Just wanted to check in to let folks know that after my oriiginal symptoms of somewhat variable but mostly 24/7 disequilibriu, tinnitus and fatigue started Jan 2018, and after all the tests and Drs were of no or minimal help (vestibular rehab helped somewhat), I got some improvement in the disequilibrium only with the help of a neurologist titrating me up to 50mg a.m. and 75 m.p.m. topomax in March 2020. It was a ROUGH RIDE getting there with side effects (stomach aches, finger tingling, mood issues, etc) but worth it to mostly get rid of the disequlibirum. What has increased the benefit though is a couple months ago the head of a migraine clinic in the U.S. prescribed 500 mg Divalproex Sodium ER (Depakote) in the evening which has also helped somewhat with mood and fatigue (I was still having 12 days a month of fatigue and tinnitus, also intermittent eye discomfort). Usually these two drugs are not prescribed simultaneously but he said for now it’s OK to “let sleeping dogs lie” since they are both low dose. Hhe thinks I may be OK w/ just Depakote, but I don’t want to risk getting the disequilbrium back. He said the reason to consider going off Topomax is if I was having trouble with word fluency/word finding, which I do have a bit of. I also went on Lexapro around September due to pandemic stress, so that probably helps too. I do still have tinnitus and some not good days with fatigue, especially if I stay up later than my usual bedtime or get less sleep, but my symptoms are not as debilitating and life consuming as before. So I do have hope for the future, whereas a few months ago I was considering retiring and felt I really could not plan for a social life or that my the rest of life would be positive and worth living since so many days were so abysmal. So I do hope others can find solutions that will help them find improvements, even if it takes awhile! Psinger
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