Does anyone out there have Primary Orthostatic Tremor?

Bev, do you have anyone at your home to assist you? I am fortunate that my husband does the driving, grocery shopping (like you, I can’t stand in line!), helps with cooking and housework. I also have chronic daily migraines. So I am home most of the time. This is not how I had envisioned my senior years.
Barb

No,I live alone since 2010.
I can do housework a little at a time. We just have to keep trying and hoping a new breakthrough will come.
🙂

Have you tried Mestinon?

No,I don't think it helps Primary Orthostatic Tremor but I will check with my neurologist.
Thank you.

I was diagnosed with Orthostatic tremor at the Mayo Clinic of Neurology in 2021
Mayo has research studies regarding OT, though they do not seem to update the fact that it is progressive. I believe OT has been left behind in research. I am thankful for the 2019 research on slow OT, as this is relevant to many who should not be invisible to the medical field.

I agree,because it is so rare there is no research or meds made to treat it. I have tried many meds and nothing helps. Thanks for caring.

I was diagnosed with OT 5 years ago. I am currently taking propranolol and clonazePAM. I am 70 years old. I don’t grocery shop, or don’t go to a store alone. I immediately check for a seat if I go anywhere or try to find out the seating situation before I leave. Just wondering where the progression leads to.

Hello,
I have had this awful condition for 13 years.Yes it does get worse. I have anything I need delivered. I have noticed this summer I can't walk as far as I used to.
I can't do a lot of the things I used to love.That being said if you plan out everything beforehand you can navigate your activity. It is good to have a friend to help you.(stand in line for you) etc. I don't take meds as nothing worked for me.I wish more research could be done.I wish you all the best and stay strong! 💌

Thank you Bev for responding. It is nice to be able to share thoughts with someone who understands. I know no one else with OT. I am noticing that I can’t do what I use to. Walking on a beach or trail which I loved is difficult because of the unevenness. I use a walker with a seat for extended walks. My life has definitely changed but I try to remember that it could be worse. But I know I am blessed and thankful for my family who continues to help me continue to socialize and get out in the world.

Hi Viki,
I discovered some informative seminars on you tube.
Just search for Primary Orthostatic Tremor and they appear.Dr. Sullivan is very good.
Just take it day by day. It's hard because we look perfectly normal.
Bev