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.

Hi @helenstamas, welcome to Mayo Clinic Connect. Might it have been this discussion that you read a couple of years ago?
– Monthly shaking episodes that continue to progress https://connect.mayoclinic.org/discussion/monthly-shaking-episodes-that-continues-to-progress/

I'm glad that you started this new discussion specifically about orthostatic tremor. For people who may not be familiar with OT, here's a great explanation:
https://newsnetwork.mayoclinic.org/discussion/orthostatic-tremor-significantly-affects-quality-of-life/
Helen, can you share a bit more about yourself? When were you diagnosed with orthostatic tremor? Did it take a while before your were diagnosed? What aspects of the condition have worsened for you over time?

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My tremors have worsened in the standing position just recently. Walking is a little worse just recently The date 2015 or 2016 when it was diagnosed. The symptoms were present before that. GABAPENTIN was tried no good. CLONAZEPAM
side effects are very bad so Have been on PANNITONE for years now. I think it does nothing for me. My neurologist has no other meds . I have investigated everything by way of the computer, Mayo Clinic INFO ETC. The diagnosis did not take long. My age is85

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I am 65 and have diagnosed for about a year with POT. tried clonazepam but made me too tired.. Now taje Proapranolol with a little success.

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@helenstamas

My tremors have worsened in the standing position just recently. Walking is a little worse just recently The date 2015 or 2016 when it was diagnosed. The symptoms were present before that. GABAPENTIN was tried no good. CLONAZEPAM
side effects are very bad so Have been on PANNITONE for years now. I think it does nothing for me. My neurologist has no other meds . I have investigated everything by way of the computer, Mayo Clinic INFO ETC. The diagnosis did not take long. My age is85

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helenstamas, have you investigated thiamine? This first link is about thiamine injections for treatment however a fat soluble thiamine like benfotiamine may offer the same benefit.Fat soluble forms of thiamine like benfotiamine are more efficient in passing through the blood/brain barrier than water soluble forms. Thiamine, like vitamin D, require magnesium to become bioactive. The inclusion of links on Parkinson's and GI issuse is to show the broad range of health concerns thiamine deficiency touches and this is just a short list. B vitamins works better together so I encourage you to research each. Always consult with your health care professional before using any supplement.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5884259/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4828997/
https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo
https://nootropicsexpert.com/vitamin-b1-thiamine/
https://www.krispin.com/magnes.html

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@vicki55

I am 65 and have diagnosed for about a year with POT. tried clonazepam but made me too tired.. Now taje Proapranolol with a little success.

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@vicki55 Welcome to Mayo Clinic Connect, a place to give and get support.

You were diagnosed with POT and you have tried clonazepam and proapranolol without success.

Members like @helenstamas have experience with this topic and may be able to help answer any questions.

You may wish to read posts and comments from the discussion I have linked below, if you haven't already done so.
https://connect.mayoclinic.org/discussion/monthly-shaking-episodes-that-continues-to-progress/

May I ask what you and your provider are planning for next steps in treatment?

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