My mom and I have been searching for what seems like forever. We don't mind traveling far and we live in California. Thanks.
Sorry, can't help with a doctor but this support group here at drugs.com may be of interest to you.
I too am having difficulty finding one to TREAT me. Most electrophysiologists have no problem diagnosing you (tilt table, sitting/standing hr), but then I'm told that there really aren't any successful treatment options. However, I was recently given the name of Dr. Blair Grubb, at University of Toledo Hospital (Ohio). I was told he is a world renowned expert on POTs and is big on POTs research and trial therapies. The downside? Wait list to see him is 12 to 14 months. To see his nurse is something like 8 months. I am currently on the wait list. IF you are interested, his number is 419.383.3925.
Best of luck to us both!
I got the same thing, 2 EP crdiologists diagnosed but won't treat it. I also had the auto neuro specialist at Jax Fl Mayo William Cheshire refuse to treat me. I am waiting to get into see someone at Vanderbilt U in TN, (6mo) they have the only national center for autonomic disorders, they will not treat but will work with a local MD. Here's the thing: after 3 specialists refused to treat me,on my third hospital stay this time 11 days, my primary care (Internal Medicine) MD kept plugging along til he got me stable. Bless his heart and brain! POTS is actually all about treating the symptons, then juggling meds and adding them as needed. Midodrine is really ONLY for low standing BP. Florinef for chronic dehydration (which doesn't resolve with salt and extra fluids) and a beta blocker to pull the pulse down.
I have found that taking my meds 4-6 hours before I get out of bed (not midodrine) works well, the mediction is peaking to keep my pulse down when I am getting out of bed and need it the most. Multiple people have posted that drinking up to 32oz of fluid 30 min before getting out of bed also helps, if dehydration is a problem.
I am a 44 yr old female, who has been in the medical field for 20 yrs. I work for J&J in surgical devices, and absolutely love what I do! Unfortunately, I was diagnosed and disabled by POTS on March 1st, 2013. I was shuffled between specialists for 3 months, and by the time I reached my POTS doctor, I was desperate. I am VERY compliant and persistent. I will tell you that what I have found is there are many physicians who will "diagnose" you with POTS; however, do not have the skills to treat the disease! I am FLOORED by the lack of attention and awareness to this disease. I have spent 20 yrs speaking with the world's most prestigious physicians in many elite specialities, including Neuro Surgury, Vascular Surgery, Cardiovascular Surgery, and Electrophysiologists,as a career! I can share with you, in Richmond, VA at MCV Medical Center there is an Internal Medicine Nephrologist, Dr. Dominic Sica, who is very active in treating POTS.
He is very well published and is President of the American Hypertension Society. He is also very busy; however, is dedicated to treating the illness, and personally speaks with me 2/3 times a week. I highly recommend him, and I can also include his nurse, Donna Paschal, who I email daily and although I am 2 hrs away, she coordinates Home Health Infusion, and other items very quickly! I can share with you, I will get back to "normal" with their help; however, as he states " we have to reframe normal". I was working 80 hrs a week, have 2 kids, socially active, exercised daily, etc... I will NOT be doing that again; however, my goal is to live a realistic and balanced life. There are 2 components to achieving our goals:
1. Really wanting to , so WILL
2. Having the skills, so Ability
BOTH have to be in sync to achieve success. We all can do number one by ourselves; however, number 2, is where we may NEED guidance and coaching( a good doctor to spend time and have knowledge of POTS). I suggest you make sure you have number 1 and then contact :
Dr. Dominic Sica or Donna Paschal
MCV Medical Center
Internal Medicine Nephrology
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