Today is December 20th 2018 and I thought I would start to document my experience with Orthostatic Tremors…I have found this website and thought posting my thoughts may be of help or you might just get a kick out of what I have been through so far….
I will be 73 years old next month and am in pretty good shape, thank God, except for the OT…
The best I can recall it all started about 5 years ago…I was still working at a sit down desk job across a busy street from McDonalds where I often went for lunch…One day on my way back with my lunch I fell in the middle of the street an my lunch went flying all over the street….I quickly gathered up my stuff as I saw cars speeding my way…I had been having OT symptoms prier to this incident but I didn’t know what was wrong with me, so after my fall I thought this would be a good time to go to my doctor for a check up…I explained my systems to him and showed him my tremors while standing and the uneasiness of standing still… He then put me though some basic tests (walking up and down the isle etc…)….Questions about family history (which my mother who lived to 98 ½ with Parkinson’s) but could find no solution to my problem… He suggested an MRI which my insurance company wouldn’t pay for until I went through Physical Therapy first…At PT I told them about my systems and got blank looks on their faces… I told them I called it the “tripod effect” where if I had something to lean on like having a third arm or leg I was just fine… more blank looks… So I did my PT and, as you know, they didn’t find anything wrong with me and recommended an MRI….I had the MRI and they found some things wrong with my back and I had some back surgery done…. I felt pretty good until the meds wore off ….I did have to admit that my back did feel a little better, however the OT was still there…So I was sent to a Neurologist and after explaining my systems and going through the same kind of tests he admitted that he had never seen this kind of problem before…(Now these were good top notch doctors)…so I went home thinking I would just have to suck it up and live with it….
A year or so went by and I start to notice that I couldn’t stand in the shower for fear of falling, standing in line at a restaurant or at the supermarket (killer) or any standing in place would activate the tremors…. More time went by and I decided to try another Neurologist… This guy said he had never seen anything like this, however he had a college 10 years ago who had a patient with these systems…so he opened his laptop and googled his colleges name wherein Orthostatic Tremors popped up….He then goolged OT and wala there I was….The article also said they were having some success treating OT with a couple drugs…He put me on Gabapentin 300 MG 3 times a day….I saw no relief ….So they added Primidone 50 MG twice a day…BAM ! …tremors cut in half….However, standing unsupported is still a big problem with prolong standing supported or not and the meds made me drowsy and clumsy, so I stopped taking the Gabapentin and the tremors didn‘t change, better or worse …
I could go on about how I deal with OT and how other people look at me, but I have bored you enough so I’ll close for now…. Thanks for letting me vent to those who understand and can relate…. If you want someone to compare notes with bring it on….
Donald R. Witt