Posted by Dave Emond on November 17, 2001 at 03:32:47:
In Reply to: newby and i am at the end of my rope PAIN !!! posted by loaded on November 16, 2001 at 23:59:49:
... Many of us have been where you are now, more than once too. You've made the first right move by coming here to talk about it. I've never found a prevenative that works for me either. But, that doesn't mean all is lost.
Since medications don't work for me, I've had to find other ways to deal with the pain of CH.
Because I understand where you're at now, I'm going to go ahead and for the first time relate how I'm able to deal with CH. I've turned chronic over the last year, and needed to do something.
First, I had to work on my attitude ... to fight!
The pain is the biggest problem, but along with that comes anger, depression, guilt and all kinds of moods. I could never get Charlie's method quite down, but do something similair. I set myelf up a list of steps and use them EVERY time I get an attack, no matter what level. Each step takes much practice and must be done every attack. You can start out one step at a time as I had to.
First Step: Do not injure myself to divert pain. This took a while before I could keep from banging my head on something, or other methods, but eventually I got past that.
Second Step: No rolling on the floor, walking on my head, or screaming. Yep, CH could turn me into a quivering mass, I am not ashamed to admit it.
Third Step: Let go of anger. This is much harder than it sounds, but you must divert your attention away from anger. The more anger you dwell on, the worse the attack.
Fourth Step: No depression or guilt. Yes, this can be even harder than the other steps, because we haven't taken away the pain, it will still be there. And, just when you think things are getting better, that's when the Beast likes to hit again hard, and it's tough to accept this, and one can feel like it's time to throw in the towel. But, you've got to not let depression set in, it can dig deep.
(Now, just these 4 steps takes much time and effort. If you apply them to every attack, especially the lower level ones, your brain will start to adjust to these practices out of instinct, since we don't have much control during an attack, we're teaching the brain how to react on it's own during our pain. Now if you can get this far, on to the big steps!)
Fifth Step: No grabbing and squeezing the head. No ice packs, no heat bags, etc. Whoa! Did he just say that!? Yes! Extremely hard! But, it can be done (considering you've practiced the other steps EVERY attack). You can gently place your hand over the area of pain, but if you have the strength, try not to.
Sixth Step: No pacing ... sit down. Bear with me please, this is NOT impossible. We've been practicing the other steps for quite a while now and are ready to start taking control. Yes, pain is still there.
Seventh Step: Accept the pain. What!? I said, accept the pain. We've already been practicing the other steps and teaching our brain and body how to react when we're in too much pain to think clearly for ourselves. For me, I do this by trying to get through my attacks without anyone knowing the pain I'm feeling. I'm trying to accept and control it. Of course, close supporters will see evidence of the attack through symptoms like the droopy eye, the heavy thick veins, the red blotch moving about the face, etc. But we seek no pity, and wish not to cause our supporters feelings of helplessness. So I play it down, see if I can go through an attack without anyone noticing.
I could get a lot of criticism for posting these methods, but I don't care, they are helping. And if it can help you or someone else cope, all the better.
In summary, my method is this: I believe that we can train our brains and body on how to react to the pain of CH. The best time to practice these steps is during low level attacks and EVERY one. Over time, the brain will start doing these steps automatically. The pain will not go away, but we preceive it differently. Which leads to attitude.
Attitude will become the key to making this work. Each step we conquor, we gain a bit more strength and our attitude grows. Our self esteem grows, and our quest to fight grows. Some may call it tolerance, fine, doesn't matter what you call it if you find a way to accept and cope with this otherwise unimaginable pain. Find your diversions, what helps take your mind off the pain. Don't say there aren't any, there is something, but you may not find it until you've gone through practicing these steps with fullest intentions of beating this Beast.
I have about 2 heavy attacks everyday, and several smaller ones. Still to this day I have to focus on these steps, not so much the first ones, I no longer divert pain with pain, I sit as calmly as possible, I do not get angry, I do not get depressed, but instead accept the pain, understand it will pass, and chalk one up on the board for my own self esteem each time I take the Beast head on and defeat him in at least this much of a way. I hope you find it in yourself to fight, by this means or maybe another. But coping is all about attitude, no one can tell me different on that. Hope you find your relief, e-mail if you wish to talk, post your screen name up so others can write you (and they will) and here's hoping you find many pain free days ahead.
The Floor is now open for critque! : )
Dave