Pain in the Brain The Headache Diaries
The diary was how I organized a life suddenly thrown into chaos. This is what the human mind does; it looks for a narrative, for meaning.
This is Pain in the Brain, a column by Melissa Hung on life with a chronic headache.
Every night, I write down a number representing the level of pain I experienced that day. My pain, though constant, may surge and ebb throughout the day; if this is the case, I write down several numbers and draw arrows between them to indicate the flow of pain.
But this data is too detailed for the headache clinic, where I’ve been a patient since June 2016. At the clinic, a headache diary is a landscape-oriented grid on a piece of paper. Each skinny rectangle represents one day, and in it I am to record the day’s HAScore (headache score), treatment (any medications I took), and period (if I was menstruating). There is room for only one score per day; if my pain fluctuates, I round up. Last year, upon meeting a new neurologist, I filled out this diary along with my paperwork: one year of my life condensed to two sheets of paper. I transferred these numbers over from my own headache diary, which I keep in a lined notebook.
In the six years I’ve lived with a chronic headache, I’ve gone through six notebooks and am now on my seventh. At first I used a small one, plain and unassuming, with a black paperboard cover. In addition to the date and pain level, I’d write a line or two about anything notable that happened that day. “Dinner at M’s,” reads one early entry. “Not feeling good while eating.” In those early days, I carried the headache diary everywhere. I jotted down notes from doctors’ visits, kept a list of the drugs I’d been prescribed and the dates I tried them, tracked the days of work that I missed and the dates of my acupuncture sessions. The diary was how I organized a life suddenly thrown into chaos by the headache—I had woken one August day with it—as if recording what was happening to me would somehow help me control it.
My handwriting is uncharacteristically neat in the beginning. I even numbered each day of the headache—or rather, my best guess (the headache arrived in such an ordinary way that I didn’t record the exact day it began). I noted symptoms, what I ate, my activities. For example, on day 174 (or thereabouts), a Thursday, I woke with a twitchy eye. I ate oatmeal and mac and cheese. I swam . Looking back, I interpret the neat handwriting and the numbering as signs that I had hope; that I believed the headache to be a strange puzzle that could be solved. But over time, the notebooks have gotten larger, the entries longer, my handwriting sloppier. The strange has become my normal. I’ve accepted that this uninvited houseguest might take up residence in my body for the rest of my life.
I have kept a journal since I was a child, telling the story of my life back to myself. The wide-ruled spiral notebooks containing my early middle-school diaries recount ordinary school days, family vacations, and tenuous friendships in round, looping script, each entry in a different ink color. But by high school, my journal reflected an undercurrent of anguish and anger.
“I am all sunk and I don’t understand,” fourteen-year-old me wrote in one entry. “I feel so angry at the world. I’m writing in here to calm myself down.”
Like the headache, my emotional turbulence was a pain that no one could see. I felt misunderstood at home and unseen in the world.
I know now that my immigrant parents tried to set a trajectory for a life they hoped would be easier than theirs, that they were not equipped to understand what it was to be an Asian American girl in 1990s Texas. My good grades belied the crying behind closed doors, the self-inflicted cuts hidden beneath long-sleeved shirts, the pages and pages I wrote late at night by the light of a lamp about my hurt and frustration.
The door in the waiting room swings open as a medical assistant in scrubs calls my name. She directs me to step on a scale in the hallway, then seats me in a room where she checks my temperature and blood pressure. But there is no pain thermometer. There is only the number I choose.
“Are you experiencing pain?” she asks.
“Yes.” I am always in pain.
“What number, on a scale of zero to ten?”
An example of the scale is pinned to the whiteboard by a magnet. It shows a series of illustrated faces, six in all; one for zero and each of the even numbers. Sometimes I ask to see it, because even after all these years, I’m not sure how to demarcate my pain.
In the six years I’ve lived with a chronic headache, I’ve gone through six notebooks and am now on my seventh.
