What My Life Looks Like as a Person With Migraine
My children pause briefly in the hallway before tiptoeing into the dark bedroom. As they lean down to kiss me their hair, still warm from the sun, brushes my face, and I catch the smell of damp soil and sweat on their skin. I lie unmoving under the blanket with my head, which feels as if it will split open, cradled in my hands. My son climbs under the blankets and presses his body against my clammy two-day-old pajamas. In his best approximation of a whisper he says, “Mama, can I just be here with you for a while? I promise I’ll be very quiet and still.” I don’t really move or speak because either of those things will make the pain worse. My daughter climbs in on the other side of me and breathes a similar promise into my face. At first they are still, but soon they begin to squirm, jockeying for more space, more blanket, more of my body touching theirs. The slight movement of the mattress makes my stomach churn and the bile rise in my throat. Risking the pain, I order them to be still.
My son finds a book left behind from a previous visit and begins to the turn the pages. The whisper of paper touching paper sounds unbearably loud. There is a physical feel to the sound that causes a sharp pain in my inner ear. I ask him to stop.
My daughter gets up and goes to the window. She pulls back the curtain and the late afternoon sun fills the room. I cover my face and cry out in pain. My son scolds her and, alarmed, she jumps on the bed and shouts at him. I am crying now. Weeping, really. And cowering away from them.
My husband bustles in, chiding the children for bothering me. He reminds them for thousandth time in two days that I have a migraine and need to be alone. My daughter howls in protest at being told to leave. She screams my name as she is carried downstairs and away from me. Again. My son sighs heavily and kisses me gently. “I wish you weren’t always so sick,” he says as he closes the door softly, though not softly enough, and joins them downstairs.
Through the floorboards I hear my daughter’s tears turn to laughter as my husband distracts her with a game. I smell the beginnings of dinner. I vaguely sense the day passing around me. I feel guilty relief at being left alone in the dark again.
This isn’t a rare scenario in our house. This is normal life for us. Three or four days out of every week, sometimes more but rarely less, I am suffering from a migraine. Many other days I feel the telltale neck stiffness, the irritation behind an eye, the churning nausea, the racing heart or the mental and physical irritation that indicates an attack is imminent. Sometimes I can avert a migraine with medicine or rest or dumb luck. Other times the medicine doesn’t work, or I’ve already taken too much medicine that week, or the migraine comes on too suddenly, and then I am swallowed up by the pain. The few days each week I don’t have a migraine are spent recovering, recouping and picking up the pieces of a life put on hold.
I was in my early teens when my head started to throb and pound for several days out of each week. The pain was most often centered deep behind my right eye. I would have the discomfiting urge to temporarily dislodge my eyeball in order to relieve the pressure. I was in enough pain that everyday activities like school, reading or just interacting with other people felt overwhelming. Ordinarily inoffensive smells (like food cooking) and ordinarily inoffensive sounds (like book-pages turning) were nearly unbearable and overpowering. I was constantly nauseated and had to force myself to eat. I couldn’t understand how my friends had so much energy while I only looked forward to going back to bed. Pain relievers like ibuprofen and acetaminophen did so little to ease the pain that I was convinced they were nothing more than modern day snake oil.
I didn’t know then I had migraines. Unfortunately, it turned out my family doctor didn’t either. There is no blood work, brain scan or other test to see if someone has migraines. Rather there are a collection of symptoms (throbbing head pain along with an extreme aversion to light, smells, touch or sounds, nausea and vomiting and dizziness) that define a migraine. My doctor, however, pinned his diagnosis on my lack of visual or physical auras; a symptom affecting only about 20 percent of those with migraine.
25 years later I still remember the way the paper rustled in the otherwise silent exam room after I answered no to his question of whether I ever saw flashing lights or felt numbness in my arms before my head hurt. I just wanted an answer that would explain and maybe even end my pain. I remember the way my stomach sank as he gently shifted the conversation away from my physical to my mental health. I was a physically healthy young woman, he said. The tests didn’t find anything wrong with me, he said. Maybe I was depressed or stressed or lonely, he suggested. As a teenager living in chronic and undiagnosed pain I was certainly all these things, but I was also physically sick. He recommended I avoid stress, rest more and find things that made me happy.
His prescription left me worse off in many ways. I spent years believing the problem was me. I believed everyone’s headaches felt this way and I was simply too weak to cope. I believed if I could just find a way to be happy enough or calm enough or balanced enough the pain would subside. The pain, I thought, was clearly caused by my own weakness, so I pushed myself to work harder and be stronger. I went to class day after day and year after year when I could barely keep my head up. I pressed my thumbs into my orbital bones or the base of my skull until I saw black, enjoying the way the self-inflicted hurt temporarily blocked out the otherwise all-encompassing pain. I pressed my head against windows and walls for the momentary relief provided by their cool touch. I ate in tiny portions to try to control my nausea. I spent night after night unable to sleep because the pain was too great. And every time I hurt I castigated myself for always being so tired and so weak. I tried not to allow myself to cave to the pain because I was sure I wasn’t really sick. I told almost no one about how awful I felt almost every day. I believed all of it was my fault; and I was deeply ashamed.
