The Long Read: When I was 26, I started suffering from dizziness, brain fog, fatigue and chronic pain. Id had migraines since childhood, but these felt different
For six years, my mother worked at a teachers college in the same building where I went to elementary school. We lived a few blocks away, and until I was old enough to walk alone, we went together.
Each morning we stopped at a Lebanese deli, fragrant with freshly ground spices, where she ordered her coffee. I carried the cup. For as long as I could remember, she had suffered from a painful neurological disease that numbed part of her legs, made it hard to lift her feet, and sent shooting pains up and down her limbs. She wore a brace on her left foot (and, later, on her right) and two metal forearm crutches to steady her as she walked. They made it impossible for her to hold anything a purse, a cup of coffee, my hand.
We walked very slowly. My classmates and their parents overtook us, and my mother moved aside to clear a path. When pain overwhelmed her, she stopped to catch her breath. She would sigh, brush her hair from her face, smile, but I could see her jaw was set.
Years later, she told me that by the time she reached her office, closed the door, untangled her arms from her crutches, and hung up her coat, she was in so much pain that she would lie down on the floor and cry. Then she would get up, wipe her tears, sit down at her desk, and listen to her messages. She sipped her coffee; by then it was cold.
* * *
Ive always been told that I look like my father, but when I look in the mirror, I see a version of my mother. We have the same freckles, the same smile, the same streaks of grey in our hair when we sweep it back from our temples.
My mother began to show symptoms of neuropathy before I was born: fatigue, sporadic pain, swollen joints, tingling in her hands and feet. By the time I was three, there were days when she couldnt get out of bed, though she couldnt say exactly why. The symptoms are common to a cluster of chronic diseases (rheumatoid arthritis, multiple sclerosis, lupus) that are hard to diagnose and hard to treat. Scientists believe these conditions are triggered by some as-yet-unidentified factor in those who are genetically predisposed. It took more than five years for a doctor to admit that there was something wrong with her, that it wasnt all in her head. When I was 12, her symptoms flared and she left her job first for six months, then for a year, then for good.
At 26, I begin to experience my own neurological symptoms. Ive suffered from migraines since I was a child but this feels different. My head aches every day. Im dizzy, weak, and exhausted. My vision snows out. I forget what Im saying in the middle of a sentence; I forget even my friends names. I take a dose of Advil most days to manage the pain.
My general practitioner sends me home with a prescription for diclofenac, a stronger version of the ibuprofen Ive been taking. Im meant to take it twice a day for 10 days and then report back. He hopes it will clear my head.
Instead, the twinge of pain thats present when I wake each morning expands. By the time I get to work, it has gathered in my forehead and at the base of my skull, like a fog rolling in. I know the sensation comes from nerves and blood vessels, but it feels like a creature with its own will pushing itself through my skull. In the afternoon sometimes the pain gets so bad that I lock myself in a bathroom stall and cry.
A colleague gives me the name of a neurologist who specialises in migraines and who has a packed schedule. I use her name to get an appointment. The doctor asks me very specific questions where does the pain originate, where does it go, what makes it worse.
The doctor mentions several possible diagnoses: new daily persistent headache, migraine with aura, and hemicrania continua, a headache on one side of the head that never ends. He settles on chronic migraine, a description that means I have at least 15 headache days out of every 30, though for the past several months Ive had a headache every day. He explains that the episodic migraines Ive had my whole life can develop into a chronic condition through medication overuse all that Advil or bad luck. The dizziness, the brain fog, the fatigue they are probably related. Sometimes the migraines become intermittent again, he says, but sometimes they dont.
Throughout my childhood my parents told me again and again that my mothers condition was chronic. Chronic, I was assured, is the opposite of fatal: its something you live with for a long time. I think of my mothers whack-a-mole symptoms, the mystery of her diseases genesis, the side-effects of her medications. My mothers conditions are not hereditary, nor are they related to migraine, but neurologists still want to test my blood for rheumatoid factor and other traces of autoimmune disease.
