The Orthostatic Tremor Forum (archive)

Hello -
I have read the forum many times but never wrote. I was diagnosed by neurologist in San Diego, California about 18 months ago. I had hope to attend the Omaha convention last fall, but rotator cuff surgery the end of August p
ut me out of commission for a while. I have been on gabapentin (2700 MGM/day), then tried both clonazepam and primadone, both of which caused mental confusion and "goofiness". I have a consultation appointment at the Mayo Clinic Neurology Department Movement Disorder Clinic starting Tuesday, April 7. Reading through the forum has certainly given me many more questions to ask. I am 68 years young (I hope) and would hope to find some way of stopping the escalation of symptoms and my own "personal earthquakes". I do have a tripod stool that is very lightweight that I take with me to places that I am unfamiliar with as far as seating or a place to lean. So far, that has been a great help. I will keep the forum apprised with any recommendations and results. My best friend through Nursing School was diagnosed at about the same time, does seem to be very weird.
Rinda

Rinda: Will be eagerly waiting to hear about your consultation at the Mayo Clinic. [/quote] " My best friend through Nursing School was diagnosed at about the same time, does seem to be very weird." It doesn't seem weird to me but interesting because thru the years I have observed in our OT population there seems to be a large number of nurses and teachers. Maybe a higher explosure to viruses??????? Hope your trip to the Mayo will be a good one.

Gloria

Saw a fantastic neurologist there, had MRI with contrast, "movement disorder test" (hooked up to many leads which showed and measured tremor activity). Dr. Bower stated I was "classic case", felt my best option at this point is Clonazepam. He feels it is the most effective treatment at this time. I had been on it previously but in conjunction with high doses of gabapentin, he felt there could have been interactions between the two drugs that gave me side effects. My daughter informed me I seemed like a zombie and was very inappropriate then, so the Clonazepam was stopped, but gabapentin continued. I then tried Primidone with the gabapentin, and then I knew that I was goofy and also had tunnel vision. I discontinued all meds approximately 3 weeks before the Mayo Clinic visit, and with the current regime of just Clonazepam seem to be tolerating okay. We did discuss DBS, he said they have done it 3 times at Mayo. Two patients said they saw an improvement, but the "movement disorder "read outs showed no change. He felt that this was not a good alternative for me. If someone is just finding out about OT, I would highly recommend the Mayo Clinic, they were very caring and took time with all tests and MD visits, answering what they could considering there is so little that seems to be able to help, at least currently.

Rinda: Good to hear your visit to the Mayo Clinic was a pleasant and comprehensive one. The Mayo Clinic has a reputation as being just that. Keep us posted how you do with Dr.Bowers suggestions. Gloria