Welcome! Thank you for sharing your story. I’m glad to know you’ve been proactively seeking appointments with the specialists who are most likely to be able to help you.
We’ve had a little trouble w/ Barrow doctors in the past in that the main one who does IJV decompressions has turned away several members who had extreme symptoms telling them they didn’t need surgery, & one he scheduled for surgery but when she got there for it, he cancelled the day before her surgery telling her she really didn’t need it after all. Having said that, we have a member who just reported today that he’s scheduled for IJV decompression surgery/styloidectomy at Barrow but doesn’t have a surgery date yet.
Manometry is measured via a catheter venogram which is an invasive procedure & can have some post op side effects. When you get scheduled, make sure to speak to the doctor about what to expect during & after the procedure so you’re prepared for the experience.
Deep breathing increases pressure in the lungs & abdomen on the inhale which impacts rate of blood flow. I suspect your breathing paradox has something to do w/ the increased internal pressure in your body during inhalations even though slow deep breathing stimulates the parasympathetic nervous system & ultimately helps with physical relaxation.
Your assumption may be correct but added to that is the possibility that your IJV is being compressed by local soft tissues when your head is in the most provocative position since the styloid actually moves away from it. The SCM & posterior digastric muscles are the muscles most often noted as contributing to IJV compression. Additionally, connective tissue, lymph nodes, other blood vessels, nerves or scar tissue can also contribute.
Sleeping with your head & shoulders elevated (you’ll have to experiment to see what degree of elevation works best) at night can be very helpful. Some people have found icing their necks helps, too. Ice for 15 min. every couple of hours if possible. Gel ice packs work well because they conform to the shape of the neck. Use a thin towel or cloth between ice pack & skin to prevent ice burns. If ice makes symptoms worse then try heat.
A few members have mentioned taking a muscle relaxer has been helpful for various ES symptoms & if part of your compression has a muscular basis then that might be helpful. Getting an Rx for a blood thinner has also helped some of our members who have IJV compression. There are several that have been mentioned on our forum & the 3 that come to my mind are Brilinta, Plavix, & Xarelto. Diamox is another medication that has helped some people.
I look forward to seeing your images.