Hi Horselover,
I don't know if you're still searching for answers but if you have indeed been diagnosed with Ehlers Danlos syndrome I have a suggestion for what you may be suffering from: cervical cranial instability. It's not uncommon with EDS, about 1 in 15 develop it, and it can cause many of the symptoms you describe. Have a look into it. It's a long shot, but this may be the root of at least some of your problems - and there is an albeit expensive surgery that can fix it. All best, Flex.