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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. por-cel19

    tilt test question

    I've been testing my Bp for a while now when I get up I record resting stand one minute then five minutes. Bp will drop a few points but hr would jump real high. Example 127/80 resting 69 bmp after five minutes it went to 117/70 with 115 bmp
  2. por-cel19

    fainting question

    I'm definitely trying to cope its a bit hard though but today met with neurologist and I gave him the paperwork. He said there might be a problem with insurance but hopefully it will go through.
  3. por-cel19

    tilt test question

    I did a tilt test back I January my hr and Bp bottomed out meaning neurally mediated syncope but now I have symptoms of pots can you have both ? Cause now when I pass out my heart races but Bp bottoms out I'm confused.
  4. por-cel19

    fainting question

    I will I hope I don't have to wait too long that's my biggest worry
  5. por-cel19

    fainting question

    neurologist tested me for seizures and narcolepsy all tests came back normal. I'm stumped but ill be getting referral to Vanderbilt this week.
  6. por-cel19

    fainting question

    so I've been having fainting spells since September but recently its gotten worse I've had a cold for the past week and now not only do I faint when I stand I do it while sitting. It's a little odd though. I'll pass out but it'll look like I'm sleeping. My head will just drop then it'll take me...
  7. por-cel19

    Vanderbilt dr

    so this week I'm gonna try and get referral to Vanderbilt. If anyone here has been there what Dr do you recommend? They ask on paperwork which I would prefer.
  8. por-cel19

    flordicortisone

    well took it first time 4 hours ago I don't feel anything so I guess I'm ok
  9. por-cel19

    Try an abdominal binder or what?

    where would you find one?
  10. por-cel19

    flordicortisone

    what side effects did you have?
  11. por-cel19

    looking for dysautonomia specialist

    kewl ill check him out halycon I requested an appointment with Vanderbilt haven't heard anything yet so have you been there if so howd you get in it seems like its really hard
  12. por-cel19

    flordicortisone

    Dr switched me to this plus the midodrine but I'm not gonna take that again what I want to know is do I need potassium supplements since this is at 0.1 mg per day? And any side effects i need to watch out for?
  13. por-cel19

    looking for dysautonomia specialist

    little rock Arkansas
  14. por-cel19

    looking for dysautonomia specialist

    I am looking for specialist in syncope be it pots or something similar traveling isn't a concern just needs to be good
  15. por-cel19

    syncope in er

    well I've already taken the a1c blood test for diabetes it was 5.2 the lowest on the scale. But I plan on seeing one for andrenal stuff since Addison disease if a possiblity
  16. por-cel19

    syncope in er

    gotcha thanks
  17. por-cel19

    syncope in er

    i was asking about salt sticks cuz it say like 2 every 30 min you work out.
  18. por-cel19

    syncope in er

    nope usually get the blue advanced care its good after I got passed the syrup texture. And I try and do a few liters but I can't keep from peeing it out and that does me no good.
  19. por-cel19

    syncope in er

    I do pedialyte so two like every day?
  20. por-cel19

    syncope in er

    ok then what dose has been helpful to you guys?
  21. por-cel19

    syncope in er

    how much would you recommend to take?
  22. por-cel19

    syncope in er

    well I wont try it again. I'm so sensitive to medication its unreal. I'll try salt tabs maybe that'll help or get an appointment with a real specialist maybe Vanderbilt.
  23. por-cel19

    syncope in er

    so I talked to my drs nurse she was pissy and said she may not be able to change it and to give it more time. I don't want to argh.
  24. por-cel19

    syncope in er

    well ill look around even if I have to drive across state ill do it.
  25. por-cel19

    syncope in er

    ill ask about it then on Monday and ill try an schedule a appointment with enchroinologist about blood level volumes
  26. por-cel19

    syncope in er

    I've been reading up on Vanderbilt I might try it if I can't straightened this out with current ep cardiologist. I'm not sure how far Stanford is. Gingergrrl I have no idea why midodrine did that but Ill change it to something else.
  27. por-cel19

    syncope in er

    the trouble is finding one in the state of Arkansas
  28. por-cel19

    syncope in er

    thank you. The cardiologist I'm seeing diagnosed me as neurally mediated syncope but I think its more than that. I'm going to do more research.
  29. por-cel19

    syncope in er

    woke up today feeling extremely tired had to crawl to bathroom. Went to different ER from yesterday they actually gave me fluids. I feel somewhat better. Just normal tired I had passed out in ER after urine sample they knew I wasn't playing after that I'm wondering if it was medication from...
  30. por-cel19

    midodrine unusual side effects

    nope I wish they would have Arkansas ers they don't treat you unless your dying