Clusters

Jeffrey Scheuer

Clusters Jeffrey Scheuer At 6:45 a.m. on a cold, snowy February morning a few years ago, I walked into the emergency room at St. Vincent’s Hospital in Greenwich Village, my neighborhood in New York, seeking relief for a cluster migraine headache. Cluster headaches are widely believed to be a type of migraine; they are so named because they strike their victim in waves or clusters over a period of weeks or months: massive, punishing, seemingly concerted, subjecting the head to something like a prolonged military siege.
    On this particular morning my own head felt like the center of the Union line at Gettysburg. I had experienced periodic cluster headaches for about twenty-five years—my entire adult life—but this was the first time I had ever gone to a hospital because of one. Two weeks into a cluster, and after three days of almost continuous pain, I had awoken with this particular headache at 4:30 a.m., called my doctor’s answering service, but received no reply from the physician on call. It was time to try something new.
    I waited a few minutes for the triage nurse to arrive, then explained my problem to her. She was a pleasant young woman with an Italian name, an Irish brogue, and a mouth full of gum. She took my name and age and filled out a slip, then took my blood pressure, which at that moment was very high, and directed me to a gurney in a corner of the emergency room, where she placed me on oxygen. As it turned out, that was the extent of the treatment I would receive.
    It is hard to write autobiographically about pain without eliciting pity, and cluster headaches are extremely painful. As Dr. Arne May and colleagues from the National Hospital for Neurology and Neurosurgery in London reported in 1998, the pain is “perhaps the most severe known to human beings,’’ at least for a condition not involving trauma. But that isn’t my point here. I consider myself lucky: millions of less fortunate souls deal with far worse afflictions—cancer, AIDS, Alzheimer’s, multiple sclerosis, Parkinson’s disease, you name it—the whole panoply of injury, deformity, and disease to which human flesh is prone. Millions suffer these tribulations in silence or isolation for years, or die young. Headache pain, in contrast, is oddly disproportionate to the real danger (if any) that it may pose to one’s health. To endure headaches is to suffer—and survive.
    Nor is this an account of triumph over adversity. It isn’t about courage; there was never any choice, least of all a moral choice, about confronting the problem. And there is no intrinsic nobility in suffering. It may arguably make one more sensitive to the pain of others, but merely enduring such suffering and showing up afterward is no triumph and deserves no honors.
    I think of my experience as being more about chance, personal destiny, and a search for meaning in a long struggle with an elusive, tantalizing, and fearful (but never mortal) adversary. It is, if you will, a kind of ghost story. The ghost just happens to be somewhere in my brain. Whatever physical or psychological explanations may be adduced—and despite my finding a homeopathic remedy about five years ago that has substantially eased the frequency and severity of the attacks—they remain a baffling, infuriating, and fascinating mystery.

One winter morning during my freshman year in college, I awoke with a colossal headache, unlike any I had ever had. At the college health center, I was given the painkiller Darvon, which put me to sleep for several hours and stopped the pain. A few months later I endured a string of similar headaches that lasted about a week. This wasn’t entirely surprising, since there was a clear hereditary precedent: my father had experienced cluster headaches in his thirties and forties. But I didn’t know much about them; I simply remembered times in my childhood when he would disappear alone into his bedroom. His paternal grandfather had also been a cluster headache sufferer.
    About a year and a half after that weeklong cycle in college, right at the end of final exams in May, I started getting headaches again. This time they were brutal, and the cluster lasted about two months. I had planned to spend the summer studying in California but came home early to see a headache specialist. By the time I saw him, the cluster was running out. The headaches occurred in a clear but mystifying pattern; I soon saw that seeking help for them had its pattern too: whenever I went to a doctor, however early in a cluster, there would be several weeks of experimentation with different medications, and in the end I could not tell which if any of them worked or whether the cluster had simply run its course.
    The clusters continued to come with amazing regularity for about twenty years. They would strike, on average, about once a year, each time lasting three to five weeks. During these periods I would typically get a headache every other day, between ten and twenty altogether, lasting several hours each. Within a particular cluster the headaches would invariably occur on the same side of my head, concentrating around the eye, temple, and frontal lobe and graduating back toward the ear and neck. From cluster to cluster the affected side often alternated: for example, a right cluster might be followed by a left one six months or a year later.
