Ann,
So glad you found us, but so sad that you had the need.
Just curious, but what kind of specialist did you see?
The bad news is that you have been diagnosed with CH. The good news is that finding this site is a great starting point in the long road that is probably, but not necessarily
ahead of you.
I think that most here will tell you that with this disease, it is of utmost importance to advocate for yourself, since the medical community worldwide, for the most part, is woefully uneducated, and thus inept at treating CH.
Please read, read, read. The best place I can recommend you start is The Clusterbuster Files. Click on the "Forum Jump" menu at the bottom right side of this page. Under the General Category" click "CluserBuster Files".
Stay in touch and ask any question, no matter what it is. There are no stupid questions.
We're here for you,
Bob