New to the site and hopeful. Sorry if this is in the wrong forum, but couldn't find a spot for my condition to fit into. I was diagnosed with Hashimoto's Encephalopathy last fall. Have done fairly well after IV steroids, but continue to battle headaches and tremors on a regular basis. Just finished 2 months of oral prednisone (low dose) with an initial 4 days of relief, but a rapid return of symptoms. I work about 7 1/2 hours a day (used to be 9 1/2), but don't function real well outside of that. Would be very curious to talk to others with this condition and see how they are getting along. Does stress play a role in making my headaches worse or more frequent? Just let me know if there is another spot to post this that would be more appropriate.
RX: Daily - Verapamil, Trileptal
PRN: Relpax, Prednisone, Dilaudid, Lortab, Lidocaine Nasal Spray
Thanks for responding. I will try the HELPS area as well. If you don't mind letting me know where I can find some of the articles about HE, that would be great. It sounds like your wife is much worse off than I, but I can relate to some of the things you said. I was taken by ambulance to a large, well known, University Hospital and subsequently labeled as a neuropsych case. I had been pretty dosed up to stop the myoclonus and make the trip easier, but they interviewed me in the ER without my wife (or anyone else). I hardly remember anything I said. Oh well. In December, I had 5 days of IV Solumedrol which helped a lot after the side effects wore off. My condition apparently was not bad enough as I was not given any oral steroids after. My neurologist has said that if symptoms return, then we will do the IV again and then do 6-9 months of oral. I have tried low doses of prednisone (10 mg every other day), with immediate help, but a return of symptoms 4 days later. Off of that now and having increased myoclonus again. Will be calling my doctor soon.
Anyway --- thanks for taking the time to write and hope to keep in touch. Give my best to your wife.