Posted by GUGI (204.116.181.72) on November 28, 2000 at 09:53:51:
It's been over a year now I guess. I've lurked in the good shadows since a gf recommended this site to me. She thought it would be a good place for me to be because my headaches had changed and she thought I could write here about them. I never did. I always wrote some place else about anything else except the headaches if I could help it.
I'm a little confused right now.
Another friend sent me the url for this site. I cried when I got the url in email. I'm not sure why I cried. Maybe because of the deception. Well, not deception really, but more like the omission. Maybe I cried because I was trying to understand his clusters. He's not like me. I can't understand his. Hell, I barely understand mine.
I'm being confusing now. Let me start over.
Hello.
I've had migraines for ... damn, I guess it's been almost 13 years now since I was officially diagnosed. A few years longer when I think back on it though. Two or three years ago, my migraines changed. Changed a lot. It scared the hell out of me. I thought for sure my brain was going to just burst or something inside my skull. I talked to a gf about the changes. She convinced me that I really needed to go to the doctor since they were out of the norm and they were coming back to back and other things had changed with them. I had never heard the term cluster until then. I went to the doctor. I got a referral to a new neurologist since I had moved away from the two I had went to before and it was too far to go to either of them for an appointment. A lot like DJ I guess, I ended up hitting the net, trying to find more information. There wasn't a lot out there then. I knew of only one other person for sure with clusters. He was my best friend. I tried talking to him about it. He yelled at me. He talked about how it wasn't possible because I was a woman. He didn't believe me. He was so sure that only men had clusters and if any women, they were a very small percentage. I didn't call him to talk to him about it to get read the riot act and treated like I was making it up. That conversation really stung. I never brought them up to him again, not where mine were concerned.
Here recently he took a bad turn. One of the first things I asked him was if it was clusters starting again. I knew what time of the year it was. He said no. And I think he probably meant it then, but he's been my best friend for many years now and I know when I see some things in him changing, even if he doesn't. He finally realized he was into cycle. I wrote him. I told him that I wanted to understand. See, he has migraines too, but his migraines are nothing like mine and vice versa. His are much worse and what works for mine most of the time, doesn't work at all for him. (Imitrex injections) I didn't ever know the details of his clusters except that I knew he cycled seasonally with them and I knew they were severe, but I still don't even know how many he will have in a day. That was one pain experience he would never share with me. He'd never tell me the ritual he goes through with them.
Anyway, he sent me the url for this site. It's been bookmarked in my favourites for a long time now. I visit often. I read. I look for new information. And then I move on and try not to think about them.
I see my friend has posted now. In a way, I feel invaded because I have lurked here as a second home for so long. I should feel happy though because maybe now he will really start to open up about his pain.
It seems so strange to me that he and I have discussed pain before and what we do... distractions.. anything to avoid thinking about it, to try not to feel it... but in all this time there has been a big gap between us because he didn't know. Or didn't want to know that I do understand at least to some degree. I understand to one degree or another like everyone else here does. I've seen people come and go, and all of you always understand. I hope this is a good place for my friend.
And the ritual... I wonder if his ritual is anything like mine. I wonder now especially how much we have in common. I wonder if his spouse watches like mine does when they come and I'm banging my head against a door frame or outside in the yard where the limestone cap peeks up through the dirt and grass. I wonder if he paces clutching and clawing at the left side of his head keening "Why me?!" and starts thinking that maybe gouging that eye out would help. I wonder if he tries to crush his own skull like I do at times because that pressure actually seems to help if only for a little bit. I wonder if he takes a hot shower and five minutes later an ice cold shower and five minutes after that another hot one and keeps going through the cycle until the water heater can't keep up through the long hours of the night. I wonder if he finally slips into an exhausted doze only to wake up with his whole body tensed because the pain has come without warning and the only thing familiar besides the pain is the fact that the clock is always between the same two hours of the morning when it hits again.
I wonder if he will ever understand that when I told him he wasn't alone -- I meant it empathetically.
Most of us don't have family with CH. Most of us don't have friends outside of this site that can even hope to understand.
The "denial" part of the subject line.. I guess I didn't get to that. I have been of the mind (or out of my mind) that if I deny them, then they have less power over me. It doesn't always work. It rarely works. But it sure does help my attitude most of the time. When I think about them especially in the midst of a cycle they just feel worse. Maybe that is all psychosomatic but even my friend taught me how strong the mind can be, even over the body. Maybe it's my own placebo. Maybe I'm the only one that does it. I kinda doubt it though.
It's real hard to not think about pain when you're in pain, but when it just kind of bleeds off of me the best thing I have found is to just GUGI right then and there... give up, give in ... just relax if I can... easier said than done. It helps though. It really does. It was just like what they taught me in Lamaze about the fear-tension-pain cycle. If I stop worrying when the next one is going to strike, then I can sometimes keep it at bay. Sometimes. Other times I'm glad I don't own a gun after the fact even if I'm wishing I did in the moment.
I've lost all faith in doctors, neurologists especially. I have a low tolerance for being a guinea pig. I have a low tolerance for having a doctor sit across his desk from me and suggest one drug after another and then going home and reading up on it on the net from the pharmaceutical company and finding myself asking, "Is this jerk trying to kill me?" My friend I guess hasn't given up on them though. I ask him about what's on the market now and what works for him and what doesn't. I trust him. I don't trust doctors.
I stay off the narcs for the most part. They don't stop the pain for me. They just make me stupid and emotional so I find myself being unable to convey or express to my spouse how it is hurting or how severe it is or what I need. I just cry a lot more and thrash and bang.
Does anyone else hide their pain? My mother wrote to me last night. She asked when this headache would end. Every time she has spoken with me in the last... how long has it been?.. few weeks? ... and asked, I've had a headache, one coming on, or was just seemingly tapering off. She thinks it's one long headache. She knows it's not a migraine because I'm not holed up in the dark with Imitrex in hand. I don't tell her. I don't tell her because she'll just annoy the crap out of me to go back to the doctors that can't do anything and that will just stress me more, doubly so, and that will just make things worse.
Just shut up GUGI.