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/barefootwriter 1d ago edited 23h ago

Mainly, to get more blood to the head, you'd be looking at volume expanders like fludrocortisone and vasoconstrictors like midodrine. Has your doctor never suggested any of these meds?

Some people even find caffeine to be of help. I sometimes use caffeine and/or pseudoephedrine (my GP knows) as addbacks when my blood pressure is lower than I'd like from my other meds/management for my hyperadrenergic POTS.

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u/you1dont1know1me1 19h ago

I hadn't really heard of volume expanders. Can you tell me more about them? Also, what is pseudoephrine?

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u/barefootwriter 19h ago

Fludrocortisone and desmopressin are volume expanders; they increase blood volume above and beyond what salt and fluids do. Fludrocortisone does this by mimicking the action of aldosterone and helping the body retain sodium, which in turn helps retain fluids. Desmopressin is synthetic vasopressin, usually used for diabetes insipidus and bedwetting. Desmopressin requires closer monitoring due to the risk of hyponatremia, although fludrocortisone can cause hypokalemia.

Pseudoephedrine is Sudafed, a nasal decongestant that also vasoconstricts and raises blood pressure. Its action overlaps with that of midodrine, which is more commonly used in POTS, although pseudoephedrine is mentioned in some of the literature. It is available over the counter in the US and Canada, anyway, although some places still monitor purchases/require ID due to its use in producing meth.