Sleeping and head pressure - what do you do?

General
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Hi, I am fairly new to all of this (the last yr) and I’ve been sleeping with a cervical pillow that has a curve sized to my neck. Back in May, an angiogram showed complete compression of jugular when I move my head to the left or right. I sleep on my back 90% of the time and try not to move much although I know my head falls to the left or right off and on all night long.

Fast forward to yesterday morning, I woke up with what felt like a gallon of fluid jostling around in the top of my head. The pressure was awful. I’ve woken up most mornings with pressure that subsides after I am upright for 15-20 minutes (for the most part). Yesterday, it seemed to not drain at all but felt like it was just sloshing around in my head, particularly on my left where my styloid process is over 6cm and causing a lot of inflammation. I had tinnitus on that side when I moved my head (don’t usually have tinnitus). I started feeling nauseated, the pressure was so bad, so I laid back down again thinking it would go away (this has helped some in the past) but now my head felt severely bruised and hurt to lie on the pillow. After 2.5 hrs I called my neurologist who told me to go to the nearest ER. 8 hrs later, another CT with & without contrast, then an MRI with & without contrast & I got the same answers, nothing abnormal except my cavernoma’s but they weren’t bleeding, follow up with doctor.

Even putting my head in the foam crate on the CT had me crying because the pain was so horrific. By the time the MRI rolled around, they gave me Ativan & all was okay.

Last night I slept propped up and woke up with zero head pressure back & a horrible aching back. I can not sleep at an angle and have back pain (I even go to the gym 4-5 times a week). How do you guys sleep? What do you do to make this better until you can get surgery? It may be a year before that happens and I need sleep! My oldest daughter asked me if there are long term effects of the blood not draining out of my head. I told her I had no idea. I’m certain there are wiser, more researched people in this group than me. Please help! Thanks in advance!

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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:

ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle

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:

AGHAYEV (2026) - Review: Jugular Vein Compresion and Dementia - Emerging Evidence - General / Research Papers - Living with Eagle

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 :hugs:

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