my first ch

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Posted by Teresia ( on December 16, 2001 at 09:57:29:

In Reply to: My Very First Cluster posted by Jack on December 14, 2001 at 17:56:04:

My first episode, as that is what I am calling them, was when I was 14 years old. It was excruciating. I thought I was going to die, and was wishing I would. I was at home, thank God, and my mother, God love her, was doing everything she could to help me. I started to bang my head on the tile floor, and was crying like a baby. She finally took me to the ER, where they said, in front of me no less, that they thought I had a brain tumor that was bleeding causing the intense pain. They gave me all sorts of x-rays, and found nothing. They put me on some heavy duty pain med, Morphine to be exact, and sent me home. Well the Morphine killed the pain, but it made me very sick. Every day, as much as three times a day, my dear mother would run me back to the ER, where they gave me a series of pain injections. Which actually did not get rid of the pain, but I didnt care if you would have cut off my arms when I was that doped up.
Now, they are back. I go into remission for 9 months of the year, and then have the episodes the other 3 months. Now my insurance co. will not pay for my meds, or rather, they will only pay for a months worth, which to them = 6 tabs. I am not on any narcotics, just Zomig and depakote and pamelor. It is really frustrating, as we can not afford to pay for them out of our pockets. I have learned to deal with the recurrent episodes better now that I have had them for 21 years, but, some of them are getting more intense, where I think death would be better. Now, I would NEVER kill myself, my faith is too strong and I have a wonderful family who needs me very much.
I guess I am just venting, or complaining. I know there are people out there who are worse off than I am, but, when the pain hits, I can't bring myself to think about that, just me and wishing and praying that "this one wont last too long, and the pain will go away". I have had the atacks last as little as 1 hour and as long as 5 or 6 hours. If I have to have them, I would much rather have them for an hour.
I always wake with these episodes. I take my med as soon as I wake,but sometimes it is too late, as I am already into a full blown attack. My ch's are on the left side, behind and around my eye. My eye waters, gets very red, and droops as if I have had a stroke. The pain, if I can describe it in words, starts out kind of like it is coming thru a tunnel, and emerges into the sunlight with the fury of hell. It feels as if my head will implode, and my eye will pop. Lately, my teeth on the left side hurt during an episode, I do not know if this is common or not. Once the "train" emerges from the tunnel, its as if acid was poured into my eye. And is eating it from the inside out. When the pain starts to ease, it is as if the "train" is receding back into the darkness, taking the pain from my head, like it is running out of the back of my head like a faucet.
I know that is not the best description, but, I know you all understand what I am saying. As we are all kindred spirits as we suffer through these awful, intense, excruciating Cluster Headache Attacks.
I am sorry for being so long winded, but, I have no-one to talk to about these who understands what exactly I am going through. They all try to help, but, can not actually understand the so very intense pain.
Pleas feel fre to e-mail me, as I would love info on message boards, and a friend who is going through the same thing. It is hard to talk to someone, and make them understand, who has never had them.
Thanks agian for letting me vent.
Your cyber friend trying to deal with one day and one episode at a time. Teresia Paape

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