Migraines are far more common in Australian women than previously thought, survey reveals
Caitlyn Gribbin
, ABC
Kate May is taking back control of her life after years of living with migraines.
Photo:
ABC News / Kyle Harley
Getting daily migraines makes normal things like playing sport, socialising and working full time difficult for Kate May.
But May, 30, prefers to focus on what she can do, like walking her dog, as she takes back control of her life.
"I [am] embracing and accepting that as a normal part of my life, but not making it central to who I am," May said.
She said this approach made living with migraine - the leading cause of disability worldwide for women aged 18-49 - more achievable.
And a new survey has revealed the prevalence of the neurological disease is far worse in Australian women than experts previously estimated.
The survey, conducted by health organisation Jean Hailes for Women's Health, which partnered with Migraine and Headache Australia, is believed to be the first comprehensive Australian analysis of migraine rates in women.
It found one in three Australian women who had been diagnosed with migraine experienced at least one in the past three months.
A further 13 percent reported recently experiencing undiagnosed migraine.
Their symptoms included throbbing, pulsating pain, light and sound sensitivity, nausea, vomiting, dizziness and brain fog.
"I did not realise that we would have up to one in three women experiencing migraine in Australia," Jean Hailes chief executive Sarah White said.
"And there's a further one in 10 who have ... had an undiagnosed migraine attack in the past three months."
There isn't a cure for migraine, but it can be managed with lifestyle changes, treatments and support.
When managing your triggers:
Experts previously estimated around 20 percent of Australian women were affected by the condition.
"This data does suggest that the problem with migraine is worse than we had expected," Dr White said.
More than 3600 women participated in the online survey earlier this year.
Alfred Hospital neurologist Emma Foster, who was not involved in the study, said its findings were "eye opening".
"I think this really draws attention to how incredibly common it is," Dr Foster said.
According to Migraine and Headache Australia, 4.9 million Australians experience migraine, with three-quarters of sufferers women.
Dr Foster said the condition was "a leading cause of disability".
"Migraine is far more than a bad headache, it's a neurological disease and we are considering it at the moment ... as a disorder of sensory processing.
"The attacks last between four to 72 hours. It's a very distinct type of headache that's accompanied by additional symptoms that can be … even more debilitating than the severe pain."
Dr White said migraine had significant consequences for Australian women.
"We have eight in 10 women in the survey talking about how their work's been affected. Eight in 10 women talking about how physical health has been affected.
"Fifty percent of the women talking about how migraine affected their confidence and self esteem. These are pretty big issues."
Dr Foster said this was largely thought to be related to sex hormones, as well as genetic, environmental and social factors.
"Very often, women will begin to report migraine around puberty with the onset of the periods and ... often times the migraine gets worse a day or two just prior to the period starting or within a day or two after.
"That corresponds with the rapid drop in oestrogen and progesterone levels ... and just prior to the menopause, where the ovaries start winding down a little bit and the hormone levels begin to drop. That's often another time in a woman's life when she definitely notices changes in the migraine."
Dr Foster said genetics could also play a role.
"Musculoskeletal tension or injuries can sometimes set off migraine for people who are susceptible," she said.
Fluorescent lights can also trigger the condition, as can noisy environments and strong smells.
May, who lives with chronic illnesses and pain, including chronic migraine, said there was still a lot of misunderstanding about the condition.
"I don't think people think that young women can get quite unwell. They just think maybe we're complaining or being a bit dramatic or something," she said.
"I want to say that young women can get quite unwell and the data shows that this is something that is happening significantly to working age women."
She said medication, Botox injections and nerve blocks have helped.
Dr White said a 2018 Deloitte report estimated migraine cost the Australian economy $35.7 billion ($NZ39.1b) annually.
"(We need to) have a conversation that gets to whether we're funding research at the sufficient level, whether we've got workplace provisions that might help women with migraine," she said.
She hoped the new data would open up more conversations about migraine.
"We've had a lot of discussion in Australia, which has been incredibly welcome, about having things like menstrual leave or menopause leave or flexible working provisions for women's, menstrual and menopause issues in the workplace.
"What this report is doing is saying, well, hang on a minute. Women's health is not just about menstrual and menopause issues. In fact, we have another condition here that really does affect women."
