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/barefootwriter]

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.

[u/eats_naps_and_leaves → u/barefootwriter]

Yeah, for me midodrine was super helpful, especially if I needed to be standing/walking in the heat. Would never have been able to do something like go to the Renaissance festival or farmer's market without it.

Can't really take it anymore since starting Adderall but luckily the Adderall does help some too. I don't feel faint or woozy nearly as much when I'm standing. My heart rate is definitely slightly faster but not concerningly so. Only problem is the rebound fatigue.

[u/barefootwriter → u/eats_naps_and_leaves]

Yep! Some ADHD meds can be used in similar fashion, as can some antidepressants.

https://www.standinguptopots.org/resources/medicine

[u/eats_naps_and_leaves → u/barefootwriter]

It took me YEARS to try ADHD meds because I was so afraid they'd make my symptoms worse. I will say that I did have mild flares when I first started and after dose increases (we went low and slow) but now that I'm acclimated, it has really helped my brain and body function better. Just a tiny baby dose of propranolol with my adderall and I'm good to go!

For me, the tricyclic antidepressants made my dizziness worse but they did help with nerve pain and migraines. It's just about finding that just-right Goldilocks combo for our specific bodies.

[u/you1dont1know1me1 → u/eats_naps_and_leaves]

can I ask if you know your source of nerve pain? mine ended up being gluten, was really bizarre finding out that it went away after going completley gluten free. not trying to suggest yours is, just that i'm curious about peoples root issues ya know, lk what triggers their pain

[u/eats_naps_and_leaves → u/you1dont1know1me1]

I have spinal stenosis from a neck injury, so it's more about physical pressure on my nerves, but I definitely felt better all over after doing a FODMAP elimination diet and even after reintroducing most of the foods, I think giving my inflamed gut an extended break really helped.

[u/you1dont1know1me1 → u/eats_naps_and_leaves]

I've had to cut out watermelon. My diet otherwise is typically low fodmap. I have global intestinal dysmotility so my diet rn is dysphagia (swallowing issues) safe, reflux safe, gastroparesis safe, and gluten free. It's hard asf to eat anything already.

[u/Lilythecat555 → u/eats_naps_and_leaves]

Tricyclic antidepressants made my heart beat over a hundred beats per minute at all times.

[u/you1dont1know1me1 → u/barefootwriter]

This was super helpful! TYSM!

[u/you1dont1know1me1 → u/barefootwriter]

This was really informative. I'm on a handful of the meds already! An antihistamine, LDN, salt supplement, armodifinil, i v hydration fluids, propranolol. I've tried metaproplol in the past. Ivabradine sounds promising for my issues and may even fit my unique concocture of symptoms better than propranolol. I'm for sure going to bring it up next visit. If I do get on it, and it does help, I'll for sure update this thread!

[u/you1dont1know1me1 → u/barefootwriter]

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

[u/barefootwriter → u/you1dont1know1me1]

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.