THE CLUSTER AND I

Today, I'm hale and hearty. A little cranky from catching up on the massive sleep loss of the last month, but feeling good. This has not been the case for the month of March, and as much as I hate to talk about infirmity, it's probably time to shed some light on a health malady that's been part of my life since I turned 17.

The name of this affliction is ridiculous: Cluster Headache. In no way can what it is called convey the excruciating, debilitating pain involved. Most people assume any headache not designated as migraine can be easily taken care of with over-the-counter remedies advertised on TV and radio, ad nauseum for 70 years. Excederin, Bufferin, Anacin, Tylenol, Advil, good old Bayer Aspirin are all like an umbrella in the teeth of a hurricane when going up against the cluster headache that one out of five thousand human beings suffer from.

The "cluster" represents the rapidity of flare-ups that occur during a cycle, or period of time the sufferer will have these attacks. For example, the intense headaches will start in one's sleep, last an hour at the rate of maybe one or two flare-ups a day, everyday, or as isolated as once a week, for up to a month or eight weeks, annually, every two years. In my case, every three or four years. Some poor souls suffer year round.

To describe the pain is difficult. Stab wounds and gunshots show visible results. Headaches cannot be seen neither by human eye or x-ray. Legitimate headaches hit everyone, some as vicious, vascular headaches in the relm of the migraine. Sadly, an ache of the head is often used by goldbricks, fakers and manipulators as an excuse to be absent. Because of the location of the pain, a "headache" is what is used to reference what cluster sufferers feel. Doctors will tell you, medical websites will back it up: a cluster is the most intense pain a human can withstand that won't kill you--it just makes you want to die.

I'd just turned 17 in August of 1976, when I woke up one morning with this horrible pain on the left side of my head. It lasted an hour, then eased up. After a week, the episodes stopped. I had no idea what had happened, since I'd never suffered head pain before.

A little more than a year later, the same thing happened, except the headaches went on daily for a month, waking me in the night, centering behind the eye, around the cheek, behind the ear, and thrashing through the temple. Tears fall, not from crying (although that's what you want to do), and the eye itself shuts. "It's sinus," said family members. I took Sinutab and Tylenol Sinus...popping them like M & M's. One relative told me to "Go outside and eat some ice cream."
I did, one afternoon at Long Beach State, while enduring vicious pain as a professor lectured on the history of the blues.

During a cluster in early 1980, I was advised to see an eye doctor. I made an appointment. I needed glasses, yet another cluster occurred that summer.

Stress. Tension. Sinus. Self-diagnosis, misdiagnosis. I endured, gritting my teeth through truly medieval , excruciating pain. Following the removal of a growth in the perotoid gland in 1981, my late Mother remarked, "I'll bet those headaches stop, now." Nope. A short cluster followed the surgery by a week.

In 1983, I was attacked by a cluster so awful, I wondered if I had been chosen for some Biblical test of faith, and I became a lot more Catholic than I had previously been. For naught, as it turned out. I went to a doctor , still thinking my sinuses were to blame, and was prescribed a nasal mist and antihistamines. I would wake up in pain and shoot this mist into my nostrils. It succeeded in making mortal anguish worse. So, more cluster cycles came in 1985, 86, and 87.

You get the idea. In 1988, I missed an evening of work just based on how I looked after a day long siege. 1989, 1990. Nobody knew, really, because it was impossible to convey the nature of these attacks, as opposed to the head pain most humans feel.

It was a doctor named Barbara Leigh, now practicing in the upper reaches of northern California, who first suggested that what was happening to me had nothing to do with anything known to most people. It was the first I'd heard of Cluster headache, and I was given a mist called "Staydol." It was a pain killer mist. It knocked my out, but did nothing to stop the grinding, drilling flares of punishment.

Darvocet. Vicodin. Narcotics could not stop this thing once the pain started. On Thanksgiving 1992, I made Herculean effort to finish my laundry while it felt like there was a hatchet going through the left side of my head. It eased and I went to dinner at my boss' house. No one was the wiser. By 1998, another Doctor, William Davis, also understood the nature of what I was going through. He gave me some material to read (in an age before webMD.com) that described to a T what was had been happening to me all those years. Much research had been done by a Doctor Kudrow in the field of headaches. If you were a fan of the TV show Friends, you recognize the name. He's the father of actress Lisa Kudrow.

Through this reading, I felt some relief that there were people who knew the depth of the agony. It occurs usually in young men with the onset of tobacco and alcohol use. Sleep deprivation and stress are also named as probable causes. This may be the case with some patients, but not all. With me, starting smoking and drinking in the summer of '76 probably was a root cause. Yet cigarettes and booze haven't been a part of my life for years. Even my current Doctor, Paul Reisser, cannot be a hundred percent sure as to why I'm one out of five thousand who suffer cluster cycles, why they start or last as long and with as much intensity as they do. I am aware of one phenomenon: I have had month long episodes in 2003, 2006, and the month that ends this day. Dr. Reisser surmises that the blood pressure medicine atenolol has contributed to the cycles being less frequent than they were in my youth. For that I'm grateful.

I have at my disposal relatively new pain relievers, mainly used for migraines. I'm at the tail end of a cycle, so the next time this should happen, I'll be using the most effective means of halting the pain: a tank of pure oxygen, taken at a furious pace, from a mask. As far as any medical professional knows, it's the only sure-fire way of stopping cluster pain once it's at it's horrible zenith.

Writing this is cathartic. Perhaps people will understand what happens to me every few years. Maybe it will make me talk about it more, because once a cycle is over, I'm so relieved, I push it from my mind. Monday the 22nd, I was still suffering the after effects from a flare-up the previous day, when my employers called, asking me to fill-in for someone. I could have explained that I, too, was ill, but didn't. Subsequently they started calling someone else. Maybe I'll explain it all better, and at long last people realize this is nothing like the fakery of someone who wants the day off to go to a concert, or recover from a bender.

R. I. P. KELLY ROBINSON

In my previous blog, I referenced the old TV show "I Spy," and the relative cool of Robert Culp as Kelly Robinson, and Bill Cosby as Alexander "Scotty" Scott, who traipsed about the globe protecting freedom. On the morning of Wednesday March 24th, Bob Culp was walking, not far from his Hollywood Hills home. He fell, hit his head, and died, months short of his 80th birthday. Cosby, of course, reacted with sadness and great words of kindness for his old pal. That on- camera chemistry was not fake. That's what made the show so special in its time.

It was while I read about his passing that I recalled how, in the '80's, when it was retro, I tried to channel Culp's "I Spy" look--the white denim trousers, white sneakers, and pull-over V-neck sweaters with no undershirt. I didn't try to look like Cos, because, frankly, I didn't have the ass width. One of those genetic things.

It shows the impact of TV characters on young viewers. If, at my age, I remember "I Spy," will kids today wax nostalgic about Keifer Sutherland in "24," and waterboard a friend just for kicks?

Hopefully they'll just channel Jack Bauer's steely resolve, maybe his choice of trouser, and leave it at that.

Rest in Peace, Bob Culp.