takeing the meds in the morning. Since it makes you drowsy taking it at bedtime is the best option for me. I will continue on Topamax as long as I need to. It works and the side effects I can live with. None are that bothersome. I wish you all well on all of your choices you will have to make for your migraine releif. I would wish that it would work for you as well as it has worked for me.
1 August 2008 @ 5:58 pm
I have been taking topiramate sprinkle capsules for 2 years now to control my automatism epilepsy and night time grand mal seizures. I am also a migraine sufferer since age 11 am 45 now but haven’t had one migraine since taking the drug and I used to lose my vision and my speech so I am very happy with my medication as i have had 4 others and none before have worked aswell for migraine although I didn’t know it was a migraine drug until I was diagnosed it for my epilepsy!.
21 August 2008 @ 11:33 am
My language problems were very disturbing. Word finding problems never ended and increased with dosage (I was on it for several months). Finally, as the dose was upped, I started talking like a robot. Then my hair started falling out and I became extremely depressed and had rages, and finally decided it was the drug. I tapered off and the real me is back. Luckily, being on it for a while whacked my chronic migraine out of the ballbark and I am much better. Not sure I would ever go back on it; I talk for a living.
21 August 2008 @ 11:56 am
I took Topamax 300 mg for three years before my word-finding ability became so impaired that I couldn’t function well at work. I was unable to recall terms directly related to my line of work, couldn’t think of words quickly enough to speak in public anymore (part of my job) and finally, the straw that broke the camel’s back was my blowing a job interview to replace my supervisor when he left. If I’d been able to communicate effectively, I should’ve been a shoe-in for the job…however, the interviewers had to feed me information about my accomplishments. I was mortified at how badly it had gone because I simply couldn’t put the word together to describe why I deserved the promotion. I called my neurologist the next day and told him I wanted to wean off of it because I simply couldn’t function as an intelligent human being on that level – even though it reduced the frequency of my migraines better than anything else ever has. If it had gone away within 6 months, I probably would still be on it – but the symptom lasted longer and became intolerable.
It’s a real disappointment, because nothing else has worked as well…but I’m a professional with a career to maintain…and I need to be able to think and communicate clearly.
21 August 2008 @ 12:31 pm
I took Topamax for a summer, and the only noticeable effect was severe anomia. I could even see a picture in my head of all the letters in a word, but could not for the life of me put them in order and say the word.I really felt like a part of my brain that I cherished was just shut off.
21 August 2008 @ 6:29 pm
I took Topamax for a little over a year. I was having severe daily migraines – I honestly thought I had a brain tumor. I took so much Alleve I was throwing up blood. The neurologist started me on Topamax and I couldn’t think straight or speak coherently, but my head stopped hurting. I felt loopy and and frustrated at times, but it didn’t matter becasue my head didn’t hurt anymore! I had forgotten what it was like to be pain free. The side effects got better with a little time, and I was eventually able to stop taking the drug. I still have an occasional migraine, but I don’t have the super-severe ones like I did before the Topamax. The side effects shouldn’t be taken lightly, but the medicine saved my life amd I’d take it again without a second thought if I needed to.
22 August 2008 @ 1:39 am
I have been on Topamax for 9 months, 100 mg a day. It has helped my chronic daily migraines somewhat, but the side effects are not tolerable. The cognitive side effects make me feel like I am losing my mind. I can’t remember what I did yesterday, struggling to find the right word all the time, etc. Also my hair is falling out. Mu neuro is switching me to Keppra.. he said it does not usually cause these side effects.
22 August 2008 @ 3:21 pm
I have taken Topamax for nearly a year now having suffered from hemiplegic migraines for 18 years. I consider this a miracle drug that has given me my life back. But, working through the side effects was a nightmare. Speech difficulties left me describing basic items – plates were those “round white flat things to put dinner on”; pens “skinny things to put words on paper”. Weird thing was I knew the exact word in another language (i’m bi-lingual)but I lost my mother tongue.
