RecipeForDisaster

Partly controlled by my beta blockers, but still a problem!

Taurine helped my palpitations and PVCs. I keep getting worse, so it hasn’t kept up, but it definitely helped me.

I have very low BP and don’t have hyper POTS. I have dabbled in CBD without any effect. Fluids are the most helpful thing for sleep, but since I can’t have PICC or port, I have to use them as little as I can.

I’m in the same boat. No one seems think I need it, but I can’t sleep.

Yeah, that’s true. For me, I am restricted in which ones I can take because of my asthma and how low my BP is. The acebutolol and metoprolol make me feel very different, though.

Yes, it’s constant, but overnight is the worst because I can’t sleep with the drum beat. I started on 12.5mg metoprolol and now I’m at 75mg, despite my BP being very, very low. I seem to deal with it okay because I’m in bed - I take a different beta blocker in the daytime, acebutolol. I let the pounding stay worse during the day because I am able to distract myself from it most of the time - even though it’s uncomfortable. I'd be so interested if the SSRI worked! I’ve never tried one but I have used a ton of other remedies. Even a homemade vagal stimulator. The taurine may be worth a try, though - it’s pretty helpful.

I sure am. I’ve had my metoprolol increased a bunch of times and am up to 75mg. That does help but not enough. I also use taurine, and that is pretty helpful. It still drives me nuts. Like the previous poster, I can have a HR of 60 and it’s still uncomfortably pounding.

I got one of these and am testing it out.

I had to get a letter from one of my cardiologists saying I was okay to go to work, because I kept passing out at work and scaring everyone. I’m working from home now, so they don’t mind anymore I just make up the missed work and they never know.

You’re very welcome! I don’t know that I have it, but my parents do. Adderall just makes me a bit more functional on little sleep and low blood pressures. But I don’t have a prior authorization for it, so I have to pay full price, and I use it very sparingly. That stinks because it helps.

I don’t tolerate very much caffeine, but I haven’t had trouble with heart rate or anxiety with adderall. I am also on 2 different beta blockers (one at night and one in the morning).

Yeah, wouldn’t it be nice as a quick fix? I’ve never seen it mentioned except in this old article. We’ll see what the doctor says about it. I’m sure it’s Rx only.

It’s always low, like 72/30 at worst. I’m on a beta blocker, actually one at night and a different one in the morning. I drink salted water or broth all day… 15gm of salt and 4L liquid each day. It doesn’t get me to sleep - my heart is pounding hard even when the rate is controlled with my max dose of beta blocker. I’m also nauseous many times, and have air hunger.

I had to change my LDN to be taken in the morning, because it kept me up, too. I have read the same thing about vitamin D - something about inhibiting melatonin. I take that and B12 in the morning. I eventually stopped LDN after a couple of years, because it wasn’t helping me. It sounds miraculous for many people.

One of my cardiologists recommended a non-pneumatic anti-shock garment, and I just found something about a respiratory impedance device like the Resqgard. I can’t find the garment in small, and I haven’t gotten an answer about how it would be when I removed it (I know, bad). The impedance device was mentioned in a paper by Dr. Raj. I love the idea of having something on hand that I could use in an emergency when I’m alone - no IV option in that case. But maybe one of these could also help me to feel better in general.

I’m in a similar boat and have an appt with a pulmonary sleep specialist. I do have sleep apnea, so I hope they won't focus on that - it has nothing to do with not being able to sleep. How do they diagnose ME? I see my neurologist on Tuesday.

I finally got the results of my FGFR3 and it’s now 10,000! It was 7,000 before and the upper limit is 3,000. I think this may pave the way for IVIG.

I only used the sublingual once I switched. No more cyanocobalamin. IMO, there isn’t much risk to 2000mcg, as it’s water soluble and you excrete any excess, but you can try a half to start if you want. I take 5000mcg weekly now. You store 6mg in your liver, so it’s okay to stock up and then ease back once replenished.

My cardiac PET didn’t reveal anything other than scattered bilateral inflammatory/reactive lymph nodes (I’d love to know why). I’m kind of at the end of my diagnostic road here, unless NIH accepts me (the doctor hasn’t finished the application yet). I am very uncomfortable and not sleeping… nothing is helping enough. It’s mostly the air hunger, chest discomfort, and pounding that are the worst right now - still very faint and dizzy, but I’d actually prefer more passing out to this continuous discomfort. … I saw a new neurologist who repeated my Washington University neuropathy panel(not resulted yet after a few weeks). My IL10 and FGFR3 were quite abnormal last time - I think he is leaning towards another SFN biopsy (last one, from another neurologist, was insufficient but didn’t show anything). After that, maybe IVIG. Has anyone had helpful plans following these tests? My ANA is persistently positive in 2 ways(homogeneous and speckled) and I have positive immunofluorescence on the Mayo paraneoplastic panel, but that’s all. I definitely have neuropathy, but we don’t know why.

I could not tolerate any form of cyanocobalamin, especially injection or even nasal spray. I was critically low. At first I was told it was because it was awakening my damaged nerves, causing a lot of discomfort. Eventually I started sublingual methylcobalamin, which never caused any issues and which replenished and maintained my levels. I don’t seem to absorb swallowed B12 - we lack intrinsic factor in my family (not uncommon - a grandfather actually died of pernicious anemia). Some people cannot utilize cyanocobalamin… it’s not necessarily the case here, but it sure was for me. Something about it blocking the place where B12 needs to go while not being useful. I do have MTHFR - there are forums for that, too.

Good to know. It’d be worth it if it helped any of my issues. Even just the neuropathy. I got through 5 iron infusions no problem, so hopefully I’d weather this, too. I would definitely pair it with my home hydration. Keep us posted and good luck!

Oh, haha - I already had one of these links open, because one of my physicians authored the paper. He doesn’t seem motivated to go towards IVIG! Go figure. He has my lab results and in many cases, ordered the testing.

Thank you! I will share… I doubt any of them wants to think outside the box that much, but it’s worth a try! I definitely have neuropathy for no particular reason. How did you do with the IVIG, as far as side effects or reactions? I’ve been a little wary to push for it, but I have a lot of potential reasons to get it - my subclasses are all off(although IG2 is always high), I may have myocarditis or sarcoidosis, etc. The latter will probably get me put on steroids to start, so I guess I’d see if I did better. I'm on colchicine until my PET scan. But I definitely have secondary dysautonomia.

I’m intrigued… I haven’t had CellTrend, but I have the elevated FGFR3 at 7000 and a positive ANA(homogeneous and speckled) plus no autoimmune diagnosis (not SLE or RA). What kind of doctors do you have running this treatment? I haven’t found anyone who would do so. It sounds like you have some great doctors!

First a cardiac PET scan in January, and then, if that looks suspicious, 6 myocardial biopsies. Ick. I had a little ventricular tachycardia on my latest 30 day monitor I had not demonstrated that before.