Posted by Dennis O'C (220.127.116.11) on March 26, 2000 at 01:34:22:
I not in control
and that scares me.
Now that I have gone to all the links at this site, chatted and read this board every day for a very long time I realize to some extent why some people explode, flame, leave or rant in frustration. I also understand to a small degree the plight of Docs and researchers dealing with or refusing to deal with CH.
I want Clusterheadaches to be something that conforms to some rules...that way I can understand it...and...feel in control.
I want to know that a CH lasts 1 hour or 3 hours or 18 hours. I need a rule of thumb so that I can say “that is a CH or that is not a CH”.
I want to know that there are triggers and that these triggers are the same for everyone, or at least... one be the same for everyone or at the very least be able to identify my triggers and have them stay the same and always be...my triggers.
I want there to be precursors, warnings. And I want these warnings to precede every CH and never be false alarms.
Since I am episodic, I don’t want it to be possible that I become chronic.
I want to be able to identify lifestyle characteristics that makes one likely or less likely to have CH.
I want substances that prevent and substances that abort CH’s...if not for everybody...at very least know that they will work the same for someone tomorrow.
The lack of assurance of any of these things puts Clusterheadaches in a class of things which are uncontrollable...and that scares me.
Today I can say my CH is “manageable”..largely due to information from this site. But it’s knowing that the rules for tomorrow’s CH may change drastically that scares me.
Other than saying that CH pain can reach a threshold which rivals the worst physical pain man can feel...the other “rules” we impose on CH are educated guesses at best which give some a feeling of control. It seems to help keep the boogie man away... but creates predudices, factions, islands.
I am not in control...and that frees me also.
Walk in the sunshine
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