RecipeForDisaster

I’m telling myself it’s definitely worth it and I am going to get better. I believe in placebo if nothing else! I’ll give it a year to make sure it does help. It wasn’t THAT bad, although this morning has been rough, I just don’t want anything to get worse. I even kept working all day yesterday.

Update: I got my first two doses. It was odd. I immediately got lip numbness, heat and burning in my throat, a twitchy feeling in my throat when taking a faster breath, pressure in my lower front teeth, allodynia(a feeling of knives in my feet, for an hour, from dripping a little room temp water on them!), and a drop in BP. I took Benadryl and Tylenol first, and got a total of 5L IV fluids over two days! Both days were the same, including the 20 point BP drop. I got fever and chills later, and my IV site was itching and burning at the end of the infusion both days. Most of this went away once I was back on plain fluids again. Then I woke at 3am with a bad headache, neck and back pain. It hurts to move my eyes or anything, and the pain moves around my head depending on position. I’ll tell the doctor all of this on Monday… it’s already over 6 hours just for the IVIG, and that’s 2 days in a row, so I don’t want to stop or slow it. I would be okay with more premeds or a change in brand. I had 2 different nurses, and both were kind of blasé. The second one really was inattentive. I had no hives or rash, but they never listened to my lungs. I think it’s all worth it, as long as it helps and is safe - I can deal with a lot of discomfort. I am half fascinated and puzzled.

Ugh! Then I can foresee EMGs and/or skin biopsies. Good luck!

Yeah, it’s been so many years, and I keep getting worse, with little other option. Thanks, I will keep you guys posted!

I start in a week! What a slow process! People usually look at me blankly when I say it’s a buzzing feeling. Or vibrating. I’m told it could help in a few days, a week, a year, or never! Yay!

That looks a lot fancier than mine!

I made my own using a tutorial I found online, ear clips I bought, and my old CMS3000 TENS device. It was not difficult. When I was doing better, I found it helpful to slow my HR. I think it’s worth a try!

Thanks guys! I’m cautiously optimistic. I found a favorable sounding study about this. It’ll be 55gm each day for 2 consecutive days. They’re doing the first dose at my house!

I am so relieved - I was approved. It’s going to be over 2 days every 6 weeks.

BodyGuardian had hypoallergenic stickers, but they were still pretty allergenic if you ask me. They also sent regular electrodes so I could rest my skin and put them in another spot. It was a long 30 days both times - raised, red, itchy rash all the time.

Oh yes, I’m on 2 different beta blockers, and the same thing happens - “oh, you stayed under 170”. Um yeah. That’s drugs talking. It can be easier said than done. Inaccurate info drives me nuts.

Oh yes, they really wanted me to pass out with monitoring so they could see that it was due to arrhythmia. I knew it wasn’t, partly because it was never sudden. Yep, sinus tachycardia every time. I’ve been an EMT since 1998 - I know rhythms. My heart rate goes up because my BP is down. I've had my doctors notes say I’ve never passed out (um it’s like every other week and I would never say anything like that) and even, once, that I use adderall recreationally. If you count "prescribed with a prior authorization and taken due to very low BP and lack of sleep" recreationally, then sure. I was highly upset about that one. I take it like once a month anyway, because it’s hard to get the prior authorization.

I hate when people say stuff like that. I’m glad I didn’t get one, although I was encouraged to at times… I mean, I showed tons of PVCs, V-tach, and plenty of tachycardia on my 30 day monitors, so I think that’s enough.

Yeah, and these labels change a little at each visit. I’m glad I could help a bit! I definitely have something other than dysautonomia, HYCH, and SFN going on. Autoimmune problems, heart stuff, other things that don’t fit any of those. But if I don’t get into the NIH undiagnosed program, I don’t think anyone is going to figure those out at this point. I’m just hoping the IVIG accidentally fixes some of them. I have also had 2 TTTs and they were not too helpful - one inconclusive, one with the HYCH (I actually think this autonomic neurologist invented that diagnosis). My QSART was fine, which is weird with not sweating normally and having what I now see is severe SFN on biopsy. It’s a very slow process. I think they just submitted the IVIG orders and authorization request last week! Then it might be denied and we’d have to go into appeals. I think I had the biopsy ordered in December. But heck, I’ve been sick for maybe 12 years, what’s another one…

I have that. They don’t really know what kind, although I do have HYCH (no one has ever heard of it). Mostly I have the label "idiopathic dysautomomia" and stuff like that. Autonomic neuropathy, and other fairly useless "diagnoses".

I think so - I feel awful all the time, and the PVCs and other stuff only affect me a little more. If I felt good, and was managed well otherwise, I might chase this stuff. I was just surprised that they didn’t want to look into WHY a "healthy" 41 year old was having VT. I have proven that my syncope does not relate to these - I’m usually just in sinus tach. I wonder if my hypotension and other problems cause the ventricular irritability. They did offer more aggressive treatment… but my 2 different beta blockers, magnesium, and taurine are okay for now. Most of the time.

Yeah, I do hesitate with the black box warnings. I take magnesium taurate as well as more taurine. I have tried glycinate and other chelates and salts. I don’t think magnesium helped me. I had a run of V-tach on my last monitor as well as increasing PVCs, bigeminy, etc. They weren’t even worried about that! Acebutolol did help with the PVCs, or at least the feeling.

They encourage me to try more Lyrica, but I prefer taking 75mg at bedtime. It’s only when I’m trying to sleep that it’s a huge problem. I tried 100mg and no help. Allergy meds, supplements, you name it, nothing helps it - and if topical lidocaine helped, I'd have to bathe in it. It’s literally my whole body including in my ears.

So interesting. I have features of both, symptom wise. I am easily startled and it can be dramatic - but I’m calm and drowsy. No one will let me try clonidine, partly due to my low BP - but I can’t sleep. I’m really hoping this is all due to some antibody or autoimmunity and IVIG will help (hurry up!).

It’s so bad, one of the worst features of my SFN! It keeps getting worse and is like whack a mole. I scratch one place, it’s relieved, then somewhere else totally random starts itching, and this repeats… nothing helps the itching, other than finally scratching the itchy part. If I don’t, it keeps getting worse and worse. I was surprised that I tested as unable to detect change in temperature in my feet and legs. I had a negative/inconclusive biopsy years ago. I think part of it may be technique.

Me too. I was sure those levels would be through the roof with how I feel. Nope!

Yes, I have an ear clip on my left ear. I’m already pretty calm, but my heart is not, without beta blockers. I used to use exclusively non-drug solutions, including for my other issues, but I’ve gotten so much worse that I can’t do without lots of drugs. I don’t even do okay ON the drugs(and sleep, ugh, that’s a huge problem). It’s a necessary evil, unfortunately. I am supposed to start IVIG, and I’m praying that will be my solution. I used many supplements and herbs before I got so much worse.

Do you find the vagal nerve stimulation helpful? I thought it was lowering my HR and palpitations, but then I got worse and it didn’t keep up. Is it helpful for that or other stuff for you?

I start to lose my hearing when I’m going to pass out, or when I change position these days!

Yes, that makes sense. So, I take one in the morning and one at night. We are so hard to figure out. During my exercise stress test, the PVCs decreased a lot. When they first hooked me up, I had so many that they immediately referred me to an EP (I had a few cardiologists but not one of those). I have more PVCs after I eat, and I’m careful not to lower my HR too much. I like it between 60-70 or so if I can.