I also lost 21kg(from 77kg). Another problem was driving, which fortunately only lasted 4 days. I forgot whether green or red traffic lights meant stop or go; and I couldn’t remember where my parents lived!! Now, without migraines, I can walk normally, shop, carry things, and best of all, I have a full time job again. Life’s great. Anyone who is having doubts about this medication, try it and work through the side effects but don’t do it alone. There may be times you feel you are going crazy and a good support network is essential. Topamax worked for me and now the only side effect is pins and needles for a while after I take each pill. That’s nothing.
26 August 2008 @ 9:59 am
I wish I had discovered this discussion earlier. I was put on Topamax along with Imatrex in Se[tember of 2007 when I suffered a migraine-like headache that lasted over 7 weeks. Rather than somnolence, I didn’t sleep for the next 9 days, and this was at the start of the school year. Compounded the exhaustion and anxiety from sleeplessness, I suffered the anomia, which greatly impaired my teaching ability. I thank God that that my classes were so understanding and helpful. I had the pepper tongue and the numbness that cycled around my limbs, but the worst part was that the anomia wasn’t limited to speech. I lost the ability to encode and decode language … that is, read and write. I was a natural speed-reader, comfortably reading over 1200 words a minute; however, I was so badly impaired I couldn’t finish reading a short paragraph of 100 words in a minute, and when I did finish it, I hadn’t understood what it said. It took me sixteen hours to write my lesson plans each week.
I was taken off Topamax after ten weeks, when the headaches returned. However, while the anomia eased up, I had to reteach myself to read and write. It was as if my brain had been completely rewired, and I have to train myself from scratch.
The heartbreak for me is that I’m a writer. I had just had my first professional breakthrough. Now I’m a one-hit wonder. I have no idea when I’ll be able to compose a complete story again. I’m also a musician responsible for transcribing music, and I wasn’t able to do that either! I had to count lines to figure out what the note was, and then, I couldn’t get it onto the computer to transpose it.
It made me think that maybe using the computer wasn’t the best way to compose, either text or music. I find that using a pencil helps, as does cursive over printing. If anyone else has had this problem, you might try it.
27 August 2008 @ 12:02 pm
Hi All
I thought I was all alone crying in a ball . I have been on Topamax since the end of April and I have lost 20 pounds and the ability to spell and come up with names and words. I actually thought I was loosing my mind . I also keep getting told not to be so negative and not to be so sensitive.When I was on 50 mg things seemed great now up to 100mg twice per day and I think perhaps its too much.. It sounds like from what everybody has been saying that by now there should be way more of a balance??It seems my migraines are turning into cluster head aches or now I have both ? Can I have a holiday? I fell like I have tried every thing else and there are some many things I am allergic too…part of the reason for the increase … allergy season. what do you guys do?
27 August 2008 @ 3:04 pm
I took Topamax (25mg daily in the morning) for a few years to prevent migraines that were lasting 3-4 days. I also experienced many of the side effects: inability to find the right word (maddening!); losing my train of thought while speaking in public; tinnitus (which also persists to this day); slight weight loss; hair loss. My doctor said he did not know of a connection between Topamax and tinnitus, but at my request, he switched me to 250mg Keppra daily, along with 250mg Depakote ER (which I had been taking in conjunction with Topamax). I agree that the side effects have been disheartening, because I still think that the Topamax/Depakote combination was the best preventative. I still had migraines, but they weren’t as debilitating or as long-lasting as before. I haven’t noticed that Keppra has helped much.
I take 2.5mg of Amerge when I do get a migraine, and, if taken soon after the attack begins, it is extremely helpful in eliminating the pain.
Magnesium supplements didn’t seem to help much.
Good luck to all my fellow migraine sufferers, and please post any new info about new meds!
2 September 2008 @ 12:59 pm
These comments are so helpful – thanks everyone. I hope to write more on this topic when I’ve had a chance to do more research.
