Thank you for responding. I too have constant pain in my head and neck and in my right shoulder. My pain becomes intolerable during the winter months and during barometric pressure changes. I lay down most of the time to control the pain and I keep my head slightly propped up. It feels like my head is going to explode from the pressure and the brain fog is terrible. I am bed ridden majority of the time from pain. I appreciate you sharing that you feel your life is at risk due to the pain. I feel that way all the time. I can’t imagine this much pain is not life threatening.
My only advice is to see a rheumatologist or an orthopedic doctor if you suspect EDS. A rheumatologist is the appropriate specialist for EDS so I would start there.
Definitely tell your neurologist about your symptoms and things you have read. From my own personal experience, I feel like the more info I can give, the closer I am to getting better.
My mother has so many symptoms of EDS but she’s not hypermobile. I feel like she has some variant.
I wish I could be more helpful, I hope you feel better soon.