"I'm never symptom free, so I have a constant headache 24/7, seven days a week," she said.

"That would be somewhere in the middle of a pain scale and I also have vision issues.

"And then as a migraine attack hits, the intensity of everything, all the symptoms that I experience - they all build until it rates reaches a peak.

"It's almost indescribable the level of pain when the migraine attack is at its peak."

Up to one in five people live with the condition just like Sarah. There is a real diversity of symptoms and often not much community understanding, but this June is Migraine Awareness Month and those who live with the condition are speaking out.

Sarah's migraines are chronic and she has several sub-types - hormonal, migraine with aura and exercise induced migraines. About 500,000 Australians live with chronic migraines which is defined as 15 "headache" days per month with eight of those being migraine days.

But those with the condition are keen to point out that it is not "just a headache" and in some cases there may be no head pain at all. Other symptoms can include visual disturbances, gastrointestinal complaints, fatigue and even temporary paralysis.

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At the peak of an attack, Sarah cannot function and nine times out of 10 medication does not help her and she is bedridden.

"There's no point fighting through it because I will end up in hospital," she said.

"Your sense of smell can make you extremely nauseous.

"Light is so intensely painful for me during an attack that I can be in a dark room and the little red light that you see on a standby on TV can be enough to cause me pain.

"It feels like it feels like your head is going to split right open."

What follows is a wave of exhaustion, almost like a hangover, and then within days she goes through the same thing all over again.

The theme for Migraine Awareness Month this year is 'out of the dark' - shining a light on the condition and talking about it.

"That runs in line with our election campaign that we ran directed at getting the information out there to the government before the election," Sarah said.

"That (information and survey) was sent out to 151 electorates but the response rate was fairly poor, which I feel reflects the understanding of migraine.

"I think that bias is still out there, the stigma that migraine is just a bad headache when really it's a complex neurological disease without a cure."

For the more than five million Australians with migraine, there are a range of resources available at migraine.org.au about how workplaces can become more accessible, how to alter or avoid triggers or get professional assistance.

The site also lists the current migraine specific medications on the PBS - Ajovy and Emgality, while advocates are fighting to have Aimovig and Vyepti added. There are also other medication options on the PBS but they are not migraine specific and some are also used to treat conditions such as epilepsy and depression.

"It's this fight that we have at the moment to to get access to those medications because they may be out of reach for a lot of Australians," Sarah said.

"We're talking, you know, anywhere from $500 to $1000 a month and if they're not working, or if they have to work part-time (due to the disabling nature of their condition), it's very difficult."

Despite the struggle of dealing with this painful condition, there is plenty of support within the community. The Migraine Australia website lists resources such as the Facebook page, an Australia-wide chat group and a network of smaller local support groups called the migraine warrior network.

The local groups often have monthly meet-ups, either online or in person, and there is one locally for those in Bendigo who live with migraine.

More information on specific support groups is available here.

For more information visit migraine.org.au

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