When my ME was at its worst a few years ago, I frequently experienced such episodes of autonomic instability. I went to the ER three times in the space of six months but gave up after that because no diagnosis or treatment was ever offered. No one even figured out I had POTS even though my pulse would be normal while lying down and then shoot up immediately when I sat up in hospital bed. Pheochromocytoma was ruled out but that's it, you're on your own. At least they didn't try to tell me I was having a panic attack. I suppose I should be thankful for small mercies.
During those severe years my usual BP was 80/60, pulse 80-ish when lying down and 140-160 when standing, depending on time of day. On top of this I would get these adrenergic storms some of you have described where my BP would suddenly go up by 100 points to like 180/110 and stay there for a few hours. I used a beta blocker for a year to deal with this but of course it worsened my regular BP and took away what little energy and functionality I had. I stopped it eventually as my ME improved and these episodes have not returned.
I think in my case it was a combination of overexertion and an enteroviral infection that was causing these wild autonomic problems. At the time I was in denial about my true level of functioning and still trying to do things around the house when in actuality I was bedridden and this trivial activity was keeping me in permanent PEM.
These days my BP hovers around 90/60-110/70. When I stand my diastolic rises and pulse pressure narrows. I have hypovolemia and POTS. I don't take any meds.
During those severe years my usual BP was 80/60, pulse 80-ish when lying down and 140-160 when standing, depending on time of day. On top of this I would get these adrenergic storms some of you have described where my BP would suddenly go up by 100 points to like 180/110 and stay there for a few hours. I used a beta blocker for a year to deal with this but of course it worsened my regular BP and took away what little energy and functionality I had. I stopped it eventually as my ME improved and these episodes have not returned.
I think in my case it was a combination of overexertion and an enteroviral infection that was causing these wild autonomic problems. At the time I was in denial about my true level of functioning and still trying to do things around the house when in actuality I was bedridden and this trivial activity was keeping me in permanent PEM.
These days my BP hovers around 90/60-110/70. When I stand my diastolic rises and pulse pressure narrows. I have hypovolemia and POTS. I don't take any meds.