Orthostatic Tremor

Thanks for this.
You've exactly described my symptoms.
My neurologist is prescribing psychiatric meds, starting with clonazepam, which has a side effect of dizziness! I know, I know, sounds wild doesn't it?
I can't imagine using a walker for the rest off my life (I'm 76).
That feels very dpressing....

@bevswerling I have been on a clonazepam for over 15 years, same dose. It has helped me each day, maybe a little adjustment at the beginning, but I feel no side effects. Yes, It can feel depressing, but don't let it slow you down, I'm 71 and walk each morning, go about my daily activities. yes I look for places to sit when I have to stand around for something, have a rolling stool at home to use when needed, but I feel that exercise, limited or no alcohol, good sleep are key to my health.

I have had Primary Orthostatic Tremor for 13 years.No meds helped. I have learned to navigate my daily life.I can't stand for more than 3 minutes now.Too bad there is not much research for this condition. It's chin up and keep going ladies!
Good luck and carry on.
Bevnix

@maryob

Good luck, I had side effects from everything I tried.It definitely changes your lifestyle but you learn your limits and keep trying?🙂

@alexa2020
I tried clonazepam but quit because of the side effects. must say I didn't give it a lot of time. I am prone to medicine side effects (The Side Effects Queen!) Maybe I should try it again????

@ellenshe I would say give it another chance - my start with a half dose for a few days and see how it goes-good luck!

@total99 I had a second stent added to my brain aneurysm 6mo this afternoon it was coiled and one stent. After that second stent, I now have OT, PBA, anxiety, cognitive dysfunction. I take clonazepam but I’m going to start on topamax because I can’t take the clonazepam during the day, I did wean myself off of the clonazepam and only last 3 days of being totally without it and my tremors were horrible. So went right back on. I’m suppose to take it am & pm 1mg. But like I said the daily dose I can’t deal with, I can’t drive if I take it. But my lower back and outer hips are causing me a lot of pain if I force myself to stand to long. So I thought I’d try the topamax, I was on it before for headaches after my brain surgeries. Don't remember any side effects and it’s not suppose to put weight on, it’s suppose to help loss weight to, which would be a plus since I put weight on the last 3 yrs with the medications I’ve tried for OT. Also, I don’t know if you know this, but just because we sit or lay down and we don’t feel the tremors…the tremors are still there, our brains are still firing all the time to try and correct the problem, so if you’re waking up with fatigue, that’s why. I wish they would look deeper into what would actually work for us. I so sick of shaking and so sick of taking pills. I wish you well! 🙏🏼🌺

Even when you sit down and the physical shaking stops, the root cause—a "central oscillator" (a faulty pacemaker network deep in the brain stem and cerebellum)—does not simply turn off. The brain's abnormal network loop keeps firing. You don’t feel the tremors sitting but they are still there. That why many of us have fatigue in the morning when you’re getting up or you’re having hip and lower back pain. The tremors never stop.

@bevnix