RecipeForDisaster

I was so excited to see someone with very cool POTS stickers all over their water bottle in the bathroom today, but I didn’t have the guts to say hi because I was with family! It would be so cool if we bumped into each other there. Thursday 4/21 in Boston, late morning/noon!

I make ramen several times a week, using a lot of vegetables, tofu, and either good quality ramen packs from the Asian market, or homemade, very salty broth and noodles. I love it - but I am not sure how much it helps. I crave salt, but I don’t know that I get a big benefit from all I eat.

Unfortunately, not for me. I sip all day, even salted water, and it doesn’t help. I only drink to "be good", because it does not seem to help me.

Haha! There are 9 grams of salt in a liter of saline! I have a travel salt shaker in every vehicle, purse, bag… I find it useful for one meal or so before I have to refill! Sometimes I just crunch on the salt. I enjoy it, so I’d rather do this than take capsules.

Good luck! I have a saved search on eBay because I need another leg sleeve. The prices on the machines and sleeves vary wildly. I think I paid about $100 for the machine and one sleeve. I switch legs, which is not great.

Oh, and the other weird thing about some of us, me included, is that if you run the fluids quickly, they don’t help much, we pee it out, or it wears off quickly. So, for me, I have to stay tethered to an IV for as long as possible, which is the 17 hours or so I stay out of bed… to get the 2L slowly enough to have maximum benefit. It’d be really nice if I could do it over 8 hours like pretty much all patients getting hydration. It seems like we have to slowly sneak the fluid in so our bodies don’t dispose of it,

Oh yes, I’m always hearing nosy people watching me eat say "OMG SALT IS SO BAD FOR YOU!!!". In those cases, I might tell them I’m on a high salt diet and that I have low BP. I do sometimes have to admit I "pass out" if it’s coming. I put salt on ice cream, and everything else, so people notice. I do crave it to an extreme. I carry it everywhere and pretty much don’t eat anything without it. Mind your business! I could tell you some other things you are eating that might be bad for you, but I don’t know your medical history, nosy people!

Exactly! You guys are just like me. I use 15gm salt and 4L water daily, plus some other electrolytes. They make little difference, but 2L IV lactated ringer's is miraculous and does not make me run to the bathroom constantly. Unfortunately, it now only lasts me about 36 hours, though. I used to get enough benefit from less fluid and it used to last longer. It’s a bummer, but still a very helpful tool to have… Compression does help me, but I need 40mmHg which is too difficult for me to put on. Heavy weighted blankets are helpful. My TTTs have not involved anything IV, so that is interesting. I really wish we could figure out what’s wrong with us. I have no diagnosis other than general stuff like hypotension and autonomic dysfunction. Why can’t I keep my BP up with these interventions?

Mine are medical ones, Circulflow 5150 model. They can be set in many different ways. It does cycle from toes to thighs over the time you set. I actually got them on eBay because I think DMEs only rent them. It makes me recover faster when I’m close to passing out, and feels good when I’m laying down. I just wish they were lighter or more portable, because I’d have them on any time I’m stationary. They are upstairs, so I can’t use them while I’m working or anything. I don’t think I can use them sitting, either, because they straighten my legs. They have saved me from losing consciousness several times. It’s like elevating your legs, but much better. I am too exhausted from putting 40mmHg compression stockings on, even thought they do help once on. Less than that doesn’t help enough. I still think this is more powerful, but less convenient.

I use sequential compression devices on my whole legs in the evenings. They definitely help me feel better. It’s just that I have to be laying in bed and can’t move, even to the point where I can’t turn them on and off on my own. My BP is very low and I have blood pooling, so it kind of milks the blood up. Exercise is better, but I can’t exercise nonstop….

Thanks! It is wonderful to be able to freely share here. I kind of have a double life, but I’m used to it!

Me too. I’m very private about it, only sharing with a few select friends and almost no family just to avoid this same situation. It’s hard to hide, and I don’t get to vent or ask for support much (especially bad since I can’t travel to appts or tests alone), but it’s been worth it for me. It’s particularly challenging since I look mostly okay, and my illnesses are not well known or understood.

