Do you think that the hypermobility is linked to the autism/ADHD, or have you ever had testing for EhlersDanlos Syndrome? That does seem to be linked to ES… As you have mentioned that you get pulsatile tinnitus then maybe Mr Axon at Addenbrooks would be good to get a referral to… The waits are so frustrating, but if it’s not too long to see your local ENT then hopefully they can refer you to Mr Axon, that’s how I got my referral, through the MaxFac clinic at Ipswich hospital, as they didn’t know much about ES. There are lots of research papers linked on here which mention IJV compression, one written by Mr Axon & a colleague at Addenbrooks, so you could print one of those off to show your GP or ENT.
Here’s the one by Mr Axon:
Dr. Higgins & Dr. Axon : Spontaneous Intracranial Hypotension Complicated by Subdural Effusions Treated by Surgical Relief of Cranial Venous Outflow Obstruction - General / Research Papers - Living with Eagle
And there’s another couple which you might find interesting:
CFS/ME, CFS Leak and IIH induced by IJV compression - General / Research Papers - Living with Eagle
Interesting Article by Kjetil Larsen; AAI/ CCI/ Jugular Outlet Obstruction - General / Research Papers - Living with Eagle
I don’t know how long you can concentrate for though to read technical articles, I had brain fog with IJV compression, & with ADHD on top it might be too much!
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