dear fedi folk,
does anyone here have experience with csf leaks (ideally as a result of hEDS but not necessarily)? i'm on day 12 (13?) of a devil migraine that's affected my balance and vision, worsened my POTS and tinnitus, is causing sporadic pulsatile tinnitus as well plus mega-weird pulsing pressure in my head, and is seriously messing with my brain/anxiety. plus ofc the nausea and flashes. and pain in my head and neck, which is sometimes quite severe. so i'm wondering if it's actually a migraine or not.
these symptoms aren't new-new (and i haven't had a headache-free day in literally years, migraine or "just" a headache), but they are getting worse / more frequent, and i'm getting worried.
i also don't have a doctor here bc multiple drs in this country have told me that ehlers-danlos and sjögren's and autonomic dysfunction, etc., don't exist. at all.
(i will go to urgent care if things get worse, but it's far and they'll likely just send me home, so.)
so if anyone's dealt with this and wouldn't mind comparing notes, i'd love to.
thank you!
