RecipeForDisaster

They had me slather the skin underneath the pads with steroid cream. It helped. I got really sensitive to the hypoallergenic pads over that long month I wore the monitor.

Sorry for the confusion - I did IVIG for a year and a half, and then the pharmacy caused me to miss 2 infusions from January to now. So not quite as bad as 2 years (but bad enough, as my infusion reactions were worse than ever after the gap). Wouldn’t that be a great legacy? I’d open a one stop shopping clinic where you could leave with a diagnosis and treatment plan, equipment, education, and meds. Imagine that?!

Unfortunately, I was told it might take 2 years for me to know if my autonomic symptoms would be helped by IVIG. Then the pharmacy error caused me to miss 2 infusions, so I just restarted and only got a year and a half before a break from January-April. So far, it hasn’t helped those symptoms, but we are hopeful. People do occasionally get SC fluids, but not 2L a day like I need. I have less loose skin than most people, too. A lot of people get immune globulin SC, but I can’t even do that. We need those studies so badly! A better way to treat postprandial symptoms would be super. I just need blood flow!

I’ve talked with some of my doctors about it, and got no one on board. Same for octreotide, unfortunately. I do well with IV fluids (they even help my appetite and they relieve my after eating issues), but only for a few days afterwards. At least I have IVIG for the autoimmunity again.

Good luck! I really want to try a vasodilator for my HYCH, but my BP is so low that no one wants me to try it. I don’t have a particular time of day that is worse, but I sleep very poorly.

My renin is always high. The rest are within normal limits. I’m told that is because of my low BP - the renin is trying to compensate?

Congratulations! What worked for you?

Yes, I feel awful after eating even a small amount. It makes me dread eating. Not much helps, other than IV fluids, which make me want to eat.

Having diagnoses is very nice, although I am still missing a lot of explanations for what is wrong with me. And, HYCH isn't even known by most doctors, and the diagnoses I have would not be considered a big deal by most people. Yet I’m in really bad shape overall. I completely agree that for the most part, there is not really a lot to see, and we could be seen via telemedicine for most visits. It stinks to spend half a day traveling to Boston (with help) for no good reason Yes, they are the inflation cuffs that go all the way up your legs. They improve my circulation and BP. I have put together ear clips and a TENS device for my tVNS. I haven’t been using it, but I should. It was an hour per night. I stopped because I was not sure I was getting much benefit, but it definitely wasn’t hurting anything.

I can’t have a PICC or port, either. I get a new IV every time, although I can usually keep it for 3-4 days. It stinks, but I’m glad I can do it myself at home.

I heard that Dr Blair Grubb may be doing televisits again. I’d try for that for sure. My neuromuscular specialist at home orders my IVIG, because it’s technically for autoimmune SFN, which he diagnosed. I do like that I don’t have to reach him in Boston. It would be so great if everyone could see Dr Novak easily - he really is a pioneer. Even getting a weird diagnosis of HYCH was something other than repeatedly being told I don’t have POTS: I knew! Don’t give up - there are so many options out there! I have a whole room of devices like sequential compression, transdermal vagal stimulation, lots of compression gear… plus a giant box of meds, some for every day, and some to bail me out at bad times.

My bet is you had less effects from IV fluids because they ran too fast(ant a normal rate like over 3-4 hours )and/or you didn’t get enough. I need 2 liters run very slowly. I have it at 80mL per hour right now.

I don’t feel perfect when I lay down, either. I feel awful when I’m trying to sleep, and when I have eaten, and sometimes I don’t get better when I lay down during a crash. I can still have BPs in the low 70s while flat.

Nope, he has theories and has diagnosed me with HYCH, but it hasn’t changed my management. He isn’t the one who ordered IVIG nor IV fluids. He has tried plenty of other meds - some of which have been helpful. I still have hope that he will figure me out. He does a battery of autonomic testing, including SFN biopsies, QSART, TTT, and cranial Doppler, plus Washington University lab panels.

I see Dr. Novak. He doesn’t see patients remotely outside Massachusetts - and very rarely even then. I also think he said he was not taking new patients. He diagnoses this with cerebral Doppler.