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

Personally, I have no problem with it. Understand, however, that many people are leery of giving out personal information to a complete stranger over the internet (or the phone, or e-mail, or however, for that matter).

Understand, too, that I don't make these decisions. I'm just a member here.

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.

John,

I'm not volunteering other people's information but since it's posted, take a look.  On the general board is a thread, "I have a dream".  Check that thread out and in particular Gator's posts, there's a good intro.

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

Bill

Thanks Kevin.  I'll be sure to check that.  I think people understand that when they're posting on a message board, basically, their posts become public.  But I'm not going to be pulling people's posts willy-nilly and using them in my project/paper.  I'll email to ask permission, and if that permission is denied, I won't use it.  I realize that the people that come to this board are hurting and I'm certainly not interested in causing anyone stress by using something they wrote if they don't want me to.

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

I'm still fairly new around here but not new to CH.  I'd be willing to answer questions as well.  Feel free to PM me.

Jeannie

Happy to help if I can.

Regards,

Malcom

John, welcome aboard.  Did you know that you are a supporter?

For me, this site and the support I have received here has made the difference between life and death. I have other headaches also, shorter in duration than ch, that contribute to my need for support.

This group is very diverse, and the only thing we all have in common is that we or a loved one has ch.  We all serve differnt functions, like the parts of a body - some reach out with loving hearts, some reach out with head knowledge, and some drive over with a tank of O2.

We get to know each other in a way we don't even know our own family, and support each other in our other struggles also.  When someone asks for prayer to deal with personal loss and trials, they get it and not just from people who post to that thread but from everyone who reads the thread.

People here are very protective.  

Charlotte

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

Count me in to help.  I'll answer what I can.

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

Oliver

You're welcome to contact me via PM if you're inclined to do so, John.

Best,

George

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!
:-?
*  

Hey, John!  Glad to have you here!

I am an senile old coot, but with a blabber mouth ... I would be happy to talk or chat or whatever with you.

Just let me know what I can do for you!

Chuck

(And don't believe what the others say about me ... NO ONE is THAT kinky or bad!)

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

Memphis John,

I am very exited about your project and would love to help in anyway I can. I cheer for the fact you support your long time friend!

In short:
I'm a Dutch guy rushing towards his 34th birthday with a phantastic supporter in Sonja (pronounce Sonya), with whom I've been together for 5 years now and she's seen 3 of my cycles of each 2 months, the first only months after we've been together. She's a lifesaver.

I've been clusterheaded since my final year in high school, '92/'93, and have suffered throughout college and the military.
In the nineties it seemed like the CH was all over the board, meaning I'd get several cycles anywhere anytime during the year. I didn't get any in the year of 1999 so I actually thought they were over.

Then, from the fall of 2000 I've gotten them in clear cut cycles, every two to two and a half years, 7 to 9 weeks each.
Only untill my last cycle this year, I started reaching out and found the wonderful people here. Finally I wasn't alone anymore in this horrible affliction, which influences so much in your life.

If there's anything you want to know, feel free to PM me.

Greetings, Pascal.

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.

Fair dinkum, I never realised I was part of a sub-culture.  Is that legal nowadays?  Perhaps any messages should be coded and passed through a third party because, unlike Chuckles, I have a reputation to protect.

Just to answer your main question though, John, our little family here at ch.com means I'm no longer alone and for that I thank DJ sincerely.

Feel free to PM me,

Brian down under.

   Feel free to contact me. I'd give up all the dirt on Chuck. But he'll beat me to it.
[smiley=smokin.gif]

Quote:

Re: The Culture of Clusterheads Reply #4 - Today at 9:10am     I'll answer any questions via email I feel comfortable with. Bill

me too.   However....if you stick around here long enough to read what is posted here.  You'll get a VERY good idea of what anyone here will say.   Yes, indeed.   Read what Gator posted.  It is a VERY good representation of what the majority feel.


Linda

Count me in.  More than happy to get involved.

Chuck left his volunteerism open to almost anything.  Everybody duck!!!!     ;D

But sure, I'll tell you how dark life is when in cycle

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.  

John, since you are interested in our condition, I would consider you a "supporter" and i'm more than willing to share info with you.  I share it with many who are not imformed at all.

Count me in -- I"m older than dirt and can give you the dirt on Chuckles ... Have been around here since 98 and know where some bodies are buried... (figurtively speaking of course - I had nothing to do with burying them!  ;) ).

Seriously, PM, email me or whatever you need. Most of us here are willing to talk your ear off....

Hugs BD

Welcome!  Always glad to have someone interested in our malady who can get the word out to others.  Feel free to PM or email me.  I'm available for whatever good I can do for you.

Jerry

Hi John and welcome!

Feel free to pm or email me anytime.

Beth

Hey folks,

Sorry I've been away for a little while.  Been dealing with some medical problems that have made it difficult to type, mouse, anthing on the computer.  Just wanted to jump in because I saw someone else doing a study for school and just wanted to differentiate us.  Hm, I'm sensing a trend.  I've sent out some PMs and gotten some great replies.  I hope my project will do CH.com justice, and thanks to all who have and will help.  If anyone has questions for me, drop me a PM.

Thanks again,
John