I’m sorry I wish I had some answers too – I’m in the same boat with POTS and orthostatic intolerance. Just wanted to send a virtual hug and say that your not alone. I hate to see others suffering too but it is a comfort to know people out there have the same issues and understand. I live in Scotland and there is not a single autonomic specialist in this country – no generalists interested in learning either!
May I ask did you have your MRI scans upright or lying flat? I just had a lying MRI and am wondering if this would pick up a small chiari? I only have headaches when I am upright, not lying down, which makes me think my CSF flows fine in the horizontal position.
It is so disappointing that surgery didn’t improve things for you 🙁 I am glad you have access to good doctors. I have read about shunts as another measure for raised ICP, is this something you have looked at?
Best wishes,
B xxx