For all my dutiful record-keeping, the number I assign to my pain feels unsatisfying; inexact. The face for zero smiles widely. “Alert, smiling. NO PAIN,” the description beneath it reads. On the other end of the scale, at ten, is a face with jagged teeth and sharp lines indicating a deeply furrowed brow. The face looks angry to me, but the text reads, “Agonizing screams, face distorted beyond recognition. DEATH IMMINENT.” The face for six has a down-turned mouth. “Serious Pain: Intense stare, grimace. INTERFERES WITH CONCENTRATION.”
I consider this last piece of information. I rarely rate my pain as a six, though there are days it interferes with my concentration. Most days, my answer is a three or four. Have I been under-reporting my pain?
The instructions from the clinic describe ten as “the worst pain you have ever had.” Do they mean headache pain or any kind of pain? I think back to the time my friends drove me to the ER after a night spent vomiting. I threw up everything I had in my stomach, but my body continued to lurch. I threw up water. I threw up acidic bodily fluid. My insides felt like they were twisting over and over. In the ER, they tethered me to an IV, dripping morphine into my veins. That might be the worst pain I’ve experienced, but I hesitate to rate it a ten. It did not feel like “death imminent.”
What does the medical assistant imagine when I say, “four”? Is it even possible to know someone else’s experience of pain? People experience pain differently. Some people hardly experience it at all. There is a woman in Scotland who forwent painkillers after hand surgery and found childbirth to be no bother. It turns out she has a rare genetic mutation that keeps her from feeling pain . Scientists are still trying to understand how the brain regulates perception of pain.
The best I can do, then, is to keep my own pain scale consistent. What should a five, the midpoint, be for me? I decide it should involve crying. But when I cry, it’s never because of the physical pain. I cry because the pain has been unrelenting for years. I cry because it could go on forever.
The pain scale is inadequate when it comes to chronic pain. It only considers the intensity of pain, not its duration. Not the fatigue. Not sorrow over the things I can no longer do.
My pain is invisible, unmarked on my body. It shows nothing on an MRI. The only flimsy evidence is the number I give from an eleven-point scale, conveying the barest of information. I can try to use words, though they too feel imprecise, and say that my headache feels like a band of tightness across my forehead. That sometimes a heaviness sloshes in my head like some ghostly fluid. That a throbbing sensation grows when I lie down and I imagine my blood working too hard to push through the vessels inside my head.
But my pain is also my diminishing stamina; my cloudy thoughts; the panicked realization, while heading home at eight p.m. on the subway, that I am suddenly overcome by fatigue—will I have enough energy to make it back okay?
The diary was how I organized a life thrown into chaos by the headache, as if recording what was happening to me would somehow help me control it.
Recently I entered the data for the past year into a spreadsheet. Last year felt a little worse on a whole than the year before. Why? I turned the data into a graph. On the X-axis: dates. On the Y-axis: pain. I marked the dates of various treatments (there had been three kinds) and my menstrual cycle. I already knew that the pain was connected to my cycle. The wobbly line representing pain reflected that, often spiking right before or during my period.
I studied the graph, searching for other patterns. This is what the human mind does; it looks for a narrative, for meaning. On the graph, the treatments appeared to have no effect on the pain. The peaks and valleys didn’t seem to correlate to anything else. I could not make sense of it.
Now that my headache appears to be here to stay, the pain diary is just a diary. I record more details of my day in case they offer clues, but mostly because I want to. How well did I sleep? What did I eat? Did I exercise, and if so, for how long? Did it rain? If I remember a snippet of a dream, I describe it. I write a few sentences outlining the shape of my day. Sometimes I write a to-do list complete with check boxes, setting intentions. Sometimes, in the morning—particularly on days when I wake with more pain—I write an affirmation, a pep talk for myself. One entry from September simply reads: “I can do it.”
When I revisit the spiral notebooks of my teenage self now, I feel a deep sadness over my adolescent self-loathing. I wish to be gentle toward that girl, something she never allowed herself. That long-ago pain is no less real, but my perception of it has changed over time. Maybe, years from now, I’ll look back on these headache diary entries and see something new.
In January, I stocked up on the notebooks that I use for my headache diary. They are A5-sized, 160 pages, with lay flat binding. I continue to record the minutiae of each day and the nuances of my pain, taking solace in the ritual of writing things down. I write for myself, but also for my future self. The answers I seek may not even be what I believe I’m looking for.