    Each cluster had three distinct phases: an onset period, lasting perhaps a week and consisting of briefer, milder, and more erratic headaches; a period of two to three weeks of severe headaches, typically every other day; and a tailing-off period of a week or so, mirroring the onset, during which smaller and more erratic headaches would signal the winding-down of the cluster. The only difference between the onset and tailing-off periods was that often a cluster would end with what I thought of as a big bang—one especially long and severe headache, sometimes lasting up to twelve hours. They were the worst.
    Likewise, each headache would have an internal pattern of its own, an arc oddly similar to that of the cluster as a whole. They were not unlike thunderstorms: an “updraft’’ stage of between five and fifteen minutes of low intensity but mounting pain; an intense phase, most often between one and two hours; and a “downdraft’’ phase as the pain gradually subsided or phased into sleep.
    At its worst a cluster headache feels like a bullet in the brain, without an entry wound. The eye tears, and the nose runs—but only on the affected side. One craves heat, darkness, and sleep—although it is possible to feel the pain even during sleep. I cannot explain this; I can only report having woken up many times feeling not only unrested, but conscious of pain during the sleep itself. Sometimes, if not too severe, the headache is followed by a feeling of elation and energy, a palpable relief, but more often it will peak, drop off, and remain for several hours at a low, nagging level, not especially painful but enervating and uncomfortable, leaving one totally depleted.
    The proximate physical cause of cluster and other migraines is not obscure: unlike lesser tension headaches of a muscular nature, they are a vascular disorder, caused when dilating blood vessels in the brain impinge on surrounding nerves. “Migraine,’’ writes Jane E. Brody in The New York Times Guide to Personal Health, in one of the better popular accounts, “results from contraction followed by rapid expansion of cranial blood vessels, which painfully stretch the artery walls and cause them to throb with every beat of the heart.’’ It is now believed that a hereditary biological abnormality in the function of serotonin, a chemical messenger in the brain, is a central factor. Drugs that affect serotonin, by either stimulating its action in certain parts of the brain or inhibiting it in others, have been used with some success. These include vasoconstrictors, calcium channel blockers (such as verapamil), beta-blockers (propranolol), ergotamine, and Sansert. Other therapies, including acupuncture, biofeedback, and oxygen, variously work for some people. I have tried most of them.
    But the deeper causes remain mysterious. The syndrome has no known origin, no evident natural purpose or evolutionary rationale, and (despite corollary symptoms, such as an aura, dizziness, and nausea) no lasting side effects. Whether manageable or excruciating, the headache is experienced simply as gratuitous pain.
    In addition to occurring in groups, clusters differ across gender from other types of migraine. Roughly two-thirds of all general migraine sufferers are female, but ninety percent of cluster headache victims are male. In both cases there is a high incidence of heredity. According to Brody, a cluster headache “causes such intense pain that it is sometimes called the suicide headache’’—a term that has never been used in my presence. “Headache specialists have observed that the typical migraine sufferer is an unyielding perfectionist, a meticulous, methodical, compulsive person with rigid behavior standards who suppresses anger and resentment of authority.’’ On all of those, I am guilty as charged.
    History suggests that one possible cure for the general migraine (sometimes known as the “sick headache’’) might be the unconditional surrender of one’s actual enemy. “I was suffering very severely with a sick headache,’’ wrote Ulysses S. Grant on the evening of April 8, 1865, at Appomattox Courthouse, Virginia, while awaiting Robert E. Lee’s reply to his terms. “I spent the night in bathing my feet in hot water and mustard . . . hoping to be cured by morning.’’ The headache persisted into the following day, and later that afternoon, “When the officer reached me [with Lee’s reply], I was still suffering with the sick headache; but the instant I saw the contents of the note, I was cured.’’
    Sometimes I would get clusters during times of stress but not in a way that established a direct correlation; just as often, they would come (as this one did to Grant) right after a stressful period had concluded. Consumption of certain foods (alcohol, chocolate, cheese, and so forth) would trigger a headache if I were in a cluster, and I therefore avoided them during a siege, but even with those precautions, I would still get the headaches; at best changing habits during a cluster would marginally reduce the pain. I was also a pipe smoker for many years, and medical studies have identified smoking as a factor. But I began getting the headaches before I started smoking and continued to have them for years after quitting.

