New Zealanders suffering from debilitating migraines struggle with lack of support

Loss of speech and vision, vomiting and even paralysis are some of the debilitating effects of migraine disease.

New research has found that many sufferers meet the criteria of having a severe disability, however New Zealand doesn't have access to medication that other countries do.

Copious amounts of painkillers and a trusty can of Coke have been some of Ellie Fitzgerald's coping mechanisms over the 23 years she's lived with a debilitating migraine condition.

"It's most of my life I've been getting them," Fitzgerald said.

"I get an aura which is where I lose my vision and that's the first sign I have about 30 or 40 minutes to get just completely into a dark room and go to sleep."

She suffers numbness, nausea and at times a loss of speech.

"The headache feels like you literally have a knife into the back of your neck - it is just horrible."

The 32-year-old suffers at least three migraines each month, and it has a huge impact on her life.

"It's something that is constantly on the back of your mind... whether I am working, travelling, at a friend's party or a special event; I'm concerned that if I get a migraine what am I going to do, where am I going to go, how is it going to go down, cause it just stops your life."

It took sharing her experience on social media to break the stigma and convince others that it was more than just a headache.

"It makes me feel almost embarrassed when I get one, like 'oh I've got a migraine again', I'm gonna have to be that person," she said.

"I've tried so many things over the years, so many different things, I've spent thousands of dollars."

Fitzgerald is just one of 640,000 Kiwis thought to live with the condition which new research found affects two to three times as many women as men.   

Half of the survey respondents said they couldn't do household work, a quarter missed several days of work, and nearly half met the criteria for severe disability.

Co-founder of Migraine Foundation Aotearoa NZ and senior research fellow, Otago University Wellington, Fiona Imlach said globally, migraine is ranked as the second highest cause of disability in the world. In New Zealand it's ranked about fourth.

"And that's just because we've got really bad mental health statistics and that's because it's listed under anxiety and depression, so it's both very disabling and very frequent.

"I think it should be recognised as a disability, I know that people kind of think of a disability like a loss of function you can't see you can't hear, but really clearly from our research people were really functionally disabled."

Imlach said respondents couldn't work and they couldn't do their normal tasks, and by considering migraine a disability would open up the opportunity for workplaces to offer more support.

New Zealand's migraine treatments are lagging.

Imlach said there are new medications available to treat migraines "but we don't have them here so we wanted to use this research to advocate and get more funding and more access to these new treatments".

Otago Uni Wellington senior lecturer Sue Garrett said some respondents said the pain was so bad they felt like chopping their head off. 

"I would rather give birth than have a migraine, the pain of the migraine, because at least giving birth you've got people around you looking after you, giving you really good drugs."

Although incurable, migraine can be managed, but it comes at a cost, whether it's paying for pills or missing work.