Carl Cincinnato describes migraines as a "perfectly evil disease".
"Whilst migraine itself may not be known for taking life, it can take everything in life worth living for away from you," the director of operations at Migraine and Headache Australia and a migraine sufferer, tells ABC RN's Life Matters.
Migraines are considered to be the second leading cause of disability worldwide. They are very common in Australia and almost 5 million people are estimated to have the neurological condition, of which 400,000 are found to have chronic migraines. More than 70 per cent are women and most of those who have the condition are of working age.
Many often talk about how isolating the experience can be.
"It really can create a wedge between you and the outside world because you've got … this debilitating, uncontrollable pain, that no one else can see," Cincinnato says.
Migraines also have a devastating financial impact on the sufferer and the wider community. In 2018, a report found that the condition cost the Australian economy about $35.7 billion, with over $16 billion in productivity costs.
But, despite how common and devastating the neurological disorder can be, and the option of some relatively accessible treatments, the condition remains both under-diagnosed and under-treated in Australia.
In 2007, the National Health and Medical Research Council (NHMRC) found that, across 36 Australian hospitals, only about a third provided recommended migraine treatments.
Another 2019 study reported similar results, with more than one in 10 patients prescribed opioids for their headaches. Prescription opioids are not a recommended treatment.
Research has found a number of reasons for this lack of treatment, including migraines being dismissed as insignificant, stigma and sexism.
In Australia, another problem could be that our medical professionals receive very little training in migraine diagnosis and treatment.
"Over the whole six years of med school, the average is about one hour of training [for GPs] on migraine and headache," Dr Elspeth Hutton, the head of Headache Service at Alfred Health, says.
"For something that's the leading cause of neurological disability in this country, it's really awful. And you compare it to things of similar sort of [disabling] incidents like asthma or diabetes, and the amount of training people get on that is huge."
Complex situation
Dr Hutton says that another contributor for this treatment gap is limited time between GPs and patients. Often a migraine diagnosis is "made on the history that we get from the patient".
"The tests that we do are largely to exclude other things, rather than to diagnose the migraine."
Others agree that longer and more consistent GP appointments are necessary for optimal diagnosis and treatment.
"All these doctors will be quite capable of prescribing migraine medications … however, if you don't actually look into it, you don't know what you're really being presented with," Dr Milana Votrubec says.
Dr Votrubec, the chair of Royal Australian College of General Practitioners's pain management group, says migraines are complex, not well understood and difficult to address.
"The first port of call would have to be how [many of the] four-and-so-many million Australians who suffer from 'migraines' are actually migraines? How have they been diagnosed? What is the definition for migraine?"
She says there isn't a single definition for what a migraine is, and that there are many triggers, including genetics, stress and hormones.
Research has also found there may be a link between mental illnesses such as depression or bipolar disorder and the likelihood of experiencing migraines.
"What it boils down to is, what are we treating? Because pain is multifaceted and for some people, it's the psycho-social aspects," Dr Votrubec says.
"So if they're profoundly depressed and they're getting migraines, perhaps if we treat depression, the frequency of migraines might decrease."
Education is key
These complexities could also be preventing more medicine professionals from entering the space, further limiting our understanding of migraines.
"Consultations are complex and prolonged and the lifestyle advice is significantly time-consuming. And that both parties need to be heavily involved," Professor Tissa Wijeratne, a neurologist and president of the Asian Regional Consortium for Headaches (ARCH), says.
There also seems to be a lack of doctors who specialise in migraine across the country. For example, the Migraine and Headache Australia's doctor directory only lists 72 headache-interested neurologists and pain specialists in Australia's capital cities, with 47 in Melbourne and Sydney.
"I think the reason that most doctors are probably disenchanted or disinterested is, [in] one way, stigma [of entering migraine medicine]."
Dr Wijeratne says the end result is inadequate patient care from Australian primary healthcare, including over-medicating.
"Most chronic migraine patients also suffer from what is known as medication overuse, which means you take painkillers, or migraine-specific acute medications, more than 10 days per month for more than three months," he says.
For example, triptans are an over-the-counter medication for treating migraines that can result in increased migraine frequency if overused.
"These disorders are highly disabling and highly damaging. And the prevention of this is very possible. And that is education [of doctors and migraine sufferers]."
Lifestyle changes can help. For example in 2019, an analysis by The Journal of Headache and Pain suggested that regular cardio exercise could reduce migraine frequency.
Dr Wijeratne says improved quality of sleep, healthy diet, hydration, as well as reducing caffeine and stress have been suggested to help alleviate the pain of migraines.
"All these things are immensely helpful to reduce the number of headache days that these patients get and prevent them from getting into medication overuse headache."
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