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:

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

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.

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

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

Are there questions appropriate for those who had cluster headaches for years but no longer do?

I had eposodic clusters for 28 years which simply stopped in 1986.

Sorry to hear that it's only for CH'ers in the USA.

Feeling a little like chopped liver here. ;)

Batch......You rock, man!!! [smiley=headbanger.gif]

Splendid!   :)

You're the man, Pete.  Many thanks.

Best wishes,

George

Edit to add:  Finished.

I'll assume this that the Episodic/Chronic  criteria is what the INHS(whatever the org is) states as 30 days PF with or without meds)?

My  results will most likely sque the results because of the CB therapy.  So It's probably better I don't partisipate.

Batch~ Thanks for your work on this project.  It's a good start for accumulating much needed information.
From the opening survey page:

Quote:

As a reference, below are official definitions taken from the International Headache Society, to differentiate between an episodic and chronic cluster headache condition, and, the KIP scale definitions.

I can't participate in a survey which uses the KIP scale, since I strongly disagree with the criteria of the 10 levels. With all due respect to Kip, may he rest in peace, this scale is quite subjective and fails to use a more universal approach (if there is such a thing).  There are other pain scale measures available which would probably be taken more seriously by the medical community.  I think this would also apply to using the word "shadow"--a term I haven't seen used or clearly defined by medical researchers and neurologists.

Looks good Batch. Like Donna, mine have been gone for a long time; since 1991. I hope I can participate.

Charlie

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

Maybe could change the name of the thread to:


Batch wrote on Oct 12^th, 2008 at 8:11pm:

Cluster Headache Survey

and get it stuck at the top of the page until end of Jan.

Do I put chronic or episodic? I don't know which I am, I've been in cycle since may 28th of this year, and it hasn't stopped yet...  So if someone can tell me which to put I'd be thankful!

Took the survey!

:)

Pixie-elf wrote on Oct 13^th, 2008 at 2:55am:

Do I put chronic or episodic? I don't know which I am, I've been in cycle since may 28th of this year, and it hasn't stopped yet...  So if someone can tell me which to put I'd be thankful!

Episodic.  Chronic is defined as cluster headache attacks occurring for more than 1 year without remission or with remissions lasting less than 1 month.

Doing the survey now - Is there a problem with this page?

"How many times in the last 2 years have you been to a hospital emergency room due to the severity of a cluster headache attack?"

Even if one checks "0" to the above question the survey still makes you answer the question

"Were the emergency room physicians familiar with cluster headache?"

If one answers the top qestion "0" shouldn't the next question fall off, or shouldn't there be a "NA" response to the second question?

Superhawk I had the same thing I havn't been to the er in years because they dont know what to do,  so I just answered "no" for the second question.       Phil

Ps I had a problem at the end of the survey the click here to close button didnt do anything it made me question if my survey went through.

I too took the survey.  May I make a few suggestions to those getting ready to take it:

1.  Get all the bottles of medicine you have for dosage and/or other names for the medicine you have taken.  I was not always sure what I had taken and what I hadnt based on their generic names, or whatever.  

2.  Take the time to take it.  You will need some time but it seems worth it.  I dont really understand why an objection to a pain scale would make you not be a part of the survey.  The kip scale is only referenced 1 time and is certainly NOT the focus.  Plus an alternative pain scale is also used.

3.  There was a question or two which I had to answer which didnt really make sense.  I said I had never been to the ER but then was FORCED to answer whether or not the ER docs knew of CH.

All in all I hope the survey does what it was intended to do.  I hope everyone takes the time to fill it out.  It certainly can't hurt, can it?

Survey taken....above problems experienced as well.

It's worth your time folks.

B

Pete..... [smiley=thumbsup.gif]

Michael

I finsihed it. There was another little niggling thing earlier on I got through anyways too.

I second the "it is worth your time" comment!

I learned more about CH by taking this and even a bit about myself, thinking about my CH in such clinical terms really opened my eyes to a few things.

I passed the link to Jeff.  He finished it today.  Thank you all for your diligent pursuit of answers to this affliction.

KR

I took the survey.  A few niggling issues like those raised already.  Great work, can't wait for the results to be tabulated/published.

With best wishes,

Ray