Of more than 500 people surveyed in May by Migraine Foundation Aotearoa New Zealand, nearly half reported not being able to see a health professional, with respondents citing costs, long wait times or simply having appointments declined.
More than 40 per cent of respondents reported feeling judged or misunderstood by clinicians.
Susan Farkas is an Emmy-award winning journalist who’s had stints at the United Nations, NBC News & CBC, and a journalism professor, writer and video producer.
But many migraine patients like me are embarrassed to tell friends, co-workers and even relatives when they experience an attack. Why do I feel ashamed of having inherited a common neurological disorder?
Some of us fear if we complain of a migraine, we’ll be suspected of feigning impairment to get out of work or some social obligation. I grew up with a well-worn stereotype: a woman avoiding sex with her husband by pleading, “Not tonight, dear. I have a headache.”
I’d bet most of us who suffer from migraine attacks don’t fake being ill. We fake being well.
Three out of four migraine sufferers are women. For most of the last century, migraine was considered psychosomatic, a complaint of overwhelmed and neurotic women who couldn’t cope with life.
In her 1968 essay In Bed, Joan Didion put words to the humiliation of migraine, calling it her “shameful secret”. She spent “one or two days a week almost unconscious with pain … evidence not merely of some chemical inferiority but of all my bad attitudes, unpleasant tempers, wrongthink”.
I learned as a child that even people who love you can have trouble mustering sympathy. My grandmother lived with us when I was growing up. When she complained of headaches, my mother rolled her eyes, never believing Grandma’s pain was real.
About 40 million Americans suffer from migraines, with three out of four people afflicted being women. Photo / 123RF
Although my migraine attacks are chronic, I almost never let one keep me from a social event or work. I may be pale, inarticulate and unfocused, but too embarrassed to let on why. I fear the reaction would be, “It’s just a headache!”
Migraine is, in fact, not just a headache. It can consist of a panoply of symptoms - and sometimes no headache at all.
Living with migraine
My most severe migraine struck me nine years ago during a trip my husband and I took to India. I knew I was in trouble when I saw the vision-distorting “aura” of squiggly lines that forewarn searing head pain. Soon I was vomiting every few minutes and felt like the light from my bedside lamp was piercing my eyes. By the time the hotel doctor arrived, I was clutching a pillow and howling.
The doctor gave me dexamethasone, a corticosteroid my American doctors had occasionally prescribed for intractable migraine attacks, the ones that colonised my brain for up to three days. It enabled me to fall asleep. I woke up the next morning giddy at feeling pain-free.
Still, some “migraineurs” feel disbelieved. As a young doctor, Michael Cutrer, a neurologist at Mayo Clinic in Rochester, Minn., who specialises in headaches, said he saw some of his colleagues downplay the severity of migraine attacks. “The impact of a lot of head disorders is underestimated by everyone except the person having it,” he said.
While no one knows for sure what causes migraine attacks, there are seemingly endless possible triggers. Some - like heat, cold, weather changes, fluctuating hormones and stress - are unavoidable.
Triggers for migraine attacks vary widely, including dehydration, stress and certain foods. Photo / 123RF
Each migraine patient has their own unique list. Mine includes dehydration, too little sleep, missed meals, alcohol and chocolate, hot stuffy rooms, strobe lights and certain smells, mainly perfume.
When I wake up with a headache, I review a mental checklist of ways I can blame myself for my throbbing brain. Did I eat something I shouldn’t have, a potential trigger I didn’t know was on my list - say, tomatoes, potato chips or peanuts? Did I stay up too late or not drink enough water?
Migraine avoidance precludes spontaneity. I have to stick to a regular meal schedule, sleep enough but not too much, abstain from alcohol and have just the right amount of caffeine (not too much or too little), and skip plays or concerts with strobe lights or loud sound effects.
After puberty, my migraine attacks were often triggered by hormone fluctuations, so I hoped I would be one of the many women whose attacks end at menopause.
Unfortunately, mine got a lot worse when I turned 50. I woke up with nausea and stabbing head pain several times a week.
Few treatment options for migraine
When I first started seeing headache specialists in about 1990, I was astonished to learn there were no drugs developed to prevent migraine. Over-the-counter pain relievers offered no relief. So for about 20 years, I was prescribed off-label drugs created to treat everything from seizures to an irregular heartbeat. Most had side effects. None prevented my migraine attacks.
The introduction of triptans (such as Imitrex, Maxalt and Zomig) as a treatment in the 1990s was a breakthrough for me. But there was a catch - the risk of “medication overuse” If taken more than two days a week, triptans can trigger rebound headaches. Even though I was getting three to four migraine headaches a week, my insurance company would only dispense nine pills every 28 days, leaving me with nothing to take when I invariably ran out.
When I asked my then-neurologist what to do, she simply shrugged. Stunned, I felt abandoned by the one person who was supposed to understand what I was going through.
Migraine attacks were historically considered psychosomatic, particularly affecting women. Photo / 123RF
In 2010, botox was approved by the Food and Drug Administration for preventing chronic migraine attacks, and I was lucky to have a neurologist who prescribed it and an insurance plan that paid for it. Since then, I submit to 31 botox injections in my forehead, neck and skull every 10 weeks or so. Botox has actually reduced the frequency and intensity of my migraines, but my sceptical friends are convinced I’ve figured out a scam to get free wrinkle treatments.
In 2018, the first treatment invented to prevent migraine, Aimovig, was approved by the FDA.
It took about two years to get my insurance company to cover a similar formulation, Emgality, which costs more than $800 per injection out of pocket. Now I suffer from about two migraine attacks a week, which may not seem like much progress, but it feels as life-changing to me as winning the lottery.
There are now several new medications on the market, endorsed by celebrities such as Serena Williams, Aly Raisman, Khloe Kardashian and Lady Gaga.
I wonder if celebrities going public about migraine will help erode the stigma, but I suspect progress will come slowly.
