I emailed DJ about this project I'm doing for a course in college.  He said I was welcome, and that if I post exactly what I emailed him, I'd be welcomed by the members too.  So I'm just going to post that email, sorry it's so long.  Here goes:

I'll give a little background first.  My name is John Thomas from Memphis TN.  One of my closest friends of 20 or so years is a cluster headache sufferer and has mentioned your website and its message board numerous times.  Being such close friends we've discussed this subject quite a bit over the years, and when I married a woman that suffers from classic migraines, I learned very quickly how different they are.  So I have a little background on cluster headaches and have read through some of the information on your site to get a better understanding of the medical issues and treatments.

Now to the crux of the issue and why I am writing to you: I am a student that has returned to college after a loooooong absence.  I have a class in which we are doing an ethnographic study of a subculture of our choosing.  I think the website and community you've created certainly qualifies, and since I have a friend that suffers from cluster headaches it is one that interests me.  I was originally going to work with migraine culture, but it seems the websites and forums are a little too soft and fuzzy to hold my interest.  Yours, however, seems to strike at the heart of such a painful condition and feels much more dynamic and real.  I'd like to gain a greater understanding of how cluster headaches affect members' lives, how they deal with them in regards to the outside world, and how they find solace in the
community you've created.

I apologize for the length of this email, but I want to make sure that
everything I do in this project is above-board and open to anyone willing to talk to me or allow me to use their message posts in this project.  Anyone that is quoted or referred to can say they don't like what I've written.  I will remove it.  Anyone I talk to is welcome to look at the finished project.  I have no desire to be mole.  This isn't a dirt-digging expedition.  It is a project that evolves from a sincere desire to understand the way cluster headache sufferers interact and help each other.

To wrap things up, I am asking for your permission to become a member of your forum as a supporter and ask some questions that will give me some insight into the community.  I know that I will never understand the pain you and the other members feel.  What I hope to understand is how this subculture became a subculture and how the web has helped people with cluster headaches connect with others who share their pain.

John

Yeah, I understand that, and I'm really not looking for personal information.  Just trying to get a handle on how this supporters network works.  I hope people will be willing to talk to me, and I really hope somebody might be willing to answer some questions via email, but like I said, I'm not digging for dirt, just a student trying to gain some knowledge.

I'll answer any questions via email I feel comfortable with.

Bill

Thanks Bill.  We're going through "interview training" right now.  I'll be in touch.

Happy to help if I can.

Regards,

Malcom

I will be happy to help you in any way John.

Feel free to PM me.
The chat might be worth a visit too.

Oliver

I would love to let people know what we struggle through.  No one except those who suffer from CHs can say they understand.  I have no problem with helping you through this website and messages.  I will answer an questions you have.  Read my intro to find out more about me, New to site not to pain.  The more people that know a real account of what we suffer with the better!!! Count me in!

River  

Hi John,
I'm married to a cluster head.  He has been through the mill.....as most all cluster heads have.  Blake isn't one to post but if you want he'll be available...I'll just have to type it for him

Jackie

i would be more than willing to share what impact ch and this board has had on my life, pm or e-mail is fine.

    Feel free to contact me. I'd give up all the dirt on Chuck. But he'll beat me to it.

Count me in.  More than happy to get involved.

I almost hate to bump this thread since there are people with cluster-specific questions posting, but I had to say thanks for the overwhelmingly positive response.  I won't get to post much during the week unless a class gets cancelled (like today), but I think the most important thing right now is reading and learning, and I can tell I've got a lot to learn.  I'll be in touch with those that have offered, and like I said, I'll be checking in as things progress.  It looks like y'all have a great group here, and I think it's wonderful that DJ has given you a place to find each other.