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Diminished autonomic functions during PEM

barabara

barabara

Messages
52
During PEM attacks in the past, my skeletal muscles became paralyzed. I would breath strangely as well, or I just noticed it more. Now I get long daily attacks in which my body feels like it's shutting down.

During this time:

*I feel a panic at the same time I take some, if not all breaths. I think the panic causes my brain to take a breath.

*Stretching my legs while lying down is enough to cause my heart to race for a few seconds like in orthostatic hypotension.

*Turning over causes a sensation of blood moving from one side to another.

*While I'm falling asleep or still asleep, I wake up in shock. I can wake up drenched in sweat although I sweat very little.

*I notice my heart more during PEM and it feels like it's "not on solid ground" and that it can stop beating sufficiently if I'm pushed too far. However, it's not slow but on the fast side with normal EKG.

*Afraid of compressing or lying on left chest because of the pressure on the heart.

When I exercised last summer, the functionality of brain areas that move certain muscles got damaged. Likewise, the functionality of critical functions will get damaged as well. Though, death may result before that happens.

This "dysautonomia", if you'd call it that, only occurs during PEM. I don't have POTUS, yet even sitting takes a toll on me and I need to lie down almost all the time. If that system were to deteriorate due to being in an upright position a lot, I would develop POTUS. Just as I'd deteriorate from receiving strong shocks from my body so my brain continues to keep my heart beating or keep me breathing.

I've heard of different specific systems being damaged in people with ME/CFS. For example, stomach paralysis and paralysis of the pupils. I wonder if some but not other people with ME/CFS die of heart failure because the brain function gets damaged. After all, although heart failure is more common in ME/CFS, there are many who are very disabled but don't experience it, despite strong factors like being sedentary and isolated coming into play.
 
Jyoti

Jyoti

Senior Member
Messages
3,379
@barabara --I do have POTS and I totally sympathize with your suffering during PEM. How is it, might I ask, that you know you don't have POTS? It might be worthwhile to try to find someone with some expertise in dyautonomia. Good testing can differentiate between the various manifestations of dysautonomia and that can be really helpful.

This is a great basic article on dysautonomia, if you haven't seen it before: http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf I don't know where you are geographically, but Dysautonomia International has a good list of doctors who might be able to help: http://www.dysautonomiainternational.org/page.php?ID=14
 
barabara

barabara

Messages
52
Jyoti said:
@barabara --I do have POTS and I totally sympathize with your suffering during PEM. How is it, might I ask, that you know you don't have POTS? It might be worthwhile to try to find someone with some expertise in dyautonomia. Good testing can differentiate between the various manifestations of dysautonomia and that can be really helpful.

This is a great basic article on dysautonomia, if you haven't seen it before: http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf I don't know where you are geographically, but Dysautonomia International has a good list of doctors who might be able to help: http://www.dysautonomiainternational.org/page.php?ID=14
Click to expand...
My table tilt test was normal although it felt like a form of torture.

I bought a recliner so I could comfortably use my computer for extended periods without moving. I developed horrendous shoulder and neck pain. I thought it was because the seat posture was bad, but it was probably the typical shoulder and neck pain experienced in OI.

That pdf mentions recurring oral sores, which I have. I saw it as a sign of deficiency. I think red eyes and chapped lips would also be common in OI.
 
barabara

barabara

Messages
52
@Jyoti Although I don't have POTUS, which is specifically defined as HR increasing by 30 BPM during tilt testing, there's no question that blood doesn't reach my head well while upright, and that's probably the case for anyone who feels symptoms while standing, but doesn't technically meet the criteria for POTS.

https://pubmed.ncbi.nlm.nih.gov/32140630/

Also, I already have tachycardia when in a medical place (100-110 usually) So if my HR increased by 25 (I recall this number, but not entirely sure if that's what it was), then maybe I would meet the criteria if I didn't have sinus tachycardia. I also read that the TTT may not be accurate for people with slow heart rates, so the same may apply for people with fast heart rates.

I wonder if there's an upright head or cerebral blood flow test that's done in the medical system. It would diagnose more patients with CFS. A head blood flow test would probably be cheap and more easily accessible as well. Most importantly, if someone says it's "all in your head", you can say that it's the opposite. "There's not enough in my head".
 
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