I shouldnt be surprised. Every body goes haywire. I think of my mothers empty days out of work, before she knew how to fill them. I think about what I might have inherited.
* * *
Headaches are one of the most common symptoms that patients report to their doctors, but their causes and manifestations vary so much that a diagnosis does little to help.
From the Greek hemi (half) and kranion (skull), migraine is associated with severe, throbbing, unilateral pain; an aversion to light and sound; and nausea and vomiting, all of which is aggravated by movement. But migraine may include or trigger many other symptoms. An attack may be announced by sudden exhaustion, food cravings, a foul mood, or what is called an aura, a neurological phenomenon that disrupts a migraineurs vision with silvery squiggles and zigzags.
For some, a migraine might include extreme sensitivity to touch, partial blindness, vertigo, or the inability to speak. There are also vestibular migraines attacks associated primarily with dizziness and abdominal migraines, when pain is instead felt in the stomach. Both of these may occur without head pain and can be bewildering to patients seeking a diagnosis. After an attack which may last up to four days many migraineurs suffer from a post-drome, when they might feel listless, agitated, or depressed.
Although migraine symptoms have been described since antiquity, doctors still struggle to understand their cause. For much of the early 20th century, migraine was thought to be a vascular condition, something that could be treated by restricting blood vessels. Now, most neurologists argue that migraine is a disorder of the trigeminal nerve system, where overactive cells in the face and head respond to benign input (light, sound, smell) by releasing chemicals that transmit pain. But doctors still cant offer reliable relief.
The best treatment available is prevention, so my doctor tells me about possible triggers stress, menstruation, sleeping too much, sleeping too little. Beyond that, treatment is a process of trial and error.
For several months, I remain calm. I get myself to work. I carry a green calendar where I record my symptoms, the progression of pain throughout the day, what I eat and how much I sleep all to help me discern a pattern. I avoid common triggers: caffeine, sugar, alcohol, and chocolate, for sure, but also citrus, bananas, cheese, cold cuts, avocados, nuts. I omit dairy, just in case. Everything for sale in my office cafeteria, including the soup and the salad dressing, has MSG in it, so I pack my lunch. None of this offers relief.
I phone my doctor almost daily: to repeat my complaints, to ask for new prescriptions, to plead for relief. I have no privacy at my desk, so I make these calls in a small closet with a photocopier.
My colleagues try to understand. One sees me crying in the bathroom and tells me it will only make the headache worse; she holds me by my shoulders until I can control my sobs. Another tells me I need to do more yoga, that its stress thats getting to me. Others ask me again and again if the doctors have figured out whats wrong. Its inconceivable to most people that this is it there is no other, underlying condition. The headaches are the condition itself.
* * *
One at a time, I try more than two dozen medications to prevent or abort my migraines. I try anti-inflammatories, steroids, muscle relaxants, antihistamines, beta blockers, calcium-channel blockers, SSRIs, tricyclic antidepressants, antipsychotics, anticonvulsants, and a medication prescribed to slow the onset of Alzheimers. Nearly all these medications are sedative.
I try other treatments, too. I get IV infusions of steroids and magnesium. I have lidocaine injected into my scalp to numb the pain; instead of providing relief, it trickles down to the lower branches of my trigeminal nerve, so that I cant blink or move my mouth. I buy a $300 electrical device that I hook over my ears and connect to my forehead via an electrode for 20 minutes each day. It sends an intense tingling sensation across my forehead and over the top of my head to stimulate the trigeminal nerve. (Counterintuitively, this is meant to stop it overreacting.) I visit my neurologist every 12 weeks to have Botox injected into 31 sites on my face, scalp, and neck. I spend outrageous sums on treatments and therapies; its all my money seems good for.
