Posted by Todd Owen (152.163.206.201) on February 22, 2000 at 23:18:41:
In Reply to: Why? posted by Todd on February 22, 2000 at 22:06:16:
Todd,
There is one thing in this world I hate above all others. It is that I am a clusterhead. I don't post here often because I find little to offer in terms of support or guidance to others. All I can say to others is that I understand what you are going through.
I have received untold numbers of suggestions and pounds of useless advice on how to beat the clusters. I am sure you know as well as I do what has worked so far. Time is the only thing that has beat these things. Typically a cluster episode for me will last from four to five months. No meds seem to have worked yet other than the occasional painkiller to return my life to some semblance of normalcy.
Try all these different things for beating my clusters? I'm just about willing to. I have tried almost all remedies offered to me. I think the only one I haven't tried is rapid intercranial injection of a few grams of lead. Though I will admit that one has been an option I have considered many times over.
How do we manage to cope with such horrendous pain day after day? How do our families learn to live with not just us, but the beast that inhabits our daily lives?
What do you tell your seven year old daughter when she tells you, "Daddy, your headaches scare me"?
I don't blame you for wanting to bring a lot of this back to just clusters. Take any remedy left on the board with a grain of salt. Do realize some of these are meant to help us. I wasn't diagnosed with clusters until I found better descriptions of the disorder and took them into my doctor. Had to go through multiple neuros to get one who had a clue on what to do and try to beat the clusters. Been told by some people here on the board that I may have been confused about when I was having a cluster versus a migraine. After that much pain the lines get blurred.
I still understand what being a clusterhead is. It is the horrendous pain that makes you wish you were dead or dying--when the doctor tells you that you're not going to die, it's no comfort. It's the hours spent awake in the middle of the night, begging for the pain to stop so you can sleep. It is the crying, the screaming, the looks of pity from family, friends and coworkers while they try to fathom what you are undergoing.
It's the look on your seven-year-old daughters face as she bends over to kiss you and tell you she loves you, even as you writhe in agony through another attack.
Todd Owen