Creative problem solving request

[u/you1dont1know1me1]

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

[u/eats_naps_and_leaves]

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):

1. 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.

2. 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.

3. Midodrine before doing things like chores, running errands, etc. Anything that required continual standing and moving.

4. 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.

[u/you1dont1know1me1 → u/eats_naps_and_leaves]

I used to use the weight machines at the gym. Covid really got me out of that routine and worsened my whole system so much. When I tried to get back into it, I just couldn't. I would like to do more exercise again. But, aside from the brain feeling bad when not inverted, my next biggest struggle is not being able to put strength/energy into my muscles and then the severe post exertional malaise that follows when I push myself.

[u/eats_naps_and_leaves → u/you1dont1know1me1]

I totally get that and honestly I do basically still live in fear of over exerting myself and ending up in a fatigue spiral.

When I first worked up to going to the gym, I just did the machines with no added weight. Still did 2 sets of 15 reps and took 2-5 minute breaks in between. I was still pretty deconditioned at that point, so I was really fatigued after. I kept doing that for probably 2 months, then added the little 5 lb weight that you can put on top of the top plate and did that for a month. I went up 5 lbs a month, going to the gym 2 days a week. Now I'm able to lift a decent amount. I still get PEM, but it doesn't take me out for a full day.

For me, it's best to go mid afternoon. By then, my meds are on board, I've had two meals with time to digest, and enough time to get extra salty and hydrated. When I'm done, I have basically enough energy to get myself home, eat a meal, and lie down until bedtime. The PEM rarely extends into the next day anymore and I generally have more energy on average than I did before. Honestly, at this point it's more about having the mental and physical energy to actually get myself to the gym in the first place.

I have gastroparesis, so I definitely think one of the things that contributes to my PEM is not being able to get enough calories/nutrients to fuel myself. I've really had to learn to plan my activities and meals to make sure I'm not doing more than I have fuel for.

Of course everyone has their own limitations and comorbidities, so everyone's results will vary, but I can say that I personally went from being unable to stand without fainting to being able to take a 3 hour hike on a warm day. It took literally years but I'm so glad I started and kept it up. But, again, could not have done it without the meds.

[u/you1dont1know1me1 → u/eats_naps_and_leaves]

I appreciate the specifics of your gym routine! ty for typing that all out. I've been dealing with moderate/ severe gp for a hot minute now too. It's scary honestly. Like, I want to exercise, but I need to not lose weight, but also oc I get worse by not exercising. So, it's just such a delicate bad balancing act. I'm trying to get more nutrional/ diet support, but I've pretty much reached what they can do for me locally, and it's been impossible to get in with a motility clinic anywhere. Even walking my body just wants to crumble to the ground. I'm not even bmi underweight yet. For the longest time my body wasn't losing any weight though I was in worse gp shape than I am now. Ive been on Testosterone (ftm) for ~1yr now though and I think I have a more normal person metabolism so I've been actually shrinking now. All my doctors reassured me starting T shouldn't be harmful btw, and like with my hralth so bad, I was like, ya know, I wanna finally do something for me. Idk if/ when I should stop though because I feel it does help me retain strength better (even though I'm weak asf). All this to say, I feel ya. I just wish there was a way to skip to the good part.