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?
28 Jan 2013
I have been on Topiramate for almost a year now. I slowly increased to 125mgs. Lately I have been experiencing many side effects including memory loss, fatigue, change in taste, muscle pains, increased migraines. Topiramate for a while was the miracle drug for me as I had tried many others. But over the past few weeks has turned into my nemesis. I, like many others, feel ignorant at times when my 3 year old niece can think of simple words faster than I can. It's frustrating and depressing. It was a sigh of relief for some time but now back to the drawing board for me. I have to get off of this immediately.
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.
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
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 am now 2 weeks totally free of Topamax & I am beginning to be me again, the brain fog is lifting, I can drive by myself again without fear of falling asleep at the wheel, I don't fall asleep eating, my mood swings have stabilized, and I can think for myself again, also the ever deepening depression has lifted! I think it should be mandatory that a black box warning be placed with this drug in reguards to these effects! I want to warn everyone to be very alert to these possible effects so you can get off it before it becomes as serious as it had for me. NO ONE ELSE could figure what all my problems were attributed to, I had to figure it out myself by researching my meds on line. Be alert protect yourself & do a little research yourself. I wish you all the best & I pray that you do not experience the effects I did since I've read where some folks have had no problems, it's just those of us who've suffered it, suffered badly, so be alert to the possibility so you can catch it & get off of it.
8 Aug 2012
I am a pharmacist and have had horrendous migraines since the age of 3 years old. I have suffered horribly since my first memories. In the many years past, I have gone through the whole gambit of migraine treatment and prophylaxis for 62 years. I have been treated by a specialist at Yale university hospital and several other large hospitals. As a pharmacist, I resisted the new treatments using valproic acid, carbamazepine, and topiramate for personal reasons. (Very skeptical of new treatments until proven). My primary care MD asked me to see a neurologist at a Maryland University Hospital in 2004. The neurologist suggested topiramate. I told him that I was not comfortable taking that particular drug, but would take a much smaller dose than was being suggested. I settled on 25 mg q12h. I was told that I probably wouldn't get the desired response for my treatment for some time or it would have little effect at such a low dose.
It was considered to be sufficient to begin treatment and to increase the dose gradually until I reached optimum doses and my headaches were under better control. The doctor was correct and after two months, I saw only slight improvement. I finally gave in and began 75 mg twice daily. At that dose, I could definitely tell that there were improvements. As the migraines would breakthrough periodically, it was increased to 100 mg twice daily until the headaches were under control and then back down to 75 mg twice daily.
I am not sure when I began to tell an insidious memory loss. It was slow but definitely increasing. My father had alzheimers and parkinsonism. As the years went by, I became frantic that I was coming down with that dreaded disease and my memory got progressively worse. At this point in my life, I can't carry on a conversation without my mind constantly looking for words to substitute for vocabulary that I had and am now unable to use. We are talking about not being able to come up with the words closet, garage, hurricaine and not to speak of the medical vocabulary that is extremely necessary. I understand in conversation, but fail to come up with speach sufficiently to express myself explicitly. In the first years, I searched the literature for any memory side effects presented by any medications I had taken, but memory loss from topiramate was not there and then was only a small side note. Now the truth is out. I stopped taking the drug three years ago and my memory has not returned to what any person would call normal. I can remember things that happened when I was 5 or 6 years old vividly, but not the call I got 20 minutes ago. I constantly repeat things that only a day ago I told the same person. A year ago, another pharmacist friend told me of a 30 year old pharmacist that was placed on topiramate for migraines and his memory is so bad that he is unable to work at his profession. That is my great fear! How far will it go. I have very little comfort in thinking that one day it will get better. I only pray it doesn't get worse. The only comfort I do have, is that it isn't the disease I feared, but a drug side effect. At my age now, I'm sure that some would say, it is only age! I can tell you that before topiramate, I could give scene by scene discriptions of a movie I saw 2 years ago. I could tell you my life history from age 3. My family has always been amazed at what I can remember from earliest childhood. I know this seems like an epistle, but let it be a warning to those that are cautious.
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.
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!
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.
It's humiliating as I work in a professional environment where my memory is extremely ... (can't think of the word... ). Needless to say I have word recall issues. What encouraged me to grab my computer and search blogs was I drove on the wrong side of the road last night in a town I should know not to do that. Granted, they have several one-way roads here and there so I am sure I was confused but I feel the Topiramate contributed to it. SO QUESTION TO ANYONE- I've noticed I have to think harder when driving and tell myself which side of the road is the correct side to drive on. Does that make sense or am I crazy??? I certainly feel like I'm getting stupider in my old age and I'm only 33. Sometimes I wonder if these side effects are worth the fact that I don't get as many migraines.
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.
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