My daughter, who has EDS and POTS, has constant neck tightness and knots and pain. I have a question about my other daughter, who most likely does not have EDS. She developed neck pain at about age 14, which is the same age my older daughter started showing all her POTS symptoms. This pain never goes away. She has had xrays, MRIs, ultrsounds, chiropractic care and physical therapy…nothing has helped. I am actually starting to wonder if my daughter could have some very mild form of EDS that isn’t that noticable. She has also has some stomach issues and hip issues like my other daughter, but does not have the stretchy skin that her sister does. We don’t have any idea how to help her neck pain. I have a hard time accepting that an otherwise perfectly healthy teenager would have neck pain for no apparent reason. She never had any type of injury. I am intersted to hear your theory Diana :-).
I LOVE this question! I have also seen EDS families, with one or two members that are NOT diagnosed with EDS (not flexible), but they develop hydrocephalus and dysautonomia. I believe that both conditions are secondary to our lousy veins, and I would bet my left arm (my “good arm”), that your daughter would respond to Diamox. And I’d throw in mast cell treatment, just to cover the basics! Let us know? 🙂 Diana