Memoir — From the May 2013 issue

An Uncommon Pain

Living with the mystery of headache

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“I’m very brave generally,” he went on in a low voice: “only today I happen to have a headache.”

 — Tweedledum

My headache began on a Monday afternoon around three o’clock. The pain centered on my left temple and eye, constant, gnawing, broken only by sudden waves of sharper pain. My doctor was on vacation, but after several days I decided I couldn’t wait and took the next available appointment. By the time I made it to her office I could hardly walk across the room in a straight line.

The physician’s assistant was attentive, working down the neurological checklist: reflexes, balance, gait, grip strength, and cranial-nerve function, which affects swallowing, eye movement, sensation, facial expression, and more. Everything was normal, except for the pain. Finally, with a grunt of satisfaction, she decided that I must be dehydrated. I knew that I was dehydrated because I couldn’t eat, and that I couldn’t eat because I had a headache that would not stop. By then the headache had so eroded my ability to think that I didn’t even comment; I just waited in a darkened room while she wrote a prescription for Vicodin.

When my doctor returned a week later, she was also attentive, and took her time: reflexes, balance, gait, grip strength, cranial-nerve function. The Vicodin had given me no relief. I was tremulous, ill defined. The feeling was hard to describe; my words failed, trailing off.

“I’m sure it’s not migraine,” she told me. Migraines rarely last more than a few days. “But I’m not sure what it is.” Although severe headaches are only rarely a sign of something dire, like a ruptured aneurysm or a brain tumor, she recommended an MRI to be sure.

“There is a medication that sometimes works for headaches like these,” she said, and suggested I try indomethacin, an anti-inflammatory drug in the same class as ibuprofen. Usually reserved for arthritis, it’s a nasty medication, known for causing stomach ulcers and gastrointestinal bleeding, cardiac arrhythmia and heart failure. I started taking twenty-five milligrams twice a day — started as soon as the pharmacist handed me the bottle — along with a daily dose of omeprazole, an acid-reducing drug, to protect my gut. The pain retreated but didn’t disappear. I complained in private but mostly I kept my headache to myself, shivering my way through conversations. I had work and a class to teach and my son was getting married in a month.

Headaches are nothing special. They grant one only brief and local respite. That this one endured, that it buffeted my every step, was hard to explain. I wasn’t sure anyone would believe me; after all, I hadn’t really believed in such a thing, either. Another person’s pain, writes Elaine Scarry, is “vaguely alarming yet unreal,” and the inability to truly sympathize with another’s suffering is a sign of “pain’s triumph.” She adds, “Whatever pain achieves, it achieves in part through its unsharability.”

The MRI rooms were spacious and cool. I exchanged my shirt for a cotton gown that smelled of sunshine. A young woman called my name, introduced me to a bearded man seated in front of a set of screens, and led me to the machine. She deftly inserted an IV needle into my arm and slid me in. Many people feel claustrophobic in the sleek white tube of the MRI machine; I was relieved simply to lie down and be left alone for a while. The rhythmic clangs, knocks, and thuds of the magnets were not unlike the ambient music I enjoy; the clatter was soothing, and I dozed.

After a time, the frame slid out and she injected the contrast.

“If there is any pathology, this will light it up,” she said, and slid me back inside.

My doctor called a few days later. The MRI was clean. No tumor, no bleeding, no stroke. Over the next few weeks, I saw a dentist, a chiropractor, a massage therapist, and a nutritionist. No one had an answer. I got confused if I tried to do more than one thing at a time, even when the pain had receded. I would sometimes find myself hunched in a chair, covering my left eye with my hand, doing nothing. I began to feel like an invalid. I was not “having headaches.” I had a headache, one single unrelenting headache, drowning everything else out.

Since the earliest days of medicine, the headache has been described with respect and even awe. People have long marveled at the catholic sweep and wretched nature of its suffering, at its ability to drive victims almost mad. Headaches seem to make people see the world differently: Lewis Carroll, Vincent van Gogh, Pablo Picasso, and Georges Seurat are all said to have had them. They are a leading reason people take sick days and a common cause of visits to the emergency room. Determining the kind of headache a patient has is one of the trickier problems facing primary-care physicians. In the sometimes tautological language of medicine, headaches are both cause and effect, symptom and disorder. Descriptions are looping, self-referential. The International Headache Society created a detailed diagnostic system in 1988, but it is the subject of ongoing debate. A fair amount of the space devoted to headaches in medical and scientific journals is given over to the reorganization of categories and nomenclature. When you’re in the throes of a headache, finding your place in the subsections of diagnosis is like hiking through a junkyard.