4 September 2008 @ 10:48 pm
Say what you want about Topamax. I have been taking 300mg for 8 years now. I also take Verapamil, Imitrex, ibuprofen, Fioricet, Tylenol #4, Phenergan, Flexeril, and at times Valium. I suffer from migraines with aura, cluster headaches, and tension headaches. I have 3 to 4 migraines every two weeks. If it wasn’t for my Topamax it would be 3 per week. Before Topamax, I was barely surviving. I had migaines before 2000, but they were not as often, they became more intense after a sever head injury. I would rather give up my pain med back up and my Imitrex before I give up my Topamax. Oh, by the way, migraines do interfere with speech, you look at an object go to say it and say something totally off the wall. My children find it funny. I have learned to live with it.
28 September 2008 @ 6:36 pm
Hi, I have been on Topamax for over a year now for Basilar’s Migraine. I was doing well with it. I have to decrease it when I feel well and increase it when I start with the dizzy spells and headaches and I, too, have the inability to speak right after taking the meds. It seems to last for a couple of hours right after taking the pills. I also seem to hear people talking and look at them and just don’t catch the conversation. It’s like I am in my own world. Very strange. Everyone laughs it off saying I am having a blonde moment, but I know it has to be the medication. Reading all the stories confirms I am not going nuts. Thanks for the info.
30 September 2008 @ 9:43 am
Thanks for your comment, Jennifer. Yes, that’s a tricky thing – migraine itself can interfere with speech. I have that problem myself, and can relate.
Thanks, Judy, for your comment. It may be that Topamax makes a problem worse that migraineurs are already prone to.
2 October 2008 @ 7:44 am
I was put on topamax because my body does not do well with the medications that mess with the heart/breathing/bloodpressure/electrolyte medications the doctors try and bully ya with at first. Them kind landed me in the hospital. SInce I flat refused to try them kind again, it was suggested that I try ..stuff that would mess with the “nervous system”..topamax…
I took mine at bedtime, lots of water ..and cranberry juice..I exercise, and work out too…very active and outgoing..UNTIL topamax..
With topamax..I was in a fog, didnt want to be around anyone..didnt want to drive or go anywhere..didnt want to eat. IF I tried riding bike, I sweated alot, and felt ill..even though I normally drink tons of water anyway.
I do my wii fit exercises, same thing..
I couldnt concentrate..couldnt speak right, couldnt finish sentences..forgetful..
(more than usual), ..and I was bawling off and on..(down in the dumps)
Still had a vague headache. I felt like I had a large tennis ball stuck in my stomach that didnt want to pass down…….though there was nothing there..and I was felt like I wanted to vomit all the time. DIzziness worse than I normallly had..PINS and needles? not in hands/feet..around my ankles area…
MY joint pains came out in full force too…both hips, my right wrist…I can barely walk now the longer I took that pill…
IT is a good thing, that I am a traditional housewife..meaning..Im at home..(but I still have much to do..I dont just lay around/sit on my buns)…
IF I had to work..I couldnt do it on this medication…Id be applying for disability..
I called my neurologist..and told her..that Im off that danged pill..BUT..Ill keep the Maxalt…THAT works just fine!
2 October 2008 @ 3:01 pm
Heh heh – I wonder if you’ll get a response on the “housewife” comment? 😉 But I do know what you mean – it’s different if you have to constantly interact with people. Thinking of what to say under pressure – trying to be “sociable” when you’re feeling like that – not easy.
17 October 2008 @ 2:39 am
Much like many of you, i only recently stumbled across this website, and my only regret is that i did not find it sooner. A few weeks ago, i mentioned to my parents that i should probably find a support group. I was diagnosed with pseudotumor cerebri in 2003, at the time i was treated with a lumbar puncture (to immediately relieve pressure), acetazolamide, and topamax. I took the topamax for 6 months, and lost about 35lbs within the first 3 months. I was a Grad student; however, i quickly fell prey to the drug’s awful side effects (memory loss, difficulty concentrating, loss of appetite,restless, and mildly depressed), which eventually lead to my withdrawal from the program. I discontiued all medication in 2004. Over the years, i have had moderate setbacks (once a month.) In 2007, I decided to give Grad school a try once again, unfortunately, i have suffered from yet another relapse (just 7 weeks from graduation.) Three weeks ago i was put back on acetazolamide, and just yesterday my doctor prescribed Topamax (I am also scheduled for a lumbar puncture next week, which will require an overnight stay.) I am really reluctant to take the Topamax as this is my last semester and i have some very big projects and presentations (I just don’t want to embarass myself or my team)
22 October 2008 @ 7:08 am
Hi Tenecka – thanks for the comments. Sorry to hear about all you’ve gone through with pseudotumor cerebri. From what I know it can be a challenge to treat. Topamax is a common prescription.