Pain is a message from the body to the mind that something is wrong. Headache pain, though, is opaque, and its source and its message are hard to divine. Theres no tissue damage, no trauma, no infection. A headache can alert one to something as sinister as a tumour, or it can come and go with a rainstorm.
A migraine attack blurs the distinction between sickness and health. Headache, dizziness, nausea, trouble concentrating, fatigue, poor verbal skills these symptoms could just as easily result from a hangover or a bad nights sleep. That the same symptoms can result from irresponsible decisions gives patients an air of culpability. The same can be said for many of the symptoms of chronic autoimmune disease, fibromyalgia, and chronic fatigue syndrome.
Joanna Kempner, a sociologist at Rutgers University and author of Not Tonight: Migraine and the Politics of Gender and Health, writes that people worry when they cannot fulfil their end of the so-called sick role, an implicit social contract in which sick people are given leave of their everyday duties, as long as they adhere to certain rules, such as seeking appropriate medical care and working hard to get better. But these obligations are difficult to meet when there is no effective treatment.
The easiest explanation for my condition is my self-medication with Advil, so thats the reason that I offer when anybody asks. (Never mind that I took the pills as directed.) I tell myself that if I strain through my fatigue to exercise, keep a consistent sleep schedule, or meditate each day, then maybe I wont be so sick. Susan Wendell, a Canadian sociologist with chronic fatigue syndrome, writes that this kind of thinking may be part of a rationalising rejection of ones former, healthy self, in order to adjust to a new body and a new way of life.
* * *
Almost 20% of women suffer migraines, and 75% of migraine sufferers are women. That same group of hard-to-diagnose and hard-to-treat diseases lupus, rheumatoid arthritis, and multiple sclerosis, but also chronic fatigue, chronic headache and fibromyalgia primarily afflicts women. Women are more likely than men to be disabled by chronic illnesses, Wendell writes, and women (including women with other disabilities) suffer more ill health than men. Women live longer than men, but much of that extra living is done with a disabling chronic illness.
Wendell points out that those chronic conditions bring with them the kind of invisible impairments that can cripple a patient without appearing notable. Pain and/or fatigue are major sources of impairment in many chronic illnesses that are more common in women than in men, she writes. It is exactly these impairments that are easiest to dismiss or misperceive as psychosomatic.
And doctors treat complaints about such conditions differently when they come from women. Kempner cites studies that show physicians prescribe less pain medicine to women than they do to men, even though women are more likely to suffer chronic pain. Other studies show that women are more likely than men to be prescribed antidepressants and tranquillisers rather than pain medication for their migraines. Add to this the fact that migraine is more likely to occur in people with mental health diagnoses such as depression and anxiety, both of which are more common in women. All of this makes it hard to untangle migraine and other chronic pain conditions from stereotypes of female weakness and hysteria. The characterisation perpetuates the notion of the migraineur-as-malingerer, the sensitive soul disabled by everyday disruptions.
* * *
My symptoms are such a hindrance and so unresponsive that I seek treatment and third and fourth opinions from other specialists. My mother sends me to her pain doctor, a sweet-natured man with the ghoulish name of Dr Hertz. On a Friday afternoon, I leave work early so Dr Hertz can inject steroids into joints in my neck, a treatment that might block the nerve signals my brain misinterprets as pain. My mother comes, too: after the procedure she tucks a blanket around me and passes me cartons of apple juice. The injections dont change how much pain I experience, but the next day I wake up even dizzier, with the woozy sensation that my body is rocking in space. At the office, I walk along the corridor with my hand brushing the wall to keep my balance.
Next, I go to an audiologist to find out if the dizziness might be vestibular. She puts what looks like a virtual reality headset over my eyes and has me count aloud the red lights that flash across my field of vision. She blasts warm air into first one ear and then the other. It creates uncomfortable pressure in my ear canal and makes me feel as though I am spinning backwards. I grow nauseous and lose count, but she shouts at me to continue. Afterwards, I go back to work.