Almost all headaches are primary, meaning they aren’t caused by anything else — but it is variously the muscles, blood vessels, skin, bone, mucous membranes, and nerves that hurt. That headaches can be felt in so many ways means treatment is inevitably a little experimental. Like most pains, headaches sometimes respond to placebos. They are often treated with medications prescribed “off label” — that is, in ways the FDA has not recommended for use. There are first-line drugs and second-line drugs and why-not-give-this-one-a-try drugs, and people usually use several before finding one, or a combination, that helps: antidepressants, beta-blockers, steroids, calcium-channel blockers, anticonvulsants, antihistamines, Botox, and lidocaine are all used, along with ergot (from which LSD was first synthesized) and narcotics. (And almost all these drugs can cause headaches.) But people also prescribe for themselves: butterbur, feverfew, vitamin B2, magnesium, melatonin, kudzu, vinegar, St. John’s wort, coenzyme Q10, biofeedback therapy, special diets, acupuncture, and marijuana. Everything works sometimes, for someone, somewhere, and no one can easily explain why.

The majority of headaches are “tension type.” They often start in the morning, just as a person is waking up. The head feels squeezed as in a vise. (How many of us have had our heads put in a vise? And yet that is the image people invariably choose.) Duller pain travels down the temples and into the neck and shoulders. Despite the name, tension-type headaches are not the result of muscle tension; indeed, there is no consistent abnormality in the muscles of the head and neck during a headache, and the pain may be the result of increased sensitization in the central nervous system. When people say, “It’s just a headache,” they mean that it will go away in time — but how odd that a person in good health can be brought to his knees by a puzzling, harmless occurrence of unknown cause. It is a headache — but no headache is just a headache.

Headache is a peculiar insult, an intrusion into the mind; it is inherently emotional. The pain makes it hard to think and destroys equanimity, but so does the accompanying neuronal storm. Headaches trigger a response in the emotional centers of the brain; your head is making you lose your temper, making you cry. I’m not trying to claim that the pain from a headache is worse than the pain of a broken bone or the gnaw of tumor and infection — though certain types of headache cause profound pain — but there is something fundamentally different about it, a pain benign in a technical sense, malignant in an existential one. The sufferer is oddly contracted and reduced. The word is almost unbearably banal for the metaphysical jolt and psychic crisis engendered; what we call a headache is a neurological event encompassing every part of a person: body, mind, feeling, and that ephemeral construct we call self.

The indomethacin tamped down my constant pain, but every hour or so I had sudden tides of sharp pain that I began to call surges. They were always on the left side of my head above the eye and in the temple, with swells of tingling and electrical sensations. They made my eye squint and blink; sometimes my jaw ached, or I found myself leaning to the left in my chair.

Indomethacin is singularly diagnostic for an uncommon headache I had never heard of called hemicrania continua. Indomethacin reduces intracranial pressure, but how this relates to the pain of hemicrania is unclear. Other drugs in the same class don’t help; opiates don’t help, and neither do the triptans, drugs that reduce the constriction of blood vessels in the brain and help treat migraine. (No other severe headache is relieved by indomethacin alone.) So, ipso facto, hemicrania is a headache that responds to indomethacin — “responds absolutely” is the classic description; an “exquisite response” is another.

I work part-time as a nurse, and that means I’m the kind of patient politely called proactive; I was in research mode as soon as I left the office. Even with my brain off center, I spent hours in the medical library reading about what my physician called “headaches like these.” The description I found — of a one-sided headache that sets in suddenly, with no apparent trigger, and doesn’t go away — sounded right, though only the drug would tell. “The appropriate dose will vary,” I read, scribbling notes, my head cradled in my hand. One should take whatever amount of indomethacin “results in resolution of headache.” With a little trepidation, my doctor agreed to let me double my dose.

