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 23 February 2023 by Nelson07
29 Answers
Nelson07
22 Feb 2023
My headaches were almost daily and so bad I couldn't move. I was prescribed topiramate and my memory was definitely affected. They also had me on amitriptyline and had tried a few others. I have a failed spinal fusion, and someone mentioned I should try a high-protein diet to account for my body constantly trying to heal itself
Within weeks my headaches had lessened. I took myself off all the drugs and kept up the high-protein diet. My headaches are almost completely gone and I'll never take another drug. Memory still not what it was after 6 months on topiramate. In my 49 years of experience drugs just make your problems worse. Try the high protein diet. It can't hurt and it changed my life.
ChrisGrav
10 Feb 2023
I took Topamax for 4 years or a little longer I'm not to sure, I can not remember. I was taking 25mg for a bit then moved to 50mg then 100mg and this drug was the worst mistake of my life it was supposed to help my Migraines. My memory is so bad I forget who my parents are I even have trouble tying my own shoes. I lost all memory's of family pets except when they all died, I can't remember My older brother Phillip except when the police came over and said he had taken his own life. I only remember things that make a impact on my life. My fiancée left me because she could not handle the care I now need to function in everyday life.
If my parents were not around to help me I would have no one and I would take my own life. This is the worst way possible for someone who is 28 to live I would not even wish this on my worst enemy.
I would do anything to go back and stop myself from taking the drug. I get Botox now and that treats my Migraines, My parents say it is like I have Alzheimer's.
rhoverton
6 March 2019
If it's already having an effect, GET OFF immediately if I was you. I know I would
Missdior
5 March 2019
In answer to your question..i was prescribed this drug 14 years ago and even though i stopped taking it after 6 months the damage to my memory was permanent. It caused Functional Memory Loss and ruined my life!
rhoverton
4 March 2019
I have neuropathy in my feet mostly but the tingling started all over. I originally started with 25mg but I am now at 200mg because after awhile my problem slowly increases and they have to increase. At some point my doctor will have to stop because I will reach the max they are willing to prescribe and my worse fear will happen as they slowly take me off and try to find something else to work but back to the original question.
groggy= dazed, confused, sleepy, unable to concentrate, tired?
Started a 25mg
I felt tired but I did not let it define me meaning that while I had just retired I was was working at at the gym a lot on the treadmill and the bike s but if I were to simply go home an lay in bed yes. I would have taken a nap.
It did not make me want to sleep all the time. I build computers as a hobby and using the internet would sign on to previous customers computer to resolve technical issues so NO I was not impaired to the point I stayed confused but YES I did feel feel somewhat tired but you do get use to it and it gets better as your body adjusts and as your dosage increases it happens all over again. Tied, adapts, but not to the point you cannot do your job or study BUT as your dosage increases it is easy to let yourself fall asleep if you are not interested in what your doing boredom.
So, the answer is YES, to feeling tired but NO to being unable to really concentrate.
PAULA310
18 Jan 2019
I was first prescribed this medication as a "mood stabilizer " and to help with weight gain from Zoloft ( my drug of choice Anti-D). The fact that it got rid of my migraines was a BIG BONUS. I've been on this for at least 7years. I take 200mg tabs ,one at breakfast and one at noon. I had one psychiatrist switch me to TRILEPTIL, and I ended up in the walk in clinic with a profound migraine (" head in a vice" pain , nausea, vertigo ) who sent me STRAIGHT TO THE E.R. ( saying that I was "having a stroke" , " your pupils are uneven" ) . I will NEVER, EVER go off Topamax again. It's a lifesaver ❤
minemake6
7 July 2018
I was also on Topamax for yrs and now my neurologist from the biggest best hospital where I live has said I have early stages of Alzheimer's disease. Which also can cause migraine headaches which now I'm receiving Botox shots for, for over 1 year of these shots. I'm since been taking of those drugs.
immanuelsamuel
5 July 2018
As a researcher in this field, I have looked at the effects of topiramate on cognition and as already mentioned before, it will most certainly decrease your memory (long-term and short term) within a few minutes of taking the dose.
