Migraine misunderstood and under-diagnosed, experts say, and women are most at risk
Natalie Oh suffered from migraine attacks for 17 years before finding a cure. (Supplied)
Natalie Oh remembers every excruciating detail of the car crash that changed her life forever.
That is, right up to the point of impact.
It was 2005, and she was studying at Sydney's Macquarie University library for a Year 10 exam, alongside her older brother and some of his friends.
When it came time to leave, the sedan her brother was driving became overloaded with passengers wanting a lift home.
Ms Oh says she didn't really think much of it at the time, and squeezed into the back seat of the car before her brother drove off.
That's when her memory ends.
She doesn't recall the crash that shattered her pelvis, broke numerous other bones and gave her a traumatic head injury that caused bleeding on the brain.
"I was in a coma for about six days and hospitalised for about six weeks," she said.
Ms Oh later learned her brother had fallen asleep at the wheel and that she and the car's other passengers were lucky to be alive.
Her physical injuries were extensive, but broken bones heal with enough time and support.
What didn't go away were the recurring migraine headaches she started to suffer, which were so debilitating that at times the Pilates instructor couldn't get out of bed.
"All I could do was just lie down, and I didn't have much information on what would help me with the migraines or what would trigger them," she said.
Natalie Oh says migraine attacks made it difficult for her to work as a Pilates instructor. (Supplied: Haim Pilates Studio)
Before her accident, Ms Oh had only ever suffered the occasional, mild headache.
But after the crash, her migraine attacks continued for almost 17 years, at first felling Ms Oh on a daily basis and then reducing in frequency to about two or three a week.
Eventually, Ms Oh accepted them as an inevitable part of her everyday existence, and that she was one of the five million or so Australians who live with the debilitating condition.
Chance discovery
As part of her ongoing recovery from the car accident, Ms Oh was appointed a caseworker attached to the New South Wales government's icare program.
She found her way to the care of neurologist Rowena Mobbs, a leading clinician in concussion, chronic traumatic encephalopathy, and dementia services.
Dr Rowena Mobbs says it is vital to find the right migraine treatment to suit each individual's brain. (Supplied)
Dr Mobbs prescribed Mr Oh an injection of the migraine preventer Ajovy in February, a medication that is typically administered monthly.
It took just one treatment for the medication to provide Ms Oh immediate relief.
She said she couldn't believe the joy she felt when, just days after the injection, a typical warning sign of the onset of a migraine quickly dissipated.
"I was so ecstatic and happy … but also really sad at the same time, because no-one ever told me there was a way to get better," she said.
"I didn't have to suffer for so long, for 17 years."
Being able to provide that relief is a big part of why Dr Mobbs gets out of bed in the morning.
However, that satisfaction is tempered with concern.
Dr Mobbs describes Ms Oh as one of the "lucky ones" because not everyone is fortunate enough to have their migraine diagnosed and subsequently treated effectively.
"Migraine in women represents an under-treated and under-recognised malady, with about 20 per cent of women experiencing it," Dr Mobbs said.
That's three times more women than men.
"It has the potential to hold women back economically and socially due to pain or wider symptoms, but it is eminently treatable with the right care," she said.
And while Ajovy injections have helped Ms Oh, they won't work for everyone.
"It's very much a process of finding the right treatment for that individual's brain — be it tablets, injection or non-medication approaches," Dr Mobbs said.
"Our understanding of migraine in the community in general is suboptimal, and health literacy around both migraine and concussion can be improved."
An Australian-first study into the impact migraine has in Australia is currently being peer-reviewed and is expected to be released later this year.
'Easier to have cancer'
Migraine has impacted Carl Cincinnato's life to the point where it is all he talks about, professionally at least.
Carl Cincinnato says migraine can take a devastating toll on sufferers' lives. (Supplied)
His first-hand experience of a migraine attack as a young man is what pushed him towards his current advocacy role as a director of operations with patient advocacy group Migraine and Headache Australia.
It's an experience he wouldn't wish upon anyone.
"Migraines may not kill you, but they can certainly take everything that's worth living for away from you," he said.
"I've had people that have had cancer, gone through chemo, been in hospital, and also who have chronic migraine.
"And they said, out of the two conditions, it was easier to have cancer, because people could see cancer, people get sympathy, cancer was treated seriously. But their migraine condition that [was] slowly destroying [their] quality of life, wasn't."
Mr Cincinnato said migraines were under-diagnosed, under-treated and generally poorly managed by Australian doctors, costing Australia's economy billions of dollars annually.
According to Migraine and Headache Australia, 50 per cent of people with migraine have not been diagnosed by their general practitioners.
But that criticism of GPs is rejected by the Australian Medical Association (AMA).
Danielle McMullen, vice president of the AMA and a GP, said that patients who presented with headaches or migraine-like symptoms could have a number of different illnesses.
Dr Danielle McMullen says it can take time to determine what type of headache a patient is suffering from. (Supplied: Australian Medical Association )
"Really, the trickiest part in general practice is teasing that apart and making what can be a really complicated diagnosis about who's got migraine and who's got other types of headache," she said.
"Migraines can look and feel very different for different patients.
"So, it sometimes does take a bit of of time and review and trialling of different treatment options to determine whether migraine is the cause and what the best treatment is."
These are sentiments echoed by Dr McMullen's colleagues at the Rural Doctors Association of Australia (RDAA).
"No-one knows all there is to know about migraines as they are complex, not well understood and difficult to address," RDAA president Dr Raymond Lewandowski said.
"However, GPs are well informed and equipped to deal with the condition."
Honeymoon bound
Finally pain-free after 17 years, Ms Oh is about to jet off on a COVID-delayed European honeymoon with her husband, Won.
She no longer has to plan extended stays in each town in case a migraine hits.
She can also continue teaching Pilates with ease, knowing the risk of a last-minute cancellation due to a migraine is no longer likely.
While she's still grieving the time lost to years of migraine agony, she's keenly aware she's also lucky to have had a resoundingly positive response to a treatment.
Natalie and Won Oh can plan their honeymoon without factoring in potential migraine attacks. (Supplied: Bora Photography)
Ms Oh said she was speaking out to encourage others to act promptly if they were regularly struck down by migraines.
"When I had the treatment, I kind of felt cheated because no-one ever gave me that information," she said.
"Now that the migraines have gone, even though I don't really say this to anyone because no-one asks, I'm just really glad."