I have recently stopped taking Topiramate and was switched to amytriptyline. I had been taking Topiramate for over a year for prevention of vestibular migraine with vertigo. I also use sumatriptan for migraine on a prn basis. When I first started Topiramate, I lost 40 lbs., but then my appetite came back, I regained about 10 lbs and my weight has remained stable with no other major side effects. My neurologist assured me that my memory loss, etc. was due to normal aging. I saw the neurologist in April because I was concerned about increasing incidence of headache, and cognitive problems. Also, I was having other physical symptoms. She asserted that the vestibular migraine was a misdiagnosis, that I had menier s syndrome. She started me on HCTZ, continued my Topiramate 100 mg. h.s., and referred me back to ENT for evaluation. That appointment was 3 months later (last Wednesday). In the meantime I sought treatment for other symptoms: stomach pain, and loss of appetite. I was having feelings of numbness in hands and feet, apathy, chronic fatigue, feeling as if I couldn t move with agility, general dysphasia. My primary doctor gave me omeprazole and ranitidine. Neither was helpful. I had an upper endoscopy that was totally negative. I was told one blood test indicated I had polycythemia Vera, and was referred to Hematology for consult. Negative there, too. After about 6 weeks of agony, I have lost 16 lbs. My housekeeper said, maybe it s your medication. I knew immediately that she was right and stopped taking the Topiramate (a week ago Thursday). I immediately tried to contact my neurologist, learned she is no longer in that department, but they gave me an appointment with a brand new resident. That appointment did not go very well, his attending came in...brief eval. I was given the prescription for Elavil 25 mg who s (without any precautions mentioned) and f/u appointment for 4 months! I finally had first appointment at ENT on Wednesday for testing. The audiologist assured me that I did not have menier s. It is now a week and 2 days since I stopped the Topiramate. The stomach pain is mostly gone, the numbness in my feet greatly diminished, but still no appetite. I feel much clearer cognitively, I body feels looser , and I have been up and doing normal activity since 7 am! I seem to be tolerating the Elavil ok, but have a little lightheadedness. I was concerned about the interaction/ side effects of Elavil considering the fact that vertigo is already a problem. I am not happy about the prospect of weight gain. I can live with the photosensitiveity, but not happy about it. So I was looking for other alternatives. I also was looking for reviews to learn if others have had similar experience with the Topiramate. I am angry, that after seeing 4 different doctors, and having expensive testing done, no one saw what was wrong and I ended up managing my own case.
posted on
Wed, 20 Jul 2016

Sun, 8 Sep 2019
Answered on

Mon, 9 Sep 2019
Last reviewed on