In my research, we show that people who had better compensation were better able to cope with the memory decline. Therefore, to those who have been on this drug, I would suggest that you do some mental exercises.
Specifically, I would suggest to pick up some hobby that target multi-faceted brain engagement. I would suggest picking up something like musical instruments or art. This is in order to develop a type of neural compensatory benefit that involves using multiple brain regions to accomplish a task. Furthermore, the earlier you start doing this the better you will be able to delay the memory loss (this is just my personal advise based on the many research articles I have read).
Iforgotmyname
3 April 2018
This is a severe problem. I know approximately when I started taking it, but I need to ask the Dr for sure. I have all of the symptoms people have talked about and plus more. My balance and coordination is not as good as it used to be. I took it for approximately nine years. I just didn't know what was happening along the way. I started to research my possibilities and found the same all over the internet. I turned into another person. I used to be a personal trainer that worked out from the time I was 18 to mid forties. After I started taking it, I quit working out. This is so not me. I didn't relate that to the Topamax until recently. I went off of it about three months ago and I feel like something has been lifted off of me and I just signed up for a new gym yesterday. Unfortunately none of the cognitive problems, memory, attention, word recall, etc etc are not returning at all. I see the neurologist today and I am going to ask him if dementia drugs would help.
I contacted the FDA and I also contacted Jannsen. I talked to a lady at Janssen for quite sometime and then I received papers in the mail yesterday that they want me to fill out. I would encourage everyone to do the same. They do not stress the fact of how bad this can affect people. They need to know. This drug should not be on the market or they should state the side effects can be permanent. I used to be smart. I feel like a complete idiot now. When a drug has nicknames because of what it does to you, I would think the drug company knows about it. They already have lawsuits for birth defects, eye problems and prescribing it off label for weight loss.
Stillnotmyself
3 April 2018
I have been off Topamax for about 6 years and am just now finding my memory, anxiety and other issues are starting to improve. Slow but sure. No memory of all the years on it or since but new memories are being made. I will get these papers as well.
PhotographicMemory
31 July 2018
I have been off Topamax for at least 7 years and there is still a disconnect somewhere between my thought process and the words that come out of my mouth. My long-term memory is almost non-existent. I don’t remember what happened; I only know what occurred if I’ve seen a photo and then I can remember the photo but not the event. I was always the person at work who proofed all of the materials and audited reports. I had to start using spellcheck because I couldn’t remember how to spell correctly. While on Topamax I changed jobs three times. My teeth almost fell out because they were so loose. I’m very lucky that they didn’t. The mood swings were terrible and I would always think about ending my life but it never made sense to me. I do remember the fog lifting a few months after I stopped taking Topamax but my speech patterns, spelling, cognitive functions, temperament, long-term and short-term memory are extremely diminished. I thought I was crazy for a while until I found a forum of other post Topamax users and they described the same problems.
CLLS
3 April 2018
Typically, I take 25mg of topimirate with phentermine. For me, the benefit of topimirate is that it diminishes interest in food, particularly when combined with phentermine. For context, I am a consultant responsible for analyzing data, preparing presentations and papers, and frequently work with executives. I have to be able to think clearly. Since I am sensitive to topimirate, my doctor has me vary the dose from zero to 50mg per day depending on what I’m doing. On average, I take it about 3-4 times per week. I take phentermine at the same dose every day.
At 25mg of topimirate, I have brain fog. I have to work moderately harder to concentrate, stay organized, follow a logical order to complete tasks, prepare written documents, and listen or read for understanding. I process information and data more slowly. Sometimes I forget common words or descriptions but I still picture things in my mind just as I normally would. I feel a bit tired. However, I can perform any routine task such as driving in a familiar area, cleaning house, or preparing standard meals. The mental processing and concentration issues tend to wear off after 12 hours for me. Surprisingly, other people don’t notice the effects, but I definitely do and am self-conscious about them.
