RecipeForDisaster

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.

That is the type of specialist I see for my IVIG. He’s pretty good. He doesn’t really manage my hypotension, but I have so many other doctors. If I just had him, he probably would.

That is so great! I hope many others get to try it. It didn’t help me, but that was about 8 years ago. I tried all different dosages.

I’m glad I am not doing further damage to my nerves. But this one was not in my top 10 problems, and the IVIG isn’t fun. I don’t feel like I have a choice, though. I’m too young to have this kind of progressive nerve damage.

Positive ANAs in 2 different ways wasn’t enough for me to qualify for IVIG. My autonomic issues and HYCH didn’t help, either. I had to have a positive SFN biopsy, and I think my abnormal FGFR3 result also helped. I was never offered any kind of DMARD or other biologic, but then I could not find a reasonably helpful rheumatologist, either. It took years to get started, and it’s expensive and not enjoyable, but at least it’s helping my neuropathy.

I haven’t used it in a while, but I need to try again because there are good studies. The big city neurologist said I’m too sick for it to help me at this point. any TENS machine will work. Here are the earclips. https://www.tenspros.com/black-ear-clip-electrodes-EAE01.html?gad_source=1&gclid=Cj0KCQiA1rSsBhDHARIsANB4EJb-x0IbovkQ1B5VDCEI8Si8Xv3Z_P9Rtd60OD91a5ut6hisAtE_TxYaAsVCEALw_wcB

I don’t have POTS, and am on 2 different beta blockers (day vs. night), so my HR is rarely that out of whack. I’m glad they aren’t using that for a metric - I once routinely got to a HR of 180 walking, but not now that I’m stabilized on meds. I’m 43, and I don’t have much weight cushion, either. I was really thin until I had to start meds for trigeminal neuralgia, which put 20lbs back on me, and I’m almost a good weight again. I’ve been sick for about 15-20 years, but had some of this all my life - I just thought it was how everyone felt, and believed that everyone passed out sometimes.

I have homecare orders to get fluids whenever I need them. It took a lot of work to get it arranged, but I feel so much better knowing I can get them at home when needed. It wouldn’t just be because I can’t eat, but for a whole slew of problems to include that. Once I did not eat for 5 days, because I didn’t feel like I could, and was waiting until I got hungry. I never did. But I also could barely sit up, talk, etc. in those cases, I am definitely food averse. I can appreciate that something looks good and would taste good, and sometimes I even acknowledge that my body wants food, but I can’t imagine eating it.

I never want to eat and don’t feel like I can when I’m not doing well. IV fluids always get me interested in food again - I love to eat, but it is too hard on me when I’m not at my best.

Maybe if we ALL quit, they’ll go out of business??

Hang in there. We definitely understand. I always say "I quit this job" because the combination of feeling awful all the time, and having to fight so many things (getting appts, getting to appts, getting meds or equipment, billing issues, infusion arrangements…) at the same time is not a "job" I feel like having. There’s not much I can do other than keep working on all of it, but it’s frustrating and draining for sure.

I do think it’s at least partly due to low blood volume. Dr. Novak doesn’t seem interested in testing for it - I think he just knows I have it and doesn’t care to prove it, but I really do. IV fluids fixes it for a short time, which I guess partly proves his point. He said "it’s just that your vital organs aren’t getting blood" - that’s my problem. Oh, is that it? But who knows, he’s at a very big hospital, so maybe they’ll get the device anyway. They had a Daxor at Yale, though. I really hope I get to help others by making my data available.

Wouldn’t that be great? He wanted to try galantamine for it, but it kept me up all night even if I took it only in the morning (it made my palpitations worse, too). I may try again. My BP is really low, which doesn’t help. That is not part of HYCH, and is undiagnosed, and makes everything a lot harder to survive and treat. I think HYCH and OCHOS are uncommon because most clinicians haven’t heard of it and don’t have equipment to diagnose it. I bet there are many more. I had it for at least a decade before he found it. But I have more stuff that is not diagnosed. I'm sure I’m one of those 16. I remember him saying that the cerebral Doppler was somewhat experimental and that he was doing research. It’s neat to be able to be part of that - I’m always happy to be a Guinea pig.

Thanks! I was so inspired by that and couldn’t wait to hear how he healed that person, and would use that experience to heal me… um, nope. I hate going to the city, but it’s only a few times a year.

Funny thing is, when I first started seeing him many years ago, he said that he had a patient just like me from Hawaii (he has patients all over the world). I got excited and asked how he helped them, and he said he never figured them out! I will mention that - he might be tickled! It’s a huge pain to go to Boston but it only takes about 2 hours. It’s parking, aggressive driving, and traffic that are the problem.