Primary Orthostatic Tremor

Posted by helenstamas @helenstamas, Aug 10, 2020

A couple of years ago I was on this website and the topic was Orthostatic Tremor. because I had it I would like to communicate with someone who has the same condition. Also I would like to know if the condition worsens over time. Suddenly, mine has.

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@vicki55

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

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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.

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@helenstamas

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.

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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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@helenstamas

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.

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There is a lot of information at http://www.orthostatictremor.org

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@helenstamas

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.

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There is a video on Itunes of a British-sounding man describing and showing his orthostatic tremor! It was EXACTLY my condition except that he was much more worn out after a small amount of standing! Try and find it! We need more recognition of this condition!

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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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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?

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@pmargaret

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?

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So sorry you’ve had fractures to deal with. I am so fearful of falling during the winter (osteoporosis plus O.T.), and stay home if it is at all slippery outdoors. Orthostatic Tremors is so misunderstood. I find even those who know I have it, forget my struggle to stand, because I can walk!

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Exactly! I feel lucky to be able to walk without problems, but I get very frustrated when trying to cook or even take a shower - very fearful of falling. I live alone but my son also lives in my building in another apt, thank God, and he helps me a lot, but he doesn't really get it either. I guess I try too hard not to appear disabled, but I am! Truly! Never saw this coming...

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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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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.

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@rosa66

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.

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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.

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@ocogram

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.

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So you cut in half and again in half?!such small pills!!! :/
How would you recommend I taper the 50 am and 50 pm?
When I started it was 25 at night for 2 weeks, then add 25 am for 2 weeks, then 50 pm for 2 weeks then 50 am…. I’m scared I’m going to have bad side effects!

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