Posted by Mark W. Fosbenner (209.37.191.201) on October 07, 1999 at 14:22:01:
I am sure to be spending alot of time here. I just posted the following to the guest book...
I have recently come across this wonderful site and have been attempting to organize my thoughts and maintain my composure enough to express how I feel right now. I am 28 years old and have been suffering (many with illnesses use that word, but how appropriate it is for us) through episodes of cluster headaches for a little over 10 years. My first experience with “the beast”, as many of you so aptly call it, occurred shortly after my 18th birthday in June 1989. (Although, my parents told me that as a young child I once had a series of severe headaches over a few days, where all I wanted to do was lay on the bed and thrash around beating my head.) I was “lucky” enough that I was referred to a neurologist who immediately identified my “migraines” as cluster headaches (Unfortunately, I did not go until I had gone through weeks of increasing intensity to KIP 10). I feel so terrible for those of you that had to deal with many years of misdiagnosis and skeptical people. I was given Sansert and the headaches disappeared in a matter of days. Since then it has been a come and go battle full of frustration, with my last episode being a little over a year ago. Even though most of the people in my life have been supportive, (mostly because they can see the beast reflected in my face as it comes and goes, and they are scared into attempting to realize my pain) it is quite a different experience to connect with others afflicted with the same misery that I know too well. For years I have known the statistics, read the research, and explained to others what CH is, but this experience is completely different. I have never been so emotional about my CH (except while in the middle of an episode). I always knew that I wasn’t alone, but I never had any personal contact. Reading all of your comments made me realize the power of empathy, not just the sympathy that I have always gotten, but it has also reminded me of my fear of the beast. After the episodes are gone for awhile, there comes that hope, a false hope, that the beast will not return, but I know that it will…..Someday…..