Posted by Kenn (152.163.204.56) on February 22, 2000 at 14:40:43:
I met a man at Oregon Health Sciences University (OHSU) in Portland who told me a horror story. Think of this:
He is now 51 years old and in his twenty-first year as a Clusterhead. In 1979, he was injured and ended up a quadraplegic, unable to move any part of his body and could not communicate except by blinking his eyes. They did learn that he was in pain, but somehow they could not understand why his heart rate went up and down so much and why the pain meds they began giving him didn't seem to help.
His wife and most of his family deserted him one at a time and he was eventually placed in a care center.
Last year, he underwent a procedure which gave him the ability to speak with electronic assistance, and he began to tell a story in which scared the hell out of me...twenty years of constant, increasingly severe cluster headaches while forced to lay still and take it -- no effective pain relief, no one to tell, no one who knew or understood. They knew he was in pain but they had no idea just what kind of torture he was undergoing. They decided he was being just crabby and feeling sorry for himself when he squinted his eyes and cried and they gradually gave up trying to figure it out. He lived with Cluster headaches all that time and tried every way he could to stop his own heart and die.
He said that for the past several years they have been chronic, and regularly reach ten on anybody's scale.
I don't know why I tell you this...Maybe because I am such a wimp when it comes to my own CH's and just needed a lesson in humility.
I'm thankful that I can get up, take my oxygen or pills or a nice, hot shower and go do my little dance in the back room.
I'm thankful that I have a family that understands and which has learned along with me how to handle it.
I'm thankful that I can sit at my computer and feel connected to so many others who not only understand but who are supportive and provide humor and helpful advice.
And I pray that someday there will be no need for this message board other than to share happiness, peace and good times.
In case I haven't said it before...Thanks to you all.