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Orthostatic Tremor
I was diagnosed with Orthostatic Tremor in 2016. Symptoms began appearing around 2000 but I thought my back problems made me feel shaky and I needed to sit down. Early symptoms were the inability to stand still, the need to walk quickly, avoiding standing in lines and the sense that I would fall if I I could not find a chair. I have been on a walker since 2017 but I still need to find a chair. Some locking of legs and the feeling that my legs are heavy. I have no tremors while sitting or lying down.
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I have had exactly your problems for some years now. I can walk briskly, but no lingering or standing in one spot. I have a walker with a built in seat that's useful in large stores or when I think there may not be a seat nearby. Anxiety is always with me. Airports are my worst nightmare. Has anything helped you since 2023? I'm tired of checking with doctors who don't have a clue.
@fran45
The Neurologists try different drugs made for other conditions and they don't work and have bad side effects. There is no research for our condition. It is very sad.Good luck to you and we just have to keep navigating and adapting so we can still live a better life!
Bevnix
@bevnix tks Bev. I keep thinking there's something I'm missing and it should be obvious to someone what's amiss! Like you say though, adaptation keeps us going and I know things could be worse. Thanks again.
Hi, orthostatic tremor is one of my dysautonomia symptoms. Dizzy, weak and feel shaky in big stores also. Have you checked your blood pressure while lying, then sitting, then standing and again after standing several minutes? I have orthostatic hypotension (low bp upon standing) which causes cerebral hypoperfusion (low blood flow to the brain) which causes all sorts of deficits. Maybe check it out. Good luck.
@spibill tks. My bp goes up upon standing and I perspire and tremor until I sit or start walking. It's getting progressively worse.
Hmmm, I find myself being drawn into this conversation. I have never thought about there possibly being a connection between my familial tremor, my RLS, and my inability to stand still when I am standing in line somewhere, but I now wonder since all three seem to have a correlation to the urge to walk or keep moving. My RLS is not limited to attempting to sleep; I have an excruciating time keeping still in business meetings, church, long trip driving and any venue that requires me to keep still. When I am standing in line for a while, I feel a need to stretch or march in place; in fact I do so discreetly. I also have famial tremor that is not constant, but it rears it's head at the most inopportune times. Could this all be connected? I never thought about it before. Does anyone in this thread have these same dysfunctions? Could it be a form of ADHD, this constant need to move? I would be interested in input.