Talk to your doctor about your concerns and see what other options you may have.
24 October 2008 @ 10:41 am
After finding this information, I am crying with relief. I’ve been on Topamax for 6 month now, and reported my memory loss, vision problems, loss of appetite, and difficulty in speech to my neurologist just last week. His response was that I had not ever mentioned these symptoms to him before and simply dismissed my concerns until I went into detail of how these problems have affected my life. I found myself sitting there tying to convince him that I was not crazy, that I sincerely felt that my memory loss and speech problems were very real and very disturbing to me. He finally decided to schedule me for a 4-hour Neurophychological Test. I now plan to call him to discuss an alternative to the Topamax and to expensive testing. Thanks for the info.
27 October 2008 @ 11:25 am
Janis, I’m so glad to hear that we could be a help! And I hope that a change in medication does make a difference.
Symptoms like these are often hard to explain, especially because we (the patient) are often confused ourselves about what’s going on. It’s so helpful to hear other people’s experiences – it clarifies what’s going on and helps us to articulate our own symptoms!
6 November 2008 @ 4:43 am
Hi everyone,
I write to you from the UAE.
I’ve suffered from migraines and vertigo on and off for the past 8 years. I’ve just had my first longest continuous migraine attack – 13 days. I’m just starting to feel better. I am an ESL teacher and have had to stay home on sick leave for the duration.
The new neurologist I’m seeing now (for the second time) prescribed Inderal and Topamax. I started on 25 mg of Topamax 5 days ago and just started on 50 mg this morning when I felt the tingling in the fingers and figured out it was a side effect and decided to check out the side effects. Boy am I glad I stumbled upon this website.
I have you all to thank for helping me decide to stay off Topamax. I don’t think I can risk the side effects of this drug. I don’t think I have exhausted the other possibilities yet.
Thank you, thank you, THANK YOU! 🙂
7 November 2008 @ 12:08 pm
Thanks, Lara – and thanks to all of you who have left very helpful comments here! This is your website. 🙂
26 November 2008 @ 1:31 am
Reading through all the comments, I am not sure if my husband’s side effect was brought out. He has a lot of them on Topomax. The most disturbing for him is the random inability to move his jaw and perform proper speech. He said its like his jaw clenches down and he is forced to speak without moving his mouth or jaw very much. It can happen all of a sudden and last for a while or a minute. He also does not socialize as much as before, trouble concentrating and processing things, quick tempered and others. He is finally deciding that he has to go off this drug. I will be so relieved.
29 November 2008 @ 10:25 pm
I’m on my third run with Topamax and had my dose increase 3 months ago to 75 mg twice a day. Word memory deficit is horrible; I can’t put together sentences; appetite is poor, so I’ve lost some weight; my “word bank” is overdrawn, as I like to say. . . and I’m in seminary–bad place for that one. I failed my first test this semester (of course, an essay test!) and thought it was just me. Now I’m convinced the med has something to do with it. I’m also experiencing a depth of depression that kicked in after the dosage increase. My migraines frequency has decreased dramatically, which has been the best, but the rest of the package(emotional and cognitive symptoms) is rough. My neurologist looked at me sideways when I told him about the memory stuff; I wonder if some of our docs really ‘get it”. I really have to weigh whether I can continue with this much longer. Being “relatively” headache-free is great, but if I can’t put together a coherent thought for a paper– and that’s my “work” for now– what good is that? Good to know I’m not the only one with these side effects. thanks!
17 December 2008 @ 11:21 am
I just recently started taking Topamax for my headaches and noticed within just a few days that I was having trouble forming sentences. I thought this was possibly because of the hussle and bustle of the holidays btu the more I read about this the more I am believing that it is indeed the medication. I am only taking the medication as a trial right now as my doctor thinks I may actually have TMJ….wish me luck.
