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        New Message Board Archives >> Jul-Sep 2003 >> Hello all you new people.  Be sure
        
(Message started by: Donna on Aug 13^th, 2003, 9:42pm)

Title: Hello all you new people. Be sure
Post by Donna on Aug 13^th, 2003, 9:42pm

to check out http://www.clusterheadaches.org

This is OUR organization......not for profit.......and membership is free, just sign up.

Our membership is growing as we speak.....and we need as many members as we can get.......the more we are, the louder we are as a voice to the medical and insurance communities and the general public who don't have a clue as to what a cluster headache is.

Title: Re: Hello all you new people. Be sure
Post by ClusterChuck on Aug 13^th, 2003, 10:09pm

I found this site last night. I have spent almost every waking hour since then on this site, except when I am having a CH (been a good day today, only 8 since midnight, and only about a Kip 8!)

I even sent a copy of Cluster traits and the Kip scale to my family and friends. I got an email back from one of my nephews (about 26 years old) that brought me to tears. It was so simple, but so sweet. He said something like: "I knew you were having those, but had no idea what they really were. I can't stand the minor headaches that I get. I can't imagine that you have dealt with those for so long!"

I have been having these for over 20 years. I am cronic now. I am having a real hard time dealing with them due to the colapse of an almost 30 year marrage, and sever pressure from my two youngest children (16 and 17 years old). That is probably why I am in such a sever set of them for the past two weeks. I have to admit, that suicide is very prominent in my mind. My work, family and health are shit, so why fight it?

I have to say that this site has helped me a lot, just reading that others are having the same headaches. I almost cried when I read that others want to be left alone, to pace, to scream, bang your head, etc. I thought that I was the only one. As it is, I am not even taking one day at a time. All I can accomplish right now, is hour by hour.

I thought that by the time you got into your 50's your life is fairly well set. Not always!

I really want to thank DJ (is that his name? I also suffer from CRS [Can't Remember ... ummm ... STUFF] ) for setting up this site and keeping it running. This site is helping ... Well, enough rambling from an old fart like me.

Title: Re: Hello all you new people. Be sure
Post by Ree on Aug 13^th, 2003, 10:26pm

Welcome Cluster Chuck.............life here is one big cluster of information... a little play on words there...I know not funny... Again welcome to the family Ree

Title: Re: Hello all you new people. Be sure
Post by andy on Aug 13^th, 2003, 10:33pm

Chuck, hang in there bro, there are lots of us here to help you deal with this beast. What meds are you on? Have you seen a neurologist? Have you tried Oxygen? 02 works for most of us and it is cheap. Here is a link to our oxygen page http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm Read up on it and find some PF time. I am episodic and in remission now but i know how you feel. Stick around and do some reading, im sure you will learn lots .................andy

Title: Re: Hello all you new people. Be sure
Post by ClusterChuck on Aug 13^th, 2003, 10:35pm

Thanks, Ree, I do feel welcome here.

As far as a play on words, how about my name? What rimes (I think that is spelled wrong, but can't think of the right way to spell it) with Chuck?? Haha!!

Cluster*uck about sums up my life right now!

Title: Re: Hello all you new people. Be sure
Post by ClusterChuck on Aug 13^th, 2003, 10:42pm

Andy, I think I have been doing all the right things, from what I have read on this site.

I am under very close supervision of my neurologist. She was the one that finally got me some releif when I first started going to her.

The latest drug of choice (???) is Verapamil. O2 worked in the beginning, but has stopped being of any use. Imetrex used to work some. Now, no results, either inhaled or injected. I think I have tried all of the drugs mentioned on this site. Right now she is working on developing a combination of drugs to try together, but a problem with that, is that a little over a year ago I had a problem with my heart. Surgury fixed that for now, but it has hampered what drugs we can throw at my body.

So, another hour and I am still here.

Title: Re: Hello all you new people. Be sure
Post by Patrick_A on Aug 13^th, 2003, 11:10pm

Welcome to Cluster World Chuck, I am so sorry that you are hitting a rough spot. I understand your pain as do all people here. Don't give in bro. You can learn a ton from people here. There are lots of ways to deal with it. Talking to people has helped me a lot, Compassion from my cluster friends has given me the desire to beat this Bastard. Hang in there bro, and you will also soon feel this love that emanates from Cluster World.

Patrick