Have been off Topamax for 7days and still experiencing the the tingling in hands feet and mouth area and also foggy in the head and loss of balance..And that is why i asked the question above.
Has topamax caused any permanent damage ?
Question posted by Rita C on 10 June 2015
Last updated on 20 June 2020
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.
5 Answers
naturalalchemy
12 March 2019
Thank you to the above posters for sharing your experiences! I too am late to the conversation but it was encouraging to read here in 2019 that I'm not alone in my experience with topamax.
I was prescribed the drug in 2015 for debilitating migraines with accompanied aura.
Initially i took the script home and left it stashed away. It was my first consult with a neurologist to evaluate my symptoms and subsequent diagnostics. It was found that i had numerous lesions, which seemingly served a quick conclusion for my specialist. However, i didn't hasten to start taking them. I don't really know why, at that time i trusted all doctors and medical professionals without question. But something made me baulk. After my follow up where i was still having migraines and no other options From the neuro, i decided to start.
I wish i didn't.
I experienced all the negative side effects in the first month or so. Extreme fatigue, lack of appetite, brain fog, loss of interest in social engagements, diarrhoea, mood swings. It was horrible but i stuck it out eventually becoming zombified. I was terrible company.
I eventually had to get off it as if started uni and honesty couldn't retain anything id learnt. All the studying and note taking and revision couldn't evade the memory deficits caused from topamax. At this point i was getting frustrated with my doctors and losing faith so i worked loosely with an interim GP I was seeing while living away to study in order to come off it.
It was up there with the hardest ordeals I've encountered. I suffered severe and long term insomnia and mental instability. Looking back i can correlate my sudden onset of binge eating and bulimia and subsequent disordered eating behaviours with the same time i was able to stop taking topamax at last.
I developed anxiety and went from a confident, fluent speaker able to stand in front of a full room and direct my staff on their daily duties to a nervous, anxious and unable to deliver a full short speech from nerves and performance anxiety.
I found the cognitive impairment to significantly improve after a few weeks of being off all together however, thoughts gaps continued and still persevere where i find myself sometimes stuck on a Word and can't think for the life of me what i was looking for.
I have my own concerns about the potential damage incurred to my brain was a consequence of taking topamax and whether ill be subject to long term damage or susceptibility to neural degeneration diseases.
Only time will tell i guess but the only thing i regret and wish i could change is ever taking topsmax. And I've since made a lot of dumb and consequential mistakes since then.
naturalalchemy
12 March 2019
Worthwhile to note that my migraines eventually cleared up with better attention to diet and major reduction in processed crap. I started eating better and for the first time since they began almost 10 years earlier, they stopped almost completely. I've had about 2 in the last 3 years and they have coincidentally come on when I've been eating poorly.
Lightslights
22 Jan 2019
I was prescribed Topamax but never took it and am glad given damage it has caused people and think it's ridiculous to prescribe for weight loss given that victoza is a great weight loss drug with no cognitive side effects
Jayney001
22 Jan 2019
This is an old post but I suspect that more people will want to know the answer to this question so I’ll share my experience. I stopped taking Topamax just short of 5 years ago after being on it for about 4 years. The cognitive symptoms persist to this day. I struggle to find words to have a fluent conversation, my mind wanders so I can’t concentrate enough to finish a sentence or listen to somebody else’s. As a result I’ve developed significant anxiety around social interaction and become extremely antisocial. I can no longer stand up in front of people to deliver a speech which is very unfortunate because it was a large part of my job. These symptoms started with Topamax but I stuck it out because it did elevate my mood significantly and I loved the weight loss aspect. Tingling and other physical symptoms stopped when I discontinued the drug but all cognitive side effects persist even now.
This drug has somehow altered my brain and after this long I have no hope of seeing an end to these symptoms. Maintaining the weight loss is dependent on the drug, I very rapidly gained it all back plus some. In many ways I very much regret taking the drug at all.
SissyhatesTopamax
20 July 2015
I was a Topamax user and had to stop due to the severe side effects, and I have noticed that I still have some side effects that are associated with Topamax like the memory loss short term, my cognitive thinking isn't the best anymore. I have been off it for 6 months now, the mouth pain has stopped but the damage that was done to my teeth is on going.
Alfredo94806
2 Aug 2017
Hi, I hope you are feeling better. Im suppose to take topamax for a three month program for weight loss. And now I am reconsidering the decision. Did you ever recover from the symptoms?
Rainezpeace
22 Jan 2018
I , also had to stop taking topiramate because of cognitive issue; short term memory, language fluency; retaining info. I have been off
Medication for 6+ months or so- I still feel like I’m experiencing same side effects. I’m struggling with Short term memory/ retention. Language has improved, but still having difficulty selecting words while in a conversation.
Sweetaep
6 April 2018
I also had use topamax for weight loss and 2 weeks in using it I started having memory loss, difficulties spelling simply 4 letter words, remembering names and also trouble talking a full sentence without buffling.It also had me feeling dizzy and cloudy in my head.I spoke to my physician about it and she told me memory loss was not a side effect she doesn't believe the symptoms I was having were from the medication.Matters not what she believe I stop taking Topamax and some of the symptoms had stop,some reduced but I still having problem with my memory 4 years now.Im not on any medication what's over since then.So,yes,it does has permanent damage.
coloresue
7 July 2015
Topamax hasn't been known to cause permanent damage. You're describing it's side effects. Give it more time to exit your system. Sometimes drugs take much longer than usual to leave your system. If you still have symptoms today, call your Dr. and tell the office staff your symptoms and ask for the Dr's. advice. S/he may want to see you. The usual time for topamax to leave your system is 5 days.
Related topics
topamax, vertigo, tingling, mouth, balance
Further information
- Topamax uses and safety info
- Topamax prescribing info & package insert (for Health Professionals)
- Side effects of Topamax (detailed)
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