joiedevivre

Don't let the poor man's tilt test, done by you, or a doctor at a doctor's office, determine anything. I have very extreme pots and my poor man's tilt test never went over the 30 point increase mark ( I did it 20 times at least). If you suspect pots you have to find a way to get a proper TTT before making any conclusions.

P8d, thanks, those are good ideas. I don't drive so getting to Milwaukee would be hard. I may eventually go to Toledo or Stanford for treatment, but in those cases I would fly. I'll try calling research hospitals here and dr Barboi's office. Actually, on second thought I wouldn't mind the names of those doctors if you've had good experiences with them. There's some chance I could get a friend to drive me. Thanks!

Just anyone who's a good doctor, listens to you, and works with you to try new things, and does the research. I already know of Dr Barboi, but it's a 10 month wait to see him. I need to see someone much sooner. Thanks!

Like many people I received nitroglycerin under the tongue during my tilt table test, and I became weak, ill, and my heart rate increased. I know this is given to people with heart failure or reduced blood flow to the heart so their blood vessels can dilate, but what happens to a healthy person who gets it? Do they feel nothing at all, or do they get weak from over dilated blood vessels but without tachycardia?

I don't know if I've changed the type of Pots I have, but a lot in your description sounds like your now having panic attacks ( "impending sense of doom") or at least much increased anxiety. I also have been prone, especially at certain points in my life, to getting panic attacks. Admittedly for me it makes my bp drop not increase, but autonomic dysfunction is individual. I also have been more prone to attacks when I'm most feeling unrelenting anxiety about my illness and myself and appearance ( going out in public, looking ill). It's hard to be out in public feeling like you might not survive this outing and not feel your anxiety about your illness overwhelm you, and feel separated from the normal people around you. I don't know what's happening with you but I think maybe your anxiety has increased a lot?

My cardiologist diagnosed me, because I insisted on a tilt table test ( he insisted I didn't need one), but he knows nothing about POTS. He's also unwilling to learn, I can't imagine him doing research or being ok with me bringing him papers for example, and he won't let me talk about my illness or symptoms. He's not any kind of partner. However I'm having trouble finding a doctor in my city that knows about pots and accepts my insurance. I was wondering if my gp can manage my treatment until I find a pots doctor? Do any of you get treated by your gp? I think my gp is willing to learn and also listens to me even if he doesn't have specialized knowledge in cardiology. Thanks for any advice or experiences you have to share.