Oh, dlvan, what is her CO2 level (in her blood)? Diamox won’t work if the serum CO2 dips below 22. If that is OK, and Diamox is STILL not working, then it’s time for the once over from your doctor! We can’t assume everything is from EDS/POTS — let’s not forget that! We also tend to develop aneurysms (yikes), vascular abnormalities of all types, non-communicating hydrocephalus (Diamox likely won’t help that very much), migraines, etc. Will you keep us posted? 😉