Posted by drummer (209.105.134.199) on August 28, 1999 at 14:59:32:
In Reply to: Understanding the pain of clusters written by Drummer ! posted by Elaine on August 28, 1999 at 14:08:55:
HEY! You’re not supposed to post private E-mails on the internet! Well? What the hell? If it might help one Cluster Headache sufferer explain to a non-sufferer the pain of a Cluster attack: Here’s the whole letter:
Dear Elaine, Buddy, Heather and Family,
You guys have picked an outstanding Neurologist. He sounds like he cares and that he knows what he is doing. Wonderful. Elaine; talking to you today was also wonderful. I am so happy that you and your family and your doctor know that you are normal. Buddy, Heather and family you are very compassionate, loving, caring and understanding people.
Elaine now has various tools to help her fight the Demon in her head. Elaine does not have headaches. Elaine has a Demon in her head that tortures her relentlessly. The pain is very difficult to describe. Elaine's head does not throb like a normal headache. The pain that Elaine feels goes through, not only her head, but through her nose, lower jaw and eye.
Pretend that 5 people come at Elaine with rusty barbed wire, needles, ice picks, hot pokers and tweezers. Pretend that you can't see these 5 people. Pretend that you can not touch these 5 people. Pretend that these 5 people take their tools of destruction and they stab and poke and pull and scrape at Elaine's gums, eye, nose and head. Pretend that Elaine can not do anything about these 5 people. All Elaine knows is that when it starts it won't end for an hour or two. Pretend that when these 5 evil people are done torturing Elaine that they simply leave and whisper to Elaine that they will be back.
Pretend that this is real. Elaine knows this is real. I know that this is real. Buddy, Heather and Family; I hope you never know how real this pain is. Only Elaine and I know this torture. Elaine and I have done nothing to deserve this torture.
Elaine now has hope for less pain thanks to Buddy, Heather, Family and her doctor. This hope will not take the pain away immediately. The Calan SR may take a week to lessen the attacks. The Oxygen and Imitrex will only shorten the attack if it is administered immediately.
I mentioned that Elaine does not deserve this torture. All of you know that is true. Elaine was not crazy when she hurt herself. Elaine was mad at the fact that she is being tortured.
OK. If there are any kids in the room please ask them to leave. I'm about to change. I'm going to change from a normal guy into a guy who is about to be tortured. From compassionate to inconsiderate. From happy and nice and funny to mean, rotten and evil. Ready????
"Laurie get me my FUCKING Ercaf NOW!!!!!!.......Where the FUCK is my oxygen?????......Get the kids and get the FUCK away from me NOW!!!!!!!!!!"...............Now I am alone and rocking and moaning and begging for God to kill me. I have even gone so far as saying...."GOD!!!!!! WHY THE FUCK ARE YOU DOING THIS TO ME!!!!!!!!!!!!!!.......Hang on folks it's only been 5 minutes. I still have 55 more minutes to go............"LAURIE!!!!!, LAURIE!!!!!!!, GET A FUCKING GUN AND SHOOT ME!!!!!!!!!!!..........Laurie stays in her room with the kids. She probably knows that if she comes down stairs that her husband is a bit less than loving. I am embarrassed, frustrated and in soooooo much pain.
Only Elaine knows how much pain I am in. Elaine knows that I must be left alone. Elaine knows the rage that I feel. Elaine knows the depression that will follow this attack..........OK all done with my cluster attack.
My wife and kids come back down stairs. My 6-year-old daughter looks at me as if I am a monster. She asks if I'm "grumpy". She asks why I get like this because of a headache. She tells me that Jim, our neighbor, doesn't do this when he has a headache. She asks me why she doesn't have a regular daddy. All I can do is look at her and tell her that I'm tired. That I love her. And that I am sorry.