CLUSTERS

By Jeffrey Scheuer

Appeared in The Gettysburg Review, 2003

At 6:45 a.m. on a cold, snowy morning last February, I walked into the Emergency Room at St. Vincent’s Hospital in Greenwich Village, seeking relief for a cluster-migraine headache. Cluster headaches are a type of migraine that are so named because they strike their victim in waves or clusters over a period of weeks or months: massive, seemingly concerted, punishing attacks, 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 my entire adult life, but this was the first time I’d ever been to a hospital. 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, and gotten 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, and explained my problem to her. The nurse 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’s hard to write autobiographically about pain without eliciting pity, but that isn’t my intention here. I consider myself lucky: the pain and inconvenience of cluster headaches, though severe, isn’t extraordinary; millions of less fortunate souls deal with far worse afflictions — cancer, AIDS, Alzheimer’s, Multiple Sclerosis, 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, suffer for years, or die young. My headache pain is, in fact, oddly out of proportion to the real danger (if any) that it may pose to my health. To endure headaches is to suffer — and survive.

Neither 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. 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: whatever medical or psychological explanations may be adduced, and despite finding a homeopathic remedy about five years ago that has substantially eased the frequency and severity of the attacks, it remains a baffling mystery to me.

One winter morning during my freshman year in college, I awoke with a colossal headache, unlike any I’d 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 got 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 this 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.

A year after that first week-long cycle in college, right after the end of final exams in May, I started getting headaches again. This time they were brutal, and the lasted for about two months. I’d 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. This turned out to be another pattern: whenever I went to a doctor, however early in a cluster, there would be several weeks of experiment with different medications, and in the end it would be hard to tell which if any of them worked, or whether the cluster had simply run its course. The clusters continued to come with 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, or 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; between clusters, the affected side would often alternate: for example, a right cluster might be followed by a left one six months or a year later.

Each cluster would have three distinct phases: an onset period, lasting perhaps a week, consisting of briefer, milder, and more erratic headaches; a core period of two to three weeks of severe, and strictly regular headaches, typically every other day; and a tailing-off period of a week or so, like the onset, during which smaller and more erratic headaches would signal the winding-down of the cluster. The only difference between the onset and tail periods was that frequently a cluster would end with a Big Bang — one especially long and severe headache (sometimes lasting up to 12 hours).

Likewise, each headache would have an internal pattern of its own, not unlike that of a thunderstorm: 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 migraine 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 during sleep. Sometimes 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 extremely uncomfortable, and leaving me feeling 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 by dilation of blood vessels in the brain impinging on surrounding nerves. “Migraine,” writes Jane E. Brody, in one of the better popular accounts,1 “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.

But the deeper causes, particularly of cluster headache, remain mysterious. The syndrome has no known origin, no evident natural purpose or evolutionary rationale, and (despite corollary symptoms, such as an aura, or spectrum of premonitory sensations; dizziness; and nausea) no lasting side-effects. Whether manageable or excruciating, it is experienced simply as gratuitous pain.

In addition to occurring in groups as I’ve described, 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, 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.” Guilty as charged.

History suggests that one possible cure for the general migraine sometimes known as “sick headache” might be unconditional surrender. “I was suffering very severely with a sick headache,” writes Ulysses S. Grant of the evening of April 8th, 1865, at Appomattox Courthouse, Virginia, while awaiting Gen. 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. Later that afternoon, he writes, “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.”2

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 cold turkey.

The oddest, and perhaps the most interesting, thing about cluster headache is the pattern and regularity, which can lead a sufferer to regard the phenomenon as anthropomorphic or even (assigning the same human qualities of will and intelligence at a higher level) celestial. What I mean is this: the etiology of the headaches, and their exact causal structure, remains a mystery; yet they occur with such predictable regularity and rhythm, with a precise internal logic and outward pattern, that they can seem to the sufferer to represent some form of diabolical intelligence. And whatever the psychoanalytic possibilities, that intelligence has always seemed to me an alien one, visiting itself upon me in brutally ordered, almost disciplined, blows.

Indeed, there is almost a spiritual quality to such episodes. I use the word with caution: I don’t wish to imply that these storms of pain, coming with seasonal regularity like monsoons to a defenseless village, are in any way uplifting. Rather, I mean that despite their probable psycho-organic nature, they seem at the same time to be somehow beyond and larger than myself — as I suppose any disease seems to its victim. Perhaps it is just too frightening to suppose that either unconscious psychic forces or purely physical aspects of my own being could be so pointlessly self-punishing.

