Does anyone out there have Primary Orthostatic Tremor?

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.

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

how were you diagnosed with this tremor?

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.

That is exactly what I did!

I've had it for over 9 years. I'm 56 now. It took a while to realize why my legs shook. I first thought I was overly nervous or something. I had tests done by a neurologist and then diagnosed with POT.
I have been prescribed Gabapentin and Propranolol. I have a high sensitivity to medication, so even at the lowest dose, the side effects made my daily life difficult. The Gabapentin made me feel high, and I didn't feel like doing anything productive. The Propranolol made me so sleepy, I couldn't keep my head off my office desk. The Gabapentin did help with the tremors, but the Propranolol low dose did not. My quality of life did not improved with either drug.
I do weight training and walking on a treadmill, several times a week. I think it will help me with my balance and strength, as I get older.
Waiting in line, anywhere, is always an issue for me. I feel like people look at me, and think I have some kind of problem. It's also very hard to socialize. If there isn't a wall to lean on, I have to find a chair. It makes it hard to socialize, because I'm thinking about finding a wall or chair. I don't want to tell people about my tremors, especially in a general socializing setting.
One of my arms has progressed with the tremors. My legs and the other arm, seem the same. I do temporarily get worse if I'm cold, scared, nervous, etc.
I read about Focus Ultrasound (FUS) might be beneficial for people with primary orthostatic tremors. I have not talked to my doctor about it yet. I hope there will be something discovered, that will help.

@bevnix I have had it since 2013.No meds helped.I also felt like I was in a stupor. I am 73 now.My quality of life is gone.
I do the best I can but have had to give up most everything I enjoy.
I have most supplies and groceries delivered.
Just keep swimming! 🙃

@patmc87