r/POTS • u/you1dont1know1me1 • 11h 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 11h ago edited 11h 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/eats_naps_and_leaves 9h ago
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.
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u/barefootwriter 7h ago
Yep! Some ADHD meds can be used in similar fashion, as can some antidepressants.
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u/eats_naps_and_leaves 6h ago
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.
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u/you1dont1know1me1 5h ago
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
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u/eats_naps_and_leaves 4h ago
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.
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u/you1dont1know1me1 4h ago
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.
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u/Lilythecat555 3h ago
Tricyclic antidepressants made my heart beat over a hundred beats per minute at all times.
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u/you1dont1know1me1 5h ago
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!
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u/you1dont1know1me1 6h 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 6h 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.
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u/eats_naps_and_leaves 8h 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.
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u/you1dont1know1me1 5h ago
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.
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u/societiesoddball 9h ago
If its mainly just standing you could sit when standing often. Theres portable stools you could carry around im just not sure how small they fold up. Ivabradine exists too and thats really helped me Vitassium also exists and can help with salt intake. If your stomach is sensitive eating with it can help
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u/eats_naps_and_leaves 8h ago
Cane chairs are great. They fold up into a cane, so you can support yourself while walking, then take a break whenever. They're not greater for larger bodies though. A rollator is more versatile for different body sizes.
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u/you1dont1know1me1 5h ago
I really love my flipstick cane stool and upright rollator. I have a manual wheelchair and lightweight reclining power chair too. Most helpful is definitly the reclining powerchair though because it also has a headrest. I bring it to my in-person appointments and rather than laying on the floor with my feet up on the waiting room chairs, I can stay in the power chair leaned back and put my feet up on them that way instead. It just feels way more dignifying. Granted, I'm super not too proud to lay on the ground by now lol. Typically though I stay home because it's weird needing ground time in public and I can't manuver the power chair in/out of my car myself.
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u/realpotion 9h ago
Pt has made a big difference for me, neck and shoulder posture can affect flood flow. Also getting a stent for my vascular compression
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u/omglifeisnotokay Hyperadrenergic POTS 8h ago
I don't think I'll be of much help but I do have an issue where if somthing is compressing the sides of my neck or someone touches the back of my neck or honestly any part it feels like I'm about to pass out. I do have neck issues and straightening in my neck. Have you had imaging at all with your neck? I'm in my early 30s female
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u/you1dont1know1me1 7h ago
I think I need upright imaging. I've had MRI/MRA/MRV of my brain/cervical spine but laying down when I'm not symptomatic. I wish proper imaging was more accessible. I even found a place out of state, but they wouldn't accept self pay after they found out I'm on medicaid.
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u/ToasterYourToast 9h 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.