Some more thoughts....

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Posted by Bob Johnson ( on February 12, 2000 at 13:13:04:

In Reply to: In mind posted by ADS on February 11, 2000 at 14:03:56:

Your reply, "in mind", prompts some reflection on the impact of our emotional reactions and habits of thinking as they affect how we live with CH. Feelings of isolation and not being understood are a frequent theme in the messages you will read here. The idea that you have been "scorned" is powerful and, if accurate, tells you something about the other person! Consider, however, that you may have chosen the wrong word: could the other person be afraid of what they are seeing in your pain?; might they be confused and are withdrawing out of anxiety/fear?; might they want to help but not know how to? When we are in severe pain our own perceptions of the world are altered so that some distortion creeps into the picture--for us. For your own benefit why don't you ask these folks what has been their reaction to seeing your pain? Ask after you've recovered and they can see that you are O.K.

Your observation about the loss of ability to accurately see what is happening to you during an attack reinforces these ideas. But you do have support in the medical literature which reports these kinds of confusion and memory holes, i.e., you're not nuts! I suspect this reaction arises from the strong fear which an attack triggers: all intense emotions work to block accurate perception and balanced action.

You're observation about the psychological component of CH is on target. Intense pain induces fear and, when chronic, often leads to depression. The regularity of CH can also induce "anticipatory anxiety"--a state of anxious arousal as we wait for the next attack. This reaction works, however, to increase the pain, likely serves as a trigger for some attacks, and reduces our capacity to work with/go through/cope with the attack.

The experience in the mine accident points to another aspect of how we respond to pain: the quality of pain and it's location has a powerful effect on how we experience it.

Reducing the fear/anxiety level around CH is critical. Majors roads to this goal are:

1. Finding a doctor who you trust as being knowledgeable and on your side. If you have any doubts now, consider calling the National Headache Foundation at 1/888/NHF-5552. They will send you a list of doc, by state, who have identified themselves as experienced and interested in working with headache. (If you read many messages here you'll see that poor quality docs are a major issue.)
2. Read messages here to see what works for people. Unfortunately, there is a lack of consistency and you will have to try different techniques to see what helps you. Oxygen works well for many; others like hot showers, others cold showers; some this medication, others something quite different. I've found that an ice pack on the nap of my neck will abort an attack if I start at the first sign; for others, cold increases the pain. The point is, find something which works for you and you will reduce your fear and anticipatory anxiety: having a conviction that you have some control will give you increased comfort.
3. Train your mind and body in one of the many forms of relaxation. This will not prevent CH but it will help you cope. (See a series of messages posted August 31, 1999, "cognitive therapy".) A good book which focus on both medical treatments and on relaxation is, "Taking Control of Your Headaches", Paul N. Duckro, about $15 at (While you are in amazon, look for Seymour Diamond's latest edition on treating headaches. He is one of the old war horses in the field.)

Your question about how to explain your experience to your wife and doc: ask your wife what she needs to know and follow her lead. Docs are harder to educate! If you have someone experienced in headache he will know; if not, print out some of the medical material and personal experiences which you will find via the links on the left margin of this page and give to the doc. It's not hard to find stories of lost jobs, divorce, and suicidal urges which convey the problem of CH.

It is critical that you stop seeing yourself as a victim! (I guess I write that for all of us.)

Stay in touch; you will find a lot of help and support here.

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