RecipeForDisaster

It’s one of my worst symptoms. Taurine helps somewhat, but beta blockers do more. It’s still there, sometimes worse if I’m sick or after IVIG.

Wow, a lot of this definitely describes me. I will pass out if I look up or towards my armpit for too long, and no one has been able to figure this out. I’m glad you brought this up because I’ll definitely look into it, even though I would not be a surgical candidate!

I’ve had MRIs and MRIs, showing just arthritis, bone spurs, and disc issues. I have weird and unpleasant effects from looking up or to the side if I do it very far. It can make me pass out. That is interesting - I will ask some doctors about it.

Very interesting! I haven’t had this imaging, but I’ll mention it at the next visit.

Thanks, I’ll check this out. I’m going to a big city clinic next month and have to do some repeat testing and a couple of new tests beforehand.

I’m so careful about everything and eat ridiculously slow (it’s a little embarrassing to take so long). I don’t eat meat at all, though. Soup is one of my favorites, and it’s especially tricky. I am hoping something there is fixable.

I have similar issues and am going to see a neuro GI next month. I’ve had lots of testing, which only showed that half my swallows are weak or ineffective. Let me know if you get answers and I will do the same! I’ve had this for years and nothing has helped - I choke and aspirate almost daily.

No one could truly understand the impact this would have unless they’ve been there. I’m sort of glad I never got used to doing fluids frequently enough to feel much better - I don’t have a PICC or port, so while I know how much they help, I do fluids intermittently. If I was counting on feeling decent every day, I’d be really devastated now. I hope they can compromise with you and get you SOME fluids.

The pharmacy called back and said actually they can’t send LR, but will give me NS. They spoke too soon.

Good luck! Maybe they realize some of us truly need all that extra fluid regardless of if we drink orally or not. I have hydration orders in my chart from like 5 big city specialists of multiple varieties… so it’s possible they don’t want to question them.

I was supposed to get 8 bags this week, so I cautiously asked for only 4, and they sent them no questions asked. They even asked if I wanted NS or LR (I have Rx for both). Things might be getting better. I’m in the US.

It’s going to be a problem. One infusion pharmacy here discharged all their hydration patients who don’t use it daily on a consistent basis, and reduced the daily ones to half their usual volume. I have 16 liters or so left, and really hope it gets me through to my next possible refill. I need 6-8 liters the week of IVIG at the very least. I’m hearing they won’t have a reasonable supply until summer. My infusion nurse and doctors will fight for me, but I think there are hard and fast rules in place, and it won’t matter. The big hospital system in MA has canceled non-emergent, elective procedures for this reason. It’s scary stuff.

Your best bet is probably to go to Boston - it’s worth the trip. Dr. Novak's office is very knowledgeable about dysautonomia and I believe his PAs are taking new patients (he’s just outside Boston). Some people have reported good experiences at Beth Israel or Mass General, too.

It’s a mixed blessing. It’s hard to get them on, and they do keep me hotter, but they help a lot. I don’t find that my neuropathy is much worse from wearing them. I have really good Knit Rite ones that are not as difficult to get on and are more comfortable.

Yes, I am sure a lot of us are interested, especially if he takes insurance. I’ve already paid out of pocket for a doctor who didn’t, and his office was so bad, I’m not seeing him anymore.