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.

Great post Elaine!  Too often we see people who let this beast run their lives instead of the other way around.

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

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.

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

Great post, Elaine....and a really good one for the newbies to read and learn from.

Oh, how we've missed you around here! :)

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

Johnny, you have NO idea, but yet she is a real softie.  She wasn't called Lady E for nothing.  If it weren't for her and a few others there would be no OUCH, and I probably wouldn't be here today either.  When we had the first Davcon several years ago and I heard Elaine was going to be there I decided I was going to drive 2 1/2 hours to get there, stay 45 mins, and drive back home.  I just had to meet the lady that helped give me back my life.  There were about 5 people there that had made a real impact on my life, but Lady E was the one I had to meet.  My life has been the richer for it.

Elaine, we do miss you around here.  I understand why you don't have the time to put into this board you used to do, but we still love ya and miss ya!

Jerry

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

I just had to meet the lady that helped give me back my life.  There were about 5 people there that had made a real impact on my life, but Lady E was the one I had to meet.  My life has been the richer for it. Jerry

thanks for paying it forward brother.  ;)

Elaine,
Thank you that was a great post!!!!!Helped a lot
Jenny!

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