Madisonjan7 Posted March 1, 2018 Report Share Posted March 1, 2018 Hi, I’m interested in finding a doctor who actually understands PoTs and takes it serious rather than telling me it’s all in my head. I’m in metro Atlanta and I also have a house in Pensacola Fl and I can commute to places in Alabama. I prefer finding a doctor in metro atl though. Has anyone ever been to Dr. Michael McConnell? Or have a doctor in these areas that know there stuff? I’m desperate. Anything helps. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted March 1, 2018 Report Share Posted March 1, 2018 If you are in ATL, pop over to Vandy in Nashville. They have an awesome Autonomic center. Quote Link to comment Share on other sites More sharing options...
corina Posted March 1, 2018 Report Share Posted March 1, 2018 Have you tried our Physician's list? Here's a link: https://www.dinet.org/physicians/ Please keep in mind everyone that you cannot eleborate on a negative doctor's experience here at our forums. You cán communicate via pm of course! Quote Link to comment Share on other sites More sharing options...
firewatcher Posted March 2, 2018 Report Share Posted March 2, 2018 I see Dr. David Tian (cardiologist) at Piedmont Heart Institute. I have only seen him twice, so I have very little experience with his POTS troubleshooting (mine is fairly well controlled right now,) but he does know more than any other doc I've seen in the past 10 years...other than Vanderbilt. If you can travel, go to Vanderbilt. University of Alabama, Birmingham has the Mitral Valve Prolapse Center which also treats POTS, but I have never been there. Quote Link to comment Share on other sites More sharing options...
Madisonjan7 Posted July 27, 2018 Author Report Share Posted July 27, 2018 @firewatcher I am so late replying but it’s so weird you say that! I see doctor Tian too. At piedmont heart. I love him, but I want someone to help me find my underlying cause. Is he helping you with that? Quote Link to comment Share on other sites More sharing options...
Anamaria Posted July 28, 2018 Report Share Posted July 28, 2018 On 2/28/2018 at 10:20 PM, KiminOrlando said: If you are in ATL, pop over to Vandy in Nashville. They have an awesome Autonomic center. I agree I saw Dr. Muldowney at Vandy and he was AMAZING. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted July 28, 2018 Report Share Posted July 28, 2018 Madisonjan7, I've given up on finding any underlying cause. I don't think that anyone outside of an autonomic research facility will have the time to do that. I had a very good experience at Vanderbilt and would highly recommend them, but even then, finding "cause" is a rare thing. Dr. Biaggioni at Vandy is incredibly kind and very knowledgeable as well. I'm happy with symptom control at this point. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted July 30, 2018 Report Share Posted July 30, 2018 I control my symptoms with "mindfulness" and medication. I know that at least POTS won't kill me, it is just difficult and uncomfortable. I took advantage of a good spell several years ago and did the Levine exercise protocol and have kept it up. CKD (chronic kidney disease) is good for volume expansion, at least. I stay up to date on the research and don't try (often) to do what "normal" can do. Honestly, I'm managing by being sarcastic and stubborn. Quote Link to comment Share on other sites More sharing options...
Madisonjan7 Posted September 25, 2018 Author Report Share Posted September 25, 2018 @firewatcher dr Tian is sending me to Vanderbilt! Very excited. I bought a recumbent bike to try the CHOP exercise protocol. Nervous to work out alone but I’ll try Quote Link to comment Share on other sites More sharing options...
firewatcher Posted September 26, 2018 Report Share Posted September 26, 2018 13 hours ago, Madisonjan7 said: @firewatcher dr Tian is sending me to Vanderbilt! Very excited. I bought a recumbent bike to try the CHOP exercise protocol. Nervous to work out alone but I’ll try Good news! Everyone at Vandy has always been helpful for me. Exercise is tough, but is necessary to make improvement...just go slow on the progress so that you keep it! Quote Link to comment Share on other sites More sharing options...
Mbritt724 Posted September 26, 2018 Report Share Posted September 26, 2018 Check out the dysautonomia-mvp center in Birmingham, Alabama. I have two friends who have gone there Quote Link to comment Share on other sites More sharing options...
firewatcher Posted September 27, 2018 Report Share Posted September 27, 2018 When you go to Vanderbilt, please take someone with you. The campus is huge and can be confusing to get around. Expect to wait a while, so bring something soothing to do. Don't be afraid that your heart rate won't behave, they've seen it ALL multiple times and know this condition! Several of the area hotels offer discounts to patients at Vandy, so ask when/if you book a hotel. Sign up for their patient portal so that you can ask questions later. Hopefully they can suggest more effective treatments for you! Good luck! Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 28, 2018 Report Share Posted September 28, 2018 One comment about Vanderbilt: when I first started with POTS symptoms I went to Vandy twice ( 9 hour drive one way ). They did a neuro exam and autonomic testing and then said I was fine, that my ANS was normal b/c the autonomic testing was normal. Another year of suffering later I went to my current specialist and was immediately diagnosed with hyperPOTS (confirmed by blood tests). So - when you go don't let them tell you what you have solely based on autonomic testing - demand they do TTT and other tests. Apparently the autonomic tests are not accurate unless you are symptomatic at that time. Quote Link to comment Share on other sites More sharing options...
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