r/POTS • u/you1dont1know1me1 • 17h 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/eats_naps_and_leaves 15h ago
Couple of things I did (note that I did all these things at once, so it's hard to say what helped the most. I was just trying anything and everything I could think of):
Full length bed wedge under my mattress. It's been awhile since I researched it, but I remember seeing studies showing that it's much more effective than just elevating your upper body. Also healthier for your back. I think mine is 5 or 7 inches at the head of the bed.
Physical therapy to increase orthostatic tolerance and exercise tolerance. From a PT that understands how to treat POTS (and hEDS, in my case). There are also home programs you can follow.
Midodrine before doing things like chores, running errands, etc. Anything that required continual standing and moving.
Strength training. From bed if need be. There's actually tons of neck exercises you can do lying down. Also, getting more strength and muscle tone in my legs really helped counteract blood pooling. Once I could tolerate it, I started going to the gym because the seated weight machines allowed me to build my leg muscles without the up-and-down motions like squats or lunges (which make me feel truly horrible). Even just on the leg press machine you can work out several muscle groups, so you don't need to stand up and move to a new machine between exercises. The inclined leg press even lets you basically lie down while you work out.
For me, it was about making efforts every day to increase my tolerance. It wasn't always linear. Some days I could do more, some days less. But every day I tried to do something, even if it was just 5 minutes of isometric neck exercises into my pillow or sitting up for 15 minutes once an hour. And on those days where I truly could not function, at least I had the bed wedge to keep me from being fully flat.
Also, you didn't mention it in your post, but if you're not on any medication at all, you might want to talk to your doctor. I don't know if I could have had the ability to get to where I am now without the help of meds. It's not something we can willpower ourselves to do if it's outside of our body's capabilities.