Good people of Clusterville, members and guests alike who suffer from episodic or chronic cluster headaches... The long awaited Cluster Headache Survey will be available online tomorrow.  The website can be reached via the following URL:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

This survey is being conducted by a professional on-line survey company and it can also be reached directly from the survey portal at the URL below.  If you just want to look it over for now, DO NOT click on the EPISODIC or CHRONIC portal entry buttons until you're ready to sit down and devote the time as clicking on either of these buttons activates the survey and the clock starts running for you to finish it completely.  You'll have plenty of time so don't worry.  There are also plenty of instructions.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Again, don't click on the EPISODIC or CHRONIC portal entry buttons until you're ready to take the survey.

Having said that, when you are ready, please DO click on one of them as appropriate to take and complete this important survey on our disorder.  The questions in this survey have been carefully crafted by leading neurologists experienced in treating cluster headache sufferers and by epidemiologists to capture the most comprehensive body of information possible on our cluster headache disorder.

The results of this survey will be analyzed and submitted to a leading medical journal by one of the top neurologists and cluster headache specialist in the Nation in order to support a better understanding of the cluster headache disorder among physicians, neurologists, private and government insurance companies.  

This will be very important to new and long time cluster headache sufferers alike as we've all had problems, to one degree or another, being properly diagnosed and treated when the beast first shows up.  

Moreover, the educational value of these results alone will help raise the level of awareness of our condition to a much wider community of healthcare providers and our supporters.

We've all got busy schedules and there's never enough time to do all the things we need to do. However, when you stop to think what this could mean to all of us, I think you'll see the need to schedule time to take and complete this important survey.  The survey is open to members and guest alike who suffer from episodic or chronic cluster headaches and who reside in the US.  It should take 30 to 40 minutes to complete.  It starts October 13, 2008 and ends January 30, 2009.  Please participate and thanks. (I just checked and it's open now.)

Take Care,

V/R, Batch

Thanks for the good comments and questions.  Please let me try to address them.  First of all...  I'm not the man, so don't thank me...  There were a number of others involved in making this survey happen from the Git-Go...  Helen, Svenn, Michael, DJ, Mike, Royce, and a lot of other folks.  It was and is a team effort.

Regarding the survey being limited to US residents... Please don't feel left out.  There should be ample information coming from this survey that applies to cluster headache sufferers all over the world.  The rationale for limiting it to US residents was essentially made on expense.  There's a price for each question, for the total number of participants, and the general statistics run on the responses.  The number of additional questions required to address the differences in healthcare systems between the US, EU, and other countries would have been very confusing and the cost prohibitive at best...

I make no promises, but would suspect if the responses to this survey meet or exceed the expected goals and the analysis points out a clear potential for benefits to expand the survey to other countries, such an expansion might be possible in due time.  

As far as concerns about being a cluster headache sufferer, but you've been in remission and not had an attack for some time, or there's confusion about the criteria used to classify you as episodic or chronic...  Please don't worry.  The survey was constructed with these factors in mind and the particulars should sort out easily, so please take the survey.

Blame me if you don't like the Kip-scale then interpolate from the 0-5 neurological pain scale to the 0-10 Kip scale...  The end states are the same and a point here or there on the NPS won't make much difference among 500 response unless you want to pole vault over mouse turds.

Again, thanks for the comments and questions.  I'll try to field them as best possible.  There's also a web link on the survey site if you want to get even more specific with your questions.

Take care,

V/R, Batch