I was recently prescribed Topamax (the generic, actually) for migraines but I am terrified because even at 25mg twice daily my memory seems affected. Will this go away? Will it get worse?
How significant is the risk of attention & memory loss with Topiramate?
- Posted:
- 10 Jul 2009 by texnant
- Topics:
- topamax, topiramate
Responses (7)
18 Jul 2009
Unfortunately slowed thinking, memory problems and trouble concentrating are some of the more common side effects associated with topiramate. These side effects are said to be dose related so technically the more you take, the more likely you are to have the problems.
Your dose at 25 mg twice daily is already at the lower end of the scale, so reducing the dose probably wouldn't be an option.
It is worth mentioning to your doctor. He/she may want to try you on some other medicine.
9 Sep 2009
I have not had any memory loss with my use of Topamax. I have taken this med for over two years now. Just recently switched to the generic form. I currently take much larger dose. I do experience loss of energy with the highest dose (400 mg at bedtime). At times when using the high doses 300-400 mg, and still experiencing headaches, I will experience trouble holding concentration during periods following and preceding headaches. So I am unable to determine if side effect or function of the headache or headache recovery. Topamax has been the most effect medication in my drug treatment even given the side effect present and resolved. Hopefully this is helpful.
19 Sep 2009
Hi. I've been getting migraines since I was 17 and have tried every drug out there. Topamax is really the first preventative that has worked for me. I've been taking Topamax for about 2 yrs now and switched to Topiramate the second it became available (as you know, Topamax was so expensive EVEN with insurance so I was ready for it!). I hate to say but in my opinion your effected memory loss won't go away. I take 100mg total per day and have been on that same dosage for over a year. This will sound silly but I had forgotten that the side effect was short-term memory loss and I was getting so frustrated that I was having trouble remembering things, not knowing why it was happening. I used to be an actress so my memory has never been an issue. Now, I will look at a simple object (anything - towel, toaster, picture frame) and not be able to identify what it is called. I have trouble with names of co-workers that I've worked with for almost 5 years as well.
6 Jul 2011
I have been on this same med for several years on & off as I felt I needed it, but steady the last several months & I have had na increasing problem with memory loss & what I call feeling stupid. Usually I can pride myself on finding the right thing to say, remembering what to do & getting things done, now, I'm lucky to remember what I came in the room for! So in response to your question, I take 50 mg 2 times a day and it seems to me to be getting worse, memory wise & thought process wise!
I commented on Kyra's post, but will just give you a brief outline of what I said to her.
My son was on Topamax for his entire time at high school, he took himself off it during his first year at University, he has no recall of his 5 years of high school at all, not his matric dance, his friends, holidays or anything. Since coming off Topamax and just staying on Keppra he has just qualified to do a Bsc Honours Comp Sci next year, I am so proud of him.
Topamax nicknamed Dopamax, very appropriate i think.
28 Jul 2011
I've been on Topamax for ten years. 300mg daily. On the plus side: my neuropathic pain has been reduced and I have maintained a 12-14 lb weight loss (I initially lost about 30 lbs during the first year). My migraines are lesser in frequency, but not gone. On the negative side: I often feel like I have Alzheimer's Disease. I can't get anywhere without a GPS, I forget the names of people I've known forever and the names of common objects frequently escape me. All-in-all, I guess it's better than being on a ton of narcotic pain meds, but I miss the $100k education that has evaporated with the pain.
If any of you are female I would suggest that you get of Topamax if you are trying or could fall pregnant. There is a multimilliam dollar lawsuit against the makers of Topamax at the moment for birth defects like cleft palate and spina bifida etc, so far I think they have paid out over $81m. Unless you have uncontrolled seizures I would not risk taking it. ( unless you are male of course)
29 Jul 2011
My experience is that the longer I was on it, the dumber I got until I felt like I was a child, afraid to go anywhere alone, stupor wanes in & out, falling asleep everywhere, even eating! Memory recall for recent or current events was awful & got continually worse. I took 25mg morning & night for nerve pain. I was on it for approx 6 months before I figured out by myself that the med was slowly sapping who I was & how I functioned. I'm rather upset since the prescribing doctor NEVER mentioned any of the side effects such as I've experienced. My husband passed away June 7th this year & I virtually missed the last 3 months of his life because I was in an ever thickening fog. I can't get that back! But I did speak to my new doc & she agreed to taper me off & get me something else for the nerve pain.
I just want to know how long before you got back yourself after getting off this drug? I am experience problems and it has been 5 months off topamax and this is a very weird world my head is in
15 Dec 2011
I was on topamax for 1 year. I took 200mg morning and night, a total of 400mg daily. I took myself off the drug in july 2011 cause was experience really weird problems. I still am experience memory loss, confusion, not being here. I feel like this has damaged me. Is anyone experience anything like this? Sometimes I can't even go out of the house and it has made my brain very numb. Is there light and will I get out of this funk. Please anyone out there I need help
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My son was put onto Topamax and Keppra from the age of 13yrs for seizures. He decided at the age of 19 and in his first year of University that he was only going to take the Keppra as his memory was so very bad and he felt that it was the Topamax that was causing the problem.
For the past two and half years his memory has improved so much and he has now qualified to do a Bsc Honours in computer science next year. He has no recall of his 5 years of high school, He hadn't driven for the past four years and when he went to get into the car last week he couldn't remember how to drive, he was really upset and told me how bad it felt not to remember anything from his high school days, not his matric ball, or his friends or anything.
He only occasionaly has nocturnal seizures now and hopefully adding his morning dose of Keppra he will not have any at all.
We heard that Topamax is nicknamed Dopamax, very appropriate I think.
Expand this post...
I get classic migraines and I wouldn't dream of taking topamax for them, my neurologist prescribed Maxalt RPD 10. you put it under your tongue as soon a the migraine starts and it aborts it. Brilliant stuff.
Hello. could you please share what the doctors did for you? If you are crazy then Im right there with you!
I identify with Kylin's experience w/Topomax. I tried it for migraines in my thirties, while teaching elementary children. I had major memory and word recall loss , and challenges with generalized cognitive sharpness. It was two years before I realized the cause (kinda stupid by then). Twenty years later, I am still experiencing cognitive issues, although not to the earlier extent, they are currently a contributing threat to my job performance and security. Can I prove the problems are due to Topomax? No, but that is when they started and there don't appear to be other causes (dementia has ben ruled out). Best of luck to those using it.