Thank- you for your reply. I have been pushing for so long to finally get a diagnosis and find the right docs that I thought that part was over. Your answer is what I needed to hear...time to start standing up for what I believe is right.

I hope your stimulator trial helps you. My youngest daughter had an occipital nerve stimulator implant when she was 13 years old. The stimulator brought her headaches down from a near constant 8-9 to a 2-3 and enabled her to return to school. (She has POTS and now we now EDS) The only problem was the battery life was supposed to last 5 years, but she used her stimulator constantly and the battery ran out in 18 months. .

My daughter is now is high school and will have a new stimulator with a rechargeable battery inserted this summer. I hope you can find the same kind of success (without the battery issue!). Medtronic told my daughter to turn it off as much as possible - especially at night but getting through to a 13 year old is difficult.

Good luck to you and thank you!