To me the oddest and most interesting thing about cluster headaches (and I am probably a fairly typical case) is their elaborate structure and regularity. The time of the year and time of day when cluster headaches occur, the duration and frequency of the clusters as well as the individual attacks, the affected side of the head, the distinct phases of both the particular headache and the cluster as a whole—all more or less conform to a definite pattern, as if following a precise internal logic.
    These peculiar rhythms and regularities are quite clear, yet their origins are opaque. Why such patterns exist and where they come from are mysteries whose answers lie somewhere inside the human brain. And, perhaps inevitably, they have peculiar psychological consequences for the headache sufferer. Specifically, they powerfully incline me to regard the clusters as somehow anthropomorphic or even diabolical. One doesn’t have to be a devil worshipper to think of them as the workings of a malevolent force that has somehow invaded one’s body. One might say the same of any disease, but diseases don’t typically have such an elaborate structure and rhythm.
    In addition to that curious structure, which seems to implicate something besides the blind, semi-inscrutable forces of nature, other factors have led me to think of the headaches as the workings of a faceless adversary: the exhausting pain, the inconvenience, the emotional toll, the twenty-year duration of the struggle. After years of facing the same beast and coming to know its face, I am disinclined to think of it as some purely random, natural phenomenon.
    Indeed there is a definite spiritual quality to the cluster headache experience. I use the word with caution: I don’t want to imply that these storms of pain, coming with seasonal regularity like monsoons to a defenseless village, are in any way uplifting or enlightening. They are certainly not ennobling, and they have nothing to do with religion. Rather, I mean that despite their probable psychoorganic nature, the structure of cluster headaches suggests the presence of an alien intelligence of the kind we associate with demons or higher beings. This demon is cunning, fearsome, and familiar, yet utterly elusive, leaving its signature by attacking my body with regular, seemingly disciplined blows. Dealing with it means confronting nature and, at the same time, the very limits of my self. Is the demon part of me, or something else? How would I know? And what would it mean?
    Maybe the demon is only a metaphor after all, but it is an incredibly realistic metaphor. Maybe it is just too frightening to suppose that either unconscious psychic forces or purely physical aspects of my own being could be so selfpunishing. I am not given to supernatural explanations of empirical phenomena, and I am not infatuated with the unseen. I don’t believe headaches are the mischief of some divine or demonic being. Yet the demon image remains the best way to describe the subjective experience of cluster headaches. In that sense it doesn’t matter if it is metaphorical or literal truth. Clusters often seem to possess the very qualities of being—overwhelming power, capriciousness, invisibility, an obscure but definite purpose—that we assign to a higher intelligence. No other description serves.
    It is difficult to assess the emotional and other costs of living with this demon, not knowing how my life would have been different without it. I suspect that cost has been marginally significant but not overwhelming. The headaches haven’t radically affected my lifestyle or plans; they have just caused a lot of seemingly unnecessary pain, which many people experience in one form or another. They have probably kept me from taking certain risks, living more adventurously, traveling more widely, and so forth. But I doubt that they have appreciably affected the course of my career or personal life. I don’t think of myself primarily as a cluster headache victim. It is simply something I live with.

Over the years I fought the demon both directly, with painkillers, and prophylactically, with a wide assortment of drugs: aspirin, Cafergot, Librium, Tofranil, Fiorinal, Indocin, Amytal, Inderal, lithium, ergotamine. More recently, a neurologist prescribed injectable morphine, but I found that during the attacks I was unable to administer the injection. Sometimes I got no relief from a medication; sometimes I got relief during one cluster but not the next. Often the effects of the drugs (especially Librium and lithium) seemed nearly as bad as the headaches, leaving me groggy for days or weeks on end, unable to function at more than about half my normal productivity.
    It seemed that once a cluster started, there wasn’t much I could do about it. Individual attacks could be medicated but not aborted. Aside from lying down in a very dark, very quiet room, keeping warm (especially my feet, which like General Grant’s would get cold during a headache), and trying to sleep, the only thing that consistently helped was applying heat directly to the affected part of the head. And so I began applying hot water bottles. I found that using bottles filled with very hot, or even boiling, water from a kettle or coffeemaker would cut the pain significantly, despite the third-degree burns sometimes left on my face.
