Posted by anonymous on March 25, 1999 at 18:45:48:
In Reply to: Help! Need encouragement/advice...... posted by anonymous on March 25, 1999 at 07:00:19:
Thank you, each and every one of you for your advice and encouragement. I KNOW I will never be able to have any idea what CHs feel like, let alone what they do to you day after day, week after week...fortunately she has an appointment with a neurologist who (supposedly) works with CH patients. Through much cajoling and multiple phone calls I was able to get them to move her appointment from late April(!). I seriously wonder who even among Drs./Neurologists/etc. even understand the severity and seriousness of these headaches. Oh, and after numerous calls to numerous neurologists, I realize that even THEIR staff doesn't necessarily know what CH are all about. One woman told me "oh, they're like migraines, aren't they?" and another said "I know what they are like...I had them ONE time over a weekend"!
It is ASTOUNDINGLY frustrating how little research is really being done and how few books there are--most are generic headache books published 10 or more years ago that only make at most a 6 or 7 page reference to CH. I have not yet convinced her to log in and write messages herself, but on the day we found this website we sat and read and read for 45 minutes, both of us crying as we could feel the emotion in some of the letters. I am so thankful that you are here...you have given me the encouragement and advice I need to know the right thing to do. She is a wonderful woman, and like all of you, wonders just why something can't be done to end this needless suffering.
My prayers go out to you all...