29 December 2008 @ 10:31 am
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.
29 December 2008 @ 10:13 pm
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.
30 December 2008 @ 7:58 am
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!
30 December 2008 @ 11:40 am
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…
31 December 2008 @ 7:35 am
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.
31 December 2008 @ 10:54 am
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!
31 December 2008 @ 6:14 pm
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!
31 December 2008 @ 9:22 pm
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!
1 January 2009 @ 12:07 pm
Hi
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 🙂 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)
Happy New Year and Take Care
Karin
1 January 2009 @ 5:55 pm
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.
2 January 2009 @ 11:57 am
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!
2 January 2009 @ 1:53 pm
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?
6 December 2010 @ 4:54 pm
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.
9 January 2009 @ 8:28 pm
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!
26 January 2009 @ 5:34 pm
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
4 April 2009 @ 7:55 am
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!)
13 April 2009 @ 1:55 pm
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?
8 April 2011 @ 6:22 am
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.
9 April 2011 @ 9:05 pm
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?
11 September 2012 @ 2:54 am
I took Topomax for about a year… At the time, I accepted the speech issues because the crippling migraines & mood swings were vastly improved, but I was quickly rendered near-mute.
Many years off the drug, I still stutter & feel dumb when trying to speak, despite three years in state debate finals in high school.
I had given up on speaking, & learned to focus my energy on communnicating via text & handwriting (though it was a really rough issue in the first years of marriage), but the funny thing is– I got GREAT at math, something I struggled with for YEARS….
No solution, ten years later, but I found a home teaching SpED…. I “get” my kids like no one else, & math?! It’s fascinating,& I LOVE teaching algebra… But I have to say, it’s a little bit of a consolation prize, given my “before” language capabilities.
This drug is my singular reason backing being a last resort for drugging kids…. I’m 100% sure I would have finished college & pursued further education had Topamax never entered my system. And like many of you, many doctors have tried to persuade me the drug wasn’t responsible, but then, it was still very new…
21 April 2009 @ 5:56 am
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.
21 April 2009 @ 10:26 am
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!
11 May 2009 @ 5:46 am
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.
11 May 2009 @ 4:33 pm
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.
12 May 2009 @ 9:04 am
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.
13 May 2009 @ 9:03 am
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.
15 May 2009 @ 8:49 pm
Topomax caused high blood pressure in me so i got off of it and my blood pressure returned to normal.
16 May 2009 @ 9:56 am
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
16 May 2009 @ 10:35 am
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!
16 May 2009 @ 12:16 pm
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
18 May 2009 @ 6:29 pm
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????
12 August 2009 @ 12:20 pm
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??
13 August 2009 @ 7:31 am
“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.
13 August 2009 @ 12:58 pm
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.
28 June 2010 @ 2:23 pm
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)
10 August 2010 @ 9:15 am
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.
10 September 2010 @ 3:00 am
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.
10 September 2010 @ 11:53 am
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!
29 September 2010 @ 6:09 pm
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.
30 September 2010 @ 11:23 am
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
30 September 2010 @ 11:49 am
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!
21 October 2010 @ 1:45 pm
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.
30 September 2010 @ 4:10 pm
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!
21 October 2010 @ 2:02 am
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.
21 October 2010 @ 9:07 pm
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!
21 October 2010 @ 6:54 am
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.
21 October 2010 @ 6:57 am
Question to all:
I often wonder can migraines over a lifetime also lead to dementia or Alzhiemers?
1 April 2011 @ 9:30 am
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!
7 April 2011 @ 5:52 pm
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.
8 April 2011 @ 7:18 am
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! 🙂
9 April 2011 @ 7:34 pm
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!
9 April 2011 @ 7:31 pm
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!
13 April 2011 @ 9:21 am
I forgot to ask Marti, what kind of speech trouble did you have exactly?
14 April 2011 @ 5:20 am
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.
8 April 2011 @ 5:12 am
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.
9 April 2011 @ 7:20 pm
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!