Medical diagnosis is a lot less precise than people sometimes think. Illness is just description. Things we can measure are called “signs”; things the patient feels are called “symptoms”; this more or less coherent collection of details leads to a diagnosis that may be reached by trial and error. Research on the pathophysiology of headache runs to thousands of pages a year, with few answers. Are headaches generated by the peripheral or the central nervous system? How are headaches related to the immune system? “Individuals presenting with CDH,” I read in an overview of the research, are considered “among the most difficult cases” a neurologist will treat.

Chronic daily headache (CDH) — a grouping of disorders rather than a diagnosis — is a term used to describe all headaches that occur at least fifteen days each month, including the specific conditions of chronic migraine, hemicrania continua, and new daily persistent headache (NDPH). People who develop chronic headaches are at risk of having them for the rest of their lives. They may, I read, lapse from medical care, seeking high doses of narcotics or such alternative remedies as electromagnetic bracelets and colon cleansing. Others may become increasingly desperate, opting for nerve blocks — injections of steroids near major nerves. (One new treatment involves implanting electrodes in the brain via the back of the neck and connecting them to a battery implanted elsewhere in the body.) Some are unable to work again, and a few kill themselves.

NDPH is a headache that develops suddenly and never goes away; this unremitting quality is the primary symptom. One of the characteristics of NDPH is that people can pinpoint when the headache started: “patients can recall exactly what they were doing and when at the time of onset.” Many people with daily headaches wait weeks or even months to see a doctor. Perhaps they are afraid of what the headaches mean, or perhaps they fear that no one will be able to offer relief.

Usually the sufferer has no history of headache, but up to 30 percent of people with NDPH have a recent history of flulike illness or an upper-respiratory infection; a statistically significant number test positive for the Epstein–Barr virus. Various biochemical markers are abnormal in sufferers of chronic headaches, though knowing that you have a glutamate-receptor disturbance, decreased blood-platelet serotonin levels, increased levels of nerve growth factor and substance P, or overactivation of the contralateral posterior hypothalamus and ipsilateral rostral pons isn’t much more help than being told you have a new daily persistent headache. One theory posits a temporary malfunction of the pain-control pathway. Does this mean our normal neurological environment includes pain hidden from conscious perception — that our brains have simply evolved to protect themselves from the pain of being alive?

A few weeks after the pain began, having missed work and canceled appointments and plans, I started telling more people about the headache. Immediately the advice came. Eliminate gluten. Eliminate corn. Eliminate soy, dairy, nuts. My boss told me to take a triptan. The massage therapist digging into the knot in my neck told me I needed craniofacial manipulation. A dermatologist recommended Botox. “It might work,” she said, “and anyway, you’d get a nice wrinkle treatment for a few months.”

“Your doctor is wrong,” a woman said confidently. “It’s a migraine. I know. I have migraines.”

Migraine is the second most common type of headache, though headache is only one symptom of what is sometimes called a disease and other times a disorder, a condition, a syndrome. (One specialist prefers to call migraine “a genetically unique nervous-system configuration.”) People with migraines are typically called “migraineurs,” as though it were a profession, or a tribe. (Not every person with migraine appreciates this conflation of patient and disease, though it seems to me that many treat migraine as a central part of their identity, like a kind of ethnicity.)

When people say they have a migraine, they usually mean a severe and peculiar kind of headache: throbbing, one-sided, accompanied by nausea and sometimes vomiting, by photophobia (oversensitivity to light) and sometimes phonophobia (oversensitivity to sound). But headache is not always the main experience of migraine, and may not be present at all. About 20 percent of attacks start with “auras,” which range from the perception of vivid and “scintillating” lights to tingling or numbness along the skin, food cravings, trouble speaking or hearing, or depression. Some people yawn irresistibly. During a migraine attack, people can become so confused they appear intoxicated; afterward, they may experience a sense of euphoria. But there are also bilateral migraine headaches and migraine attacks without auras, nausea, or sensory or mood changes. Some migraine attacks, mostly in children, are felt primarily in the abdomen; another type causes temporary paralysis. Migraineurs may also experience Alice-in-Wonderland syndrome, in which parts of the body seem to be of abnormal size. My friend Jeanne went blind one day from a migraine; she couldn’t see normally for four months.

