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        New Message Board Archives >> 2006 General Board Posts >> New to the board
        
(Message started by: upnover on Jan 18^th, 2006, 1:06pm)

Title: New to the board
Post by upnover on Jan 18^th, 2006, 1:06pm

Hope this is the place to post this?
Well I'm new here but have been a CH for almost 14 yrs
I have already gotten great info here and look forward to getting more. Currently I'm in my 2nd cycle since early Nov. I did a pred taper and it broke the first cycle but since the new year I'm in a new cycle.. now I'm on o2 . I know I just have to deal but it's nice to have a forum to help with the monster. and where I can I'll give the same.

Tom

Title: Re: New to the board
Post by Ree on Jan 18^th, 2006, 1:10pm

Hi Tom glad you found us... sorry you have CH... stick around you have found the best Cluster family on the planet. You will both laugh and cry while getting the best support. My hubby has CH about 20+ years also. We also have a supporter board for your family. Again Welcome. I'm sure the others will chime in shortly... God bless Ree

Title: Re: New to the board
Post by sandie99 on Jan 18^th, 2006, 1:17pm

Welcome aboard, Tom! :)

I'm so sorry that you have CH. But it's wonderful that you've found us. Here you'll get lots of advice and support, always. :)
I'm a cronic, but my CH went into remission in April.

Best wishes & PF days,
Sanna

Title: Re: New to the board
Post by Ghost on Jan 18^th, 2006, 1:22pm

Welcome Tom and sorry you had to find us. This family put the dis in disfunctional. ;;D [smiley=laugh.gif]
Seriously we are here for ourselves and all the others, and any time there are questions or you just want to add advice here we are. We may argue and disagree but we still care the world for each other and will help when we can.

Mike
Goat
Ghost
or whatever you want to call me, just not King or Mule!

[smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] ;;D ;;D ;;D ;;D ;)

Title: Re: New to the board
Post by Lizzie2 on Jan 18^th, 2006, 1:24pm

Welcome, Tom!

If you have to have what's been said to be the most painful condition known to man...well, then...this is the place to be! This is a wonderful family full of sufferers, supporters, and all of us working to support one another! :)

I'm 25 and have had CH since November 2003...I'm a chronic clusterhead.

Read lots and lots and lots (esp. links to the left) and let us know more about you!

Take care,
Carrie :)

Title: Re: New to the board
Post by upnover on Jan 18^th, 2006, 2:13pm

Thanks for all the support
well i just saw the "getting to know you"area in the forum so if this moves thanks (mod)..

Me I'm just looking for a cure [smiley=laugh.gif]

Title: Re: New to the board
Post by BarbaraD on Jan 18^th, 2006, 2:17pm

Welcome to Clusterville. For some of us, it's our home away from home. Most of us come here everyday just to see what our "family" is up to. It's a place to vent, whine, cry, get advice or just pick on someone. We can laugh at our condition (but will HURT anyone else who does it!). We get to know each other too well, because only another CHer can understand what one is going thru.

Pull up a rocking chair and sit a spell. Read everything. There's years of advice, what's worked and what's not worked for most and a lot of "remedies" that are hillarious (and most of the time just time killers).

You might find someone in your area who you can meet in person (that's an experience you NEVER want to miss). I've met literally hundreds of Chers over the years and haven't encountered an axe-murderer yet (although the jury is still out on a few ding bats).

Never be afraid to ask questions - the only dumb questions are the ones you don't ask. Someone has probably experienced the problem you have and will be glad to give you his/her experienced opinion (which you can take or leave - your choice).

Anyhow, again, welcome to this disfunctional family. Hope you're out of cycle soon and can start helping those who are not.

Hugs BD

Title: Re: New to the board
Post by Ghost on Jan 18^th, 2006, 2:19pm

on 01/18/06 at 14:13:20, upnover wrote:

Thanks for all the support
well i just saw the "getting to know you"area in the forum so if this moves thanks (mod)..

Me I'm just looking for a cure [smiley=laugh.gif]

Me too ;;D [smiley=laugh.gif]

Title: Re: New to the board
Post by minnie on Jan 18^th, 2006, 3:59pm

Welcome to the board and CH family.Sorry your getting hit but the people here know what you and your loved ones are going through.As Ree said theres a board for supporters but we also hang out here on the main board.lots of great advice and when you think your at the end of your rope tie a knot and head here.
two sites to check out are
http://www.ouch-us.org/
organization for understanding cluster headaches
and
http://www.clusterheadaches.com/chat/
the chat room normally has people in after ten pm EST.
if no ones there sign in and someone should sign up.You can talk about headches or anything there.Most clusterhead have insomnia so chat can run late so you don't feel alone at night.
Take care,
Minnie

Title: Re: New to the board
Post by maffumatt on Jan 18^th, 2006, 4:03pm

alot of really nice people here who really care, stick around..........

Title: Re: New to the board
Post by ExplodingEyeBall on Jan 18^th, 2006, 4:06pm

Welcome Tom.

You have found a place where people actually understand and won't tell you to go to a dark quiet room when you have your headaches. ;;D

This area is where we usually hang out and shoot the breeze about nothing in particular. There is a another are that is CH specific and other areas for medication discussions and other topics.

Hang around and look the place over and welcome home.

Pat

Title: Re: New to the board
Post by Jonny on Jan 18^th, 2006, 5:05pm

on 01/18/06 at 16:06:24, ExplodingEyeBall wrote:

Hang around and look the place over

Yeah, but keep your hands in your pockets for the next few hours until we can check you out with the FBI ;;D

Welcome aboard, Tom!

Title: Re: New to the board
Post by Guiseppi on Jan 18^th, 2006, 5:11pm

Disneyland has nothing on us, welcome to the happiest place on earth!

Guiseppi

Title: Re: New to the board
Post by Charlie on Jan 18^th, 2006, 5:51pm

http://www.netsync.net/users/charlies/gifs/victory2.gif

Happy to meet you Tom but sorry you have to deal with this horror. You'll find lots of good ideas here hidden and lots and lots of lunacy.

Here is something to try. It may sound nuts but it worked for me:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie

Title: Re: New to the board
Post by zwibbs/Scott on Jan 19^th, 2006, 4:39pm

Hey Tom. Welcome aboard!!!! You have come to the right place--everyone is very helpful.

Title: Re: New to the board
Post by TomM on Jan 19^th, 2006, 5:01pm

Too many Tom's. Move along, pal. Awe, shizzlenuts. Welcome to da family.
TomM

Title: Re: New to the board
Post by Carl_D on Jan 20^th, 2006, 7:48am

Sorry to have to be here, but welcome to the fold!

Peace,
Carl D

Title: Re: New to the board
Post by JenniferD on Jan 20^th, 2006, 7:59am

on 01/18/06 at 17:05:21, Jonny wrote:

Yeah, but keep your hands in your pockets for the next few hours until we can check you out with the FBI ;;D

Welcome aboard, Tom!

I thought someone was supposed to lock the door! Who let that guy in??? ;)

Hi Tom, and welcome. Glad you found us, but sad you had to. Looking for a cure? We all are, our new friend, but while we wait and look and hope and try, we have each other. Sometimes this may be quite literally a lifeline, sometimes we just hang out. But we are all always here for each other...and that now includes you.

I am 20 years episodic, out of cycle since the 2nd week of December (woohoo!!!). Anything we can do for ya, just let someone know, k?

Peace and pain-free (pf) wishes to you,
Jen