Greetings fellow clusterheads

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Posted by Jim Hendrix ( on March 11, 2000 at 18:31:11:

I have just discovered your board and have been reading the many posts all day.
I have had clusters for 30 years starting at the age of 20. I am now 51. I too went the whole gamut of tests, drugs and knowing no other person who had clusters except for me.
My children are now both grown and have children of their own. But it seems like only yesterday that my wife was carrying them out to the back seat of the car still asleep in the middle of the night to take me to the ER when my cluster would not go away and I was screaming and banging my head against the wall.She would drive me to the ER and we would wait in the waiting room for hours . Well she was in the waiting room. I was usually in a dark bathroom rolling back and forth. Finally they would ask me all these questions while I was moaning for something to knock me out.
Mine started while my wife was pregnant and everyone laughed that I was having morning sickness too or stress from her being pregnant. After 3 weeks and losing 15 pounds my father came over, saw me and called a doctor friend of his. The next day the headaches were diagnosed as clusters. I was so relieved that there was a name for it. Although I knew no one who had it or had even heard of it. I began taking Cafergot. Too slow to work. Cafergot suppositories worked better. I would get them twice a year initially and they would go 3-4 weeks at a time. Over the years I have tried Sansert, Verapemil,and lithium. Some worked partially but were not dependable.
I have had withdrawel from the Cafergot and sansert when a bout was over and that was no fun. Like everyone else, I tried to ascertain what I may have been eating or doing or the time of the year or lack of sleep etc etc, trying to figure out what I could do to keep them away but to no avail. But enough about that. I now take O2 and it knocks it away 99% of the time. I also take 1/3 of a cafergot suppository at the same time. I have a large tank next to my bed, a smaller one at the office and one in my car. I pray everytime that a new round hits that I don't wreck my car with that 02 tank in it.
My headaches are much more manageable now than 30 years ago and they have changed somewhat whuch was the reason I started this post to start with.
About 10 years ago, about the time I started using 02 actually I noticed that they went 4 months and I was scared that they were becoming chronic. But they quit and I did not have one for over a year. Then they came back and lasted 5 months but I had 18 mos without one. The next time they again were 5 months and I was headache free for 2 years. Of course each time I am hoping I am outgrowing it. Well it has now been 3 years since my last one and I am feeling the shadows the last 3 days. Each night I am awaken within 1 hour from the time I fell asleep with a mild one. I set up and it goes away in 5 minutes but the last two nights it has awaken me about every two hours with a slight one. I usually have two during the day but I have had no feelings of having one in the daytime yet. So it appears that I am about to begin another round. So it may be time to go set up my war wagon with 02 and cafergot. During the day once I feel one coming on, if I can get to the 02 right then, at 7-8 LPM with a mask, it usually backs down in 10-15 minutes. At night is longer sometimes because by the time the cluster has awaken me, it is full blown and may take 20 minutes to back off. So, to make a long story longer, it appears as I am getting older, the headaches are going lonher but the time in between them are much longer, from 2 a year like clockwork to 3 years now. Who knows what this cluster will bring. Who knows, maybe the slight ones during the night will be all I have this time. I will keep you guys posted. If only we had had something like this 20 years ago I could have saved hundreds of dollars on useless drugs and tests.
If I can be of any service or clarification of my ramblings feel free to email me.

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