The Migraine Disability Assessment Scale (MIDAS) determines how much time is lost to migraine from work, schooling, household chores, family time, social time, and recreation. Migraineurs have higher rates of stroke, allergies, epilepsy, and psychiatric illness than does the population at large, and also a higher incidence of depression, anxiety, substance abuse, phobias, and panic attacks; which comes first is unknown, but early childhood trauma is more common in people with migraine. People with acute migraines are protected by federal antidiscrimination law.

The aptly named “cortical spreading depression” — a slow electrical wave flowing across the brain — may be the cause of migraine’s motley symptoms. The attacks may be triggered by certain types of food, nitrates, nitrites, sulfites, lack of sleep, dehydration, stress, light, altitude, menstrual cycles, menopause, and changes in the weather. Fasting can trigger a migraine attack: thus the term “first-of-Ramadan headache.” Triptans are the treatment of choice for most people with migraine attacks, and for whatever reason old-school antidepressants can also work. Migraineurs may take a preventive medication every day and use another as soon as the headache starts. (This is called abortion, or rescue.) Sleep helps, but so does vomiting. I met a woman recently who told me she had become used to disabling migraine attacks accompanied by vomiting and blurry vision. One day the aura began and she screamed, “Goddamn it, I will not have this headache!” And the headache stopped and she never had another migraine attack. “I do believe you can argue with your body,” she told me. I am not sure you can argue with every headache.

There is yet another grouping called TAC, or trigeminal autonomic cephalalgias. (Cephalalgia is Latin for “headache.”) TACs are distinguished by unilateral pain following the path of the trigeminal nerve, along the face and scalp. TACs have autonomic symptoms familiar to anyone with allergies: the eyes become red or swollen; tears flow freely; the face is red and hot. Because these are one-sided headaches, the autonomic symptoms are usually one-sided as well — one droopy eye, sweating on half of the face, a single runny nostril — almost always on the side with the pain. They can be remarkably disabling: one type, which may be triggered simply by lightly touching the cheek, can occur as many as 200 times a day, with each attack lasting a few seconds to several minutes. The attacks usually continue for life.

Cluster headache is included in the TAC group. Cluster describes very sharp pains on one side of the head; they come in attacks of up to eight per day, for weeks or months at a time. A cluster headache is limited in duration, but the pain is considered one of the most severe known. They have been called suicide headaches because the pain is so intense that the sufferer will sometimes bang her head against a wall or pull out her hair, and because some people do attempt suicide.

Cluster is dramatic and uncommon. Like those of migraineurs, the brains of people with cluster headaches (who sometimes call themselves clusterheads) are microscopically different from other brains. What does it mean that a third of people with cluster headaches have brown eyes? I’ve found sober researchers describing people with cluster headaches as having a “leonine” appearance, as being taller than average, or as having thickened skin. A correct diagnosis, some estimates suggest, can take as long as nine years. Taking triptans and breathing high-flow oxygen are the most effective treatments for cluster headaches; hyperbaric pressure also helps. But there is growing evidence that psilocybin, LSD, and related compounds can completely eliminate cluster headaches, even at subhallucinogenic doses.

And there are rarer headaches still: the thunderclap headache that can knock a person off a chair; stabbing headaches, sometimes called ice-pick headaches, in the eye or temple — the stabs last for just a few seconds but come in waves, many a minute in episodes lasting for days. There are headaches caused by taking too many pain-reducing medications; the brain insists on bouncing back. A nummular headache occurs in a discrete, coin-size spot. There are headaches triggered by cold or sunshine; alarm-clock headaches that wake people up from sleep like, well, clockwork; preorgasmic headaches and orgasmic headaches and exertional headaches that make people ill when they exercise, and headaches you feel only when you cough.

None of these are my headache.

The pain of hemicrania continua centers around the eye and forehead. (A number of people with HC experience “foreign body” syndrome, the sense that there is something in the eye.) HC may seem to wax and wane, but it never disappears; in fact it is layered: the moderate, relentless foundation, a kind of water torture of headache, overlaid with bursts of sharp, even blinding, pain. Many people with hemicrania (and “many” is the wrong word; it is rarely diagnosed, though some researchers think it is less rare than once believed) also have “migrainous” symptoms, like my occasional nausea and sensitivity to light.

