Ok saw the new HEM/ONC, Dr. Frame in SLC yesterday.  Complete waste of time.  But he said I need to see a cardiologist about my tachy.  So is it a cardiologist or neurologist who diagnosis this stuff, I have seen both on this forum and don't want to get an appt with the wrong doc.

Hi Wendy,
I just wanted to tell you that it's not always easy for docs unless it's a clear cut case of POTS.  I had a strange hyper type of POTS that by the time, 3 years had gone by it subsided but turned into a different form of dysautnomia, autonomic neuropathy with orthostatic intolerance, which was hard for most doctors to detect.  I found a great neurologist who recognized it, but sent me to Mayo since she said the form I had was rare and didn't really know too much about it.  I saw Dr. Goodman in Scottsdale, AZ.  He is AMAZING.  He has a Qsart machine there which is the machine they used to diagnose me, which can also help diagnose POTS.  It was very easy.  But these machines are hard to find.  At the time I checked I had only found about 8 in the US.

Dinet forum also has great resources of doctors and there are so many people on the blog that it would be a good place to post your location and people could steer you in the right direction.  I have found that POTS and dysautonomia go hand in hand.  

Let me know if you have any other questions.  
Maiysa

I agree with the others - you need to find a doctor that is familiar with it, as most have never heard of it before.  There was a study done by Dr. Levine that indicated that exercise benefitted the patients in the study, but the criteria for getting into the study was very strict.  From what I've read, POTS can be a symptom secondary to mast cell disease, and it's actually by controlling your mast cells that the POTS symptoms may be somewhat alleviated.  I originally thought I had POTS (and was diagnosed as such before the criteria changed), but have come to realize that it's actually a mast cell reaction from the physical stress of standing, not the standing itself.  It's a very blurry line, as many symptoms overlap.  As mentioned, check out dinet.org - there's lots of great information on the forum about POTS, and also lots from folks who have both that and mast cell disease.