Primary Orthostatic Tremor

Hi Helen, I was diagnosed with Orthostatic in Tremor February 2020. I really haven’t found a medication that provides help. I do take one clonazepam at night. I’m unable to take them during the day because they make me too tired. I can walk fine but standing after a minute my tremors began. Of course it is difficult to remain in line at a store or anywhere else. Vicki

Hi Vicki, I wish I could suggest another medication but I do not know of any that help. Primidone is suggested but it did not give me any relief. I make sure that I exercise every day, by walking and doing floor exercises. I have continued them for the last several years . Your description is exactly what Ortho Tremor is.

Hi Vicki, I wish I could suggest another medication but I do not know of any that help. Primidone is suggested but it did not give me any relief. I make sure that I exercise every day, by walking and doing floor exercises. I have continued them for the last several years . Your description is exactly what Ortho Tremor is.

Hi Vicki, I wish I could suggest another medication but I do not know of any that help. Primidone is suggested but it did not give me any relief. I make sure that I exercise every day, by walking and doing floor exercises. I have continued them for the last several years . Your description is exactly what Ortho Tremor is.

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?

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?

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?

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 was taking 50 mg of Primidone at bedtime. I tapered by cutting the dose by 1/4 every two weeks (used a pill cutter). This worked for me and I didn’t feel worse during the process. I was glad to be done with the primidone and it’s side effects. My orthostatic tremors have been no worse without it. I hope this will work for you.