I started a facebook page for support of those of us with rare headache disorders!
The address is: http://www.facebook.com/RareHeadacheDisordersSupportGroup
I am in the process of writing a book about my experience with all of the pain these headaches cause in every area of life and how now my life is a shadow of what it once was. I would love to tell a lie right here and say everything is fine,but it isn't fine and I am not a liar. I am not good at it! So: My neurostimulator is no longer working at full capacity and I am currently disabled and penniless. I know that if given the chance the DBS would work again and I could get my life back but without insurance and with the way the economy is, no one seems interested in helping me at all. So I thought I would start a support group and at least help some folks on there.
If you are suffering, go to the facebook page and check it out. It is pretty good if I do say so myself and you can find out a lot of info and perhaps be a bit better prepared to see your doctor. I suggest looking at the links on the left of the page and clicking on it to find the various headache diaries you can download and use to help your doctor help you.
Thanks,
Kris
