12 February 2006

The Dragon Returns: another Cluster Headache cycle begins

Today I sit and ponder a curious question: “Who else in my little extended online social circle is blessed (as am I) to suffer the randomly cycling recurring trip through hell known as ‘Cluster Headaches’?”

Don't know what a cluster headache is? Lucky you!

Cluster headaches are a medically recognized group of headaches which (duh) usually occur in clusters — often around the same time every day for days or weeks at a stretch. They are marked by excruciating pain — women who experience them have described them as similar to and often worse than the peak pain of contractions during natural childbirth — centered behind one eye. An episode usually comes on with little or not warning, lasts 30-45 minutes, then disappears as quickly as it came. Common side effects include spiked blood pressure, sensitivity to light, sudden sinus drainage (usually from the side of the face where the pain is centered).

The fun part is this: medical science still has basically zero idea what's going on in these headaches, as yet no medication or treatment has been found which is at all routinely effective, and methods for preventing an attack are as likely as not to have no effect or even increase the likelihood of attacks.

The best part? Once one of these hell-storms on the mind starts screaming behind your eye socket, as you writhe and whimper in total fucking agony you also get to suck on the happy thought that "this shit is going to be happening routinely for the forseeable future."

Want to see what one looks like? Here's a movie (QuickTime, six minutes) showing some poor bastard in the throes of a full blown cluster headache episode.

I watch that movie and get a mildly queasy feeling, as I am all too fucking familiar with what he's feeling. In fact, I had an attack (not quite as bad as his, I think) last night. I was sitting there watching the Olympics, when I got what is (for me, at least) the scary early warning sign that The Shit Is A-Coming: I get a weird fluttering sensation in my right ear-- like a butterfly trying to get out of my ear canal. At that stage I now know to start battening down the hatches— I ran upstairs and made sure the kids were occupied and told them they were NOT to come talk to daddy for the next half hour or so unless they heard bloodcurdling screaming like he as hurt, and then I drank basically as much water as I could stand, I tossed back a handful of Advil (which might as well be Tic-Tacs or marbles for all the good they do—I have never found any medicine which helps at all), put on my shoes and headed into the backyard to pace around.

For 45 minutes I stomped around my backyard in the cold, in the dark, whimpering, tears streaming down my face, fighting the urge to pick up something—anything— and just... smash... destroy... rage. Any woman who's gone through childbirth (or man who's watched it up close and personal) knows the sensation: the pain is just so damned all-consuming that you have this deep-down reptilian instinctual urge to tear into something.

Headache sufferers sometimes use the "Kip Scale" to quantify the pain they are experiencing:

KIP SCALE for describing Headache Pain

Pain level 0
No pain, life is beautiful

Pain level 1
Very minor, shadows come and go. Life is still beautiful

Pain level 2
More persistent shadows

Pain level 3
Shadows are getting constant but can deal with it

Pain level 4
Starting to get bad, want to be left alone

Pain level 5
Still not a "pacer" but need space

Pain level 6
Wake up grumbling, curse a bit, but can get back to sleep with out "dancing"

Pain level 7
Wake up, sleep not an option, take the beast for a walk and finally fall into bed exhausted

Pain level 8
Time to scream, yell, curse, head bang, rock, whatever works

Pain level 9
The "Why me?" syndrome starts to set in

Pain level 10
Major pain, screaming, head banging, ER trip. Depressed. Suicidal.

My little funfests seem to cap out at level 9+ but never go all the way to max 10. Cluster headaches are sometimes referred to as “suicide headaches.” I've never been suicidal during or due to one of these attacks, but I am not at all surprised to hear that there are folks who slide just a few ticks further. As seen with people who leap from burning skyscrapers, sometimes in a crazed panic a human will consider ANY damned way out of the pain.

Yeah, it hurts that bad.

I started getting my clusters in my late 20s. The first time was wild—at first I though “wow, so this is a migraine, huh?” (note: cluster headaches and migraines do not seem to be at all related). I just had this sudden unexpected roaring air raid siren of pain behind my left eye, and 40 minutes later it... just... went.. away. Like a hurricane blowing past. What got scary was when the same thing happened again pretty much on regular schedule every day for the next 10 days. And THEN, the cycle stopped. I was to the point by then that I was already starting to plan my daily schedule around the attacks: trying to make sure that I was going to be at home, not in the car, not in a social situation where I would suddenly morph into a fucking werewolf right there in the middle of the scene. But the attacks stopped.

