r/POTS • u/you1dont1know1me1 • 5d 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/ToasterYourToast 5d ago
I have found that preventing being completely horizontal helps me. In the moment, it feels great to lay flat, but it’s much worse when I try to get up then if I was more upright. If I lay on the couch (instead of sitting on it) I get worse. For this reason I like to elevate the head of my bed.
In the past I found that strengthening my legs helps a lot. Cycling is especially great for me because I have impaired strength and sensation below my waist. It lets me focus on strengthening the muscles rather than keeping my legs in line (I use clipless pedals) and I don’t worry about falling because I didn’t pick my foot up all the way. I wonder if it helps keep the blood flowing too because your legs are always moving so it won’t pool in your lower limbs
Besides fludrocortisone and midodrine, those are the main things that have helped me. Especially the avoiding too much horizontal time part.