Just adding my experience (as I wait for it to arrive)

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Posted by Bruce Wayne ( on October 14, 2000 at 03:16:51:

I'm 35 and I'm a CH sufferer. I get about 1-3 episodes a day for about a month every other year. All in all, I've probably got very little to complain about in this crowd. But compared to your average person on the street, I'm been condemned to hell. I've had these for about 12 years. So much for them going away after 30 (which is what I was originally told).

I've tried oxygen (used to prevent), ergo something (didn't work), clozapine (nothing),imitrex (nasty, nasty stuff, didn't help), maxxalt (could work, can't really tell), vicodin (helps, but it takes 20-30 minutes to work), cold air (used to help some, not anymore), crying (doesn't help, but I still do it) and finally.... demerol. Demerol works. It doesn't prevent anything but you no longer feel anything and that serves as a satisfactory alternative. I inject between 1/2 and 1ml at a time - hopefully no more than 2 ml in a 24 hour period.

I have pretty much written off trying to get them to stop or trying to head them off so I have gone to a completed response oriented strategy. If it starts, I hit the needle and count the minutes until I feel the dope kick in. That usually takes between 7 and 12 minutes. If I inject it into my thigh and them pump the muscle non-stop I can usually keep it closer to 7 minutes before I start getting some relief. But even with a narcotic this heavy, I can still feel that the pressure and the pain is still there right under the surface. But when you are in the middle of the fight, feeling nothing is pretty much a gift from God.

I developed my own pain scale. I use it as a means of determining how bad the pain is and how close I am to being done with each episode. Here's mine:

0 - anything and everything which is not a headache
1 - mild, dull pain. Its either starting or its a
ghost headache from the last episode.
2 - definite pain, you are having a CH; too bad for you
3 - pain is now strong enough that you can't do
anything else because it is occupying your brain.
Light hurts, you are holding your head and you
know you are screwed.
4 - pain is such that you can no longer remain silent
you can't see out of one or more eyes.
5 - you are now in enough pain to pacing, gyrating,
rocking, etc. You are praying to God but you know
he ain't coming. You are defintely screwed.
6 - you can cry now; curse God; shop for a new diety;
you are no longer worried about the pain, you are
scared. That you are screwed is already obvious.
7 - Normal people would be begging for morphine. You
no longer speak in complete, comprehensive
sentences and you can't be still
8 - crying/screaming is not optional; brain tumors are
less painful.
9 - you actually think you will explode/implode. Not
possible to remain quiet or still. Begging to be
killed starts at 9.
10- pain is so incredibly intense you are screaming
uncontrollably; if you could end it all, you would
try it here. Involuntary body movement, one or
two word sentences at best (usually at high volume)

I try not to get to 10 more than once a day (like I really have any say over it). Two 10's in one day and I give up the will to fight for a while. Even getting to 5 after going through a 10 recently is more than I can mentally handle. Just the mental exhaustion from going to 10 takes hours to recover from.

In my case, the average episode gets to 7. Every third one gets to 10.

Well, its 12:30 am my time. I'm about due. Gonna go get my drugs lined up.

Bruce Wayne
Las Vegas, NV

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