How quickly I was willing to take on the risks of indomethacin! I felt dizzy, clumsy, weak, but whether this was the medication or the headache is hard to say. The continual pain faded into the background, turning into a kind of internal pressure, as though the headache were pushing on the inside of my head, trying to get out. The surges diminished in frequency, and then in intensity, but didn’t cease. Beneath the business of preparing for my son’s wedding, a monotone of dull pain; on top of the happiness and cheer, the faint perfume of indomethacin. After a few weeks, I found myself sinking to the bottom of Maslow’s hierarchy of needs: in danger. One night my heart began to skitter and twitch; I lay in bed and hoped they wouldn’t take my medicine away.

I didn’t tell my doctor about my heart, but still she refused to increase my dose, instead referring me to Dr. N., a neurologist with a weeks-long waiting list. Together they decided to start me right away on a low dose of gabapentin, an anticonvulsant. I was making the rounds that mark a long illness: telephone calls and paperwork, waiting on hold listening to pop songs and sitting in waiting rooms and waiting to make a new appointment with a front-office clerk who never makes eye contact and asks for my “social” and then interrupts me to take a phone call, and I just wanted to be able to do something. I was acutely aware of being the patient, of having less power than the people to whom I was explaining myself. They were well and busy and I was only a small part of their day.

Dr. N.’s office is one in a long row of anonymous medical offices beside a small hospital in a town next to Portland, Oregon. He is Indian, a small and tidy man with a light accent. When I met him, about two months after my headache began, he was attentive, walking me through the exam: reflexes, balance, gait, grip strength, and cranial-nerve function. I had been on the gabapentin a month by then; my headache was muffled, but still unrelenting.

It’s not a migraine, he said dismissively. Nor is it cluster. And because I had not had an absolute — not an exquisite — response to indomethacin, he doubted that I had hemicrania continua. He pulled me into a dark room to show me the MRI on a computer, flipping rapidly through my brain; the lovely scalloped layers widened and thinned as we traveled through the slides. I would not have been surprised if the MRI had shown a tumor, or if my brain were lanced by the plaques of dementia. But mine was spotless, a smooth, dark-gray brain, a good-looking brain.

“See, it’s clear,” he said, as though we were discussing a spring sky. No clouds today. But then he pointed to a tiny spot, a small white curl of bone. “This could be it,” he said. “I think this is contact point.” I suspected that it wouldn’t be easy to get a smile out of this guy, but he smiled then. A solution. Seven years before, I’d had surgery on my sinuses, and I might now have a little bony overgrowth as a result. A contact-point headache is secondary, caused by a pinched nerve; pain is referred along the trigeminal nerve, and usually alleviated by surgery.

We talked about my odd jitteriness, how my body felt fragile and shaky, like a poorly built scaffold beginning to lean. Was this the headache or the drugs? It was hard to tell — but he suggested that I increase my gabapentin dose quickly, that I really load up, and get off the indomethacin. This would be good for my heart. Gabapentin is a safer drug, but its side effects are varied: weakness, joint aches, depersonalization, somnolence, poor coordination, “strange feelings.”

Almost immediately, my heart settled down. But that week of weaning myself off the indomethacin gave me a headache that seemed to fill the world. When I woke each morning, I couldn’t think clearly. What time is it? I would wonder. What’s going on? Eventually I would rise, going straight for the morning dose, then dip my head under the faucet before climbing into the shower, pulling on clothes, and careering into the kitchen to line my stomach for the pills. Within an hour of each dose, I’d feel better. I’ve never needed medication in this acutely timed way before; it seemed the first sign of a fatal erosion. I resented the needing of it.

I had a CT scan and returned to Dr. F., who’d done my sinus surgery: a short, bald man with a head shaped like a ball. He perched casually on the exam table and told me that there was nothing to be seen on the CT — no bone spur, no contact point. The interventionist with tools for cutting bone didn’t want to intervene, and though invasive studies and surgery are generally way down on my list of things to do, I was disappointed to tears.

So I waited three weeks for the next appointment and went back to Dr. N., who was not smiling.

“I’ve reached my limit on headaches,” he told me. “I’m a general neurologist. If you had Parkinson’s disease? Multiple sclerosis, epilepsy — that’s what I do.”

Having reached the mountaintop of his exam table again, I was not willing to relinquish it so quickly. “Do you think it’s possible this really is a persistent headache?” I asked. NDPH: the headache that never goes away, never gets diagnosed beyond its own description, with few treatments.

