Posted by John B (204.17.44.183) on September 08, 2000 at 22:20:41:
If you are reading this, you probably either have cluster headaches or know someone who does. You know the score. Cluster headaches are a severe disorder. People who don't have them or don't have a family member or loved one who suffers just don't understand cluster headaches, do they? Many times, even our family or friends don't quite get it.
There is an organization that is trying to change this, the Organization for Understanding Cluster Headaches, or O.U.C.H. It is a new organization, just barely 105 members strong, and it needs your help.
I respect your decision not to join. We have all had negative experiences joining organizations. Yet since the dawn of civilization people have banded together to fight for a common cause. This is OUR cause, people; the one that hits OUR families where we live.
These headaches hurt like nothing else on earth. I want them to stop. I have the chronic variety; I have had not one day without the potential for an attack in over 11 years. It is only good medicine and constant attention that keeps me from having six or seven of these attacks during every day, and three of them to wake me up every night. I live in fear of losing health insurance and access to medication which, in America, is a very real fear. As of right now, I am on COBRA insurance.
I have lost two jobs in the last three years because employers and co-workers were absolutely freaked out when they saw me have an attack. The word gets around that these things are 'really wierd'. The owner of a company that I worked for for over 9 years told me that he was convinced that I could get "over them" if I changed my "lifestyle". No amount of talking would convince him otherwise.
Yes, it is very important to me to see the general public become educated about cluster headaches. There are only 105 members in our little organization today. It will take a lot more before we have the momentum and working committees and fire to do what organizations like MDA and March of Dimes have done, and maybe we will never achieve the level of those organizations, but we can try.
I don't understand your reluctance to join, but I would like to. Please write back and tell me why.