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?
Question posted by texnant on 10 July 2009
Last updated on 16 April 2025
The information on this page reflects personal experiences shared by our community members. It is not reviewed for medical accuracy and should not replace professional medical advice.
30 Answers Page 2
crazydude81
24 May 2017
I've been on 50 mg. of brand Topamax for two years and the cognitive impairment is significant. I often forget how to spell my last name, I don't remember events of just yesterday, and I can't spell anything anymore for the life of me. I take it for Rapid Cycling Bipolar I & went off it for two weeks to attempt to get my cognition back - by about the 6th day I started to show signs of mania and by day 8 I was full blown manic with psycosis. I'd do anything to get off this brain mush of a drug but it serves a purpose. Oddly, I never went into psycosis until this drug. Oh, and the days that passed without Topamax lead to the worst headaches ever. Buyer beware.
Jessee74
27 April 2017
Please don't be terrified, there are always options and support all around you. I have been taking steady increments of Topamax daily for nearly four weeks and have occasional memory confusion but it lasts only seconds and I find it is worth the pain relief. It most definitely has not gotten worse with the increase from 100mg in the first week daily to 800mg in the final 4th week which brings me to the highest daily dose that I shall continue on. I do hope this brings you hope, good luck! If you would like some funny stories due to the effect of the few seconds confused let me know.
Iforgotmyname
13 March 2018
If I were you, I would be terrified. You haven't been on it that long, I would get off of it right now! I was on it for ten years. I had to start researching to find out what was wrong with me. I came across this type of thing all over the internet. I haven't heard of many people that have had their memory return. Yes, the insert says you could experience some memory problems. It happens gradually and when you start to forget things, how are you supposed to remember that you read that months ago. It says nothing about permanent memory loss or lowering your IQ about 50 notches.
Gbtphd
8 Feb 2019
Like someone else wrote... I lost 40 IQ points on Topamax... my memory got so bad I could not remember simple words I used everyday and words would “drop out,” I kept forgetting where I was driving during my commute I took multiple times a week, and it would take me over 5 times of looking for something (such as going into my purse or a room to get something) to remember what I was looking for... and it caused me to have rages and mood changes (I’m bipolar)... even now, being off of it about 6 months, I stil have cognitive issues... I have gotten back around 18 of my IQ points but not enough to perform the same job I did before... I wish I had never taken it
teresaq
8 March 2017
I'm 34 have been taking this since 2014 and I've recently started noticing my short term memory fading. Example: Ran into someone last month, saw her again yesterday and I said "Hey, you got your braces removed!" She said "Yeah, 2 months ago, you mentioned that last time I saw you". Sad part is I have NO RECOLLECTION of ever saying that to her or of ever seeing her without her braces. The worse is the look your kids and husband give you, that's sad :( I started taking Topamax because I've had migraines since I was 6 yrs old or so and I've tried everything under the sun for them (about 15 different pills), I've also tried Valporic acid pills. It got so bad I would end up in the ER 1-3 times a month due to my migraines. Topamax has eliminated the ER runs completely, but I get "bad" migraines maybe once every 2 months, not bad.
Rb2734
8 Jan 2017
I take 50 mg once daily and have been experiencing memory issues. What are people replacing topamax with? (When used as a mood stabilizer and not migraines)
Mystic4736
30 Nov 2016
I was only on it at 50 milligrams once a day and I only took it for 2 months and that was a year-and-a-half ago and now I have severe memory loss and I used to be a very organized person and now I set my alarm clock for medication I have to put everything on calendar on my phone so I keep track of everything I never ever had to do that before and that's my life now so that's why life after taking it so you can make your determination on my life was or not that's up to you but that's how it affected me. Also my husband takes me where I go if it's a long drive away because I get lost in my mind sometimes.
SeeJayy
31 Oct 2016
Howdy. I'm twenty years old, male, six foot tall on the dot. I've been taking Topiramate for around half a year now. I started taking it whenever I as 296 pounds, almost 300 pounds. I am now at 240 pounds. Topiramate has some confusion and memory loss I noticed right away, it's significantly to an every day basis for me, because I'm on 200 mg twice a day for weight loss, along with Lipozene which I don't even know if works anymore, but I think it does. I just recently started working out again. I used to lift weights every day and run four miles until my back got hurt, now I'm going to do it again! But yes, Topiramate has a lot of short-term memory loss, and you'll be at a loss for words constantly
ADDY709
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.
mkl447
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.
kcarlee
19 Oct 2016
I too take topiromate 100 mg t.i.d. as migraine prophylaxis and have been on this for 5 years. Now I haven't noticed a significant memory deficit until the last few weeks and it has scared me to death. I'm in my early 60s and always had a great memory. To think this may never correct itself is so frightening. I've had a lot happen in my life over the past five years and want to try to wean off this drug to see if migraines are better. I was caregiver for sick spouse who passed away four years ago. It's worth a try. I wonder if there might be a nutrient or special herb I can take that might help rejuvenate the brain cells. I'm motivated. Thanks Kathy
BDWheeler
28 Nov 2016
Thank you for sharing your story. I'm sorry that you have suffered so much, but so very grateful that you have the strength to warn others I, for one, will stop taking immediately kind regards B
Fixmyhead
10 Dec 2017
Thank you so much. I am a representative at a Medicaid Insurance Plan and have anxiety. I had taken Lamictal in the past for anxiety relief to stay away from the Benzodiazepam family but had to stop for a while. Now that I try to get back on it, they ( psychiatrists) wanted me to try topomax for less side effects. I would say memory loss by far is the worst side effect ever. I have to present in front of large crowds and be on point in executive meeting and I feel like a moron. After 3 months I'm up to 100 mg but now I know to stop and say go back to Lamictal or try something else. I'm in fear of losing my job. It is affecting my performance substantially. Memory loss and cognitive impairment should definitely be listed as a side effect. I hope others (loss of words) get some use from this post. I also feel like it makes me a bumbling idiot among others. I have actually noticed my peers pulling away from talking to me. Like I'm no longer intelligent. It's very sad and heartbreaking when you have been in the field for 10 years.
