I read the 15 page survey that Came out and found some good stuff in it. These were doctors asking 180+ questions with 1k+ ch people. As a chronic sufferer for 30 years I don't care about what percentage had blue eyes or brown. Let's ask the questions that we all suffer from and make a data base to she what is working for all of us. Ex. Do you take lithium how many mg, o2 haw many liters per min. Let's ask the questions that we all experience. There are over 9000 of us on this site, i had know idea about red bull or mushrooms and much more. What if we could see that 85% that took red bull stopped a ch from coming on. I WOULD FILL OUT AS MUCH INFO IF IT COULD DIRECT ANYONE WITH POSITIVE RELEIF.

At the Atlanta OUCH convention years ago, our friend John from the UK said that our numbers were our strength.  We could supply info not obtainable elsewhere.  He was right and you are right.  In the past I had doctors tell me the surveys were the most useful info they saw on the OUCH website.

Surveys need to be done correctly though.  I've seen surveys that forced you to answer a question even though none of the available choices applied to you thereby scewing the information.

Hey Glen,

1134 of us took part in the single largest survey of it's kind on people diagnosed with cluster headache in Nov-Dec 2008.   Dr. Todd Rozen, M.D., and Royce Fishman developed it and a few of us had a hand in developing some of the sections.  I worked the oxygen therapy questions. 

When it was completed, Todd found the results would support at least 6 papers.

DJ has posted the latest paper that Todd and Royce completed at the following link here at CH.com:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It's titled: CLUSTER HEADACHE IN THE UNITED STATES: DEMOGRAPHICS, CLINICAL CHARACTERISTICS, TRIGGERS AND PERSONAL BURDEN.

Is this the survey paper you're talking about?

There's an earlier article and the two original abstracts that Dr. Rozen presented at the 14th Annual International Headache Congress Conference in Philadelphia in Sept of 2009.

The abstracts cover the waterfront of methods of controlling CH complete with percentage rankings...

There are still four more articles to go but the process of writing them is time consuming and so is the process of getting them accepted for publication.  It could take another two years to get them all out.

Take care,

V/R, Batch