A painful truth

It’s more than a headache.

Maya Carvalho’s life has been derailed by chronic migraine attacks.

Born in Winnipeg and now living in Toronto, Carvalho, 54, was working as a busy marketing executive for an international beauty company when she experienced her first migraine episode in her mid-30s.

Within months, the intense head pain and light sensitivity — which worsened with even minor physical movements — became a near daily occurrence. She had to leave her dream job.

“Every facet of your life is touched when you have a chronic illness that is this debilitating,” she says.

Instead of climbing the corporate ladder, Carvalho found herself trying to navigate a medical system that was ill-equipped to deal with her diagnosis.

“There was such a high level of invalidation and doubt about my symptoms that it made my experience exponentially harder than it needed to be,” she says, adding one neurologist told her there was no hope for an effective treatment because so many medications had failed thus far.

“There was such a high level of invalidation and doubt about my symptoms that it made my experience exponentially harder than it needed to be.”– Maya Carvalho

Frustrated, Carvalho decided to start her own support group and founded the Canadian Migraine Society in 2020.

“If I was having a hard time getting any kind of compassionate support, there must be many others in Canada who were experiencing what I was experiencing,” she says.

Migraine is a disabling neurological condition that affects more women than men.

A 2011 StatsCan survey found an estimated 2.7 million Canadians (8.3 per cent of the population) had been diagnosed with migraine, and that roughly 12 per cent of women and five per cent of men were reportedly living with the disease. The study’s authors, however, conceded the findings were likely an underestimation.

The World Health Organization ranks headache disorders among the most common and most disabling neurological diseases, with migraine affecting at least one in every seven adults in the world. The condition can negatively impact interpersonal relationships, mental health, physical well-being and financial security.

The gendered prevalence and invisible nature of migraine has led to underdiagnosis and undertreatment, says Heba Bani Hani, a registered pharmacist in Ontario with a master’s degree in headache disorders from the University of Copenhagen.

Historic assumptions and negative depictions in movies and books have coloured the way migraine is viewed within society and modern-day medicine, she adds.

“In the Middle Ages it was seen as hysteria, that women are hysterical and that’s why they fake headaches,” says Bani Hani, a medical adviser for the Canadian Migraine Society.

“Men also get discriminated against because it’s seen as a women’s condition, so both genders are affected by the way that we perceive this condition.”– Heba Bani Hani

“Men also get discriminated against because it’s seen as a women’s condition, so both genders are affected by the way that we perceive this condition.”

Hormones are believed to play a role, since the condition is seen equally in children of both genders until puberty, when the prevalence increases for females. Kids may experience abdominal migraine, characterized as recurrent bouts of unexplained stomach pain.

The likelihood of migraine increases if one or both parents also suffer from the disease.

While it can manifest in different ways, Bani Hani says migraine is diagnosed if a patient has experienced two of the following symptoms within the last three months: photo- and phonophobia (sensitivity to light and sound), nausea and an inability to perform regular daily tasks.

Attacks are sometimes accompanied by auras — sensory changes that may cause visual or auditory hallucinations, difficulty speaking, tingling sensations and muscle weakness.

Migraine episodes can last hours, days or weeks and be triggered by many different things, including stress, lack of sleep, blood-sugar fluctuations, the weather and hormonal changes during the menstrual cycle. They can be episodic, occurring fewer than 15 days per month, or chronic, occurring more than 15 days.

At her worst, Carvalho was spending eight or nine days in a darkened room with uninterrupted pain running from her eyebrows to the back of her neck. She visited many different neurologists and tried “a plethora” of allopathic and naturopathic treatment options, to no avail.

In 2018, more than a decade into her migraine journey, Carvalho finally found a class of preventive drugs, new to Canada at the time, that worked to dull her symptoms. However, getting a prescription proved challenging.

“It was absolutely shocking. I’m an intelligent woman, I was going in with Excel spreadsheets that listed all the pertinent information … and I was being struck down at every opportunity,” she says. “I had to advocate (for myself) again and again and again.”

Even with medication, Carvalho experiences migraine attacks every second day and lives with daily pain.

“We need a huge paradigm shift. There’s a problem here and it needs to be taken much more seriously than it is.”– Maya Carvalho

Until recently, acute medications — which are used to abort or offer relief for a migraine-in-progress, such as triptans or over-the-counter painkillers — were the only option available for sufferers, says Bani Hani. Relying on these drugs too frequently can worsen symptoms over time and cause medication-overuse headaches.

Preventive medications, known as calcitonin gene-related peptide (CGRP) inhibitors, are relatively new and designed to help prevent attacks before they start. They can be particularly effective for chronic migraine patients.

Both options are expensive and insurance coverage is lacking. In Canada, CGRP prescriptions can cost $600 for a monthly injectable or a daily oral tablet, while acute abortives can cost $20 per tablet.

“Not everybody can afford it, but they do change people’s lives and they are very effective and people need that relief. Otherwise, they end up in emergency rooms and you can imagine how expensive that is,” says Bani Hani, who trains other pharmacists on the nuances of headache disorders and sees the pharmacy counter as a valuable resource for patients.

In addition to offering online support groups for episodic and chronic migraine sufferers, the Canadian Migraine Society advocates for better coverage from insurers, improved government disability benefits, better access to headache specialists and more empathy writ large.

“We need a huge paradigm shift,” Carvalho says. “There’s a problem here and it needs to be taken much more seriously than it is.”

eva.wasney@winnipegfreepress.com