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Does anyone out there have Primary Orthostatic Tremor?

Posted by bevnix @bevnix, Jun 28 9:29pm

I have Primary Orthostatic Tremor. I have had it since 2013.
I would like to share discussions with others that have this rare disorder.
Beverly J Nixon
Maine

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alexa2020 | @alexa2020 | Sep 13 9:32am

just know that you are not alone in your struggle. I have had it for 25 years. I am fortunate as it has not progressed. I try to live a healthy active life, one day at a time. I take .05 clonazepam x2 daily. it helps ease the tremors it a bit. I find that doing core exercises on the floor helps. I will be 71 this week.

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bevnix | @bevnix | Sep 13 3:06pm
In reply to @alexa2020 "just know that you are not alone in your struggle. I have had it for 25..." + (show)
Profile picture for alexa2020 @alexa2020

just know that you are not alone in your struggle. I have had it for 25 years. I am fortunate as it has not progressed. I try to live a healthy active life, one day at a time. I take .05 clonazepam x2 daily. it helps ease the tremors it a bit. I find that doing core exercises on the floor helps. I will be 71 this week.

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Nice to hear from you.I am 13 years in,but mine has progressed. You are right day by day.Take care!
Beverly

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kadfrompa3232 | @kadfrompa3232 | Sep 13 9:40pm
In reply to @alexa2020 "just know that you are not alone in your struggle. I have had it for 25..." + (show)
Profile picture for alexa2020 @alexa2020

just know that you are not alone in your struggle. I have had it for 25 years. I am fortunate as it has not progressed. I try to live a healthy active life, one day at a time. I take .05 clonazepam x2 daily. it helps ease the tremors it a bit. I find that doing core exercises on the floor helps. I will be 71 this week.

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how were you diagnosed with this tremor?

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alexa2020 | @alexa2020 | Sep 14 2:51pm

I initially did the research myself trying to figure it out and self diagnosed. I saw a movement disorder neurologist and he confirmed my diagnosis with a series of tests.

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bevnix | @bevnix | Sep 14 3:23pm
In reply to @alexa2020 "I initially did the research myself trying to figure it out and self diagnosed. I saw..." + (show)
Profile picture for alexa2020 @alexa2020

I initially did the research myself trying to figure it out and self diagnosed. I saw a movement disorder neurologist and he confirmed my diagnosis with a series of tests.

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That is exactly what I did!

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