Posted by James (12.5.166.132) on January 08, 2000 at 23:19:40:
I've suffered and I do mean suffered for 17 years with clusters. For some reason, this year, Varapamil is working, or something is and I'm not having my usual severe attacks. Praise God for that, because I've certainly prayed enough.
I called my Doc the other day to report the good news and he was glad as he quickly brushed me off to get to other things.
I'm a 53 year old man. I've been successful in life, for the most part so I shouldn't be complaining, but...in this special year of no severe attacts I'm more angry...no MAD, than ever. I've just read below several post about how to cope with the pain and I felt sad and mad. Why do we as cluster heads have to figure out on our own how to cope with this monster? Most of us are working, tax paying, honest family people. We suffer in relative silence while the "normal" world worries about the homeless, the poor and any other politically correct problems in the world. I'm not saying the other things aren't important but if any one of the chiefs at a major network had clusters every politician in the country would be yelling for someone to do something.
I don't know about you but a cluster attack is as bad or worse than anything a prisoner of war has ever gone through and I'm including pulling out finger nails or what a homeless person faces every day. They give pain relief to cancer sufferers, don't they? At least you die with cancer. This crap(clusters)never ends. It goes on and on and every one but us does just fine. The drug companies make millions, the doctors get paid for using their sloppy hand writing, meanwhile people suffer a torture that anyone would find unbearable.
If Bill Clinton had these things their would have been a cure by now.
When my doctor brushed me off I felt like saying, "Hey jerk-face, you didn't have anything to do with my pain free days so don't relax. It's just an accident. I'll be back."
I've lost an average of 5 months out of every year for 17 years. That's 7 years of my life! Seven years of being sick, torturing the people I love, spending thousands of dollars that was wasted. I won't attempt to figure up the nights that my poor wife had to be disturbed and the hours she has spent worrying if this would be the night my heart exploded or I would kill myself.
It's time we stopped accepting what's being shoved down our throats and started demanding that someone do something. Don't dare spend one more dollar of my tax money sending a sack of garbage to mars before someone finds a cure for this hell.
What will it take to get some help?!! We've been suffering in silence tooooooo long. Get Angry!!