Cantbelievethis01
26 July 2018
I hope you are doing better by now as it has been some time since your post. I wanted to comment on it as I have worked in health care administration for years and have been on Topiramate for approximately 11 years 100 mg 2x daily. I completely understand what you are talking about. I have all the same issues. I have been fighting / trying to ignore this for years while trying to work and appear on top of everything and seem professional as well as hide it from my family. Today for the first time in my life I had to quit a new job over this - there was just no way I could remember anything that was being taught to me. As soon as the words left their mouth they were gone from me just gone... trying to write it down on this job just wasn’t an option either and a worsening development something is happening with my hand/ eye coordination . I’m terrified, humiliated and devastated. I have made an appointment to hopefully be referred to a neurologist. We shall see.
nattworoam
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
Stillnotmyself
13 Jan 2017
Still living in that funky world 4 years later.
teresaq
8 March 2017
Since you guys have gotten off Topamax, what has been the alternative to preventing your migraines? What has helped?
REDBARON1
25 March 2017
I know this was posted a long time ago however I was compelled to respond. I took topamax for several years for migraines. It did wonders. I was on a higher dose at 300 mg. and it was several months before I began to respond to it. It was excellent. I suffered from the migraines at least 3 times a week. After about 8 months I noticed the memory issues. To this day I have people come up to me and I am clueless who they are. Specific events I can't recall, and it has been over 4 years off the medicine. I am very worried as I get older how far will it go. I am 52 now. Too often I feel like an 87 year old with Alzheimer's. I truly can relate to all who have taken this drug. No it does not go away with everyone. Good luck.
myheartbelongs2veterans
29 July 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.
nattworoam
20 Dec 2011
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
jmwlmt
28 July 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.
sueffun
29 July 2011
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)
myheartbelongs2veterans
6 July 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!
sueffun
13 July 2011
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.
Kylin
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.
sueffun
13 July 2011
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.
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.
meccece
19 July 2011
Hello. could you please share what the doctors did for you? If you are crazy then Im right there with you!
melee34
8 May 2012
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.
Fleece
11 Nov 2016
I had the exact same problem!
I could not remember anything, how to get home my phone number names ect.
Everything you said I had. Plus I kept taking naps all the time.
Also I have a degree in computer science, and i was pretty sharp in college.
I lost my job a few years ago
(Not because of topamax)
And out of job market for a while.
and that was when I was on topamax
When I tried to go back to work I was so stupid, I did not know what it was at the time. I could not remember anything it was a big deal. My brother in law (a doctor) thought I might have had a mild stroke.
To make long story short I finally found out it was the topamax and step down slowly.
Every 3 days go down 25 mg.
And you will feal like you have been reborn.
When everything comes back it feels like your senses are enhanced.
Unfortunately that's the only answer.
BDWheeler
28 Nov 2016
I feel the same as you do! I've been on topiramate for 4 years now, and without my 100mg daily dose I suffered daily migraines. This was following a brain injury. However now I feel the medication is affecting my work somewhat, including my ability to learn new things and concentrate, I have also suffered a period of confusion when driving ( on the wrong side) and I once forgot how to drive altogether- I was stationary at the time. I have recently reduced my dose to 50mg in the hope that I will be more alert. My migraines seem fine so fingers crossed.
Stillnotmyself
13 Jan 2017
I have often driven off the road due to topamax.
Jessee74
27 April 2017
Well I found myself counting the zeros on one thousand and was so confused, after several minutes I hoped I was depositing $1,000 not $10,000!!!
enuffsaid67
22 Aug 2017
Wow, Im so glad Im not the only Dopomax sufferer! I am so angry and frustrated with my experience on this topiramate! I could write a book if my cognitive abilities weren't so affected...
Ejohn
19 Feb 2018
You aren’t crazy! I am also losing my mind of things like this as well. I thought my stove was broken but it was simply I forgot how to turn it on. I don’t see traffic and turn scaring my passenger or run a red. It is absolutely terrifying. I have been off the drug for a few months and I feel almost worse off.
I can’t find the words to complete my sentences. I mix up the types of animals at the zoo etc.
While working on my bachelors I always noticed the lack of memory I had while studying.
I also am working in career that I require good memory. It is so humiliating when you can’t even form a sentence or you mix things up. I check my work 20x because I am so afraid of making a fool out of myself.
How is your memory doing now? Have you spoke to a doctor about your experiences above?
ckmic
20 May 2018
Hi sueffun - your son's dilemma is so similar to mine - I was in high school when I had to start taking seizure meds - eventually landed on Keppra and Topamax. It has been nearly 30 years now (I think) can rembmer when excatly they swithched to Topamax but it has been a long time - I have lost so much of my life but somehow have been ablt to steadily progress - I did an Engineering degree, MBA - worked in the C-Suite and have strated numerous businesses -- however now I struggle to manage my calendar for more than a few hours at a time - completely forget movies that I watched last night (need to watch the full trailer to remember) -- somehow I still funtion at a high level as an Executive Coach but need to take a lot of notes .
I recently dropped from 2x100mg Topamax to 2x50mg and upped my Keppra -- my plan is to go to 0mg Topamax and pray that I may regain some function ... I m not sure - it has been so long.
Your story gave me hop, however. Thanks
tammyb123
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.
robo
18 July 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.
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