MTRJ75

Depends what your particular individual issue is, no? Personalized medicine. Blood flow to the brain? Gimmie one of those hyperbaric oxygen chamber treatments. Need an autonomic reboot? I'll take a stellate ganglion block...etc.

I think almost every one of these treatment trial options have been talked about here in one way or another. 

I feel like if I had access to most of these treatments one or two may actually work. I don't even see insurance companies paying for many of them though. 

https://www.healthrising.org/blog/2022/09/01/long-covid-treatment-trials-winners-losers/

It's funny that this pops up on Health Rising a few days after your post. Thinking of purchasing one of these devices. 

https://www.healthrising.org/blog/2022/08/01/inspiratory-muscle-training-chronic-fatigue-long-covid/

The following has stuck with me since reading it a few days ago. I think this might be part of my problem with the heat/sunlight, but am starting a new thread because that one is three pages and I don't want this to get lost in it. 

Quote

Systrom has suggested that small nerve fiber damage could be shunting blood away from the muscles in ME/CFS. Wirth and Scheibenbogen proposed that narrowed blood vessels in ME/CFS are triggering an explosion of vasodilators which, in turn, are producing a wide array of symptoms. Those narrowed blood vessels could be reducing blood volumes. 

There's also something about "vascular remodling" in there somewhere. 

https://www.healthrising.org/blog/2022/07/25/gas-exchange-ii-long-covid-microcirculatory/

That's great, but only mentions light. I can handle the sensitivities to light more than the heat and by sun I meant when it hits my skin, not the light it causes. 

There are many medications and treatments I initially refused. That list has greatly dwindled over the last five to seven years. 

Going all the way back to the original post, I don't know why I didn't think to ask this before, but are there any medications that we take that could increase sensitivity to heat/sun? 

This sounds a bit like the Wim Hof Method (the hyperventilation part at least). He claimed to be able to train his autonomic system. 

Why is it so hard to find a win? This specific scenario was the main reason my neurologist said he was against IVIG. I hope you find a positive way through it. 

I got popped just a few months in, but haven't heard from them since. I just passed my first year in May. Maybe it's because I'm still on SSDI because I don't have enough recent work credits yet. 

I find that wearing these devices only heightens my stress levels. If I'm not feeling it, I don't immediately worry about it. It's helped. 

In other news...

Mama mia!!

Yes, but for several years at the same dose at this point. 

I don't know what my mast cells are doing, just that my nose is always running, I always feel like there's a volcano inside of me and I start sweating profusely just by leaning forward. 

My BP is weird. Runs high more often than low. 

It's a shame, but understandable, that they decided to charge for the videos this year. Thanks for the link. They had a POTS-centric physical therapist on last year that mentioned that no exercise program was going to be successful if mast cell issues are still out of control. And despite all the medications I'm not, I still believe that to be the case. 

Honestly, I've been thinking about exposure therapy, which is the exact opposite of avoiding triggers. I have to be able to deal with warm weather eventually. 

I always fear asking doctors about exercise programs because I don't want to get into the whole deconditioning as a cause debate. 

If there were a sure fire way to train myself out of this, I'd do it. 

Heck, if they told me they'd put me in a coma for 2-3 years, but I'd be completely cured when I woke up, I'd take that at this point. 

I have so many things that needed to be done this weekend that needed to be put off again. Friendships that need to be put on hold again. 

I feel I need to figure out all over again how to move around without triggering an autonomic crash. 

PS - The cold water splash did have a short, temporary, minor positive effect yesterday, but just enough to get me back to the couch a complete meltdown. 

It frustrated me so much when people dismiss this as being like the flu. There's not enough education on the havoc this infection reaps on the vascular system in the brain, lungs, heart that could can quite possibly be long term. And now this thing is mutating so quickly that I've been reading vaccine updates are already outdated when the come out. 

Hopefully, the response from the nurses was because this is a common reaction they're used to seeing. 

I get what you mean about willingness to go through any temporary h*** if it meant long term relief. I'd probably make the same decision you are. 

Today's been a struggle too, even without much heat exposure. Haven't been able to break out of that deep muscle ache I wake up with an I think the mast cell/allergies stuff are playing a big role. I can feel the drip in my throat before the ectopic beats even occur. I'm on three different allergy medications that aren't working. 

I don't know why I feel like I'm getting less blood to the upper parts of my body sitting down than when I'm standing though. 

Still unsteady and dealing with increased cramping/aching/twitching muscles, but I think if it happens again to this extent tomorrow I'm going to hit the shower and see what happens. Showers can generally cause symptoms for me, but they haven't been as bad lately, especially cooler ones with the warmer weather. 

Well that's just impractical. There's no lightning around on a sunny day. 

...unless I douse myself in the ice water and find and electrical socket. At this point...

20 minutes ago, Pistol said:

@MTRJ75 - this is what happens to me if I go outside into hot and humid air. It is one of my triggers - it causes all of the blood vessels to dilate and then, in an exaggerated response - the ANS dumps toms of adrenaline and the vessels constrict too much. This will result in shortness of breath, palpitations, tachycardia, fatigue, brain fog, muscle pains etc ... 

I wonder if splashing cold water on my face or even going to the extreme of dumping it no my head might shock me out of something like this in the future. 

Also thinking, I get a lot of leg exercise by cleaning up after the dog (lot of bending). I know this because my legs shake afterwards, three times per week. 

Also, if it's vasodilation, shouldn't the worst effect be when I'm still standing and not after I sit back down? 

1 minute ago, MikeO said:

 

@MTRJ75do the best you can to stay active it will help. I too get cramped up and the tingling pain in one arm but keeping active has helped with me.

This is a big part of my problem. I'm trying to be more active, even some pushups and weight lifting. Being met with bad muscle cramps and aches afterwards that aren't just natural out of shape stuff. 

You may have a point about the vasodilation. And then perhaps the following constriction is causing all the pain/cramps/aches. 

I didn't even think of that and breathing has not been one of my problems. Like mentioned, I did do my Kardia with the skipped beats, but it registered normal. 

I'm now onto the chills and urinating out all the electrolytes I just drank, but the muscle aching and cramping is still outrageous. 

The key in both our cases seems to be trigged by the heat though! I don't even know how to explain this to the neuro because, as I said, I was doing fine for the last week or two since the original post and even most of the year. 

What about the heat/sun is such a big trigger? 

I'm wondering if this might be Small Fiber Neuropathy? Some sort of actual damage (not just dysfunction) to the muscles or neural pathways? 

Went outside to pay the guy who does the lawn. Bright, sunny, low 80s. Was outside for less than 5 minutes. Was feeling fine (or as fine as I get, except for allergies). 

Came back inside, sat down, my nervous system immediately acted up. Blurred vision, sweats, skipped heart beats (though heart rate was in low 80s). Every single muscle in my body cramping. 

Got up, walked around. Was okay walking around. Took some electrolytes. 

Immediately upon sitting down again, nervous system went kaput again. Feels like a blood flow issue. Massive muscle cramping, Feels like there's no blood in my arm. I feel a tingle going up the next (like there's no blood flow). 

What the heck is this? And why am I triggered so hard by just a few second in 80+ degree weather with such long lasting effects? 

I've otherwise been doing better, even going some places on my own. I've even gone for a few walks later in the day when it's cooler (but still in upper 70s). 

This is starting to freak me out., although I'm doing all I can to keep calm. I won't go become helpless and couch-bound again.