Is this circulation, MCAS, dysautonomia, parasympathetic??

[SpinachHands]

I care for my partner who is bedbound with ME/LC, dysautonomia and MCAS. They have been in a bad MCAS flare for just over a month, and have been having a new odd symptom in this period that we can't quite identify. In reaction to something, they suddenly become weak, their body goes limp, eyes shut, their breathing gets slow, and sometimes their extremities get cold. They don't go unconscious but describe it like their "nervous system snaps shut". It can last from 30 seconds to 30 mins depending on what the trigger was.

We've noticed it happens in response to some odd, but specific things:

- they were trying this foot stretch exercise to help their circulation, lying on their back just flexing their toes towards them once, twice a day. They move a lot more than this normally in bed without any issues, but for some reason every time they tried this movement, they "snapped shut"

- not always, but today it happened when I took their blood pressure. They asked me to check that it was the trigger by gently squeezing their arm with my hand, and yet again they snapped shut

- it was happening in reaction to their electrolyte drink, literally just a gulp or few sips would do it

It can happen occasionally with other things, but these examples seem to show there's a connection to circulation. This is not something they had happen before the MCAS flareup really, or not so suddenly and intensely. They had a particularly bad one a few weeks ago (no identifiable trigger) that lasted two hours and they also were struggling to swallow even their own saliva. Paramedics came and couldn't find anything wrong, and they were ok after.

Every time this happens they can normally go right back to talking to me afterwards, the same as it starts suddenly sometimes even mid sentence. It can be worse when they are well rested too which is odd, after getting more sleep or a full days rest, this happens more the next day, so maybe it's something to do with their parasympathetic nervous system?

It's just so odd and would be great if anyone had insights into what might be happening here or why.

 

[sunshine44]

I have very similar issues. Mcas, dysautonomia, severe autonomic dysfunction and other things. Im
Attempting to get help after 7 years bedridden but my recent trip to Cleveland Clinic hospital (volunteers took me on tarp in van) and university of Chicago did not go do well. I began having, if even possible, worsening autonomic system shutdown of bladder, GI, respiratory even affected at times. I can’t move or talk during these episodes and I’m mostly conscious. It’s maddening. The hospitals seem clueless. Many tests thry want to run but I’m having great difficulty getting to all of these tests and feelings of torture after movement, car rides, pressure on skin etc.

I don’t have any clear answers but they certainly aren’t alone. Do you have access to an autonomic neurologist? I’m attempting to get into one but it’s a 2 year wait. None of these hospitals seem well versed in what I have. Past 2 neurologists just told me I’m one of the most complicated neuro cases they’ve seen …. Yet they mostly just scratch their head and send me home. It’s like a twisted joke.

I had been recovering small amounts of functioning but I just can’t get out of back to back flares myself this year. It’s absolutely maddening. And devastating.

Sending solace