Welcome to all new ClusterHeads!

Words of advice borrowed from CJohnson (Curtis), another poster:

1. Find a neurologist you can rely on.
2. Formulate and employ a preventive strategy.
3. Formulate and employ an abortive strategy.
4. Use what you have learned to help others.

One way to help others (as well of yourself) in the words of yet another poster, Elaine:

I am fighting the only way I know how. I back O.U.C.H. anyway I can. Through O.U.C.H. the word WILL get out that Clusters are more than a headache. More research WILL BE done.  More doctors and hospitals WILL know our needs. Insurance companies WILL know our needs. Along the way someone just may trip and fall over the cure!

There is a link to O.U.C.H. in yellow over to the left.

If I grind this to the top...

does it mean I can say me and deb are doin the bump and grind?

oh nevermind

bump

To all newcomers, WELCOME ABOARD!

A few thing I would like to tell all of you.  First and foremost, you need to read this link: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
That link tells the history of this site, and about our illustrious DJ.  There is not a finer person on this earth!

Second, get to know the people here.  There are some wonderful people here.  One of the ways to get to know us better, is to go to the chat room that a sister site runs.  To get there, go here: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or  There is normally someone there after 10 pm east coast time.  If no one is there, log on, and wait.  Many of us will check there and, if no one is there we just go away, but if someone is there, we jump on in.

Get to know people, as you will form close ties with people that should last to the rest of your life.  Exchange phone numbers.  Talk on line, and talk on the phone to them.  These people can be an unbreakable life line for you, and you can be for them.

Use this site to air your problems, questions, complaints, cry, whine, scream, shout, or whatever.  We are here to help you in any way that we can.  The one thing that we ask of you, is to give your support to others, also.  We are sufferers, and we are supporters.  As DJ said, this site is a help to us, in that we can get information and support, but we also get tremendous satisfaction from helping our brothers and sisters.  

If you ever get a chance to meet another clusterhead or supporter, do so!  There is no better time than meeting them in person!  The bond is instantaneous!  And do not let the fact that you are in cycle stop you.  I have been to two of them, so far, and at both of them, I was getting hit.  All I did, was go to another room (I am the type that wants to be alone), suck on my oxygen, and when done, go back to the group.  Everyone knew what was happening, yet no one freeked out over it.  They were there if I needed them, but knew enough not to force themselves on me.  You could see the love and vibes in the eyes of each and everyone of them.  This is the only place where you can get hit, and everyone will know what you are going thru, and no one will tell you "Oh, it's just a head ache!  Deal with it!  Take a couple aspirins, and you will be fine."

Sorry for being so long winded, but the above are things that have been such a life line for me, and almost every other clusterhead here.  Many of us say, that if it was not for this site, I would be pushing up daiseys.  That is not just a phrase, it is the God's honest truth.  When you are praying for your fellow clusterheads, and their families, give a special thanks to God, or who ever you pray to, for DJ and his amazing creation!  Also, thank DJ directly.  He doesn't post much anymore, but he DOES read all posts.

Thank you DJ!

We are a family.  Welcome to the family, and welcome to my heart.

Chuck

Modified to update to new chat room

Welcome home new people
Read all you can find and tell us a little about yourselves. There's a lot of good info and good people here so stick around.

stevegeebe wrote on Feb 11^th, 2004 at 8:02pm:


There sure is Steve.
I wonder if there are times of the year when we see more newbies than at other times. I'm thinking Spring and Fall.

Jim

Saddled back up;
on the ship again,
no bailing
on this ship
The titanic was lost, but we got a good crew...
keepin in check, had one sent
the vents been cleared, you are all so dear
row row, toot toot.

thank you...Mr.YL

xorn wrote on Mar 26^th, 2004 at 8:56pm:


ok sorry I have to ask what is mud?  ;

Thanx Chuck!

I am honoured and will happily claim my space in your heart. Preverably deep in2 1 of the corners 2 ensure U do not lose me.

tlc2U and everybody U luv[color=Orange][/color]

Hi my name is Scott and I sometimes feel like a new member, although I really first visited this site when I was diagnosed in the summer of 1999. The summer of complete utter Hell.

This site was of utmost importance than and still. I have not been proud of some of my postings lately, but I am past that.

I have spent more time reading lately, rather than posting, but feel it's ok to post now 

I also would like to know who DJ is, and if he/she is the creator of this website? If so, thanks. This site was my portal (especially in '99) into the world of CHs, and what they were, how they were treated, and of course the message boards where you realize other people have the same exact oddball condition.

Thanks to the creator of this website, whoever you are.

                         -Freddy (Scott)

Hello Everyone, I am brand new to this site! I just stumbled onto it! My husband has had CH's for 20 of our 26 years of marriage. We have raised 2 kids. The youngest being 16. Both kids have always been so terrified during one of their Dads CH. My husband like all of you that I read about have tried many, many drugs. None of which didnt work, till about 7 years ago and we found a Dr. about 5 hours from our home and he put him on a drug called [sansert]. Maybe someone has heard of this, if so let me know. He only takes it during a cycle, it has been 2 weeks now and they seem to be getting better. Not as severe, but as often 1 to 2 a day. I know I myself do not have the Ch's but wish it was me instead of him. It is so hard to watch cannot imagine being the one in the horrible pain. Please if any one has any new things to offer or just a word of encouragement let me know. Desperate in a small town!!!

Fzfan, Thanks for the response. Not sure if Im doing this right or not? Yes, we have many HORROR stories! Yes my husband has tried o2. But I wiil check out the o2 info, as he may have been doing it wrong! He has been on so many drugs, as a matter of fact the Dr. we had before the one we have now he had him on so many drugs at the same time, when we switched DR.'s we took the bag of drugs with us and I remember taking them out of the bag and Dr. asking ok which ones are you currently taking and when my husband told him all of them, he said {MY GOD MAN WHATS HE TRYING TO DO KILL YA!} I will try to find the supporters corner you referred to as I would like to help anyone that I can and have the mutual support myself, as it is so hard to watch the one you love. more than life itself in such horrible pain. It is so nice to have some one that knows what your talking about! So glad I found this very informative and friendly site. We personally dont know any one that suffers with the beast! All our friends and family try to understand but they have no clue. I almost get mad when people say yes I know what hes going through as I have severe sinus headaches, or its just a headache whats the problem? You have to witness one or worse yet suffer through one. Again THANKS for all the info! Going to check out oxygen info hope to learn something!

Visit the OUCH site if you haven't already.  Lots of fundraisers going on....check around.

Welcome to all of the new people!  So great to have you here.

Big hugs...Little Deb

Welcome Eddie!!


Little Deb

Excellent Welcome post!

I hope everyone new to clusterville reads all the replies.  The advice and support are great - as usual. 

If anyone needs a clusterbud, just email or send me an IM.  I've been gone so long, it's the least I can do.

It feels sooooo good to be back!

Kate