Charmaine Summers was suffering crippling migraines up to five times a week.
The Adelaide mum had to give up her job as a project administrator as she found it more and more difficult to cope.
"People would find me at work hiding in somebody's office in tears," she said.
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"It was very, very hard to maintain employment when I would never know if I would wake up with pain or not.
"I really liked my job but my boss was not that great in understanding. I was a wreck."
The 51-year-old resigned. She said it was perhaps the lowest point in her 35-year battle with the debilitating condition.
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Started as a teenager
Mrs Summers was 16 when she first experienced a severe stabbing headache.
She didn't know what it was until her GP diagnosed a migraine but she soon discovered the reality of dealing with Australia's most common form of severe headache.
The severity of her migraine attacks increased when pregnant with her son Kyle. Then she was in her 20s.
By the time she reached 40 she was suffering from migraines three or four days a week. They can knock her out for days.
Many Australians live with a similar condition. Headache Australia state almost five million people suffer from migraines – the crippling condition also costs the nation $35.7 billion a year.
That includes costs to the health system, plus lost productivity.
"There's a lot of us out there that just can't even get out of bed, can't manage to look after our kids, can't cook dinner," Mrs Summers said.
Spent more than $10,000
Mrs Summers has tried everything from surgery to alternative therapies to try and ease her attacks.
She had her breast size reduced to take weight off her shoulders, got her eyesight treated to correct her double vision, and even had sinus surgery. But nothing really helped.
"I've probably spent $10,000-plus trying to cure my migraines," she said.
Mrs Summers said some medical staff have been unsympathetic. One even told her she was suffering 'because she was a woman'.
She has also been told she gets them 'because she is fat'. But she has a thyroid problem while many migraine drugs also cause weight gain.
"It's really hard on your mental state," she said.
Pioneering new migraine drugs
Mrs Summers last year managed to get on separate trials for two of three new drugs which aim to prevent migraines developing.
They are called CGRP's and they finally gave her some relief.
"I've gone from three or four migraines a week down to one or two a month, and my pain has gone down from an eight to a three or a four," she said.
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However, both trials are now over.
And while she is still benefitting from the drugs as they are currently in her system following monthly injections, she cannot afford to continue to take them.
None are on the PBS so do not receive Australian government funding. This would make them affordable for patients.
The drugs Aimovig and Ajovy cost around $800 a month, and Emgality is also expensive.
And while she has set up her own business selling yarn and knitting accessories from home, Mrs Summers said she can't afford the drugs long-term.
It's a hard blow to take after such a breakthrough.
"I'm starting to live," she said.
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 be affected and limbs can go numb.
Some migraine attacks begin with disturbed vision, called an aura, and while many people have known 'triggers' other patients have no idea what starts them.
Doctors don't know why migraines happen.
Professor Paul Rolan, from the University of Adelaide, explained how severe pain from a migraine actually comes from the membranes and blood vessels outside the brain.
"It sounds odd, but the brain itself can't feel pain," he said. "But the membranes around it are exquisitely pain-sensitive.
"As you can imagine, they're protecting our most important organ. So any inflammation on those membranes causes this headache."
He said there is some evidence migraine patients' brains are super sensitive to environmental stimuli.
He said the new drugs are the biggest breakthrough for years, and he hopes they'll eventually be available for an affordable price.
Prof Rolan is also working on research on whether inflammation in certain brain cells causes migraines.
New migraine drug updates
The makers of Aimovig, Novartis, said it has made three submissions to the PBS and has "no plans" for more.
Eli Lilly Australia said it is "working closely" with the government to get patients access to Emgality after it wasn't recommended for PBS listing last year.
Teva Pharma Australia, which makes Ajovy, said it "remains committed" to getting the drug on the PBS.
The Department of Health said: "There are no barriers to these companies listing these medicines on the PBS and the Government urges them to provide listing proposals consistent with the recommendations of the PBAC."
This article is part of a collaborative journalism project with the Australian Science Media Centre and Judith Neilsen Institute.