19 June 2011 @ 1:45 am
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.
15 January 2012 @ 8:37 pm
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.
28 February 2014 @ 12:09 pm
I’ve been taking Topamax 25mg twice daily for about two years. It has helped with migraines and the weight loss was a bonus. ÃŒ do miss having an appetite though:) . A big surprise was that chronic shoulder pain that I had been struggling with for years suddenly disappeared when I started taking Topamax. Not sure how that came about but its a BIG plus!
While I did not notice such a dramatic effect as others, I did experience some speech side effects, or rather the missing word syndrome. And thank goodness for spell check which I hardly ever needed before. I attributed this to fatigue. What worries me now is that I just came back from a medical check-up and my blood pressure is high for the first time in my life. There is also blood in my urine which concerns my dr. Having read that high bp and kidney stones are side effects of Topamax, I’m getting worried. Not sure if its worth it anymore.
2 January 2015 @ 12:00 pm
I agree with everyone on the WHISTLING. There must be a particular pitch or tone that just sets off a migraine. It immediately puts me into panic mode!
Also, I have the language difficulties where I have word finding problems. Additionally, I will confuse parts of words and mesh them
Together – eg. when I should say “Hayden and Landon” it comes out as “layden and Handen”. Same thing with Hayley and Taylor. It becomes tayley and haylor. It’s a routine thing with pairs of words. I have to make purposeful effort to think and then even then, sometimes the words still come out wrong 🙁
4 December 2015 @ 3:13 pm
My name is Rebekah. I am 17 and I started Topamax 3 weeks ago I have spent the past 3 days looking up the effects of Topamax because I want nothing more than to NEVER talk again. I stutter almost 24/7 now and I HATE it. I would much rather deal with the migraines than this medication. I can’t remember anything. I looked at my teacher that I have had for 2 years and I didn’t know her. It takes a bit for me to remember how to write my name and I stutter my doctor has been working me onto 100mg of Topamax for the past 3 weeks 25 mg for 1 week 50 mgs second week 75 3rd week and 100 4th week. I can’t deal with it. I try to talk to my best friend and I say the same words seven times and the same sentences 5 times in30 minutes before being told I have already said it. I’m embarrassed to talk, to be in my school and get asked a question or to read out loud while on this medication but without it I’m in pain for 3 months at a time or more. Next week I’m being (is it weaned?) onto 50mg in the morning and 50mg at night. I feel trapped in my own body. Stuttering, and unable to spit out what I mean or even write it down because I’m unable to due to Topamax.
5 December 2015 @ 8:22 pm
Rebekah – I know exactly how you feel. I had the same problems several years ago when I took Topamax. It helped with the migraines but I felt completely and utterly lost while I was taking it. Several times I couldn’t even remember my way home from work. I couldn’t hold a thought in my head or put together a coherent sentence. People told me it would get better, but for me it never did. And like you, I decided it just wasn’t worth it. But there are other medications that will help. Ask your doctor about other options. I finally found Zonegran, which doesn’t work quite as well as the Topamax, but it does help and at least I can think straight.
23 April 2016 @ 2:08 am
Hey, my doctor put me on topamax 25mg a night the first week 50 the next then 75mg the 3rd week then to stay at 75mg. While I was working at the end of the 3rd week i was changing the trash at the hospital offices like I normally do and I saw rays of sunshine and I saw the sun get bigger and bigger going down faster and faster and thought I was about to die and I dropped on the floor praying then I ran outside to see what outside looked like and it was dark and cloudy like it was before…. I started to question myself an hour later if I was dead or not and im still not entirely sure. i find topamax giving me violent thoughts towards other people and my co workers always tell me im a very nice person. I would say topamax can work for migraines but it can turn your personality into one you may not be able to live with. I have even tried amytriptiline, ideral, imitrex. The anti-depressant ones I don’t think I will ever find one that won’t make me depressed, suicidal, or angry. Not so sure the doctors really know what they are talking about when they suggest anti-depressants for people with migraines when half of them are already hopeless and ready to give up, the anti-depressants just seem like a faster way to end it to me.