    A decade or so ago, after more than seventeen years, perhaps twenty-five clusters, and several hundred severe headaches, I consulted a homeopathic doctor in New York. Homeopathy uses, in minute doses, natural herbs and other non-narcotic agents that in a healthy person would cause the very symptoms they seek to suppress, thereby stimulating the body’s immune system. This doctor was an Algerian woman trained in France, where homeopathy is far more widely accepted than in the American medical community. I had already tried acupuncture to no avail; I doubted that any such passive and natural remedy could defeat the pain.
    After a long consultation, during which the doctor asked me dozens of questions about my life, habits, and tastes, and flipped furiously through several volumes of homeopathic literature spread open across her desk, she prescribed natrum muriaticum, ordinary sea salt. It comes in vials of tiny white pellets and, like many other homeopathic remedies in identical form, is available over the counter at pharmacies and health food stores. The pellets, which are taken orally and dissolve under the tongue, are perhaps a hundredth of an inch in diameter and cost only a few dollars per vial. I was instructed to take ten of these pellets once every two weeks. In keeping with the theory of homeopathy, I was told to expect some mild headaches over the coming months, and then I would be headache free. It seemed like a wild claim at the time.
    Incredibly, that is pretty much what happened. I began taking natrum muriaticum in October, right after the cluster that had sent me to the homeopathist in the first place. In January and February of that winter, I experienced the equivalent of a very mild, attenuated cluster. Over the next five years, I had only one very brief cluster, with just two or three major headaches, none as long or severe as in the past. During this time a mutual friend put me in touch with another cluster headache sufferer, a man in his fifties with a background very similar to my own. He was in a cluster at the time we spoke, and I told him of my success with natrum muriaticum. He tried it and within a few weeks called to say his headaches had gone away.
    At about the same time, I went to see my internist, a good doctor with a large practice in New York. By now I had developed a deeply cynical attitude toward the medical profession and not just on the basis of the headaches. But my doctor had taken a genuine interest in my clusters over the years and had occasionally prescribed drugs or referred me to specialists. I told him about the success I had had with natrum muriaticum and took a vial out of my bag to show him. He looked at the little blue tube with astonishment. It was like confronting a child—or a scientist—with a direct observation of magic. His amazement and apparent complete ignorance of homeopathy spoke volumes about what is wrong with American medicine. Out of all my experiences with cluster headaches, one of the most enduring images will be the look of wonder and surprise on that doctor’s face when I told him what sea salt could do.
    I was a believer—and basically still am, despite a second recent cluster. In fact, in the fall of 1995, feeling well and perhaps complacent, I lapsed in my use of natrum muriaticum for the first time. The following January I decided it was time to go back on the regimen. I took natrum muriaticum again, and within hours I got the first headache of what proved the worst cluster in years. Since then, despite less frequent use of natrum muriaticum, I have had only one major cluster, in the spring of 2001.
    Despite talking to many doctors and reading the medical literature—which announces a miraculous headache cure every two to three years—most of what I know about cluster headaches I have learned on my own or from other sufferers. For example, by the mid-1980s I came to recognize (rather belatedly) a striking seasonal pattern that no doctor had noticed: eighty to ninety percent of my clusters have occurred in fall and spring, especially in the months of September, October, April, and May. They seldom come in winter or summer.
    I am convinced that this is not an allergic pattern, and I suspect it relates to changes in light or temperature and their effect on what I believe is closer to the crux of the matter: sleep. During a cluster, getting either too much sleep or not enough would often trigger a headache. I have come to see the headache demon as intimately connected with a disturbance in my sleep cycle, which is somehow related to the seasonal incidence of clusters during the times of equinox. Some doctors now believe the cluster headache is not even a form of migraine but is based in a neurovascular abnormality within the hypothalamus, the part of the brain that regulates the autonomic nervous system and the body’s circadian rhythm. My experience strongly supports this hypothesis.
