Wowee! So much has changed since I posted that! You may find this interesting, Doctor! As you suspected, yes, I was just diagnosed with EDS-HM by a doctor who is familiar with it. I am going to see a clinical geneticist next month for further investigation. But get this…this is his theory. He thinks that with my last delivery of my 10.5lb son who came out in 4 pushes I managed to damage my pituitary in the process. With being stretchier than normal I pushed him out fast and add my Chiari malformation plugging things up on top of that and you have the recipe for intense pressure increase and decrease. My recent hormone test came back showing low cortisol as well and he suspects that may be the big reason im experiencing dizziness and intolerance to standing. Here is the weird part and where he didn’t really listen–my blood pressure goes UP when I stand. That doesn’t fit with low cortisol.
How’s that for unusual?! 🙂