I too have this a alot and find myself massaging the area all the time. I would say this symptom for me is present at least at a minimum of 65% of the time, varying in severity, etc. I also have a feeling of a burning, acid-like, yet tingly pain on the inside of my neck, at the base of the skull, where it meets the neck, but it feels as if it’s on the inside of my spinal cord, as in, it’s an inside pain, not pain from the outside. The burning feeling is the most prominent feeling and the most bothersome.
thanks for the question!
~tennille
Perfect description, Tennille! I believe the hydrocephalus starts the head/neck pain and the mast cells (and inflammation) kicking out certain inflammatory cytokines (and interleukins) causes the pain. A combination of my soft cervical collar at night, Diamox, mast cell meds and keeping my inflammation down (eating the right foods, etc), keeps the majority of it at bay. Praise God! I had gotten to the point where I couldn’t even hold up my own head, nor could I turn my head without feeling like I was passing out. That’s a horrible place to be, as most of you know… 🙂 Diana