Life with clusters, why I back OUCH!

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Posted by Elaine ( on March 27, 2001 at 09:05:30:

I went for many many years before I was told I have clusters! The first attack I had was so scary, I just knew I was dying. I woke up screaming from the pain. My now ex even slapped me that night , I guess he thought I had gone nuts. I had fallen a week or so before then. The doctors thought that was the cause. I was put on heavy drugs. Then I was told it was Neraguia. I was even placed in a Mental hospital for three months given vilum and God knows what else, The worst part I was given shock treatment 16 of the damn things. Those Headaches were only in my mind they said. Lost a lot of my memory from my youth from that. Plus that stayed with me for years. That one diagnoses helped my mother take my only natural child away from me when he was two weeks old. I was losing between the court system and the doctors. They took my natural child away, but gave me my three adopted children to care for. (Go Figure) The tears cried over that!
Then they said it was my teeth, I had all my top teeth pulled. The trips to ER were really fun, they treated me like a drug addict. They were so mean.
Then there was the doctor that gave me so much dope, I couldn’t stand up, and I would throw up. When I told her I was throwing up her reply was, “ She was not going to give me any more medication if all I was going to do was throw it up!” Like it was my fault. Then there was another time a friend took me to the doctor. I did not have any insurance and very little money, when the doctor saw me and I got ready to leave, the doctor said, when you pay me I will give you your prescription. My friend paid for my visit so I could get the medication. For many years I fought this damn pain, thinking all along I was going to die, that something was so wrong and the doctors were over looking it. I use to wonder what would happen to my wonderful children if something happen to me. There were so many times, that I had no medication because of no insurance. Then I got to the point screw it, taking that dope was not helping and it just made things worst, so I just learned to deal with it the best I could. Hiding in a room rocking in the floor for two some time’s four hours. Having clusters back to back for as long as 24 hours, thinking I will surely die, that my brain would bust from the pain.
Then when I did finally find a doctor that gave it a name CLUSTERS, I was told there is no cure. 02 was all he knew about. O2 helped but did not take the pain away. Every six months I would call that doctor and ask have they found any new medication for clusters yet, always the answer was no. There were no books about clusters. If I did find anything about cluster it was only a paragraph. It wasn’t until I found this site and the information here that I found true help, and I found out I wasn’t crazy or alone. I have been fairly pain free for months now, with only one or two clusters breaking through from time to time. Not sure if I have out growing them or I have found the right med for me.
The road has been a long and hard road, how I survived I am not sure but I did. I took care of a family worked, prayed, and never gave up. There were so many times I wanted to tho. When I missed my kids in a play, or I had to hide at work. I had to turn down some fun times to deal with a cluster, with out meds could last for hours. I had one dear friend who had Bad Mirgrains she was an exceptional friend. I could call her and she would come watch my kids, and so many times she sat in the floor with me holding me and rocking me, cause I was to tired to rock myself so she rocked for me. I HAD to work I HAD to go on sometimes alone. Its funny when you have someone that depends on you how much you can with stand. Its strange how we all get up and go on day after day. I am glad I never gave up. I am glad my children watched this and learned that people in pain is REAL and nothing to be taken lightly, they learned compassion from this. My son he never understood why he didn’t live with his mom, and I don’t guess he ever will. I got over it all except losing my son. Why should any of us have to lose anything because of clusters. That’s why I will stay with OUCH and that’s why I will work every chance I get to fight to get the word out. We have a right to be pain free, we have a right to be heard. I don’t want their pity, cause I don’t needed it, I want them to understand our pain enough to give us the med. we need to live a normal live. No one person should have to lose anything to get it. We should not have to beg for treatment. We should not have to hide from embarrassment. We should be understood and excepted as people with other illness are understood and excepted. So I will fight for as long as it takes. Join OUCH make them hear us. Join a committee! If you can’t do any of these two things send in ideas. Just take the time to print out the stuff on the OUCH site and send it to Doctors, hospitals any where someone might read it and take a interest . Use this message board for what it is. Talk about the pain, talk about the joy in between attacks. Talk about your heartaches. Help others who are new at fighting this pain when they come here. Show then how we cry, how we laugh, and how we survive. Lets stop all the fussing , virus sending and hate mail, less work together to make the road easier for others that follow. If someone should come here that might can help us, lets show them that even in the pain and sorrows we have been through we can still hold our heads up high!

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