does anyone else have POTS?

Discussion in 'Fibromyalgia Main Forum' started by annab, Nov 29, 2002.

  1. annab

    annab Guest

    My heart goes way to fast whenever I stand up. I can only stand for about 5 minutes, before I get too dizzy and nauseated and my legs swell and I can't think anymore and my heart gets more and more arrhythmic. I'm mostly confined to my house. I have to use a cane if I walk any further than out to the car. I can't afford a wheelchair right now so I hardly ever get to go anywhere fun. Does anyone else feel like this?
    Annab
  2. annab

    annab Guest

    My heart goes way to fast whenever I stand up. I can only stand for about 5 minutes, before I get too dizzy and nauseated and my legs swell and I can't think anymore and my heart gets more and more arrhythmic. I'm mostly confined to my house. I have to use a cane if I walk any further than out to the car. I can't afford a wheelchair right now so I hardly ever get to go anywhere fun. Does anyone else feel like this?
    Annab
  3. Carlacat

    Carlacat New Member

    I was just DX with Pots and yes I know how you feel. I'm hoping they can put me on meds to help so I can at least get around and maybe go shopping for Christmas. A good site for Pots is potsplace dot net. Take Care and email me if you like cause I know exactly how you feel..Plus now I've come down with a bad cold and I'm miersable.
    harrymac1@charter.net
  4. annab

    annab Guest

    Did you have troubles getting diagnosed? I was diagnosed with anxiety first. Doctors were rather rude when I kept insisting that it wasn't anxiety. Then I was diagnosed with vasovagal problems, then neurally mediated hypotension, and my current cardiologist is the first one who actually knew what I had just from my description. He immediately told me it was POTS and listed off a bunch of medicines and a new heart surgery called abblation. Florinef doesn't help. Midodrine helps the most, though it certainly isn't a miracle medicine or anything. Beta blockers nearly killed me.Do you have to eat lots of salt too?
    Annab
  5. teach6

    teach6 New Member

    I don't have POTS, but I do have NMH, really. I also had a hard time getting dx'd. Before my dx for CFS and FM I was having increasing health problems and my PCP had no clue. For two weeks in a row I was having trouble breathing and it was Friday and I was really worried about going into another weekend like that. So I made an appiointment with my doc, the idiot.

    When I got there I told the nurse what was wrong with me and how it was making me feel. When the doc came in he listend to my heart and lungs and they were fine, DUH! So he proceed to tell me it was just anxiety and I was hyperventilating and that's why I had trouble breathing.

    For the first time in my life I argued with a doctor. I was so angry because I knew what was wrong, I told him what was wrong and he told me I didn't know what I was talking about. I told him I had experienced anxiety and hyperventialtion and this was not the same thing. I didn't convice him, but I felt better for standing up for myself.

    I am now being treated by a different doc, who ois very familiar with all the things wrong with me. I take Florinef, Proamatine and Toprol. The first time I tried the Toprol (Beta Blocker) I had to stop it because it made me feel worse, which I didn't think was possible. After we got my BP up a bit with Florinef we added a tiny dose of Toprol and then alternated the two until I got to the dose where I am today. I'm not cured, but at least I can sit up without feeling faint like I did last year.

    Barbara
  6. annab

    annab Guest

    When I first got POTS, I would collapse whenever I tried to get up and do anything. I ended up in the emergency room several times within a month. I was accused of lying one night while my whole body was trembling and my heart monitor showed my heart as extremely arrhythmic. Another night, I collapsed and faded out to unconsciousness. My husband got someone else to help him get me to the car. In the emergency room, I sat slumped over in a wheelchair while I waited. The doctor that night refused to believe me. He insisted it was anxiety and that there was no other possibility. My heart went into an extreme arrhythmia when the nurse stood me up, anywhere from 50 to 200 constantly, for 45 minutes. My husband went out a few times to beg them to come check on me, but they refused. It was making me gasp whenever my heart skipped too many beats. Finally when my heart was starting to settle down, a nurse came in, heard me gasp, and said "stop that, you're making it worse!" The doctor finally came in after about an hour, when my heart was only going 50, and started to unhook me from the heart monitor and told me to go home. He was astonished when I couldn't get up and walk out. He gave me 2 liters of fluids and knocked me out with a tranquilizer. They concluded that it was anxiety because my heart was o.k. while I was unconscious. (They didn't stand me up during that time to see what would happen).
    Anyway, that was 7 years ago. I rarely collapse now.
    Annab