Dear Dr. Driscoll:
I have read your theory inside and out, and know in my gut you understand whats happening more than any of the 50+ doctors I’ve seen. I have EDS HM Type III and developed POTS after a very serious viral infection and a whiplash injusry. I have all the symptoms of high intracranial pressure and the crushing base of skull/top of neck headaches that come with it. Frankly, the only way I can survive is with Xanax.
I have been taking Diamox for a year and following the MCAS protocol. (and my sodium bicarbonate levels are fine!.) I even take Parasym Plus daily.
But I’m not recovering. I’ve also found out I have chronically low IgG, particularly subclass 1 which perhaps makes my POTS autoimmune in nature.
I’m looking into CCSVI but no doctor’s are taking me seriously.
I just don’t know how to move forward.
Please - any advise would be appreciated!