I’m sorry that your head pressure has been so painful- when I laid flat I would wake with a headache too, and then it would go, but was able to sleep propped up. I guess all you can do as far as sleeping goes is to experiment with sleeping gradually more upright to see what angle your back will tolerate? Sometimes propping the whole head end of the bed can help and maybe that’s better for your back, or a couple of pillows under the mattress to raise that up a bit?
Some members have been prescribed blood thinners which can help with the IJV compression symptoms until they’ve had surgery, (like Plavix, Brillinta, Eliquis, Xarelto, Diamox) whether that’s possible when you have a brain cavernoma at all? There’s info in the Newbies Guide Section about the meds and about supplements here:
and a discussion about other coping strategies:
Coping mechanisms for jugular compression - General - Living with Eagle
Long term it can affect cognition, here’s a link to a research article Dr Aghayev who treats IJV compression in Turkey has published:
My concern would be for you if you have a cavernoma, could the increased head pressure affect that? As in if there’s a tendency towards weakness of the blood vessels, and the blood can’t drain through the IJVs as it should, could it back up through the venous system in the brain & cause a leak? I don’t know if that’s possible, I can’t recall anyone mentioning having this before, but it might be something to ask your Neuro about?
Do you notice the head pressure getting worse when you work out in the gym? I had noticeably increased head pressure and vascular symptoms when I did alot of cycling, I presumed that the increased blood flow and blood pressure with exercise added to the head pressure- might be worth easing off on the gym sessions and seeing if that makes a difference too?
Who have you seen for a diagnosis & are waiting for surgery with? If you’re able to travel, some of the VES doctors that members have seen have shorter waiting times… Dr Nakaji in AZ, Dr Costantino in NY, Dr Lui in NJ, Dr Cognetti in PA for example. We’ve also just heard of another team; Dr. Srinivasan (neuro) & Dr. Brody (ENT) in PA as well.
I hope you can work something out to help with the head pressure and your bad back 