Topiramate and Memory Loss: What Users Say (Page 2)

• Jil...
• Taken for 6 months to 1 year
• December 13, 2020

For Borderline Personality Disorder "This medication has been a game changer. After trying so many medications (SSRI, SNRI, and then working my way through the mood stabilizers), Topamax has completely changed the way I think - I no longer pick at my skin. I feel very calm. I don't feel like I'm going to lose my life every time I leave my house. I did experience some cognitive issues for the first few weeks, but those side effects have subsided, and I am now thinking clearer. I attribute this to perhaps not being consumed by fear and anxiety. Loss of taste has definitely been an annoying side effect - I miss tasting salty and sweet foods - this has resulted in a 20 lb weight loss."

• usm...
• Taken for 1 to 6 months
• September 11, 2014

Topiramate for Migraine Prevention "I've been on Topamax for about 5 months now (100 mg AM/100 mg PM) and am finally giving up faith. The negative side effects outweigh the slight change in my migraines. Carbonated beverages taste terrible, I have to force myself to eat, I stutter constantly, I can never find the right words and often switch words in a sentence. My memory is horrid, and I always see tracers, which is enough to drive anyone crazy. The only pluses are the slight decrease in the consistency of my migraines and the weight loss."

• Mar...
• Taken for 1 to 2 years
• October 31, 2015

Topiramate for Migraine Prevention "I felt compelled to write a review, as I was on Topamax (or should I say Dopamax?!) for about 2 years. I started this medication when I was 21 and was so desperate to find something that would actually help my ongoing migraines. Personally, the side effect symptoms FAR outweighed the benefits. I started out on 25 mg a day and gradually increased to 100 mg. As soon as I got on this, the side effects came rolling in. Before I knew it, my memory was completely gone. In daily conversation, I couldn't think of simple words, names, or phrases. I knew what I wanted to say but couldn't form the words to do so. The worst of all, it really affected my grades in college. I used to have awesome memorization skills. Unfortunately, I would study for hours upon hours and still wouldn't do well as I would have 'brain fog' during tests, etc. Another side effect I experienced was weight loss. I lost around 25 lbs., HOWEVER, I don't believe all of this was ultimately from Topamax. I'd definitely say it suppressed my appetite, but I really changed my eating habits and worked out daily. It helped with my first few pounds and got me motivated to do the rest. On the plus side, I saw a significant difference in the amount of migraines I received. It was a night and day difference in that aspect. However, approaching a year and a half on this medication, I couldn't take it anymore and had to get off. It wasn't worth it anymore. I don't think tapering off or stopping cold turkey on this really makes a difference. My mom stopped cold turkey, and I tapered off, as my doctor instructed me. I rebounded off this HORRIBLY, as did my mom. I was STARVING constantly after no longer taking it. This didn't just go away either. My body didn't feel leveled out and 'detoxed' from this for honestly about a year after. I not only gained back all my weight I lost, but plus some. Although everyone's body reacts differently, I highly do NOT recommend taking this. Not even for those desperate for weight loss. Losing weight from a medication like this is not sustainable long-term. I'm 24 now and am still affected by my choice of taking this. Topamax has ultimately ruined my memory to this day. I still cannot remember words or things. It changed me. Do not take this! There are other answers out there."

• Sup...
• Taken for 5 to 10 years
• April 9, 2019

Topiramate for Migraine Prevention "I took Topamax for about 8 to 10 years at maximum dosage for migraine prevention. (Don't recall actual dosage, but I think it was like 400 mg daily.) I went from over 300 migraine days a year down to less than 12 migraine days a year. That's a solid rating of 10 for relief. But the side effects are really bad while on such high doses. 1) Memory loss was terrible, and it does not come back. 2) Kidney stones are another side effect. Turned my kidneys into bean bags, every 6 month scan added 4 to 6 more stones. Finally had to give it up! Now, after being off of Topamax for 3 to 4 years, the migraines are back with a vengeance. P.S. Going to the generic (Topiramate) gave me identical results."

