What should I be telling him about delayed OI in PWME, specifically? If anything?
Sorry I haven't been following your symptoms, so I'll just give general responses. Unless you have your own personal data, having done 20 minutes or more of the poor man's TTT, I'd just take along published material (like what SOC linked) that gives information on it--in case he doesn't know about it. From my experience most cardios know very little about dysautonomia.
[QUOTE/]What tests should I be asking for?
The TTT for more than 20 minutes would be the basic one. If you suspect any arrhythmias, I'd ask for a holter monitor or one of the other tools that charts your electrocardiogram over at least 24 hours.
I think it is important to make sure you have ruled out atrial fibrillation.
I have had episodes of Afib which were so extreme that they screamed at me, waking me from sleep. Sometimes a person can have a lower level of Afib and not know it. When I have had it, my BP would go up to about 170/130 and my pulse would jump from 120 to 180 continuously. It is easy to monitor this with a good HR monitor. However, you would need an electrocardiogram to show less extreme arrhythmias.
Unfortunately, in my experience, both POTS and NMH are
somebody else's problem in the eyes of cardiologists.
That has been my experience too, although on the 2 occasions I had to go to the emergency room, the docs there had a basic knowledge of dysautonomia so that they at least knew what NOT to give me. And they were excellent at treating Afib with an IV medication.