2009-08-23 - 4:09 p.m.
The incredibly long (and probably boring) cluster headache entry!

So, cluster headaches. I know I've talked about them before, but I need to brainstorm what I'm going to tell my employer this time around. I think I need to talk to my assistant principal, my department chair and the principal this year.

Here goes. Cluster headaches are a neurological disorder. The word "headache" in the name of the disorder is fairly misleading because these are not like any other kind of headache. Besides, the word headache indicates to me that this is something you can take two Advil for and then work through until it's gone. Definitely not the case with clusters.

CH are not migraines either. They are in their own realm entirely. I get them several times a day, they last for about two hours a piece and the time period when I get them can last anywhere from 4-13 weeks. One of the reasons I get so worn down during a cluster period is that I usually have clusters that wake me up at night. The pain of a cluster headache is so that I cannot lie down during it and therefore, cannot sleep through one. In fact, because of how cyclical clusters are (I get them at the same time each year and at the same time of day when I'm in a period) and how often they wake suffers at night, they are often called "alarm clock headaches". Another descriptive name is "suicide headaches" (because they make people want to kill themselves, of course), but I don't think that is something I want to go over with people at school.

I've tried to think of analogies as to what a cluster headache feels like. I've read online that it's "the worst pain known to the field of medicine" and that "it's worse than labor pains". I don't know about that, but it is definitely the worst pain I've ever experienced. It's stop everything, grab your head, kick your legs pain. I can hardly talk when I get one. People with clusters tend to develop very crazy looking ways of dealing when they get one - some bang their head on walls, some hit themselves, some people fist their eyeball (the pain is concentrated around the eye - lots of pressure) and I've even heard of a guy putting his head under a couch cushion and then having his wife sit on it to apply pressure. That last one makes sense to me, since outside pressure seems to be the only way I can distract myself. My "favorite" (if there is such a thing) method involves pinching and pulling - I'll grab my eyebrow and the skin around it with my nails and just pinch and tug for all I'm worth. It's a miracle I still have an eyebrow at the end of a cluster period. If that's not distraction enough, I'll go back to the old standby of pushing the heel of my hand into my left eye socket. The pressure feels good (good's not really the word, since I'm still in agony, but the pressure does help) for some reason.

Okay, so my analogies for what a cluster feels like:

1. This is honestly the image my mind bring up when I think of the pain: a little demon is perched on my nose and has one foot braced against the sinus under my left eye. He's wielding this giant meathook that he's punched through my skull right above my left eye and now he's trying to pull the tip back out through my eyesocket. Really. That's what it feels like - there's stabbing pain in my forehead, the top of my head feels like it's getting stabbed too, my eye feels like it's being pushed out, my left eye is watering and sometimes my nose is plugged on that side. After two hours, every one of those symptoms disappears. It's amazing how I can go from completely fine to complete agony and back to fine so quickly.

2. It's like an ice cream headache or a brain freeze. Except instead of lasting a few seconds, it goes on for hours.

Now, when I say I've got cluster headaches, some people respond with "Oh, yeah. I had one of those once" or "I totally know how you feel - I get migraines" or "A headache? Take some Advil". Okay, I try to be patient. I know this disorder is rare (affecting .1% of the population), and so people don't have experience with it, but still want to comment so they just go with what they know. In response to the first: No, you didn't. Clusters are like Lays potato chips - you can't have just one. To the second: Besides that fact that both involve pain in the head, migraines and clusters are nothing alike. To the third: Fuck you. Okay, that's not polite, but honestly, you think I might have tried that? Medication has very little effect on clusters. I take very powerful, expensive drugs and even they can't cut it most of the time, especially since once the stupid thing is in my blood system, the cluster is already gone.

While I try my best to function normally during a cluster period, it gets very difficult after a couple of weeks. In a 24 hour period, I'll have 6 clusters (at the peak of a cycle). If each headache is two hours (that's my normal length, but some are shorter and some are longer), that's twelve hours of excruiciating pain a day. And it's not like they come back to back, or just at night. It seems like they're spread out just perfectly to ruin anything I want to do with my life. I can't sleep for more than two hours at a time usualy and they completely disrupt my schedule at work. I do my best to suffer through the ones that I can, but what I want most during a cluster is to be left alone. That way no one has to witness me at my absolute lowest. And afterwards, especially if I have to take a pill, I'm exhausted.

I'm not trying to get pity, or trying to get out of doing my job. I love my job and absolutely hate that this disorder prevents me from doing my best at it. Cluster headaches are not a fatal syndrome, unless a sufferer is taking the wrong medication or they choose to take their life. There are times, bad times, during a cycle when I really wish that it was fatal.

One more thing about clusters - I can usually tell when one is coming on. Cluster suffers get these things called "shadow headaches". A shadow, at least for me, is a pressure, a heavy, dull pain in my head. It feels a lot like a normal headache, but it's just on the left side. Shadows usually bloom into a full blown cluster, but sometimes they'll just sit there all day and threaten you. It's incredibly annoying.

What do I do about my clusters? Well, during a period I take two kinds of medicine: a preventative and an abortive. If I'm lucky, at some point in the cycle, they'll put me on a steriod and I'll feel fantastic for a week or so. I don't consume caffiene or alcohol. I drink at least 8 ounces of water during each of my waking hours. I go to sleep at the same time each night and avoid naps on the weekends (sometimes I'm afraid to go to sleep because I know I'll just wake up with a cluster). Other than that stuff, there's not much I can do.

Okay, this was a looooooong ass entry. I doubt anyone has read it, but it really helped me sort. Especially since I feel like I missed a lot of information. Okay, I only have so much time that is usuable to me anymore, so I should really go use this time to grade and do laundry.

And I've got a public, anonymous blog now that I'm going to be tracking my clusters with this year, so hopefully that'll mean less whining over here.