Cluster Headaches

Headaches...

Lets talk about these things. I've been suffering from these things called 'Cluster Headaches' since mid college, and...given that pain is inspiring, I'd like to put the experience of a Cluster Headache into words. I'm not looking for any pity or anything, but since I have been experiencing them lately, I'm going to document how they go down, for posterity's sake, and for the sake of any poor bastard who happens to google "I want to drill my brain out of my skull" or "searing, blinding pain in my left eye". You are not alone.

They started sometime around my first year of college, or whenever I still had my wisdom teeth, and needed to get them out. A few months from my appointment, these headaches started. I initially told my dentist that they felt like the wisdom teeth on one side of my head (this is important, its only ONE SIDE every time, always the left) were spinning around, placing themselves upside down, and then screaming inside the walls of my gums. The pain was localized around the upper jaw, radiating up into the front of the head, behind the eyes, with a huge junction of pain right around the temple.

At first, I didn't know what to do besides take ibuprofen and tough it out. But every day, they came back. They would wake me up at night from the deepest valleys of my sleep cycle, leaving me confused, sweating and exhausted in my bed at 3 am. I always thought that any kind of internal pain that was enough to drag you out of your Delta sleep cycle was some kind of monster indeed (pardon the Metallica parallel). This wasn't an alarm clock or a loud roommate that I could kick out the window or yell at, it was my own head, grabbing me and throwing me angrily into the land of consciousness with what felt like an excess of fluid in my head.

That was another thing about it. I felt like there was a kind of pain fluid in one side of my head. I felt that this fluid was liquid needles and sickness, perforating every thought with tiny billions of stabby, angry jabs.

Eventually I saw a massage therapist by accident. He told me about squeezing my head as hard as I could during a headache, "move the fluids around", he said. This became part of my arsenal. If you ever see me grabbing my head with both hands and squeezing it like its a garlic press, hand me some ibuprofen, I'm in rough shape. This squeezing method is crazy...and when I do it, I SWEAR I feel the fluid drain out into my mouth, through the tiny spaces in my gums. Of course I am just imagining this, but this kind of imagining is therapeutic. For a second after I squeeze it feels better, like I popped a brain blister, and the fluid that comes out tastes like how I imagine gun metal would taste.

The pain is something between a migraine at the low end, and those headaches the main character in Pi gets on a bad day.



So I've been to some doctors. First they told me it was my wisdom teeth. It wasn't. Then they told me I chewed too much gum. I quit chewing gum, and true, for awhile if I chewed a piece I would get a headache, but I don't know how much I buy the whole gum chewing thing. Then, my dentist said I had TMJ, a jaw disorder that causes way too much tension in the jaw. People with TMJ get wicked headaches that wake them up in the middle of the night because they are grinding their teeth. "Sounds like me", I said.

So I got a mouth guard...This helped for awhile, but not because the mouth guard was in the way, but for another reason I figured out later. They still came though.

I used to lie down on a nice day on the quad at college, looking up, both of my hands clawing up chunks of dirt underneath me. This wasn't all that therapeutic, but what I was doing to the grass was basically what I would do to the left side of my head if I was Grendel, or crazier. I also used to lay my head on my mother's shoulder and breathe deep...this when I was lucky enough to be at home for them. Moms are human therapy, but even she couldn't make the pain go away.

Then I saw a chiropractor in my home town. This guy was a fuckin quack. I was also having trouble with my wrist at the time, so he laid me down and shot my wrist with a low-beam laser. A LASER! Of course it didn't help, and when that was done he told me I was finished. I asked him about my head and he said, as he walked away, "uh you are probably just having some pain come up around your neck from your wrist..." and trailed off without looking me in my face.

So that didn't help.

See, the weird thing was that I would go through these intense periods where I would get them every day for about 5-10 days straight. In the course of these days I would go see some doctor, they would do something, and they would go away.

After doing some research, I've discovered that what I have can only be "cluster headaches". They are called that (also called "suicide headaches", but for different reasons) because they show up a few times a year in "clusters" of occurrences. They happen intensely for 5-10 days, only to go away again for an extended period of time. They never went away because of something we did, they went away because that's what they do. They fly south. No one is really quite sure why they happen, all they know is that they occur in something like 1% of the population.

The few, the proud, the bleeding from their left eyeball.

Thats another thing. When they are really bad, my eye will start to water and waver. Recently, after hiding in a conference room at work fighting off one of these things, I came out to ask my boss if I could go home. He took one look at me and said, "there is something seriously wrong with your eye". Which was good to hear, or it was good to have some visual (pun!) evidence to indicate the storm going on inside my head.

This proof was great because many people kind of brush it off. "Oh man, a migraine? I get those all the time, they suck, huh?". Or, "You'll be fine, just take a few ibuprofen and lie down". Migraines don't scream loud enough, ibuprofen doesn't work fast enough.

The point is that, no matter what I do, they are going to go away in a matter of days. Nothing really treats them besides drugs. Its not the teeth, not the gum, not the TMJ. They. Just. Happen. With no explanation whatsoever.

There's a book out there, "The Contortionist's Handbook". Its basically about a guy who gets headaches that sound a lot worse than mine. He is a liar and a counterfeiter, and every time he gets a headache he needs to find a hotel room, black out all the windows, unplug the phone, load up on pills, and slip into a coma for about 2 weeks until he comes to. When he does, he always finds his most recent fake life in shambles, and has to invent a new identity to carry him until the next headache. I'm not quite in his position, but the contortionist and I definitely found some common ground.

So I made some real progress last year. I was going through some terrible things with my girlfriend at the time (which is an indicator that they are most definitely triggered by stress) and sure enough, I was run over by the worst bout of headaches I've had to date.

Nothing could help me. She tried, bless her heart, but it doesn't really matter what someone else does or says...this isn't like a stomach flu where chicken soup, saltines, and rest will make it go away. Nothing tangible makes it go away, as time is not tangible.

So I went to my doctor again, he prescribed three medications - two of which made me feel like I had a wet towel wrapped around my head. The third actually helped if I took it at the VERY first hints of an attack, but ONLY if I caught it that early. He also referred me to a neurologist who concluded that there was nothing physically wrong with my brain or nervous system.

Soon after, I was back home in Minnesota, and since I tried everything else, I went to the family Chiropractor - a "Gonstead" chiropractor. Gonstead seems to me to be one of the most logical and practical type of Chiropractic "Science". He concluded I had a pinched nerve, and after some dramatic popping and cracking of my neck, I was convinced that I felt better. My headaches were gone.

4 days ago I realized this wasn't the case. The cluster came back, as it is prone to do, leaving me drilling into my temple, waking up in the middle of the night to find veins in my head I didn't know I had, loading up on Ibuprofen and Butalbital, and sleeping way too much.

I am not the only one going through this apparently...as I've found this site for other "survivors", and their testimonials are right, and I DEFINITELY don't have it as bad.
http://www.clusterheadaches.com/

The horrible thing though, is that in about 6 days this will be a mere memory. I will be able to go on with my life as if nothing happened, until it happens again.

I really do not want pity here. Trust me, I'm not bitching about my headache I got today because I drank too much coffee or anything...I wouldn't waste anyone's time with that. This is therapeutic, to write about it, to finally put it into words.

If you are going through something like this, go to your doctor. Tell him what you think you have. If they brush it off as tension headaches or migraines, stab them with a tongue depressor and go find a second opinion. There are ways to deal with this, and after 6+ years of being lost, I'm starting to figure out a few ways that help.

So, with that being said, I'm back to work. I plan on eating buffalo wings tonight and relaxing. Yes!

Have a great day!