10 years later, when I was finally diagnosed, the neurologist said with a shrug that my symptoms were textbook migraine. At last there was a name for the days and days of agony, but I still didn’t consider myself to have a condition or a disease. Instead I saw each migraine as an isolated event caused by something I could have avoided. This time I wore the wrong sweater and was sick for three days. That time I forgot my sunglasses and had a migraine for two days. Another time I laughed too hard and too long at dinner with friends and spent the rest of the weekend in bed with the curtains drawn. Some other time maybe it was because I got too hungry or I drank a glass of wine or I did push-ups or overslept or my hormones fluctuated or I got my teeth cleaned or I was anxious.
Encouraged by doctors and the internet, I compiled a list of things I noticed triggered a migraine. At first I felt empowered by the exercise, but the list grew and grew until it looked something like this:
Constrictive clothing, ponytails, alcohol, chocolate, sugar, television, reading, dehydration, under-eating, overeating, maybe some cheeses, maybe some dried fruits, over-exercising, under-exercising, carrying heavy things, allergies, bright sun, squinting, humidity, rain, overcast days, glare, overheating, shivering, strong smells from gasoline to flowers, lavender, loud noises, loud music, nasal congestion, coughing, laughing, crying, yelling or cheering, talking too much, long car rides, air conditioning, too little sleep, too much sleep, vacations, traveling, fluorescent lights, flashing lights, too much caffeine, too little caffeine, sex, hormone changes and my menstrual cycle.
In the end, knowing my triggers provides only a frustrating veneer of control. I don’t drink red wine or whisky and thereby avoid migraines directly triggered by them. However, short of living inside a pressurized bubble, weather and odors are nearly impossible to avoid. Then there are some triggers, like sex and laughter, where I simply choose the risk of indulgence over the austerity of avoidance. Triggers aren’t always dependable either; and they can change over time. Even when I do live a nearly puritanical life under sunny (but not too sunny) hormonal-free skies, I still get migraines simply because I am someone with the unlucky genetic disposition to get migraines.
For me, a migraine often starts as pressure and tension coiled in my neck and shoulders. From there it snakes up the back of my head before finally striking behind my eye with sharp and piercing pain. Like so many people with migraine, I often fantasize about self-taught lobotomies and bringing back trepanning. The pain is often so severe I only move when absolutely necessary, walking doubled over or crawling from place to place. During other attacks the pain is manageable, but the secondary symptoms of nausea, sensitivity to sound and smells, dizziness and weakness make me seek out solitude. Symptoms are not always predictable either. Sometimes I can’t speak in coherent sentences, or my face twitches uncontrollably. Other times it feels as if I cannot see properly, or as if my eyeballs are set too far back in my skull. Occasionally, my scalp tingles and stings for hours or days after a migraine. I often feel confused and have trouble following simple conversations.
Almost always when I have a migraine, everyday sounds feel painful. A spoon clinking on a bowl reverberates like a tuning fork has been struck against my skull. A glass being set down on the table rings loud like a church bell. Paper crumpling or a pen scratching on paper feel like my eardrum is being scraped. There are migraines – heartbreaking migraines – when the pitch and cadence of my children’s voices makes their words sound garbled and unintelligible; when listening to my children talk causes me physical pain. At times like these my daughter singing a song near my ear, or my son explaining his latest video game can make me feel panicked and confused.
There is no cure for migraines. The handful of drugs specifically designed to treat the pain and nausea of migraines can often cut an attack short, but they can only be used a maximum of twice a week, they don’t always work, they are expensive and insurance companies limit the number of pills prescribed. All the daily medicines to prevent migraines (used for people who suffer 15 or more attacks a month) are borrowed from another disease or condition. Anti-seizure medications, beta blockers, nerve blocks, Botox, muscle relaxers, and antidepressants, for example, all happened to reduce some patients’ migraines, but none of them are designed to target migraines.
These medicines also come with a host of side effects, ranging from annoying to debilitating, and only have a moderate chance of success. One drug made my hands tingle constantly and was likely to impact my word-finding capabilities. Another made me so prone to panic attacks that I hardly left the house, but I still had migraines all the time. Most recently, I willingly let a doctor inject a mixture of anesthetics and steroids via a large needle directly into the occipital nerves located at the base of my skull; a process that sounds far more like medieval torture in theory than it is in practice.
