Hey everyone.  Im new to the site.  Well, i've been here before and now would like to take a vested interest in what goes on here.  My name is chris.  I just turned 31 and have been suffering for about 8-10 years now.  

I would like to somehow start a survey, if one has not been done yet.  A survey that asks a wide range of questions from Do you smoke, job type, are you allergic to, when do your headaches occur most often and so on.  

I remember filling out a test similar to this on this site but i want to find out more.  What are our eating habits.  Were we in any accidents.  Things of that nature.  Im a graphic designer by trade.  I stair at computers all day long.  I use my cell phone a lot.  Could that be it?  

So I was wondering if anyone could help me out with this test.  I have a guy who is great at excel and can easily make me a Q&A in excel where the answers are shown in an easy to read chart.  

This would be a big accomplishment for research... If again it has not been done.  Finding out exactly how we all live our lives.  Activites, food, sex.  Everything.  Can the moderator help me with this.  Can I get some help with the questions or if I can even do this at all here?  

Thanks everyone.  Im in the middle of a looonnnggg cycle now.  There has to be a link between all of us.  There needs to be a cure.  The doctors abide by the rules, and the rules are killing us.   :'(

Some of what you are referring to have indeed been done.


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Not all doctors are confined by the rules.

Brew wrote on Jul 9^th, 2009 at 8:34pm:

Not all doctors are confined by the rules.

I guess it depends what type of insurance you have  :D I have kaiser.  I know more than the doctors and they just wont listen to me.  

I had a real good doc.  Open to knew things and listening to what i had to say and would actually research the things i found that were helping people.  There putting chips in peoples heads overseas, some people are taking small doses of mushrooms... he would look into those things.  Talk to me.  Care.  Kaiser.  They don't care.

Chris,

We completed the largest and most comprehensive cluster headache surveys of it's kind in December of last year.  Royce Fishman and Dr. Todd Rozen, MD, one of the top neurologists in the US specializing in our disorder led the survey design team.  Several members of CH.com also took part in it's development and preliminary testing.   Dr. Rozen and Royce Fishman analyzed the results and they will be published in two articles in the International Headache Congress Cephalalgia journal in September in time for the 14th International Headache Congress convention in Philadelphia.

As soon as we receive word that the Cephalalgia journal has gone to press and is mailing, we will be allowed to post the results.  The IHC has first rights to publication of the survey results and that prevents me from posting them in print at this time.  We had hoped to present the survey results in St. Louis but that was overtaken by events.

What I can say at this point is the survey consisted of 187 multiple choice questions covering virtually every aspect of cluster headaches from time to diagnose to demographics and epidemiology as well as efficacy of preventatives and abortives.  There are several questions dealing specifically with the use of oxygen therapy from obtaining a prescription, to it's efficacy and economics.  The survey was placed on an Internet website by a company specializing in surveys from October 12, 2008 through December 12, 2008. 1134 individuals completed the survey.

The shear number of survey participants and the survey design have produced data with a very high confidence level.  With an estimated 214,000 cluster headache sufferers in the US, a sample size of 1134 gives the compiled data a 99% confidence level with less than a 4% margin of error.  In short, the survey results will reflect the rest of the population of cluster headache sufferers accurately.

Take care,

V/R, Batch