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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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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@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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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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@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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