More than one-quarter of people living with migraine disease say it's caused them to miss school or work for more than five days over a three-month period, according to a survey from the University of Otago, Wellington, and the Migraine Foundation Aotearoa New Zealand.
One in seven people worldwide experience migraines, with the neurological condition affecting women two to three times more than men. More than 640,000 Kiwis are thought to live with the condition.
Symptoms include a headache which can cause severe throbbing pain or a pulsing sensation, typically on one side of the head, according to the Mayo Clinic. It is often accompanied by nausea, vomiting, and extreme sensitivity to light and sound. Migraine attacks can last for hours or days.
The study – the first of its kind to survey people living with migraines in New Zealand – involved 530 respondents over a three-month period.
The findings, published today in the New Zealand Medical Journal, revealed that nearly one-quarter of the respondents (23%) had chronic migraines, experiencing headaches on 15 or more days a month – the highest level of disability and impairment.
Of that number, 20% had continuous or near-continuous headaches, while a further 22% had 24 or more days of headaches per month.
Half of the respondents reported being unable to do household work during the period, while nearly one-third said they had missed family, social or leisure activities due to the condition.
Almost half met the criteria for a severe disability.
'Living half a life'
Lead researcher Dr Fiona Imlach, a senior research fellow at the university’s Department of Public Health, said the condition causing significant levels of disability among New Zealanders with wide-ranging impacts on their physical and mental health, their ability to work and socialise, and their family lives.
Imlach, who co-founded the Migraine Foundation, said the survey respondents were living with significant levels of pain which could last for hours or days at a time.
One person commented: "People don’t understand the excruciating pain and think, 'it’s just a headache'. I’ve pondered if I could just cut my own head off to make it stop."
The migraine attacks were sometimes accompanied by debilitating and distressing symptoms, such as loss of coherent speech, paralysis on one side of the body, nausea and vomiting, visual disturbance and even loss of vision, and sensitivity to sounds, light, smell, and touch.
Co-researcher Sue Garrett, a senior lecturer in the University’s Department of Primary Health Care and General Practice, said migraine attacks are leading to anxiety and depression. Respondents used words such as 'misery' and 'devastating' to describe the impact of the condition, and that it was 'ruining' their lives.
"Those living with chronic migraine describe only living half a life, of feeling isolated, trapped, lonely and useless. A common theme was the feeling that migraine was ‘stealing (their) life away’. People talked of ‘lost days’ and time they could never get back,” she said.
Some respondents said they were unable to work or study due to the need to lie still in bed for days until their migraine attack passed, while others reported being unable to function productively at work due to cognitive impairment and fatigue.
Of the respondents who were able to work, some said they relied on acute pain medication to get through the work day, or mentioned being lucky to have flexible work schedules so they could reduce their hours of work when they needed to.
More than 'just a headache'
Imlach said despite nearly half meeting the criteria for severe disability, there was very limited financial support available to them through unemployment or disability benefits.
Just 0.3% of working-age people on Jobseeker or disability benefit listed migraine as a condition limiting their ability to work, according to Ministry of Social Development data from June 2022.
Imlach called it “surprising, considering how common migraine is”.
She said most of the survey respondents reported that migraines “negatively impacted their ability to work”, with 29% saying they were unable to work or could only work part-time.
Imlach added that while migraine is a neurological condition with a genetic basis that cannot currently be "cured", many respondents spent large amounts of time and effort seeking ways to treat – or reduce the frequency or intensity – of migraine attacks.
"People want to know what causes or triggers an attack and try all sorts of diets and restrictions. However, the research now suggests that many of the things that were thought to trigger migraine attacks – such as certain foods like cheese or chocolate, bright lights, noise or strong smells – are more likely to be early symptoms of an impending attack," she said.
"We would like it to be easier for people to access evidence-based treatments and be able to put into practice all those healthy routines around eating well, getting enough sleep, and exercising regularly that are especially important for people with migraine."
Imlach noted how poor understanding has led to stigma and increasing the level of disability among people living with the disease.
"It is a complex condition, and greater support and awareness of migraine as more than 'just a headache' is needed, both among the public and in workplaces," she said.
"Recognising migraine as a disability would allow those unable to work to access benefits and get financial support for treatment costs while more supportive work practices would reduce work-related stress and improve productivity."
Imlach said more research is needed to understand the social and economic cost of migraine in Aotearoa New Zealand, including its impact on health services and the benefits of improved access to better treatment options.
"Globally, it is recognised that migraine has been under-researched and under-funded for many decades, but things are improving in other countries. It’s time New Zealand caught up."
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