Over the years I’ve also been diagnosed and treated by acupuncturists, chiropractors, homeopaths, massage therapists and random strangers with well-meaning advice. I’ve followed extremely restrictive diets meant to reduce the yeast, the damp or other perceived impurities in my body. I’ve meditated, huffed essential oils, yoga-ed and had glass bowls suctioned-cupped onto my back (Gwenyth Paltrow does it, too). I’ve taken Chinese herbs, vitamins, tinctures, homeopathic remedies and minerals (very few of which are scientifically shown to reduce migraines). Some of it – like the frustrating game of word association I played while being videotaped by a practitioner who promised my subconscious would lead her to a holistic cure – sounds utterly ridiculous in hindsight, but the promise of freedom from debilitating pain easily overrides logical reasoning and the scientific method.
None of it has made more than a maybe slight and short-lived improvement. The one tie that binds the medicinal, the alternative and the absolutely ridiculous remedies together so far is that my migraines have always kept coming regularly and without fail.
People are often quick to point out that migraines are not life-threatening. They are not cancer or even diabetes. They will not usually cause a stroke. They do not cause lasting damage. This may be true, but migraine is a disease. And one that makes it difficult to have any sort of a life with frequent attacks. When I have a migraine I am either partially or completely debilitated. When the medicine works I may be back on my feet in a few hours to a day. When it doesn’t, I’m usually incapacitated for three days. The day or two after a migraine I feel lethargic and hungover, so even when the migraine has passed it can be hard to get back to daily life. With only a few days between migraine attacks it can feel like I’m caught in an inescapable cycle of pain and convalescence. It feels as if there is hardly any routine to my life, except the routine of chaos and damage control.
If we’re judging by the cardinal rule that consistency is of the utmost importance in raising children, then migraines make me an utter failure as a parent. I often cancel plans with my kids at the last minute; and I routinely break my promises because I’m too sick to follow through. Often getting them a snack is such a physically demanding ordeal for me that they feel compelled to apologize for being hungry in the first place. I miss hearing about their days, eating meals with them, reading with them, playing with them or hugging them even though I am home. I am absent even though I am right beside them.
When I am ill, housework goes untended, social plans get canceled, work and volunteer commitments are dropped and deadlines are missed. My life is littered with projects left unfinished because of migraines. When I am sick my husband takes on all the household and parental duties as well as caring for me. He tries to balance his own full-time work and my responsibilities. He makes my apologies for our sudden absences, of which there are many. He never blames me for being sick, but I see the way it exhausts him to carry so much of our lives for so long.
Repeated last minute cancellations take their toll on other relationships as well. I’m fortunate enough to have a very understanding core group of friends, but those casual friendships people develop by consistently running into each other at the park, school pick-ups, meetings, the post office, the grocery store and at social events are much harder for me to develop and maintain.
Each day, each week, each month, each year feels like it’s made up of a million tiny compromises and wagers. If I choose to clean the bathrooms and vacuum, I run the risk of needing to go to bed before dinner. If I go out for dinner with friends, it’s likely I will have to spend most of the next day in bed. Choosing to go to a meeting under fluorescent lights comes with a high risk of waking up sick the next day. Joining a committee, taking on new work or even making an appointment for a haircut is taking a terrifying leap of faith that I will be well enough to follow through. I tend to resist making too many plans, or striking up new friendships because chances are good that I will have to cancel more often than is socially acceptable. I wouldn’t fault someone for thinking I must be exaggerating, but I’m not.
I’ve understood that I have migraines for nearly 15 years now, but it’s sometimes still hard for me to understand I am sick. I sometimes only see what gets missed, canceled and left undone. I catch myself trying to push through and ignore the pain, the nausea and all the other symptoms. In days after a migraine it’s easy for me to wonder if it was really that bad. Maybe I was just being melodramatic, I think. It’s easy even for me to forget that migraine is not just a headache, and that pushing myself unfailingly makes it worse. It’s easy for me to think about how many people have it worse than I do and who appear to do more and be happier. I keep a running masochistic mental list of very accomplished people who also struggle with migraine.
It’s harder for me to acknowledge the physical and emotional toll migraines take on my life, my health and my relationships. It’s much harder for me to look at what I manage to accomplish between and during attacks. It’s harder to admit I am chronically ill.
And yet, I wake up each day with some hope that today will be better than yesterday; that next week will be better than last week; and that someday the future will hold less pain than the past. I remember I am not alone. There are 37 million people – the majority of them women – in the United States alone who also have migraines. I remind myself again and again that a migraine isn’t just a headache; and that it’s not “all in my head.”
This post originally appeared on Par Cooked.
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Thinkstock photo via Dreya Novak.