Hi MJ,
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