RecipeForDisaster

For now, I put frozen sponges in my bra... but my mom got a cool recirculating ice vest that I will buy if she ends up liking it. I use those cooling cloth items, which help a tiny bit as well. But I also usually crash if I’m out during a hot part of the day.

I got someone to look at them and he said "sometimes they are from nutritional deficiencies." Yes and sometimes they are from shock, or low blood flow!

Yes! I have them over both big toenails. Over and over again. No one seems to care!

I know. It seems too unlikely! I really can’t shave under my arms or look upwards at a plane or whatever.

It’s a little complicated. His office is so bad that I had to put in a complaint against them, and they retaliated, and long story short... I had to fire one of my favorite doctors. I’m certain that if I bring it up to the other neurologists, they’ll say "geez just don’t wear it, then" like it’s something I do for enjoyment. I only care because I think it MEANS something!!! Come on, this must be a clue! I am not diagnosed at all. No standing MRI because no one is really interested. Even the guy who ordered this - "just try a collar". Very interesting about the rotational vs. otherwise!!! I keep thinking I am NUTS and keep trying again and again. Maybe longer. Maybe shorter (shorter feels worse). Maybe tighter??? I have never had vertigo, but it feels more like that than my usual dizziness. This is almost like my eyes are rapidly moving. It’s hard to describe. I can go about half an hour myself. What do you do about AAI and how is it diagnosed?

I have been trying to wear a rigid Aspen Vista collar as recommended to me by a dysautonomia doctor. My chiropractor agreed - I probably have craniocervical instability. I have tried several heights and can tolerate them, neck and head wise. When I have the collar on for maybe 15 minutes, I start to get weird symptoms like icy body parts, odd dizziness that does not feel like presyncope (vertigo, I guess), and weird vision impairment. I do have some of these symptoms when I try to turn my head or look straight up. What the heck? I don’t even know which doctor should be interested, because one neurologist tested my blood flow during a head turn, and nothing changed on Doppler(but he had done a scary and painful biopsy right before that, and my BP was very high for me, so I don’t feel that was a good test). Now he is not interested. Most of my other doctors just brush it off. I am pretty sure it’s a sign of something! I can’t really wear a collar. I feel like it’s the front of the collar that I can’t tolerate, but who knows. I am NOT a person who can’t stand stuff touching my neck or tight clothing there. No problem. My HR does not slow in these times. So curious!!

I use midodrine as well. I can only tolerate so much due to the chills and tingles it causes , but it does help with no "real" side effects. Try a little dose!

I have really bad asthma and have done well on metoprolol for years. I was very scared of it!

I want upright imaging, but have not gotten it. I don’t think any doctors are interested. All I have is laying down MRIs that show a lot of stuff for my age. Bone Spurs, herniation, arthritis. My sister had a big time fusion, yikes. She had terrible radiculopathy, as do I. I haven’t been wearing the collar much because it’s too tall. We have not figured out how to make it slightly shorter. It’s also a little too long around, if that makes sense. My neck is smaller than it goes. So, it’s extra uncomfortable, because my chin is up and my muscles are fighting it. I think I have an anterior posture that doesn’t wolf witn a collar, but I’m game to keep trying. No, no one told me about the 4 hour limit, yikes! I probably wouldn’t anyway, and I myself know to avoid muscle weakening, but it’s scary that the doctor did not warn me. mounting the collars on the wall is a great idea! I always think of would be so great to have a trading post at some point, where stuff people have tried can be passed on to someone who wants to try that. My CPAP group does that. Car rides are one of the times I thought it would be most useful, too! Those really bother me. I felt better with simple manual traction and would love to try inversion. I was going to chart my vitals before and after the collar, once I get it right. Thanks!

One of my doctors is just throwing stuff out there, and one suggestion was an Aspen Vista neck collar. I’m trying it... so far it is not too comfortable, as in, I swear my neck is fighting it! Has anyone had success or any tips on wearing these? I do feel better with neck traction, so I feel like he might be right.

Thanks! I already have terrible palpitations but I am hypotensive.

Did you guys know there is a discount card? I am working on that... cardiologist says to just start at 5mg twice a day. This is replacing metoprolol so I thought I had slowly taper down. Hmmm. I was hoping to eventually be on a little of both, since metoprolol helped my pounding heart so much. I have seen other people on both. Does anyone else have experiences to share?

I think it helps, but it ruins the tiny ability to eat that I still have, so it’s not worth it.

My BP is so low and I also need metoprolol... I did not do well on diltiazem alone. We’ll see! I am starting on 30mg too.

I’m scheduled for a diltiazem trial (for cerebral perfusion) along with my beta blocker (I don’t know if that has made them worse, but it hasn’t helped... it has helped enough other stuff, though!). Maybe it will help with this, too!

Our family never gets thirsty and never had water on the table with meals either. None of us can tolerate heat well, either! Hmm.

I have awful sleep, sleep apnea (CPAP has helped but not nearly enough), and cerebral hypoperfusion on Doppler. Lots of other crap too, but sleep is one of my worst problems and also gives me a horribly miserable and sick day afterwards if I get less than 6 hours or so. That’s pretty rare. IV fluids help with this too. I think I’ll do it tomorrow.

I really doubt it - mine was over 3L and I definitely have low blood volume. I agree on the salt and fluid intake... mine were high that day as usual. I have trouble keeping my blood sodium high enough, which is so weird on 15gm salt daily.

Same for me, I have a ton, and the electrophysiologist gave me options to treat with antiarrhythmics, ablation, or nothing. I am such a mess that I’m going with nothing for now. They bother me (I have a lot of bigeminy) but he said they are okay. I WOULD love to know where they’re coming from. Heck I’m only 40.

Lots of seemingly unrelated ones! I am hoping there’s a link. Many are not diagnosed officially. If they were, I’d say 8-10?

Interesting! This and alpha lipoic acid have made my nighttime neuropathy flares tolerable. I don’t think it’s helped the rest of me, and I used to take it in the morning. I wonder if I need higher doses. It’s been pretty magical for no longer waking up with foot pain, though.

I’m working with a case manager and it’s helping! She’s from my insurance. She fights for me... getting orders, making doctors and pharmacies do what they’re supposed to, getting authorization. I wish I got her involved much earlier! If I remember right, you’re seeing people in Boston? Feel free to PM me about that.

My IL 10 is about double the upper limit, and my growth hormone is low for my gender and age. Just curious if anyone else has had these. My neurologist ordered the tests but of course he says "my labs are fine". Why order them if you’re going to brush off abnormal results? I think he does it for studies he runs.

Yeah, that happens a lot. This guy used to have great staff. I have several doctors with awful gatekeeper staff that don’t pass on messages and don’t let you talk with the doctors.