Sometimes Megan Gaukroger’s migraines are so bad they last for weeks or even months.
She was diagnosed with a rare form of the condition, called sporadic hemiplegic migraine almost 20 years ago.
“This form of migraine is often misdiagnosed as a stroke as many of the symptoms are the same,” the 49-year old from Inverell, NSW, said.
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“The last full-blown attack I had was seven weeks ago and lasted for four weeks.”
Gaukroger gets total paralysis on her left side so severe it causes her face to droop.
Her speech slurs and she gets the “aura” symptoms including zig-zagging patterns and vision loss.
Then there’s what she describes as the ”agonising pain” in her head.
Even after the attack, she suffers what’s known as a “migraine hangover” for a few days.
It leaves her fatigued and disassociated.
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“This is the absolute worst part of the attack, even more than the attack itself,” she says
Migraine affects around five million Australians.
However, charity bosses are “deeply disappointed” at the decision not to include it as a recognised health condition on next year’s census.
Migraine Australia campaigners say migraine needs to be included so Australians who suffer from the neurological condition can get the help they need.
Gaukroger says she’s not surprised that “yet again” migraine is not being recognised.
Migraine Australia leaders say it’s an “invisible” illness.
“The continued absence of migraine in national data reinforces its invisibility in policy, planning and funding decisions, limiting access to appropriate care for those who need it most,” Board Member Chloe Cifelli, told 9News.
“While we understand the ABS’s concerns about consistency in public understanding, this highlights the urgent need for national awareness.”
Cifelli said the organisation aims to launch an education campaign ahead of the next Census in 2031.
An ABS spokesman said the Australian Bureau of Statistics (ABS) reviewed what topics should be included in the census.
It said respondents where confused about the definition of a migraine.
“Testing revealed that ‘migraine’ was not generally understood or answered accurately in the long-term health conditions question, as respondents often confused it with other types of headaches,” he said.
“For this reason, the response category of ‘migraine’ will not be included in the 2026 Census.”
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What is a migraine
Migraine is one of the world’s most common brain conditions.
A migraine is a neurological disorder that causes a severe headache, which normally only affects one side of the head.
Other symptoms can include vomiting, sensitivity to light, sound and smells.
Speech can also be affected and limbs can go numb.
In up to 30 per cent of people who get them, migraine attacks begin with disturbed vision, called an aura.
Doctors don’t know why migraines happen.
They affect more women than men.
It’s the most common neurological disorder, according to the World Health Organisation.
