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Elegiamore

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About Elegiamore

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  1. I went to three acupuncture doctors. Each one of them told me that with my extremely high norepinephrine readings with hyper A POTS, that they wouldn't touch me because they could cause a malignant hypertensive crisis. My experience. I was very disappointed.
  2. After several decades of POTS, I do not remember what "normal" is at all.
  3. It's easy to get a hyper A POTs diagnosis compared to the past, when it had no name and wasn't believed, even by existing autonomic doctors. You just need to go to a POTS center and get tested on a tilt. You are asking for suggestions for running to keep your BP down - YOU NEED TO KNOW IF THIS IS POTS OR NOT. Guessing doesn't work. Alcohol causes high BP in those of us with hyper A POTS USUALLY because we are reacting to the high histamine in the fermented part of booze. Per Dr. Raj (white papers) patients with hyper A POTS, for real, are salicylate sensitive and have severe hypert
  4. I got POTS when I was 20. I turned 60 this year and I have gotten progressively worse. All cases are different.
  5. Got POTS at 19 in 1973. I turned 60 last week. Just got out of the ICU cardiac after six days from making a very minor mistake. I only get worse. I think it's best to face the truth that nobody can tell if you get over POTS or not; it depends on your cause of the illness and endless other factors.
  6. I've had my port for 18 mos. and no pain whatsoever. Except, of course, it gets sore from the needles as I get saline three times a week now. But no pain. I don't want to worry you, but this is how infections start per my infusion center; usually right after the port is put in with pain. You may not have a temp for some time with an infection. By chance, I met a guy in the infusion center last week that had NO FEVER until the port was flushed the 4th time - then he had pain and a temp of 104 within an hour and almost died; was in intensive care for two weeks. The infusion dr. STILL didn't
  7. Hi! I just read your post about the patches. Right now I take Clonidine tablets x3 day. Sometimes I only have to take one pill depending on if my bp is normal or not. I was considering using the patches. What mg do you take and how often do you have to change them? Do you get dry mouth from them as well? Thank you so much for your response. Dixie

  8. Thanks for the support. Tracking down those services are a pain, but they are out there, so keep trucking!

  9. KeXia, I'm with you more than you know. I've been looking for free services and such, so if I get any smart ideas, I'll share. KEEP THE FAITH and let loose with your POTS pals. Elegiamore

  10. I have hyper adrenaline POTS and take clonidine. I pool and have hypovolemia (missing 29% blood volume without treatment). Considering the above, here's what I know: Clonidine has saved my life, hands down. (My NE levels without meds on the tilt table were 5000 mg, so I am an extreme case.) 1. Pain: the American Pain Foundation includes references to clonidine in their literature for pain control. This is simply because clonidine reduces NE and therefore panic and stressing up from pain. Also any increase in NE increases pain (I have the articles on this), which might explain fibromyalg
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