• RJi...
• May 4, 2014

Topiramate for Migraine Prevention "Wow, what a roller coaster ride! Started on 25 mg, no effect, then 50, 200, finally 400. It did stop the cluster headaches, but extreme confusion, serious loss of hearing, forgetfulness, couldn't remember my phone number! My wife wouldn't let me drive at 400 mg, I was dangerous. Parking became very difficult. Once I had to get out of the car and let her park. Frustrating and humiliating. In the end, I was down to 50 mg a day. Doc said that wasn't causing any side effects at that low dose. WRONG! When I finally stopped, it took a couple of weeks to become me again. I was shocked at the difference it made being off of it. Some of my hearing came back, thankfully. I did lose 30 pounds that did not come back."

• Jen...
• November 5, 2018

For Migraine Prevention "I am a doctoral student who has carried an A average and ran my own business for 6 years. I started having double vision, memory loss, and constipation. My grades declined. I had to wear glasses for the first time ever. Even with glasses, I still see blurry. I struggle to receive B's in my courses and no longer work my own business. I have gained 30 pounds in 4 months, look 8 months pregnant, and cannot have a bowel movement. A trip to urgent care showed that my stomach and intestines are full and paralyzed. The doctor called me this evening and told me to go to the ER immediately. X-rays showed I have ileus and my stomach and small intestines are much overstretched. I have no blockage, but my intestines are paralyzed from constipation resulting from taking this drug too long. I am getting dressed to go now but wanted others to know that unless your condition is serious, take something else for headaches. Loss of memory, eyesight, and bowel movements is not worth the trade-off."

• Ash...
• Taken for 1 to 6 months
• December 14, 2020

Topiramate for Migraine Prevention "Started taking this just before my first semester of college. It was super effective in getting rid of the migraines, but the side effects quickly became too much. I experienced occasional numbness in my hands, which eventually spread all the way up to my elbows, memory loss, and confusion. I would zone out in the middle of conversations, and it got to a point where I would drop words and even phrases from my sentences as I spoke. At its worst, I sobbed through writing an essay as my mom tried to help me piece my thoughts together into something coherent and stop me from dropping entire sentences as I wrote. Quite possibly the worst experience of my life."

• For...
• Taken for 1 to 6 months
• June 20, 2012

Topiramate for Seizure Prevention "I was prescribed this medicine to treat my petite mal seizures. I was never warned of any potential side effects and never thought to ask, seeing as I had never taken a medicine before. After I began taking this, my seizures graduated to full-blown grand mal seizures. I couldn't speak, I couldn't understand others' speech, and I couldn't sleep more than a few hours most nights. Everything came to a head about four months after I began taking the medicine when I couldn't remember how to say 'Bye' to my dad. I would have rather had seizures every day than stay on Topamax! I got off of the medicine and am now on Lamictal, under which I haven't had any seizures or side effects in the two years I've been taking it."

• Anonymous
• March 27, 2008

Topiramate for Migraine Prevention "I've been taking Topamax for about a year and a half now, and it has drastically cut down the frequency of my migraines. That is so worth the side effects I've noticed. Yes, I've had the tingles and some facial twitches, I've lost about 20 lbs., and I have trouble with word retrieval and memory... but is it worth it? Absolutely! I currently take 250 mg/day-all at night to help minimize the noticeability of the side effects. A good option, in my opinion."

• dim...
• Taken for 2 to 5 years
• November 11, 2015

Topiramate for Migraine Prevention "I was taking this medication for over two years. I had to stop it because my memory is terrible. Places I have been going for over ten years, I forgot where they were and how to get there. This medicine has messed up my life, even after I stopped it, my memory still hasn't returned. I deal with this every day, and it scares me so bad. I have to write things down every day in order to remember. It did help with my headaches a little, but if I had read up on this medication before I started, I can promise you I would not have taken it."

• mel...
• Taken for 5 to 10 years
• April 6, 2013

Topiramate for Migraine Prevention "Began taking Topamax in 2006. Before starting on Topamax, migraines were lasting 4-5 days after onset, and frequency of approximately 3 times per month. I experienced some diarrhea, which subsided after breaking the dosage up throughout the day (200 mg daily). Additionally, I have experienced weight loss (a significant amount of 50 lbs) I could not afford to lose. However, the weight loss has subsided as well. Upon beginning the medication, I had trouble recalling words and memory loss. At this juncture, the side effects have since passed and so have the migraines. I experience 1-2 migraines quarterly. Topamax has been a lifesaver for me. I had tried many other migraine preventatives to no avail."

