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.”
