I first experienced what I found out later were cluster headaches in 1982. Painkillers had no effect; all I could do was lay down in a darkened room and wait, wait, wait for up to two hours until the pain finally faded away. What the hell was it?! With pain that bad, you think of anything (and really bad things, too). A sinus infection? Some problem with a contact lens? The Big C? After about two weeks, the headaches just stopped ... what a feeling of freedom, to live day by day pain-free! It wasn’t to last, unfortunately.
Several years later when the headaches returned, nothing could measure the depth of my despair. If they came back once, would they return again? And again? This was a terrible feeling: always waiting for the Pain, knowing it’s going to be bad, and there’s nothing you can do about it.
Now I’ve had headaches before, but the ones that came in cycles—clusters, as they were—were different. For one thing, the locus of the pain was always on the right side of my head, behind my eye. I read an article once about how prefrontal lobotomies were performed: an icepick (yes, an icepick) was inserted along the top of the patient’s (victim’s?) eyeball and into the brain, then manipulated about, severing countless connections from the prefrontal lobes to the rest of the brain. I remembered that article when the Pain hit. I could almost feel the cold, smooth, stainless steel shaft plunging into my eye ... and beyond.
Another feature of these headaches was that they tended to hit at semi-regular times; mine seemed to strike most often at about 9 in the evening. I would get an odd feeling of anticipation (called “prodrome”) and occasionally smell smoke ... then the Pain approached relentlessly like a far off thunderstorm. If I had any aspirin or Tylenol around, I’d take it, but the Pain Storm always arrived before pills could take effect. Worse, much worse was when a headache struck while I was sleeping (usually some time between 3 a.m. and 6 a.m.) because I’d awaken to a full-blown uber-migraine.
This vicious cycle of headaches would visit me for about two or three weeks, then return to Hell for two or three years. After the second round, I booked an appointment with a neurologist and was prescribed a series of palliative treatments which worked to various degrees. Let’s see, there was nasally-inhaled Ergotamine, Sumatriptan, and Prednisone pills, even a rental oxygen tank and mask that dulled the pain but didn’t remove it.
About oxygen—I was told that if I should have a sudden headache “on the road, just go to any hospital’s emergency department, tell them you’re having a cluster headache, and they’ll put you on oxygen for a few minutes.”
There’s another, more insidious side to these cluster headaches: when I’m in the midst of a cycle, the headache never really goes away. I can feel it there, almost like a living thing, a parasite or a stainless steel rat, sleeping behind my right eye. Sooner or later, it wakes and begins to rage, clawing the walls, throwing furniture, trying to beat its way out of my head. It senses that the eyeball is a weak point; it pushes and batters it, trying to force an opening to escape from. Often I’d like to help!
It’s hard to relate to those who’ve never had this type of headache, but a fellow sufferer’s words come close: “Imagine the worst “normal” headache you ever had. Multiply that by about twenty times, and center it on one point on the side of your head. Maybe then you’ll come close to understanding what cluster headaches really are.”
To whoever reads this, I’d just like to say thank you—it really is a relief, an unburdening feeling to share my experience with someone, whether or not they truly understand the terror and horror of a cluster headache attack.
There is pain, and there is Pain. This is Pain, and I want it to be gone!
And, knock on wood, the Pain may finally BE gone! It’s been over five years since the Steel Rat last paid me a visit, and thanks to a couple of tips picked up on the Internet, I may never experience the displeasure of his company again. I sincerely hope the following—I hesitate to call them “cures”—can bring relief to even a single cluster headache sufferer.
Water—Yes, water ... so simple yet so effective. Once a cluster cycle has begun, drink like there’s no tomorrow. Big tall glasses of water, at least one every hour or so. You’ll be visiting the bathroom fairly often, but so what—think of it as flushing the Pain away. I’ve found that pounding back the water not only lessens the Pain, it also reduces the time each headache lasts and can end a Cluster cycle earlier as well.
Kudzu—They may call it “The Green Menace,” but I call it a Godsend! When I first read about Kudzu extract capsules being used to combat the pain of cluster headaches, I drove right over to my local health food store and bought a bottle. The day I took my first Kudzu pill was the last time I ever had a cluster headache! When I was sure the cycle was over, I stopped taking the pills. So far, so good—and I hope it’s good for you, too!
Here’s to every day being a pain-free day, forever and ever!