If I take 50mg of topimirate, I am very confused within 1 hour. I do not drive. I can’t even clean out a guinea pig cage (my daughter has a guinea pig) because I can’t perform the tasks in a coherent order or stay on task. Making a basic sandwich is hard. I can write short documents but it’s very difficult for me to tell if the sentences make sense or if the words I’m using are the right ones to describe something; the vast majority of time it turns out to be fine. I wouldn’t dare open a dataset. I really can’t work on days when I take 50mg. I can watch movies.
Unlike the other reviewers, I have been able to recover from the effects. However, it has to be because I don’t take topimirate every day, the dose is low, and it varies.
Dablue
2 April 2018
I used to take 25mg ONCE a day and I had every side effect imaginable. Now after being off the medication for over a couple months I am still experiencing short term memory loss and trouble with remembering words. It was not worth it for me. I would take a migraine anytime over forgetting everything. But it depends on the person, hopefully it doesn't/didn't happen to you. If you're female it could be a hormone problem and I suggest talking to your doctor about birth control. I take it constantly so that I do not get my menstrual cycle and I have rarley had any migraines since. Before all the medication, I was having migraines every single day all day for at least a week every month for years before I did anything about it. I wish I would have gone straight to birth control instead of taking Topamax.
apester
11 March 2018
I've been on topamax the generic version for 7-8 yrs. In the last 6-8 months or so I noticed some increasing deficits with my short-term memory. At first I brushed it off as I'm just getting older. The issues continued to get worse though! I would forget my clock in # at work, the same one I've used for over 2 years.. I'll have a thought in my head & it disappears & it drives me crazy until I think of it again! Word-finding has been a serious issue for me, I can't think of simple words or get them to come out of my mouth. It makes me feel like an idiot! I just forget things in general or struggle to think straight at times.. I mentioned this to my doctor & to my surprise found that these symptoms may be connected to the topiramate! She tells me that the medicine is often referred to as "dopamax".
At the time i started taking the med I had already tried several other things & topamax was the only thing that gave me relief for the headaches & migraines. My Dr is switching me from the topamax to propranolol. Today is my 1st day taking it & that's how I discovered this forum. I was hoping to find out if the propranolol has been successful for anyone & if cognition deficits improve after the topamax is stopped?? It's been helpful to read everyone else's comments & know that I'm not alone in feeling this way. I hope my comment is able to shed some light for others! I'll update how the propranolol does...
Ejohn
14 March 2018
I’m sorry to hear you are also having issues. I was the same way and only topamax worked for me. I always thought the side effects were easier to deal with than the migraines I was having. Did your doctor say whether or not your memory and word find issues would come back? I hope the new medication works for you, it isn’t one I’ve tried. I called my neurologist 4 weeks ago as I have been much if any better since coming off. Still no response...
Trumi24
29 July 2017
Texant,
I took Topamax for 3 months in 2010 for off label use of weightloss. I suffered from significant memory loss, poor concentration, and trouble with word find. I couldn't remember simple things, such as, my child's birthdate or where I went to college. Significant, because when I was asked these questions, my daughter was only 8 months old and I was currently attending that college. I discontinued the medication myself. It is now 2017 and I have not recovered my memory. I still suffer from trouble with word finding, poor concentration and memory loss. Did you recover?
BDWheeler
2 April 2018
I’ve been taking topiramate for 6 years now, but have lowered my 100mg per day dose to just 50mg after my brain became so numb around Christmas time, I felt life was passing me by. It’s now April, and I feel better in control of my life, although I do now get the odd migraine again, but only once a week, not every day. So yes, recovery is possible, keep your brain active and work hard to mend those missing links.
Stillnotmyself
3 April 2018
For me recovery has taken at least 6 years. I now hold a job and use simple memory tools to remember the things I need to perform my job. I know I am not 100% but I feel more like the me I once was than I have in years. I did get counseling to be able to accept the new me.
martyh65
5 July 2017
My wife was prescribed Topamax to treat her migraine headaches. She was never informed of this side effect for the 3 years she took this medication. My wife was a RN at a local hospital until such time as she became forgetful, suffering memory loss. She was put out on medical leave Dec 2014 and had never returned to work. She was just terminated as of July of this year. Another Neurologist tested her for this and diagnosis was memory loss due the this drug. Drs are now calling it Dopamax for obvious reasons.
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.
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