oh owww… hugs for also likely having chiari…
though I’m wondering… (but I dont really understand these things v well… so it is really just ‘wondering’ )- the ‘when swelling/muscle tightness is there= no autonomic probs, swelling/tightness gone=autonomic probs come back”… I’m wondering whether rather than ‘true chiari’ you might have craniocervical instability??? (or …maybe you are cursed with having both???)
the only things I know of that can be helpful with craniocervical instability are to have v good working core muscles in your neck and special neck braces
hope you will find out if it’s chiari/c c instability and hopefully someone will be able to help you with these things-
one american surgeon that seems best informed about EDS/chiari/cranio… (he works closely with dr. francomano) is a mr. fraser henderson.