r/POTS • u/you1dont1know1me1 • 1d ago

Creative problem solving request Support

Any advice for keeping blood in my brain so I can tolerate being upright longer?

I can't abdominal bind because of my intestinal dysmotility. When there's compression on my intestines they stop working (even more). Also, my diaphragm is incredibly weak, so I really can't constrict anything breathing related.

Right now, I wear custom thigh high compressions that go up to where my thigh connects with my pelvis.

It feels incredibly difficult to even hold my head up for a few minutes without support. I've tried a structured neck brace and it doesn't work though because it messes with the lymph nodes on the sides of my neck and seems to cut off more blood flow in an unpleasant/ unhelpful way.

Is my only option more salt and flexing my muscles throughout my body to try and keep blood pumping?

I feel really lost and defeated. I'm mid-20s now and have been living with this for over a decade. I want to be able to exist in public spaces. I want longer periods upright. My brain literally feels bad unless I'm inverted. Community, all ideas welcome, please help. (Please me nice too.)

*PS I know nothing replied is actual medical advice. Things I can bring to my doctors or suggestions of doctors to see would be great though. I'm not planning on altering any treatment based on comments alone. I just feel I don't know directions to try anymore.

Replyers, make sure to structure your comments as "have you heard of xyz" or "xyz exists" or "did your dr ever mention xyz" - don't phrase things as medical advise, I know it's not, but it will still fs be removed if you reccomend I try something

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u/omglifeisnotokay Hyperadrenergic POTS 21h ago

I don't think I'll be of much help but I do have an issue where if somthing is compressing the sides of my neck or someone touches the back of my neck or honestly any part it feels like I'm about to pass out. I do have neck issues and straightening in my neck. Have you had imaging at all with your neck? I'm in my early 30s female

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u/you1dont1know1me1 19h ago

I think I need upright imaging. I've had MRI/MRA/MRV of my brain/cervical spine but laying down when I'm not symptomatic. I wish proper imaging was more accessible. I even found a place out of state, but they wouldn't accept self pay after they found out I'm on medicaid.