1. < Brain & Nervous System

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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helenstamas | @helenstamas | Oct 6, 2021
In reply to @vicki55 "Hi Helen, I was diagnosed with Orthostatic in Tremor February 2020. I really haven’t found a..." + (show)
@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.

REPLY
3 replies
ocogram | @ocogram | Oct 11, 2021
In reply to @helenstamas "Hi Vicki, I wish I could suggest another medication but I do not know of any..." + (show)
@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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3 replies
ocogram | @ocogram | Oct 11, 2021
In reply to @helenstamas "Hi Vicki, I wish I could suggest another medication but I do not know of any..." + (show)
@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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pmargaret | @pmargaret | Dec 19, 2021
In reply to @helenstamas "Hi Vicki, I wish I could suggest another medication but I do not know of any..." + (show)
@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.

Jump to this post

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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pmargaret | @pmargaret | Dec 19, 2021
In reply to @ocogram "I was diagnosed with Orthostatic Tremor 5 years ago. It is life changing when one cannot..." + (show)
@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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1 reply
ocogram | @ocogram | Dec 19, 2021
In reply to @pmargaret "Yes, very much so! I have had a broken wrist and later a severe break in..." + (show)
@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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pmargaret | @pmargaret | Dec 19, 2021

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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rosa66 | @rosa66 | Apr 5, 2022
In reply to @ocogram "I was diagnosed with Orthostatic Tremor 5 years ago. It is life changing when one cannot..." + (show)
@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?

Jump to this post

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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1 reply
ocogram | @ocogram | Apr 8, 2022
In reply to @rosa66 "How did you taper off Primidone? I’ve been on for one year for Essential tremor but..." + (show)
@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.

Jump to this post

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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1 reply
rosa66 | @rosa66 | Jun 5, 2022
In reply to @ocogram "I was taking 50 mg of Primidone at bedtime. I tapered by cutting the dose by..." + (show)
@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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