    Interestingly, one of America’s leading headache specialists, whom I consulted on and off for more than twenty years, is known in the profession as “The Headache King’’ for the relief he has brought to sufferers and specifically for a cure that involves a deep, drug-induced sleep. (He once hypothesized to me that a mysterious “virus’’ was the possible basis for the cluster headache.) At one point in the late 1970s, when I was already several weeks into a cluster, I tried his sodium amytal “sleep treatment.’’ After taking the medicine, I slept in his o“ce for several hours and woke up still dazed. After that, I only had one or two bad headaches, then the cluster faded. He was on the right track, too—or something like it.
    I have also learned that, given the extraordinary complexity of the human organism, any hypothesis about so elusive a malady must consider multiple (genetic and behavioral) levels of possible causation: hormonal, biochemical, environmental, psychological, experiential, and so forth. It seems almost contradictory to assign any single cause to so mysterious a phenomenon as the cluster headache. Yet I am intuitively certain that an irregularity in the sleep cycle is the principal source of the problem. How do I know? From a quarter century of experience with sleeping, sleep disorders, and headaches.
    Some experts agree. According to Dr. Robert S. Kunkel of The Cleveland Clinic, “Quite likely, some sort of cyclic biochemical or neurohormonal dysfunction—or a combination of both—is the underlying cause of the cluster syndrome.’’ And Julie Klug writes that “Headache episodes may be influenced by as yet unknown ‘cryptic’ biologic rhythms in the same manner as circadian rhythms or the menstrual cycle.’’
    Aside from the connection to sleep and an obvious genetic predisposition, if cluster headaches serve any hidden or unconscious purpose, it is hard to imagine what that might be. I know it is neither wholly psychogenic nor organic; no one who has experienced cluster headaches can doubt that they lie in the twilight zone where the mind and the body mischievously conspire to self-destruct.
    I remain mystified that the headaches seem to have a mind of their own, yet I am convinced of their ultimate pointlessness. Whatever positive things may be drawn from the experience—sympathy for the pain of others, resilience to life’s lesser miseries, appreciation for the absence of pain—cannot be worth the cost. I would wish them upon no human being, and in any case I doubt whether the experience would check the cruelty of the most vicious among us. But short of the proverbial prospect of hanging, there is nothing like them to concentrate the mind—and the emotions. A ravaging headache, like nothing else I know, strips away emotional defenses and exposes inner feelings to the harsh light of day. Still, this is hardly a source of therapeutic self-revelation (otherwise I would have gained a wealth of insights on myself, which is unfortunately not the case), and certainly it is not the whole story.

Back at the emergency room at St. Vincent’s, where I had come as a last resort, I lay on the gurney unattended for almost two hours, drifting in and out of a light, painful doze as the brutal headache gradually wound down. At one point the Twenty-ninth Psalm blared over a crackling loudspeaker. Nurses wandered by, and one came over to take my blood pressure again, but I couldn’t get the attention of a doctor. When I asked another nurse for a hot water bottle, she scoffed contemptuously. Then a group of five or six young residents drifted through, like teenage mall rats looking for amusement. I heard one of them say perfunctorily, “Is this the guy with the headache?’’ No one answered or approached me. Headaches, I suppose, bored them.
    Finally, at about 9:00 a.m., a doctor did come by. He put me in touch with my personal physician, who summoned me to his office a few blocks from the hospital. By now the headache had faded. So my curious visit to the emergency room ended without any treatment whatsoever.
    My doctor prescribed two forms of morphine—one to stabilize my head, another to take when I felt an attack coming on. The morphine worked. The headache that brought me to the emergency room turned out to be the final big bang of the cluster; I had four or five attacks subsequently, on consecutive nights, each at about 4:00 a.m. (the sly devil who so rarely strikes at night switched times on me.) Each time the liquid morphine caused the attack to dissipate within minutes. While natrum muriaticum significantly improved my overall encounter with cluster headaches, the two forms of morphine, in tandem, proved by far the most effective treatment for specific clusters and specific attacks. Luckily they are nonaddictive. Once again I have outwitted the monster. At least for now.

Jefferey Scheuer lives in New York and is the author of The Sound Bite Society: Television and the American Mind (Four Walls Eight Windows, 1999; Routledge, 2001).

“Clusters” appears in our Spring 2003 issue.