I noticed after I reduced my intracranial pressure with Diamox, that after about 1-2 months, I just didn’t need the collar much any more. Are you on any medications yet? Diamox? Mast cell treatment? Can you get some help getting to the doctor?
I don’t have anyone to help me get to the doc. No contact with my family, not married & lost my friends due to depression/not functioning and not calling people back. I had about 3 hours of no neck pain the other day and I managed to go out and fax a letter to my Rheumatologist requesting that he read The Driscoll Theory Part 2. I have made it this far by myself…I will just have to suffer through it until my symptoms subside enough that I am able to get help. Once that happens, I can follow up with that doctor to see if he will read it or prescribe Diamox, H1 & H2. Dr. D, I am 100% convinced that the EDS is causing my PTSD, as per your theory. I know you did not specifically mention PTSD, but I believe it would fall within Mental Illnesses under Conditions Resulting from Poor Vagus Nerve Function (and CCSVI)in your Theory. I have gone through periods (even if only for a few hours) where I have no neck pain and thus no symptoms. When my neck is not sore and there is no pressure in my head, I do NOT have PTSD (and I do not have all the other symptoms like POTS, depression, etc) and I can function. Perhaps people’s personal life experiences contribute to how symptoms manifest. For instance, traumatic childhood=PTSD, positive up-bringing=high achiever, etc.? Thanks for your help. MJ