Do you think it's stupid that this disease isn't well known? I sure as hell never heard of it. And it's one of the MOST PAINFUL THINGS EVER!

Isn't it time by now that the doctors or whatever started investgating this very seriously and really really work hard to making a cure? Because from (the little) I read, I got the impression that this is kinda overlooked by most people and doctors. Am I right or not? Is enough being done, what is your take? Or do you think that the reason there is no cure yet is because it's hard to figure out, or is it because there are not many people working at it, or working hard enough to find it?

Or did I get the wrong impression and this is relativly a well known and studied disease?

Through this board and OUCH, we have come a long way towards educating both the public, and the medical field. We have 2 tough barriers to work against, it is a relatively rare ailment, and it doesn't kill you. The fact that there are so few of us makes it a less then ideal risk for pharmaceutical companies to work very hard at discovering meds as there is no payoff like there is for a Viagra or Cialis! ;D ;D

On the other hand we've made progress with oxygen supply companies, on a smaller scale, who are now custom designing gear specifically geared towards CH. Not giant steps but lots of little ones! We have people like Doctor Goadsby in the US and Dr. Matharu in London who are actively pursuing treatments for our condition. Both came and spoke at our recent OUCH convention.

32 years ago my treatment plan consisted of 4% lidocaine drops, snorted up the affected sides nostril, oral cafregot, and narcotic pain meds. When you look at what's available to us now, Imitrex, Oxygen, our preventative meds, we've made some great strides.

If you haven't already, check out    clusterbusters.com      some alternative treatemnts pioneered by people on this board, that are turning out some great success stories.

Joe

I'm not sure if it's just me being cynical, but I would think that CHs would be a lot better known if there were a few celebrities who got CHs and talked about this. Just think about the publicity for Parkinson's from Michael J Fox and Christopher Reeve with spinal cord injuries.

Great answer, Joe. I was thinking exactly the same thing. And Mike, I agree. I don't think it's cynical at all. Rather, I think until there is a high profile personality involved, progress will continue only while we keep the pressure on "friendly" doctors and companies. lance