-ABC
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Last month the country's medicines regulator, the Therapeutic Goods Administration (TGA), made several recommendations. It called for vitamin supplements with more than 50mg of B6 to be taken off shelves and moved behind pharmacy counters. Supplements take up major space in pharmacies. Photo: ABC News / Jerry Rickard A TGA delegate last month wrote that FSANZ should consider the "appropriateness of the 10 mg limit for vitamin B6 in formulated caffeinated beverages, considering the risks from the use of multiple products containing Vitamin B6". The same delegate also described the benefits of synthetic B6 as 'negligible', said labelling is 'inconsistent' and 'confusing' and called on the multi-billion-dollar complementary medicines sector to initiate education campaigns. A spokesperson for FSANZ said: "If evidence emerges that consumers are regularly exceeding safe intake levels, FSANZ would consider raising a proposal to review the current permissions." FSANZ did not answer questions regarding how it monitors such evidence. Jones said the agency typically prioritises cases where the adverse effects are immediate, not cumulative. "They're very focused on the immediate health risks of a product, so whether it would make you sick overnight, for example," she said. B6 levels in food and drink could become an issue for the food standards body. Photo: ABC News / Cameron Lang "But the energy drinks market has changed quite a lot since the first products emerged, and our consumption of them is growing, so if new health risks are emerging, it would be reasonable for FSANZ to review that standard." Geoff Parker, the chief executive of the Australian Beverages Council issued a statement on behalf of Australia's energy drinks companies. He didn't answer 7.30' s questions and instead compared his sector's products against complementary medicines. "Laws regulating energy drinks in Australia are among the most stringent in the world," he told 7.30 . "Some popular multivitamin supplements contain about 25 mg of B6 - at least five times the average B6 in energy drinks sold in Australia. "The ... upper level of safe intake [is] 50 mg a day for adults. The average level of B6 in energy drinks sold in Australia is approximately 2.1mg for a 250ml serve." The regulations however don't prevent unprecedented or unlikely cases. Matthew was taking Berooca daily and his use resulted in peripheral neuropathy. Photo: ABC News / Cameron Lang Matthew* began taking Berocca daily last August after a colleague recommended it for an afternoon energy boost. The 56-year-old has a prominent public profile and asked 7.30 not to use his real name. "I work in a high-pressure environment ... by mid-afternoon, the energy levels start to wane ... one of my colleagues was having a Berocca - he said 'it gives you a boost', so I tried it, and it turned into a habit." What started as a daily pick-me-up soon escalated - at times, he was having two Beroccas in one drink. Then came the symptoms. "I felt a tingle - some pins and needles - in my left hand, it moved up my arm, then to my right hand, then into my legs, there were terrible burning sensations." Concerned about stroke or heart problems, he underwent tests for blood cancer and multiple sclerosis. His doctor eventually suggested a neurologist. "I was at work and my whole body would be burning inside - pins and needles - but with this burning sensation in my limbs." "I was poisoning myself while [I was] trying to work out how I've poisoned myself." Still, he continued taking Berocca but concedes he was likely taking too much of the product. Supplements with high levels of B6 in them have caused cases of B6 toxicity. Photo: ABC News / Tom Hartley After months of suffering came the call from his GP. "He said 'you have to stop taking vitamin supplements'… I said, 'what are you talking about? I've never taken vitamins' And he said 'it's Vitamin B6'." Tests revealed Matthew had nearly three times the toxic level of B6 in his bloodstream. He stopped taking Berocca immediately. And while his symptoms improved within weeks, some burning sensations remain. "I haven't had any peripheral neuropathy for a month," he said. The mental toll though has been severe. "This has rocked my world, mentally … how could I be this f***ing stupid? … I never in the life of me thought it was dangerous … I just thought you'd urinate it out. "I am so careful about the food that I put in my mouth, the restrictions I have on drinking, the fact I exercise religiously. "I've never had serious mental issues - I'm a glass-half-full person - I don't think I've got a propensity towards depression or anything like that. "But I certainly was depressed about this - this has rocked my world, mentally." There are no warnings on Berocca packaging. Instead, it claims to improve physical energy "when consumed daily for 28 days". Berocca's parent company, pharmaceutical giant Bayer, said it is "committed to consumer safety and regulatory compliance". "All our over-the-counter products ... comply fully with TGA labelling requirements, including ingredient disclosure, dosage, and safety warnings. We will continue to abide by TGA rules and requirements." In 2020 Monique's blood became toxic after consuming protein shakes and multivitamins, she never realised the combined B6 levels were extreme. Monique has battled issues with B6 toxicity. Photo: ABC News "It took about a year to be diagnosed," the 35-year-old told 7.30 . "The worst state that I was in was being bed-bound for about six months, once the vestibular migraine started and I lost my balance completely." Monique believes during her recovery her symptoms were exacerbated when unwittingly consuming small amounts of B6 in a fortified drink. "I was doing really well, I was exercising again, and carefully checking everything I was eating, but after nine months of improvement I became complacent - I didn't think to check the back of the label," she said. Monique could not provide evidence concluding the fortified drink was a causal factor. Dr South believes much of the marketing around B6 is misleading. "Most of these products, promoting B-vitamins, are marketed as 'energy-giving', and that comes from the understanding that a lot of these vitamins are co-factors of generating energy in cells," she told 7.30 . "We're starting to see it in multivitamin minerals from the chemist, but we need better regulations in these higher food products, especially energy drinks. "This increases the impetus for regulators like Food Standards Australian New Zealand the Therapeutic Goods Administration to coordinate together, because it's about the cumulative risks of this amount of B6 being in our food supply. "People are inadvertently overdosing and now we're starting to see the consequences." - ABC