Finding a dysautonomia expert

[Weary]

Do people recommend using this site to find a dysautonomia doc in ones state? Other methods?

am still debating if i should tale the energy to do this officially. I do rechnically have the diagnosis in my charts because an EP cardio helped me out but hes not an expert in it and i still dont have anyone who can help with the hyperandrenergic state and other manifestations 

One of the posters here described something ge called "health anxiety"  by which i think he meant his heart rhythm was fine when formAlly tested and doc thought ge was imagining it all  id be like that  i could say expending considerable scarce physical resources to go to a dyasutonomia center, requiring travel, possibly hiting a companion, arranging considerable food restrictions etc etc  It woukd be major expidition - only to get there and find that day my body decided to doits best normal person initation, perhaps from the novelty of it all  od pass all tests with flying colors  id be declared healthy, all my current diagnoses codes superceded by record "does not gave dysatonomia" which would hurt greatly  meanwhile, my flare from the ordeal, which woukd start 1-3 days following getti g hone, woukd be so bad od be bedridden, it woukd last months- but now no one would believe me.. 

so thats one reason havent pursued it...i need a dysautonomia walk in clinic oli can go to rather than an ER, but i guess tnose dont exist  or perhaps a doc office not a "center" where i could go several times and expkain and come up with a plan to be seen at the right time 

to add a final irony, ive been in many regular doc offices during attacks, even once a cardio, and they do nothing  can count 5 off top of my head but probably more but prob when in a dysautonomia office id be having symptons of someone elses specialty  

 

[Pistol]

Weary - have you ever considered Vanderbilt autonomic clinic? They are in Nashville and have many specialists ( cardiologists and neurologists and others ) that diagnose autonomic dysfunction. --- Don't worry - someone who understands dysautonomia will take your symptoms in consideration, the one's that only go by numbers appear to be the ones that do not understand the condition. --- If you feel you have POTS/dysautonomia and you feel your symptoms are out of control you should really see a specialist experienced in POTS. I have to drive 8 hours one way to mine which takes 3 days total for a half hour appointment but it is all worth it. You would be surprised how important and relieveing it is to talk to a physician that thinks everything you are telling him makes total sense. -  If you want answers you should see someone who has answers. Best of luck! 

[StayAtHomeMom]

I was diagnosed by a non specialist. But when he started me on meds and I was having breakthrough tachycardia he was recommended by the local EP to contact a specialist 3 hours away. Having the specialist that knows what is going on is helpful in the long run. But I hate traveling that far personally. 

[Guest KiminOrlando]

I drive 6 1/2 hours to mine. I get what you are saying though. What I can tell you is that REAL dysautonomia specialists don't diagnose and manage to one time numbers. I spent 20 years getting tossed around between local specialists who claimed to know what they were doing, but really didn't.