• Eaz...
• March 1, 2008

Topiramate for Migraine Prevention "I do not recommend Topamax as a solution to migraines. Although it did help keep the frequency of the headaches down at first, in the long run, I had just as many migraines as usual, and there were too many side effects to make it worthwhile. My short-term memory was practically shot, my hands would tremor and go numb at some points, and I experienced an irregular heartbeat, trouble focusing, and sleep issues."

• Jau...
• Taken for less than 1 month
• October 28, 2016

Topiramate for Migraine Prevention "I began taking 25 mg of Topamax once daily due to my migraines lingering 2-3 days at a time. Topamax did a number on my body. I completely stopped eating. Every time I tried to eat, I took one bite and would gag. I felt so extremely full constantly, even though I knew I had not eaten. Topamax completely destroyed my appetite, and although I've been off the medication for 6 months, I still never crave anything. I eat when I'm hungry, but I no longer have any cravings. While taking this medication, I lost a lot of my memory. I was constantly hazy or confused, and I felt like I was always searching for my task. I became malnourished and, confused that I quit taking the medicine completely. I would never recommend this medication because of side effects!"

• PMa...
• June 9, 2016

Topiramate for Migraine Prevention "I've been on Topamax (topiramate) for 6 years and loved it at first. My migraines decreased dramatically, I had weight loss from the appetite suppression, and I overall felt better. But I had pretty bad tingling in my hands and all over my face for the whole time I've taken it. Also, more recently, I've made the connection between my severe memory loss and the medication. I used to be able to retain information and facts like an elephant, but I can hardly recall simple words some days. I'm planning on going off the Topamax (with the direction of my neuro) because the memory loss issue is so disturbing to me."

• Anonymous
• February 22, 2012

Topiramate for Migraine Prevention "Helped a lot with chronic migraines. I lost a lot of weight (I weighed 146 and I dropped down to 123 in two months). I ate less, but I was still eating close to what I ate before being on the medicine. I think it must speed up your metabolism. I had some mood changes, and I did have a little memory loss. I would forget words and things like that. I work with people, so I noticed it more because people would point it out. My hands/feet tingled. I noticed fewer side effects when I took the medicine at night. I only take 50 mg at night, that's all I ever have taken, and it works for me. It does wonders for my migraines, and it's worth the minor side effects. If you are a pop or beer drinker, you will HATE it because it ruins carbonated beverages."

• Sun...
• Taken for 1 to 6 months
• August 12, 2017

For Weight Loss (Obesity/Overweight) "Over the last few years, I went from 125 lb to 184 lb. I've been taking topiramate and Effexor for about 2 months. My doctor said I would lose weight, and I definitely have, but I'm afraid to get on the scale. I feel great as far as energy goes. Memory loss, wrong words, etc. is real. Just look at that sentence formation... This is the best writing I can do on topiramate. Anyway, when I get enough courage to get on the scale, I'll let y'all know how much or how little success I've had thus far!"

• Sar...
• Taken for 2 to 5 years
• October 18, 2016

Topiramate for Migraine Prevention "This has been a lifesaver for me as far as migraines go. At first, I had a few of the side effects: brain fog, forgetfulness, but that went away after a month or so. Without this drug, I get at least 2-3 headaches a week, ranging from dull to severe. I rarely have a migraine while on it."

• WKB...
• June 9, 2017

Topiramate for Migraine Prevention "I had a horrible experience on this medication back in 2005/2006. I started on a low dose of 25 mg/day and had severe nausea, diarrhea, dizziness, fatigue, confusion, and memory impairment. Worked up to 50 mg 2x/day, and the nausea/diarrhea eventually abated, but the dizziness, fatigue, confusion, and memory problems continued, and I developed a bad tremor in my hands - I was dropping everything, couldn’t write legibly, and spilled food constantly. And I still had 10-15 debilitating migraines a month. Had to wean off it, but 10+ years later I STILL HAVE MILD HAND TREMORS. Worst medication experience of my life."

