RecipeForDisaster

14 hours ago, CallieAndToby said:

Thank you for the info. I've never heard of the neuropathy panel but I definitely need somebody to take a good look into this and do further testing! I have had some autoimmune labs pop up as positive in the past (Anti DSDNA positive twice and anti GAD positive). My pain started in my bladder, then my shins (so awful), then my hands. They even did surgery on one of my shins a long time ago and it didn't help so it's nice to have answers but I don't understand why this wasn't checked before with my constellation of symptoms. My mother actually requested the testing by mouth and by written letter. Let me know how the testing goes! Hopefully we can both find some answers and/or good treatment. 

Yeah, I have persistently positive ANAs as well (speckled and homogeneous). I’m not sure we have looked at GAD. Good luck! 
 

I'm going to look into Dr. Chemali, too. Thanks!

I’m booked for a biopsy in August, and I have very high IGG vs. FGFR3 which is connected to SFN. That’s part of the Washington University neuropathy panel, if you can get that. I have no reason to have it either. I assume it’s autoimmune with that antibody showing up, but no one really knows.

Acetylcarnitine and alpha lipoic acid have helped my burning neuropathy symptoms, at least. But I now have trigeminal neuralgia as well, so I’m on carbamazepine and Lyrica. I don’t think those have helped the neuropathy.

15 hours ago, MTRJ75 said:

This nose running thing has become a constant.  

Eating...nose runs. 

Walking around...nose runs.

Concentrating on something difficult...nose runs. 

Talking on the phone...nose runs. 

Basically anytime I sweat...nose runs.

Maybe a mold thing? Some MCAS connection? 

I use ipratropium nasal spray for my nose - it runs when it’s cold outside, when I wear a mask, etc. it works well without side effects (other than bad taste).
 

I have a stuffy nose in the evening, and haven’t figured out what helps it. It makes me unable to breathe through my CPAP mask, so it’s important. 

I’m interested, too. I got this weighted, microwaveable wrap that can be put on the neck and shoulders, and it feels good for a while. TENS is helpful.

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. 

10 hours ago, Hippopotsamus said:

@Pistol& @RecipeForDisasterthanks so much for the replies. My brother was diagnosed as a child because he was also hyperactive. But after reading about how it presents in females I realize that both my mother and myself have it. 

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). 

3 hours ago, MikeO said:

The Resqgard looks interesting. I did read that it can increase systolic and diastolic pressures by 30%. I could see using one from time to time. 

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.

1 hour ago, CallieAndToby said:

Low dose naltrexone is known for causing insomnia, great medication but neither I nor my friends could tolerate it because of the sleep issues it causes. Just thought I'd mention that's a major side effect. Although I've met on person who said it helped them sleep. 

Vitamin D also seems to be activating and energizing for most people, that is something I take in the morning. 

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.

22 minutes ago, CallieAndToby said:

I'm experiencing the worst insomnia of my life for the past 3 weeks. No changes are being made to my medications even though they are now activating me at night. It was confirmed I do have Myalgic Encephalomyelitis but that was diagnosed 15 years ago by Dr. Klimas and Dr. Lapp; most patients in the ME community have extreme trouble sleeping but especially non restorative sleep. I tried medical marijuana in RSO oil form and indica gummies separately but both made me extremely wired and agitated which is the opposite of what it's supposed to do but both marijuana and CBD increase neurotransmitters in the brain and that hasn't fully been studied or understood. I'd like to take something that doesn't affect neurotransmitters because I'm so activated. Has anybody had luck with an actual sleep medicine specialist? I saw some pulmonologist sleep specialists but they are looking at everything from a sleep apnea stand point. 

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.

23 hours ago, Castorp said:

As far as I am aware, IVIG is a potentially useful treatment for autoimmune mediated dysautonomia and/or SFN. In fact, the results by Schoefieid and Oaklander show that around 75%-80% of their patients experience an improvement with IVIG. Nevertheless, this treatment did not work for me. At least, I did not have any serious side effect, only a mild headache after the infusions.

 

 

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!