The following week, another doctor interprets my test results. Nothing is wrong with my inner ear, he says. Im suffering from migraine-associated vertigo, and only the treatment my neurologist is already pursuing, however ineffectually, can help. There is nothing else he can do for me.
* * *
As the daughter of a sick parent, I was aware very young of the subtle yet consistent derision directed at the ill or disabled. The undergirding notion was that to live with physical limitations was to live a partial life: illness or disability precluded fulfilment or freedom or happiness. Wendell notes how common it is to hear people who are healthy and able-bodied say they would not want to live if they had to use a wheelchair, lost their eyesight, were dependent on others for care. It made me angry still makes me angry that people think that their physical capacity results merely from an effort of will. A Nike shirt I saw recently: Pain? Never Heard of It.
The ill and their loved ones know that bodies do not always heal or recover. We are not always resilient. Many illnesses can be treated but not cured, and pain can only be managed. We know that disability isnt the result of bad luck or poor health: its the inevitable transformation and breakdown of the body. The ability to ignore your body is a temporary privilege. We will all find ourselves in the position of patient and the position of caregiver, some day.
A year after my diagnosis, my boyfriend becomes fed up with my haphazard treatment, with the side-effects. Hes frustrated that my doctors cant chart a clearer path and criticises me for trying too many medications without considering the consequences. I try to explain what Ive learned, from watching my mother and now living it: that all medicine is guesswork, that doctors rarely admit when they encounter a gap in their knowledge, that neurology is so murky, that these kinds of chronic illnesses are neglected because they dont warrant drug studies. Just wait until youre sick, I tell him; then hell understand. He reacts as if Ive wished him harm.
Its hard to believe that a headache, something so seemingly mild, can so radically and quickly change your life. But if you read about migraine prognosis in neurology journals, on chronic pain blogs, in newspapers youll find studies indicating people with migraines have poorer social interactions and emotional health than patients with asthma, diabetes or arthritis.
This is hard to communicate when you appear to be young, healthy, and able-bodied. To be recognised as disabled, we have to remind people frequently of our needs and limitations, writes Wendell of women who suffer from chronic, invisible disabilities. The struggle for recognition is constant, even among the most compassionate: Some people offer such acceptance readily, others greet every statement of limitation with scepticism, and most need to be reminded from time to time.
* * *
Months pass and my commute becomes unbearable. It feels as though Im always carsick. The tilt of the subway car as it turns makes my stomach contract, the back of my head clench. So does perfume, a loud conversation, the tinny leak of music from earbuds. I wear earplugs on the subway to stifle the sound of metal wheels on metal tracks; when I cant get a seat, I fall asleep standing up.
The calls to my mother multiply I cant keep up at work, I cant get on the subway, I cant get out of bed, I cant stay awake. My mother sighs. If only you knew how much I wish I could take this pain away from you, take it into my body, she says.
Only once does she tell me that some days she thinks, Oh God, did I give this to her? And if thats true, she says and then she cocks her hand like a pistol and holds it to her temple.
After a year of experiments and procedures, between doctors appointments and my fatigue, Im having trouble keeping up with my job. When the vertigo is at its worse, I tell my mother I cant do it any more.
To activate my employers disability insurance, my neurologist fills out a form attesting to my impairment. She writes: Patient suffers from chronic migraines, with severe disabling pain, disabling vertigo at times, and side effects from medications used to treat migraines. Onset > 1 year ago, probable duration lifelong. Probable duration lifelong.
* * *
My neurologist agrees that I need acute care, but hospitals in New York City, where I live, dont offer inpatient treatment for migraine. I arrange to go to a clinic in Chicago. I buy a plane ticket for my mother and one for myself.
At the Diamond Headache Clinic, I meet the people who suffer from the catalogue of headaches Ive read about. Theres the young woman around my age who woke up one day 21 December, 2010 with a headache that never went away. Her drug regimen at the clinic includes Haldol, an antipsychotic that leaves her sleepless and edgy. At night she walks up and down the corridor ringing her hands, tears streaming down her face.
