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Primary Orthostatic Tremor

Brain & Nervous System | Last Active: Jul 29, 2023 | Replies (29)

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@ocogram

I was diagnosed with Orthostatic Tremor 5 years ago. It is life changing when one cannot stand for very long! I tried primidone for 3 years without improving, so stopped with MD’s approval. I am 75, so am hoping O.T. does not get worse. It is difficult for others to understand…we can walk, but not stand. Does anyone else find that to be true?

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Replies to "I was diagnosed with Orthostatic Tremor 5 years ago. It is life changing when one cannot..."

Yes, very much so! I have had a broken wrist and later a severe break in my arm from falls due to instability, but most people don't get it and think I can just get up and go whenever! I use a cane outside my house, but also a walker if long walking is needed and I might have to sit. Very disabling, especially since I don't think my neurologist is really concerned. I must seek someone else in the Chicago area. Any suggestions?

How did you taper off Primidone?
I’ve been on for one year for Essential tremor but increase in depression, anxiety, etc is not worth it.
I take 50 am and 50 pm.
So scared about the taper as I’ve had really bad withdrawals from other meds.
Thank you.

I am 74 and a neurologist suggested I have Orthostatic tremor. I went to see the neurologist because I had fallen maybe five times in the last year or two, for no apparent reason. The only symptom I have at this time is that I cannot stand on one leg without falling over. I can stand on one leg while supporting myself with my arms on a table. I cannot try to step into one shoe. I fell again yesterday because I picked up my right foot when trying to arrange the edge of a rug that had curled up. I immediately fell to the floor on my left side, no injury except a bruise on my hip. And embarrassment! But I can handle this as long as I remember what I can’t do 😐. I’ve read that this tremor can cause other symptoms but so far I feel very fortunate.

However, I have occasionally had what is called on this site “internal vibrations’. Is there a connection!?