I’m not given to supernatural explanations of empirical phenomena, or infatuated with the unseen. I don’t believe headaches originate in a Divine or demonic being. Yet they often seemed to possess the very qualities of being — overwhelming power, capriciousness, invisibility, and an obscure but definite purpose — that we assign to our conceptions of a higher intelligence. Over time, I came to think of the pain as a kind of demon. It didn’t have a face, human or otherwise; it didn’t have a character; but it was a being. It had a profile; it was a haunting, vexing mystery, not least because the mystery was somewhere inside me.

Besides their regularity, which seems to implicate something other than the blind, semi-inscrutable forces of nature, other factors have led me to think of the headaches as the workings or embodiment of a nameless personal adversary: the exhausting pain, the inconvenience, the emotional toll, the twenty-year duration of the struggle. It’s difficult to assess the emotional cost of the headaches, not knowing how my life would have been different without them. I suspect that cost has been not insignificant but ultimately marginal. For example, the headaches may have kept me from taking certain risks, living more adventurously, travelling more widely. But I doubt that they have significantly affected the course of my career or family life.

Over the years, I fought the headaches both directly 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 in one cluster and 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, and unable to function at more than about half my normal productivity for weeks at a time. The fact of the matter is that once a cluster headache starts, there isn’t much you can do to abort it. 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 get 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 to my head during headaches, which cut the pain by as much as twenty percent. After some of these headaches, I had third-degree burns on my face for several days.

In the fall of 1990, after more than seventeen years, perhaps twenty clusters, and several hundred severe headaches, I consulted a homeopathic doctor in New York. Homeopathy uses natural herbs and other non-narcotic agents, in minute doses, which 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 she 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, the doctor prescribed natrum muriaticum, which is ordinary sea salt. It comes in vials of tiny white pellets, and like many other homeopathic remedies in identical form, it 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 every two weeks. In keeping with the theory of homeopathy, I was told to expect some mild headaches over the coming months, and then (what seemed at the time a wild claim) I’d be headache free.

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 a 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 he called me 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’d had with natrum muriaticum, and took a vial out of my bag to show to him. He looked at it the little blue tube I’d handed him with astonishment. It was like confronting a child — or a scientist — with a direct observation of magic. His amazement, and apparently complete ignorance of homeopathy, spoke volumes about what’s 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 the doctor’s face, when I told him what sea salt could do.

I was a believer — and basically still am, despite the 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. Last 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. Go figure.

Most of what I’ve learned about cluster migraine — and I’ve consulted the medical literature, which announces a miraculous headache cure every two or three years — I’ve learned on my own. For example, by the mid-1980’s, I came to recognize (rather belatedly) a striking seasonal pattern: 80 to 90 percent of the clusters have occurred in fall and spring, especially in the months of September, October, April, and May; they seldom strike in winter or summer. I’m convinced that this is not an allergic pattern, and suspect it relates to changes in light or temperature, and their effects 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 trigger a headache. Since then, I’ve 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.

Coincidentally, one of America’s leading headache specialists, whom I’ve seen on and off for more than twenty years (and who once hypothesized to me that a mysterious “virus” was the possible basis of cluster headache), was known in the profession for a cure that involves deep sleep. Once, in the late-1970’s, when already several weeks into a cluster, I tried his sodium amytal “sleep treatment.” After taking the medicine, I slept in his office for several hours, and woke up still dazed. I only had one or two bad headaches after that before the cluster disappeared.

I’ve also learned that, given the extraordinary complexity of the human organism, any causal hypotheses about so elusive a malady must consider various levels of possible genetic and non-genetic causation: hormonal, biochemical, environmental, psychological, behavioral, and so forth. It seems almost contradictory to assign any single cause to so mysterious a phenomenon as cluster headache. Yet I’m intuitively certain that an irregularity in the sleep cycle is the principle source of the problem.

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.” 3 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.” 4

Aside from the connection to sleep, and an obvious genetic predisposition, if cluster headaches serve any hidden or unconscious purpose, it’s hard to imagine what the basis of that need for pain 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 by how the headaches seem to have a mind of their own, and 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 have been worth the cost. I would literally wish them upon no human being, and in any case I very much doubt whether such a debilitating (in the short-run) encounter with pain 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. But it’s hardly a source of therapeutic self-revelation, and certainly it’s not the whole story.

Back at the Emergency Room at St. Vincent’s, where I’d 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. Once, 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.

Finally, shortly before 9 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. 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 a.m. (the sly devil switched times on me). Each time, the liquid morphine caused the attack to dissipate within minutes. And so once again I’ve found a remedy for cluster migraine, and outwitted the monster. At least for now.

  1. “Jane Brody’s The New York Times Guide to Personal Health” (New York: Avon Books, 1976), p. 522)
  2. Personal Memoirs of U.S. Grant, Vol. II. NY: Charles L. Webster and Co., 1886, p. 483-485.
  3. Modern Medicine, April 1986, p. 68.
  4. Aches & Pains, Nov. 1981, p. 32.