Primary Orthostatic Tremor

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?

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

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.

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

@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?

I just visited my neurologist yesterday, and although he agrees I have OT (which I researched and found myself) he prescribed Physical Therapy AGAIN. I've been to at least 4 places for PT (at my own suggestion) and gave up after weeks of therapy. He does not seem to understand that when I visit him on a good day, that doesn't mean I don't have bad days. Some days I feel like my feet are glued to the floor. I have other things to deal with like arthritis, especially in my feet, It's discouraging and I feel sorry for you, but use walkers, and electric chairs, and do the best you can. Good luck. Mayo is doing deep brain stimulation now. That might be a possibility for you. And there's a mobility disorder in Gainesville, FL, that also does brain surgery.

Hello @franella2, Welcome to Connect. Thank you for sharing your experience with orthostatic tremors. It really helps when members looking for information and answers can find others with the same or similar symptoms and learn what has helped them. You posted in an older discussion which I don't think has any active members.

You sound like you have had good success in dealing with OT and share some good suggestions. Do you mind sharing what you were searching for when you found Connect?

Hello:
I not sure if this is still open - https://www.mayo.edu/research/clinical-trials/cls-20308041
Might be worth checking into. Sometimes when ou call about a study - there might be others you might benefit from.

Here is a short article from 2010 written by Dr. Ahlskog (who is an authority - some might say the authority - in the PD world) - https://newsnetwork.mayoclinic.org/discussion/orthostatic-tremor-significantly-affects-quality-of-life/

That article might be good to show to your neurologist.

Hope this might help.

Peace
Larry

GOOD AFTERNOON LARRY THANKS FOR THIS INFORMATION ON ORTHOSTATIC TREMORS. MY EVALUATION FOR PD INDICATED NO ELECTRICAL ACTIVITY. THE NEUROLOGIST DID NOT TEST WHILE STANDING. I WAS PRESCRIBED KLONOSPAN BY THE NEUROLOGIST BUT MY PRIMARY CARE PHYSICIAN REFUSED TO CONTINUE THE PRESCRIPTION. THIS INFORMATION SUGGESTS THAT I SHOULD MAKE AN APPOINTMENT TO HAVE ELECTRICAL ACTIVITY TESTED AGAIN WHILE STANDING . THANKS BAMMA

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