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A team of researchers led by Dr. Francesca Coppola from the University of Perugia (Università 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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March 28th, 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?)
March 28th, 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!
March 28th, 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.
March 29th, 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!
April 1st, 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.
April 2nd, 2008 - 7:02 am
Glad to hear it’s working for you, Connie! Here’s more about butterbur here.
April 6th, 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?
April 10th, 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.
April 10th, 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.
April 21st, 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
April 21st, 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.
April 21st, 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!
April 21st, 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.
April 22nd, 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
April 22nd, 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.
April 25th, 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!
April 25th, 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”.
May 8th, 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!