Welcome, @Andal ! I’m sorry your symptoms are so severe, but you are in good company here as we have & have had quite a few members with extremely severe symptoms. The best things you can do to help reduce your symptoms are to sleep w/ your head & shoulders elevated at night & when resting. Ice your neck to help relieve inflammation - 15 min every couple of hours w/ a thin cloth between your skin & the ice pack. If icing makes symptoms worse, then try heat. Try to avoid the head position that makes your symptoms flare. If you can get an Rx for a blood thinner such as Plavix, Xarelto or Brillinta, taking a blood thinner may help reduce your head pressure symptoms. Some of the vascular ES doctors on our Doctors List prescribe a blood thinner for their patients to take while they await surgery.
The symptoms you have are typical of IJV compression & indeed that seems to be at least part of the cause of your symptoms as @TML has pointed out.
Here’s a link to a discussion that will give you some good information about ES symptoms:
If you’re seeing a local ENT, it’s likely you won’t get much help for your situation. With vascular ES, it’s critical for you to see a surgeon who does IJV decompression along with a styloidectomy (or removal of calcified s-h ligaments). The doctors you could consider are Dr. Nakaji in Scottsdale, AZ, or Dr. Hepworth in Denver, CO. Dr. Damrose in Palo Alto, CA, also does decompression surgeries but has less experience with them.