As you know, I've been  working with Fox news about an informational segment on clusters. Between hits, I've been doing a LOT of searching between surfing, posting, and emailing. There is so much repeated old info out there, and as you may or may not know, ANY type of media is going to be very limited in time they have for discussing any issue. So, I'm going to include a couple good resources I've found and gotten permission to use, but the only way to make this more beneficial for immediate relief etc., I've found for this segment to be as successful as possible and still stay within a short time frame, we should focus on putting together (especially for chronic and more severe ongoing cases), a list of the biggest, most important concerns about CHs to be presented to the specialist they find, rather than have him/her just take up a few minutes speaking on topics and unhelpful facts we already know. So please add to the list (please don't repeat if anything is already there), what you think should be the most important questions answered and the most important facts you think should be covered/unveiled.
The only reason I'm more concerned about chronic and severe cases is because they are foremost the most important people seeking immediate relief, and chances are, if it helps the chronic, anything covered, chances are, will also help the episodic and less serious sufferers.
So please let me know so I can get this out with the other information to Angela, by Friday, May 22nd, by 4am.
Thanks, and please rethread so it comes up as a new topic and stays on top for a while.
I'll start. Please change if you think there's something more serious.
Have a good morning and I hope you have a PFD! I'm off to the neuro.

1. More awareness of the use of O2 to abort.
2. A short clip of a real hit taking place, to show the true pain.
3.

Steve,


If Chuck hasn't already given you this link...here it is.

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Ya Linda, I saw it a while ago. Actually, I think that's how I found this site. And I saw the entire thing and got permission from Justin yesterday about using it with the other information for Fox.
Thanks.
Steve

Steve,
   Maybe the segment could also say something about how many doctors dont understand much about CH, and how sometimes they seem to morph, and treatments that work later stop working, and how something that doesnt help now may help later.  All in all, it should mention how painful they are and try to get that m"essage across loud and clear.  How the pain is  unlike anything ever imagined by  anyone else.  Oh and comparing it to childbirth is really getting old.  Childbirth is a breeze,  I would rather have a baby every day,  not even in the same league.  There is nothing to compare it to, and also that even when the HA "goes away "  how we are all left with underlying shadows of pain that really never go away.  I try to tell my husband,  I am sorry if I am cranky, but how what kind of mood would you be in after having a headache for over a year that never went away, but would only flare up to unbearable levels a couple of times a night, then settle back down.  but never go away .

If you really get gutsy, you could mention clusterbusting, and how unconventional methods seem to help many many people.

Chris

Chris - Steve hasn't been here in over 19 hours. Either he got an extension from the good folks at Fox News, or he ain't comin' back.

It's been awhile since I posted my little technique. Sorry I haven't kept up. Here goes kids and I hope you all give it a try. It works for some.

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck

Charlie      [/size]

I may have learned something with similar results, different method. While I was at Diamond Headache Clinic they taught us biofeedback, which to me is similar to self hypnosis. After learning some of the relaxation techniques they taught us that if we could raise the temp in our hands we could reduce the pain. They used this mostly for migraine patients (I have had some issues with migraines since being a teen, so they let me do the biofeedback). We did do focus and visual exercises to try and make it happen. We had thermometers in our hands to measure the change. Since I had previously learned self hypnosis with my wife, who used it for childbirth, it seemed easier to learn. I was able to raise the temp at my hands a couple degrees F. It helped with some of the lesser pain. However if it was close to the time my CH attacks would come, it seemed that the relaxation would bring about a CH attacks which my teacher had never seen first hand. She suggested to the Dr that I didn't come back for the biofeedback if it in any way precipitated a CH. She said it really upset her the first time she saw a full blown CH attack. The Dr. just changed the time of my lesson and I only got 1 more attack during the lesson in the next 3 weeks.  Anyway, I wander if it did in fact increase my circulation to cause the raise in temp? I just could not focus enough during a CH attack to help much until the pain went down to about a 6 KIP. Interesting Info Thanks MikeS