Oh yes, over the head is the worst. Even just holding my arm out for a while is intolerable, like if I’m holding something out to someone and they don’t take it immediately. I am careful not to let my doctors think my major complaint is fatigue. Not that fatigue isn’t horrible - I feel like I’m bleeding out, more than being fatigued. All of the symptoms of shock are with me every day.

Yes, I just say it makes me "sick". There are a lot of bad feelings in my body that I don’t have words for, and I doubt most people would ever understand that. There’s some kind of emptiness in my neck and chest, for one. I don’t do a lot of housework, and I do feel bad, but it’s just the way it is. Stuff that involves bending over, squatting, or making large motions with my arms - even stirring batter - are not very doable.

I have very good insurance that doesn’t give me a hard time about much. I doubt I even need the biopsy for them! I have every sign of neuropathy as well as autonomic problems… I feel like my feet are buzzing all the time, I get the burning numbness, pins and needles, etc. My nurse case manager sounded like she could get IVIG approved for me just because, but I think the neurologist treats me like any other patient with average insurance. I don’t blame him. I dread having that sort of relationship with IVIG, but I figure I can get a lot of hydration with it and be a step ahead. I have orders for that already.

I just saw my neurologist yesterday and he confirmed he is interested in IVIG - BUT I a have to have the right findings on my biopsy, even though I have an insanely high (and increasing) IGG abs FGFR3. I take 2-3 180mg extended release pyridostigmine tabs daily. I’ve never had side effects, and it didn’t take long to see mild effects from even 60mg 3 times daily.

Mestinon helps me about 15%. It’s worth taking it but not by a lot. At least acetyl L carnitine and alpha lipoic acid help my neuropathy. My neurologist confirmed yesterday that he is interested in trying IVIG if my biopsy comes out with eligible results. I did dread IVIG, but I dreaded iron infusions and did fine with them. Hopefully this would also go well.

I would love to follow you because you sound similar to me, and I’m so let down that these things didn’t help you. I haven’t gotten to try the autoimmune parts of your trial, because I am waiting on a biopsy to try to qualify for IVIG and I don’t have any of my 17 doctors working on the immune end very well. I thought steroids could help, but I may have too much cortisol already, because my eosinophils are persistently 0. I have very low BP and no POTS. I’ve read about things like Ubrelvy being used for CFS, and one doctor mentioned this to me (but I guess he lost interest in me when I couldn’t do the invasive CPET). You could also try different beta blockers - I don’t think I’d get ANY sleep if not for mine. DDAVP is somewhat helpful. IV fluids are the only thing that is super helpful for me. Adderall is good, but it’s a pain to get. It doesn’t help me sleep, and I badly need to do that… good luck and keep us posted!

Some of them, yes. I’m not sure I remember which!

Ugh, I’m super allergic to NSAIDs.

Been there, done that. Got slightly panicked after about 16 hours when it was clear I would not be able to fit 24 hours worth in there. Found a way to get another container!

Me too. My eyes tear for no reason, my nose runs often, yet I really don’t sweat. Ipratropium nasal spray helps the runny nose, at least.

Okay, that makes me feel better! I remember that you said that. I don’t have hyper POTS and didn’t even have out of range epinephrine/norepinephrine/dopamine. I just want to sleep! I feel like I’ve had lots of caffeine before bed.

That was the striking thing for me. No ability to tell temperature in my legs and feet. I didn’t know until the (4th) neurologist tested it recently. I am itchy randomly, like I have a tick on me, here, and then there, but I never connected it to neuropathy. I have horrible burning pain in my feet at night, though.

I’d love to try a little clonidine. I was up all night last night - relaxed and sleepy but heart so uncomfortable despite lots of beta blocker. No one will let me use clonidine and I don’t know why. My BP is low, but they give me other stuff that lowers it, and I’d be in bed.