Welcome home, Bendychick! 🙂 I think you’ll see a lot of similarities in your symptoms with most everyone else here! (Palomino — I’d forgotten about what Dr. Clair said — that was SO FUNNY!). Bendychick — Palomino, another EDS friend and I were all standing, towering over the wonderful Dr. Clair Francomano. It was pretty funny, but she is right — only one phenotype is like that! 🙂
If I had to guess, I’d say that you fit The Driscoll Theory to a “T”. Did you see it on the site? Palomino is giving you great advice. I, too, get the impression you are dealing with mast cell disorders and hydrocephalus.
Please take a peek at the theory and see if you and your doctors agree that a trial of Diamox to reduce your pressure and double dose Zantac/Zyrtec doesn’t make sense to you. If you respond well, then full treatment is likely in order. And, wow, can it be life changing!
So glad you’re here!!