Hi, I am a 23 year old female, I have been diagnosed with POTS (by a tilt table test) since December, but I have had tachycardia issues and different diagnoses for about 6-7 years now. Many different meds tried. I was diagnosed with POTS by a cardiac electrophysiologist in December, and he has been treating me for the past 6 months with Florinef, and it isn't working. He doesn't know what else to do, and I am still tachycardic and still having high BP and other symptoms. I found an autonomic neurologist at UNC Chapel Hill, (Dr. Caroline Klein) and tried to get a referral to her, but was told she was on a medical leave of absence. So now the EP says he is going to refer me to another EP specialist at Duke or UNC. The doc has mentioned sinus node ablation and/or pacemaker several times and I am afraid that is what they are going to want to do at Duke or UNC and I have read that ablations and pacemakers can make POTS patients worse. My insurance is called medcost and only covers doctors in NC or SC, it is a preferred provider network, so if I were to go to Vanderbilt or Mayo Clinic (FLA), I would likely have to pay out of pocket. I feel like I am running out of options and I don't know what to do next. Does anybody on here live in the carolinas and have a good doc that you have found to treat your POTS ? If anyone has a good doc, please let me know. Thanks.
I also live in NC and tried to get a referral to Dr. Klein. Same issue with her medical leave. My neurologist insisted that I go to the Mayo or Cleveland Clinic. My insurance would pay, so that's why I chose Cleveland. I live in the Charlotte area and found it very difficult to find any kind of doctor that could treat me. I have orthostatic hypotension, not POTS, but I would not give up and would accept the referral to Duke or UNCCH since your insurance would pay.
I am going to go to UNCCH and see another electrophysiologist. I really feel like I need a neurologist, but I am going to give the UNC cardiology clinic a try and see what they have to offer. At least I will be getting my foot in the door at a university medical center and maybe if I need to see another specialist they can help me with that. I go on July 14, and I am glad that they got me in so quickly. I just wish that autonomic neurology wasn't such a rare specialty with doctors few and far between ! Thanks for your reply !
Our daughter has been under Dr. Kline's care for 4 years .. we, too, are searching for another physician who might be able to help in Dr. Kline's absence. Have you had any luck since your last posting?
Ronald Kanter (MD) at Duke is a pediatric cardiologist who treats patients with dysautonomia. Sonia Rapaport (MD) is a holistic/integrative physician at Haven Medical in Chapel Hill who treats patients with dysautonomia and looks at nutrition, movement, supplements, etc. She's connected to Familial Dysautonomia Hope Foundation. Tom Motyka (DO) is a family physician in Chapel Hill who does ANSA testing, but doesn't have a dysautonomia specialty/interest as far as I know. As far as I know with Dr. Klein out, they're the only dysautonomia-aware doctors in the area.
My husband also has orthostatic hypotension. We have been to Mayo and Vanderbilt. We need someone to treat him now. Do you know of anyone now that Dr. Kline is no longer available. It is not feasible to travel from NC to Tennessee or Florida for medical appointments if someone is available in this area or even this state. Please reply . Thanks
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