• Ccg...
• Taken for less than 1 month
• September 30, 2016

Topiramate for Migraine Prevention "I've been on this medication for 3 weeks. At first, the effects were unbearable: brain fog, memory loss, loss for words, sleeping all day. I'm going on my 3rd week and almost all side effects have subsided. I still find myself at a loss for words sometimes. I started at 121 lbs; I'm now at 116 and still losing. I find myself never wanting to eat. Soda tastes flat. I don't mind. I like the medicine. I take 50 mg in the morning and 50 mg at night prn."

• KDa...
• Taken for 1 to 6 months
• December 17, 2019

For Migraine Prevention "Started on topiramate after being on Topamax from 2007-2009 (separate review, 10!). Within the first 2 weeks, had problems with balance, memory, coming up with words. For my job, I had to conduct a 3-4 hour weekly meeting with the same info each time. I'd been doing this meeting for 2 years & became unable to do it because I could not remember the info. I was afraid people at work would think I was drunk because I couldn't walk straight & had to use the wall to guide me. Felt stupid because I couldn't come up with simple words. 2 months later, ended up in the ER with 16 stitches in my head because I fell due to balance. When I went to have stitches taken out, my NP said 'hmm interesting' - at least 2 other patients in my Dr's office had been in recently for the same issues (balance, cognitive) & all had been switched to topiramate from Topamax at the same time I had. I immediately got off of it & went back to suffering with the migraines. 10 years later & I still have memory, cognitive, and balance issues."

• Cry...
• January 4, 2015

Topiramate for Migraine Prevention "I still get slight headaches once in a while and use Excedrin Migraine with the Topamax, but it's nothing compared to what I had. The side effects go away, and the ones that don't, you get used to. I still have memory problems, so I had to lower the dose."

• mrh...
• Taken for 10 years or more
• December 25, 2013

Topiramate for Migraine Prevention "I took Topamax as much as 300 mg/day for 15 years, and my last dose was 150 mg at night. I recently changed to Lyrica, which is also an anti-convulsant, and am taking 100 mg/day and find it more effective than Topamax without the memory and lost word problems. I discontinued Topamax because it slowly got to the point where I could not remember something for an hour. Topamax also was causing erectile dysfunction problems for the last 3 years. I do not have this problem with Lyrica. In the end, I was getting 5 or more migraines a week and now get 2 or 3 a week and expect to increase Lyrica to 300 mg/day."

• Tah...
• April 3, 2008

Topiramate for Migraine Prevention "I have been taking Topamax for about 2 full months now. I had a sudden onset of massive migraines. In one month alone, I went 27 days with migraines, I was a nonfunctioning person. I ended up in the hospital for 2 days. Finally, I started taking this wonder drug! I have only had 2 bad migraines in 2 months. I am able to go to work and, most of all, function at home. I do find, however, that I have memory issues and speech issues. Thank God everyone around me is very understanding, and we laugh about it."

• Kat...
• July 23, 2009

Topiramate for Bipolar Disorder "I started taking this medicine several weeks ago with a combination of Celexa for my depression. The side effects are unwelcome and welcome all at the same time. I have memory loss and can't find the right words when I'm speaking to people. I feel tired during the day, but at night, I'm wide awake. My nails have become thinner, so has my waistline. I've struggled with my weight since I was young, [I'm 17 and I started these pills at 260 lbs. I'm now at 231 lbs]. These pills make me feel like food is the enemy. I'm also having decreased sensitivity during sex."

• Tig...
• June 26, 2016

For Bipolar Disorder "Absolutely horrible!! It wasn't until a year of several tests, scans, and a colonoscopy that made me go to another doctor and beg him to find out what was wrong with me. I never dreamed it was this medicine. I had lost 30 lbs, but I had diarrhea, a funny taste in my mouth, weakness, hair loss, fogginess, my memory was bad, and it felt like my muscle mass was going down to nothing. My daughter said I was looking frail all the time. It started getting hard to get out of bed. This went on for a year and a half. I was getting older and taking care of my elderly folks, so I didn't read into it much. I'm so glad I switched doctors, he noticed immediately what it was and told me to wean myself off of it."