He nodded. “Yes, perhaps.” Precise syllables, a cock of the head.

“What about going on an elimination diet?” I asked.

He shrugged a very small, tidy shrug. “It can’t hurt,” he said.

In order to see a headache specialist, I had to get authorization from my insurance provider to go out of network. I have good insurance, but I was into this for thousands of dollars by then. As the bills began to arrive, I could see why people delayed treatment, or gave up. More time on the phone, more voicemails, explaining myself to the point of crying, head in hand, letters, more calls, more waiting. How do people who don’t know how to work the system navigate it? How do people with headaches navigate it?

I had reached a point of feeling almost infinitely strange. I still had a headache all the time, though it was masked; I was depersonalized. Something almost like an aura ebbed and flowed away — the feeling of a crucial piece broken wild and loose, the cotter pin of control. After a particularly bad day, when my skin felt like fuzzy wool and I was afraid to drive and I couldn’t get an appointment with anyone, I cut back on my medication; I had plenty now, and I had reached the point of prescribing for myself. Soon my thinking cleared up, but the surges renewed — pain, and a frisson of electricity around the eye, into the cheek, a vague tingle. I found myself getting used to it.

Dr. P.’s headache clinic was just off a busy freeway exit at the junction of two overgrown suburbs of Portland, a cheap second-story office with a few small rooms and cardboard boxes piled in one corner next to a few chairs near the secretary’s desk. No standing on ceremony for Dr. P., a woman shaped like an apple, with a halo of strawberry hair; she just stuck her head out of one of the rooms and called me in.

First we talked: the entire history of the headache, my family medical history, the medications I’d taken, how I felt right then. When I tried to explain that I sometimes felt like I had a headache without actually having pain, she knew what I meant. She heard this a lot — that something feels wrong in the head in an uncertain way. All she does is headaches; the only patients she sees are patients like me, struggling to explain the way it feels inside our heads, stumbling over words because each thought is work. It was only after we had talked for forty-five minutes that she examined my reflexes, balance, gait, grip strength, cranial-nerve function.

Finally, she pressed on my shoulders for a moment and stepped back. “I’m quite sure this is hemicrania. The indomethacin didn’t work perfectly because you couldn’t take a high enough dose.” She had seen it before. We discussed alternative drugs, one of which, topiramate, is known to cause memory and speech problems. She suggested lamotrigine, another anticonvulsant, instead, noting that I would have to increase the dose very slowly. Lamotrigine has interesting side effects — behavioral changes, nausea, double vision, and the rare Stevens–Johnson syndrome, a widespread inflammatory reaction in which large sections of skin blister and slough off. Lamotrigine can also cause headaches.

I winced at her description.

“How long do I need to take it?”

“I hope I can talk you into a year,” she answered. “Sometimes hemicrania just burns itself out. Sometimes it doesn’t.”

The quiet paring of disease, the fraying at the edges of liver and heart, the vision slowly blurring, the cough that sticks around. Sometimes we can only rely on a kind of maladaptation. We get used to it.

All along, I have written about my headache, as though it were a possession, something I could grasp. This headache has been my close companion for a while now; we are intimate. I’m not a migraineur; I’m not a clusterhead. Perhaps hemicrania is not that uncommon, but I’ve never met anyone else who has it. That my doctor even knew enough to suspect it is to her credit; most doctors and nurses I know have never heard of it. Most have never heard of chronic daily headache, and several have asked me, “So when someone tells me they’ve had a headache for years, maybe I should believe them?” Yes, I say. Believe them.

I’m on a drug that is not benign; I’ve gained some weight, and my blood pressure has gone up a bit. I am still occasionally dizzy, and, for the first time in my life, I’m sensitive to the sun. Only months after I began taking lamotrigine did I suddenly remember that it is sometimes used for mood disorders; now and then I wonder how much of my sense of well-being is just the chemical. But it helps. Reading my journal from the spring, I find it hard to accept my fragile handwriting, the daily recording of what felt like slow destruction. I don’t have a headache most of the time now, and not having a headache is like being twenty years younger. I have energy and good cheer and I can hike and travel. I can write again, at last. Then the surge comes. I stop, hold my hand against my temple, cupping my eye. I stand still for a moment, feeling the pain scrape across the bone above my eye and fade. And then I forget again.

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