Orthostatic Tremor

I am the same!! I hate standing in lines at the store due to this. If I have a cart I cAn manage but I think out brain is already wired to get nervous under these situations and it makes it worse. I also tremor at sitting at lying but it’s the standing still that is the worse because you feel like you might fall.

I have been taking small doses of Clonazepan- special compounded in a liquid since I am a side effects queen.
If I try to up the dose as my doctor advises, the tremors get worse (I also have essential tremors)
Has anyone else had the experience with a med that is supposed to help and just makes things worse?
Thanks

I was diagnosed with orthostatic tremors about 6 years ago. I took primidone for about 3 years. It did not help the tremors and made me feel less “grounded”, even when sitting in a chair. Things I once enjoyed are now stressful…cooking, shopping, gardening, attending social events. It has changed my life tremendously, and is misunderstood by others for the most part.

I also hate standing in line. If I can lean on something I’m ok but walking in open spaces is my worst. I find it difficult to walk across roads or car parks. If someone is walking on the right hand side of me I’m ok or even if there’s a building or something. Some days are worst than others. It’s the weirdest thing and hard to explain to anyone

My symptoms are similar to the ones described above. These symptoms accompanired the onset of orthostatic hypotension. I use a cane or walking stick to keep my balance. Just this week I purchased two hiking poles for better balance, so that I can attempt to walk more on flat sidewalks in my neighborhood. Very discouraging.

As I mentioned earlier, I’ve been on a walker since 2017. I have no balance anymore, and after having knee replacement in 2017, I have also found I can’t walk without shoes because of needing foot support.
Has anyone found that they can no longer walk barefoot?

Keep on walking as long as you can! We need to keep our legs, thighs and arms strong!

It’s difficult because we are always looking for a chair!

Hi, I w as diagnosed in December 2022, I’m 58. It’s sucks! Just the thought of going somewhere and thinking I may have to stand even a very short time, Anxiety takes over! I don’t like leaving the house, but I do. I’d like to know if the poles are working for you, because I’ve been thinking the same thing. One walking stick isn’t enough for me. I’m not fond of thinking I’m going to need a walker down the road, I was very active, it’s now made me very withdrawn. Not that I ever cared what people think, but I have to say, I’m uncomfortable now being out. Always looking to sit or lean on something is beyond frustrating. If I get stuck standing too long, it’s goes up my trunk and into my arms. They say it isn’t progressive, but they can’t give us a sound yes on that I don’t believe anyway! I only can hope I don’t get any worse.
Sorry for venting, I was just going to ask about the poles! I hope you found that they help you, if so, please let the rest of us know how you’re doing. 👍🏻

Yes, I find that the poles help. Standing is hard. Walking a block is harder. I sit every chance I get.

I have improved with my POTS since my primary care doctor and a nuerologist changed some of my prescription medicines and eliminated a couple of others.

I choose not go to any situation or setting that does not accomodate my new limitations.

No physician has diagnosed a cause of my POTS. Was it Covid? Was it the three Covid shots?

The timing was suspicious.

How about you?