Like a disability: Researchers reveal scale of NZ’s migraine misery

A major study published today has laid bare the burden of migraines in New Zealand, with nearly half of sufferers surveyed reaching the criteria for severe disability. Jamie Morton reports.

It begins with flashing lights - maybe just a curious, passing aura around the eyes.

“Then within half an hour, I’ll have a splitting headache,” Papakura mum Lauren Southon says.

“I don’t think I could liken it to any other pain... I’ve had a child, and it’s up there with that.”

For the first time, health researchers have a picture of the burden of migraines in New Zealand through a just-published study that surveyed more than 500 sufferers. Herald Illustration / Richard Dale

The 28-year-old copywriter is one of 640,000 Kiwis thought to live with migraines, and the often devastating and debilitating impacts they come with.

Now, for the first time, health researchers have a picture of this affliction’s burden in New Zealand, in a just-published study that surveyed more than 500 sufferers: Southon among them.

The new study, led by Otago University and the Migraine Foundation Aotearoa New Zealand, also found around a quarter of sufferers lived with chronic migraines - headaches for about 15 or more days a month.

Two in 10 endured near-continuous pain.

Study co-author Sue Garrett said the condition could lead to anxiety and depression, with those surveyed using words like “misery” and “devastating” to describe its impact.

“A common theme was the feeling that migraines were ‘stealing [their] life away’,” she said.

“People talked of ‘lost days’ and time they could never get back.”

More than a quarter reported missing school or work for more than five days over a three-month period and a third missed family or social activities.

One 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.”

For Southon, attacks often meant hours of agony, days-long hangovers of disruptive brain fog – and plenty of time off work.

"Not just a migraine" - Papakura mum Lauren Southon, 28, has suffered serious migraines since she was 4 years old. Photo / Jason Oxenham.

“There have been times where I haven’t been paid, just because I’ve run out of sick days and there’s nothing that I can do about it.”

She’s experienced migraines since the age of 4. As she grew older, they shifted to a rare and particularly painful subtype called hemiplegic migraines.

“I’d lose feeling in the left side of my body – and my hands, my legs, quite often my face – as well as getting nausea, vomiting, an aura in my eyes and not being able to see anything, and obviously an excruciating headache.”

Of those in the study who could work, some relied on acute pain medication to get through, or mentioned being lucky to have flexible work schedules.

Despite almost half of the people meeting the criteria for severe disability, there was limited financial support available to them through benefits.

Ministry of Social Development data from June 2022 showed just 0.3 per cent of working-age people on a Jobseeker or disability benefit had migraines listed as a condition that limited their ability to work.

“This is surprising, considering how common migraines are and that the majority of survey respondents reported that migraines negatively impacted their ability to work,” study leader Fiona Imlach said.

“In fact, 29 per cent said they either couldn’t work, or could only work part-time.”

Dr Fiona Imlach, a senior research fellow at Otago University’s Department of Public Health, has led a new study into the burden of migraines in New Zealand. Photo / Otago University

While the occurrence of migraines is due to a condition with a genetic basis that couldn’t be cured, many sufferers spend large amounts of time and money desperately searching for fixes.

“People want to know what causes or triggers an attack and try all sorts of diets and restrictions,” Imlach said.

“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.

“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.”

Recognising migraines as a disability could also help sufferers access benefits and support at work, she said.

“Globally, it is recognised that migraines have been under-researched and under-funded for many decades, but things are improving in other countries,” she said.

“It’s time New Zealand caught up.”

Southon agreed that more awareness – and action – was needed.

“I’ve been told my whole life that’s in my head – and well, yeah, that’s where the migraine starts – but I’m certainly not imagining it,” she said.

“When you’re in the moment with one, it’s terrifying.”

Jamie Morton is a specialist in science and environmental reporting. He joined the Herald in 2011 and writes about everything from conservation and climate change to natural hazards and new technology.