I contracted orthostatic tremor about 15 years ago. It has progressed very, very slowly and now, at age 71, I am is still getting by - - shaky with imbalance when standing, but able to walk quite well.
Specifically, it started quickly - - when I was still working for the Federal Government and they had an all-employee class in the auditorium. All the seats were taken so I had to stand in the back. After 10 minutes
or so I started shaking and losing my balance so I had to hold on to a chair. That was the beginning. Since then I have been to many doctors - - internists, neurologists, even a psychiatrist. The first neurologist (highly recommended) prescribed Klonopin some 15 years ago (2 mg daily - - later increased to 4 mg). No improvement was noticed. Recently, I went to Shand's Neurological Center (part of the University of Florida, and supposedly an equal to Mayo Clinic). That doctor recommended .25mg of Xanax to the Klonopin. Still no improvement.
I also had an MRI of my brain with emphasis on the cerebellum. Also a test of my auditory nerve function. Also a test of my overall nerve reaction, with "electrodes" taped to various parts of my body, especially the legs. And, of course, tests to rule out Parkinson's and dementia. All tests proved to be negative.
The last 3 weeks he has been taking physical therapy 3 times a week. Not for a cure, obviously, but supposedly to strecth my leg muscles in various directions in case I should lose balance I would be able to keep from falling, assuming there was nothing to grab onto.
That brings us up to date. I am able to mow the lawn since I have the mower handle to support me, but I am unable to walk with the string trimmer because it must be held up slightly and consequently I can't lean on it, I wobble too much."
After reading several print-outs wherein OT sufferers switched to Neurontin after not getting results from Klonopin, I thought I'd try it. After weaning myself off Klonopin, by the time I got up to 1800 mg a day on Neurontin I started having unpleasant side-effects. My shakiness got worse and sometimes walking or keeping my balance was quite difficult.
So the moral of the story is: For those who thought about trying Neurontin, be aware it doesn't work for everyone. So, needless to say, I'm back on the Klonopin (2 mg twice a day) and feeling better, but of course still shaky when standing. I have pretty much resigned myself that I'll just have to live with it.