Posted by Cassandra on September 19, 1998 at 11:41:30:
In Reply to: www.oprah.com Oprah's website posted by Don M. on September 15, 1998 at 15:37:47:
What a wonderful idea! Here's my post:
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Hello, Oprah and Staff!
I am writing to ask for your support. In a concerted effort to bring the very real problem of headaches (namely cluster headaches) to the attention of the general public, a number of people whose lives have been devestatingly affected are emailing you to tell just a bit of their own personal trials in dealing with these headaches. We feel there just isn't enough information available, and too many of us - sufferers and family, are left feeling that we are the "only ones".
As you are probably already aware due to the scattering of emails you may have already received, there is a website that was formed in April by a gentleman known as DJ located at "clusterheadaches.com". For many of us, this website has been a Godsend because it has brought about a support system we can't find anywhere else. People from around the globe are leaving messages and sitting in on the chat sessions, trying to find THE cure or trick to stopping these headaches. Unfortunately, what works one episode may not work at all the next, and it is a constant battle with frustration and fear as we work our way through the list of medications that are dangerous to our health.
We are not asking for you to find us a cure - at this point there is not a clear definition as to what causes these to occur. (Suprisingly, there are even members of the medical community who have joined us at this website that also suffer from cluster headaches and are looking for answers.) What we are asking of you is to visit this website and read a bit of what a cluster headache is and how disabling it can be to both the individual and his/her family. Read some of the postings, particularly some of the pleas for help from family members wanting to know how to stop a loved one from committing suicide. One of these pleas was my own, on my mother's behalf, and it has helped... for now. The old adage may be true to take life as it comes, one day at a time, but for these people, it's living in fear of the cycle of pain and not knowing if they can survive to the next day because of the awful anticipation that comes with knowledge of pain.
My purpose is not to preach and I've gotten a bit off track of my intended purpose. If you would allow some of these people the opportunity to show you what a cluster headache is, and how important it is to us that it not be treated as a "headache" but a life-threatening (suicide) attack that keeps them from their loved ones, friends, work, and the world outside, we would be appreciative. The word "headache" has a stigma attached to it that makes it a non-legitimate health problem, and many healthcare providers don't acknowledge the significant impact it has on a formerly "productive" member of society.
Please visit the site and listen to the voices begging for help. Thank you for your time and attention.
Sincerely,
Cassandra L. Isetts (the daughter of an episodic Cluster Headache sufferer)