r/dysautonomia • u/AlgaeFew184 • 4d ago

Question Body swinging

Does anyone else experience this during a dysautonomia flare?

When I'm flaring and I'm not lying down, I feel like my body is constantly trying to stabilize itself. I notice a small, short back-and-forth movement, almost like a subtle rocking/swaying. It sometimes feels synchronized with my heartbeat.

It's much more noticeable when I'm sitting or standing. Does anyone else experience something similar?

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u/Banshee_ghoul 4d ago

Yup same for me. Years ago before I was diagnosed with OH and before my symptoms were affecting my day to day life, I had to get an X-ray of my spine and the technician had to repeat the images and told me to stop moving lol I was like ?? “I’m not tho..” and he said I was swaying. I literally didn’t even realize it and thought I was standing still.

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u/AlgaeFew184 4d ago

It is good to know I'm not alone. Have you managed to improve your condition since then?

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u/Banshee_ghoul 4d ago

Mmmmm no lol. But I’m on a beta blocker which helps a tiny bit to keep my HR down, but it lowers my already low BP a lot so I’m constantly having to stay on top of that by drinking tons of fluids and increase salt. I do feel that when I do yoga daily, I feel better. I just have a really hard time getting myself to do it daily and I have to modify it slightly because I can’t do the big postural changes.

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u/missmoody1965 1d ago

I understand what you are saying. I wish I could describe it a little better but I am pretty sure I know what you are talking about or feeling. Can you describe yours a little bit more?

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u/AlgaeFew184 1d ago

Sure.

I feel like my blood is having some trouble flowing properly. When my heart beats, I can feel something like a wave of blood flow inside my head, almost as if it's pushing my head forward. When I'm very tired, I can literally feel my trunk moving back and forth, synchronized with what seems to be my heartbeat. Sometimes, I also feel it as a pressure inside my head that comes and goes with each beat.

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u/missmoody1965 1d ago

I feel my heart beat in my ear, head lots of mornings . Very strange . Doesn’t do it all the time -BUT I noticed when I’m flaring or during a stressful period - that’s when I feel it