I am 56 years old,  I have had clusters for 31 years now , the first 20 years I was chronic. I spent 20 years  scared of them. I figured anything that hurt that bad was going to kill me. It took years before anyone gave that I had a name. During those years , I had my teeth pulled, went through shock treatment, took every pain pill known to man. I was sure I was dieing, and doctors thought I was crazy. I finally found out I had clusters I had a name for what I had, bad news no cure. Also so rare my doctor had never treated anyone with them. Some how I worked a job and raised a family. I was still beat up with the pain. In 1999 I bought my first computer, and the first thing I typed in was cluster headaches. I was expecting to find information about clusters, I found that and more, others who hurt like me, I read for days and cried for days as I read peoples different stories and with each story I would say” that’s me”.  It was weeks before I posted, and entered the chat room. A wonderful man Dave Greenly reached out to me, from there I learned how to deal with my clusters, I took the friendship of the kind people here and all the tools they offered to fight clusters and began to win the battle.

Things I did wrong;
1. I let clusters run my life. I thought about clusters all the time, even when I was not in pain I let fear take over and limited myself to certain things triggers I believed set off the clusters. I stayed home from PTA meetings,  church, different things I enjoyed.
2. I gave up hope of ever having a life.
3. I tried to end my life.


Things I did right that made a difference;
1. I said no more clusters are not going to run my life. At work I told my boss if I have a cluster I need time to take care of it, if I am gone a hur I will give you two back. I did just that. That helped putting me in control.
2. I stopped staying home and missing out with my family, I told the family if I get hit help me back to the car but then go on with what your doing when its over I will join you again. Again that put me in charge of the clusters.
3. When people posted something that worked for them, I researched it and if I felt it was what would work for me, I would get my doctors opinion and most of the time try it. It was trail by error.  It was agin putting me in charge. Soon I found that all I need was a cluster mask and o2, no hard drugs. I loved it and my clusters began to taper off . I became episodic ! To me that was a winning blow for me. The first year I spent without getting hit was what I thought heaven would be like. Durning this pain free time I traveled, went places with my family and had a blast, when I got hit again, I fought the anger, and fear, and continued my life as I had during the pain free times.
4. I also did for others, I volunteered my time, and worked with homeless, and other cluster heads, I just gave my time to others that needed it. Doing that made me feel good.
5. I have not had a cluster in years now, I think its because I took charge and the old beast can’t handle that.


I guess the main thing I did was take charge.  I thought I would share this with the new people, you old timers already know my story.

HappyElaine wrote on Nov 27^th, 2010 at 12:03pm:

i agree. strength is knowledge. for a long time i didnt have that. i can only imagine how things were 30 years ago with this condition.

your a pretty tough chick elaine. your prolly alot tougher than i am. but we will see next cycle that comes around. i feel confidant but only from the support of all of you

Elaine, your post is wonderful, and it should be a "must read" for all newbies here (and it wouldn't hurt a bunch of us oldies to read it either).

Thank you for posting it.  Wonder if it could be stickied on the newbie board?

Sandy

Callico wrote on Nov 27^th, 2010 at 8:24pm:

thanks for paying it forward brother. 

Elaine,
That was a wonderful post!  I agree with Sandy that it might be a good idea to ask someone to sticky it in the newbies board.

Here's hoping that you're staying around a bit longer this time!

love,
me