"Yay!" I thought.

Then, about two years later, I get a fluttery feeling in my right ear, and ten minutes later I am curled into a fetal ball on my bed, feeling like I have a 300 pound man balancing atop a golf ball on the backside of my left eye socket as he blows a tugboat horn continuously for a half hour. Again, the cycle of attacks lasted a little more than a week, then just stopped. Again a few years later, here they come again.

And this has been my pattern since then: a week of daily bouts with the Gates of Hell trying to build a toll road through the inside my brain, then 24 or so months of calm and quiet.

Over the years I’ve done some reading and researching, looking for anything which might help reduce the frequency or severity of these episodes.

Diet seems a huge part of the puzzle, at least for me. I notice that I seem less likely to experience a cycle if I try to not routinely over-indulge in caffeine, nitrates, and other weird chemicals which might ramp up the heart rate and BP. A few years ago I switched to decaf iced tea as my daily drink of routine and have noticed a definite lessening of both frequency, length, and intensity of attacks. When the cycles start, I pretty much swear off all alcohol, red wine, sausage and hot dogs, trying to stick to healthy stuff as much as possible., Like many, I’ve found that consuming huge amounts of water during attack cycles seems to help shorten the period and intensity of the attacks. Walking around alone in the dark seems better than laying alone in the dark, but in no situation I have experienced is it all comforting to have anyone with me when I am in the grip of a cluster headache attack—I become genuinely concerned that, blinded by the pain, I am going to throw a punch or attack someone like a frightened animal.

Some people claim that oxygen helps (the man in the movie linked above can be seen sucking on an oxygen bottle), but I’ve never tried that. Cold compresses on the neck and/or forehead sometimes feel good. I’ve found that if I treat it like a birthing experience, I can at least ride the pain and not be totally flattened by it: breathing exercises, mild distracting exercise, understanding that there is a far shore to this ocean, and you will get there if you just hold on and don’t totally surrender to the pain.

What’s wild is that so few people seem to know about these bad boys. Whenever I start describing the experience and sensation, there are a fair number of people who think I am making this up for some reason, or that I am exaggerating, or that I am over-dramatizing some regular more familiar “normal” condition like migraines (interesting fact: migraines seem to affect women in roughly 4 out of 5 cases, whereas cluster headaches seem to affect men in 4 out of 5 cases).

These things are real, and they are no exaggeration, and apparently 0.1% of the population gets to enjoy them.

So I guess I’m just a lucky guy.

So if you encounter me at some point in the next few days and I seem as if I am ready to explode in a homicidal raging fit, it’s nothing personal. Really. And I’ll likely again be right as rain in 45 minutes or less.

‘Til it starts again the next day.


suzbays said...

I'm sure you've been down every medical route possible but it just so happens I was talking to a dear friend whose son is having severe headaches. He went to the doc, had an MRI and lo and behold, he has a cyst on his brain. And it's the kind of cyst that can press on the/cause pain on the optic nerve. It's most likely benign and she says they're relatively common. Her son is 27. She said the doctor described the cyst's location as being right between the eyes. So, uh, I guess I'm asking if you've had an MRI lately.

Aside from that, I'm sorry for your pain. When I had my pituitary adenoma, I got headaches on the right side of my head. The headaches were like a hand with five fingers of pain. Thankfully, advil and sleep helped tons. I found out about the tumor when I was trying to get pregnant. Ironically, I got the tumor from taking the birth control pill when I was trying NOT to get pregnant. Heh. Life's a bitch.

I hope you feel better soon!

Heidi said...

Oh man do I feel you. I get them too. Is it a writer's curse? I've had trouble charting mine but they do seem to be linked to: too much sugar, not enough water, too much excersize on no food, bright sun in my eyes, and sudden barometric changes. We should probably both get MRIs. A cyst might explain all my drooling. Kidding. I raise my advil in your honor today.