Theres the man who suffers from cluster headaches, which are said to be the most painful kind. Every afternoon the headache arrives at the same time. He sucks at an oxygen mask and moans so the whole unit can hear him.
Then there are the women who have been to the clinic several times. Some are middle aged and look forward to menopause because it may relieve their headaches. Others are so impaired they have never been able to move out of their parents homes. There are teenagers with migraines and seizures, adults with head trauma. Theres the little boy who has suffered headaches since he was four.
In the hospital I meet a new version of my mother, too. Although her presence is peaceful and calm, she speaks up to ask the doctors questions. She stops apologising for the space she takes up. When my blood pressure plummets, my mothers new-found assertiveness forces me out of bed. I wheel my IV pole down the carpeted corridor; my mother calls it walking the dog. My body is so sapped that I dont need to adjust my pace to accommodate her limp. We pause and examine the hospital art so I can catch my breath.
One morning, as my mother sits reading, I see a spider just behind her right shoulder. She is phobic and I dont want to alarm her.
She obeys and then watches my eyes as I find a tissue.
Was it big? she asks.
No, but it was there.
How dare it invade our haven?
* * *
I return home to eight weeks of disability leave. I begin to write this essay not to glean any new understanding per se but to find the words to describe this experience. I have a new brain to get acquainted with. There is an additional layer between the world and me, obscuring my senses, like Im wearing socks on the beach.
I learn that to function well I need 10 hours sleep every night. I need to schedule time to rest every afternoon. A doctors appointment and food shopping can fill an entire day. Sometimes I cant even manage that.
And so time contracts. My days contain fewer hours. I choose among the obligations and pleasures I used to enjoy all at once, every day. I try to live a quiet, careful life.
The flip side of times preciousness is its emptiness. Long hours in bed, even when needed, are tedious. I can no longer treat time as a resource to exploit.
When I return to work, my employer is required by law to make reasonable accommodations to my disability. But what can reliably ease or prevent symptoms that are so hard to predict? My doctor recommends rest breaks, maximum daily hours, dispensation to work from home. What if my accommodations amount to fewer working hours? I feel ashamed, as though my needs show my failure to bear up under average hardship.
At the same time, I want to claim the accommodation and protection of disability. Thirty-eight million people in the US experience migraines: isnt what I experience in the range of normal? But Im afraid to call myself disabled. Robert McRuer writes in his book Crip Theory, there is no way of saying disabled without hearing cripple (or freak, or retard) in its echo.
* * *
To this day, I guard a hidden hope that I will receive a new diagnosis, one that clearly explains the severity of my symptoms. I fantasise that a different diagnosis, even one as complex and debilitating as my mothers, would better resolve the constellation of my symptoms, or lead to a clear course of treatment that might return me to my former self.
There are still days when I think I dreamed this up, that I caused or created it. Ive become so accustomed to pain and fatigue that I forget there are clearer, more energetic days. The career I imagined for myself isnt possible any more, but I do have a job now. It doesnt require me to commute, work regular hours, or check in every day, but it does, crucially, provide health insurance.
Chronic migraine creates all sorts of discomfort and anguish, but what has been hardest to bear is not knowing what this means for my future. I dont know how debilitated Ill be or who will take care of me or what Ill do about money. If I have children, they, too, may experience the helplessness and angst of a mother who is absent or unavailable because of illness.
I had my diagnosis immediately. Learning to cope with it takes years. Now I know that I can lie down for hours without moving. I can meditate. I can stare at the wall and not despair. If I discovered something redemptive in this experience, its that capacity for stillness.
In Chicago, I asked my mother how I could face this future. She didnt miss a beat. You will make a new life for yourself, she said. I believe her.
This is an adapted version of an essay from the new issue of n+1. To find out more, visit nplusonemag.com/subscribe
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