Number of people with migraine doubles after years of undercounting

In short:

Revised figures show the number of Australians living with migraine is about 4 million, with experts saying it highlights how grossly under-reported the chronic disease has been.

The new figures are more than double the previous estimate due to a change in the way the chronic illness is recorded.

What's next?

Advocates say the new statistics highlight the need for more urgent action and investment in neurological conditions.

Having lived with migraine since childhood, Michelle Irving is used to "hardcore" pain.

But 10 years ago, she experienced a frightening escalation of symptoms.

"One day I just rolled out of bed and I fell to the floor with the room spinning and I couldn't get up. I couldn't walk and I had no idea what it was," Ms Irving said.

In hospital, Ms Irving was told she may have Parkinson's disease, though in reality, perimenopause had triggered a vertigo condition associated with migraine.

"That had me bed-based for work for many months and, through a neurologist and medication, slowly I regained more physical capacity and returned to the office."

New figures show the estimated number of Australians living with migraine has more than doubled to almost 4 million, with experts saying the revised figures show the disease has been significantly under-reported for years.

The Australian Institute of Health and Welfare (AIHW) data estimates almost 15 per cent of the population, or 1 in 7 people, live with long-term migraine.

That is more than double the previous estimate of about 7 per cent, or about 1.7 million Australians.

The dramatic change in cases relate to a shift in the way the AIHW records the data.

Previous estimates were based on people who reported living with migraine in surveys, whereas this update was based on global figures, with the AIHW assessing their credibility and applying them to the Australian population.

"Our latest work incorporates new evidence on people who may be living with migraine without a diagnosis, providing what we believe is a more robust estimate of prevalence in Australia, while recognising that further research is needed to refine these estimates," AIHW spokesman Richard Hurley said.

The analysis also suggested about two-thirds of those affected may not have received a formal diagnosis.

Migraine Australia chair Chloe Cefelli said the new figures were validating and gave her "hope".

"Migraine is more prevalent than diabetes … but I think at the moment it's just dismissed as someone having a headache and needing Panadol," she said.

"This opens up a much broader conversation for us that we are so ready for, which is let's start to recognise it as the disease it is with the same sort of treatment strategy, like you would if it was a disability, and just give people the chance to have a better life."

Neurological conditions treated differently

Migraine is the most common neurological condition in Australia, according to the AIHW.

Women are 1.6 times more likely than men to live with migraine, and it is more prevalent in those aged between 25 and 55 years.

But more broadly, the AIHW figures estimate the number of Australians with neurological conditions has gone from 2.2 million to 4.5 million.

In Australia, neurological conditions such as migraine, dementia and epilepsy were the fifth leading cause of disease burden, which measures the impact of living with illness and injury and dying prematurely.

However Neurological Alliance Australia chair Rohan Greenland said they were not treated the same as other diseases in the country.

"They need to get the additional resources that the other major disease groups get — cancers, cardiovascular disease, mental health — particularly around investment in data collection, in addressing fragmented care, prevention, early detection and also investment in research," he said.

"It's really important that these accurate numbers are presented to governments."

Ms Cefelli said she hoped the report would "remove barriers" to "make people well again".

"What I hope to see out of this report is some sort of action with some common sense … getting people back out in the workforce and back into their lives where they feel like they've got their purpose again and they're not hidden in a dark room," she said.

Ms Irving is already doing just that, founding a business working with employers to support staff living with chronic illness.

"So if that means meetings in the mornings are better for them than in the afternoon, if that means that they're not actually going to go to the team lunch because that's going to drain their capacity," she said.

"Work from home … has been phenomenal for people with chronic conditions because they can control their physical environment … fluoro lights are some of the worst conditions and environments for migraine."