“You don’t die from migraine, but sometimes you don’t live very well with it,” says Sarah.
Sarah suffers from chronic migraine, the official diagnosis given when you have at least 15 headache days a month, and those headaches intensify to migraine strength on at least eight of those days.
“Migraine mostly affects women when we are in our productive years. It’s when we’re in our 20s to 60s, right at the time when we are building our careers and raising children.”
Classified as a disability, migraine disease is a neurological disorder with no cure. It is highly debilitating and although not fatal, it has an enormous impact on mental health and productivity. Genetics can also play a big role in migraine, and it often runs in families.
Sarah’s migraine disease manifests with a throbbing pain behind her right eye. The 41-year-old calls it “the beast” and says it sits behind her eye every day, applying an often unbearable pressure.
“It’s like a hammer, it just keeps going. I wake up each morning and I pause and think ‘is it a good day, or a bad day,’ and that comes down to whether my head feels clear.”
Sarah says she can’t remember a day over the past seven or eight years where she hasn’t had some form of migraine pain. On the worst days, her head feels like it’s being crushed in a vice and the nausea, a nasty companion to migraine, also creeps in.
“I know there are people with far worse conditions than me. This isn’t fatal. I’ll live. I just wish I could be far more productive in society.”
Sarah was a registered paediatric nurse, but she left her profession seven years ago. The regular onset of a migraine attack made it impossible for Sarah to care for others, and she left a profession that could ill-afford to lose her.
“In New Zealand, we don’t fund the modern, preventative treatments, we only fund the drugs you take once an attack is underway, so it’s very hard to function during a migraine attack and hold down a job that needs you to be at the top of your game every single day.”
The mother of two believes it is a short-sighted approach in the treatment of migraine disease. Instead of parking the ambulance at the top of the cliff, our health system parks it at the bottom and Sarah says the financial implications are significant.
“The impact on productivity and the cost to our economy is huge. It would be better for taxpayers as well as for people who suffer chronic migraine – in fact for people with any form of migraine – if we funded the drugs that prevent migraine. Then we could get on with living, working and contributing.”
The New Zealand Neurological Foundation says around 10% of the population suffer from migraine – or half a million Kiwis, although that figure is believed to be far greater. Migraine disease, Sarah says, is under-diagnosed in New Zealand.
“There hasn’t been any work done to measure the impact of migraine in New Zealand, but the Australians have looked at the social and economic impact of migraine disease, and it’s huge. Just huge.”
Across the Tasman, research found that 4.9 million people suffer from migraine, or about 20% of the population. In a recent ‘Migraine in Australia’ Whitepaper, Deloitte calculated the annual cost of chronic migraine to the economy was $4.1 billion dollars in lost economic output.
“In the ‘Global Burden of Disease’ studies, headache and migraine sits near the top. It’s why they have migraine and headache clinics in Australia, America and in Europe. Migraine disease is officially a disability.”
Right now, Sarah manages her migraine attacks with triptans; a drug developed 30 years ago and taken at the onset of a migraine attack. It’s recommended that triptans aren’t used for more than ten days a month.
“I also try to eat well, exercise and prioritise sleep…. the whole palaver that goes with helping to calm ‘the beast’.”
Often, people in New Zealand with migraine are offered anti-depressants, beta-blockers, or epilepsy medications too. They aren’t migraine-specific treatments, but they have been found to help with migraine.
Botox is another option, but it’s expensive. It has to be administered by a neurologist and in line with a specific migraine protocol. It costs around $1,200 every three months, although a small number of people do have access to publicly-funded Botox.
Recently, the first medication ever specifically developed to prevent migraine was approved for use in New Zealand. It’s called a CGRP monoclonal antibody.
Calcitonin Gene-Related Peptide (CGRP) has been identified as a key component in migraine, and sufferers have higher amounts of CGRP in their system. The new medication blocks the CGRP protein, preventing the onset of a migraine attack.
The treatments are injectable and depending on the drug, injections are either monthly or once every three months.
“They are the first preventative medications for migraine ever, and it’s life changing. I belong to a few Facebook groups all over the world, and people say it’s changed their life.”
The first CGRP monoclonal antibody available in New Zealand is called Aimovig but it isn’t publicly funded. If a sufferer wants to access the drug, it costs around $690 a month for the 70mg dose. If it was publicly funded, our drug-buying agency, Pharmac, would likely negotiate a significant reduction in the list price.
“You have to look at the social burden of this disease. If we fund these treatments, we can work and contribute to our economy. It makes absolute sense to do it.”
“I don’t describe myself as a sufferer of migraine. I am a person who has migraine. I don’t want to sound like a victim. People talk about migraine as though it’s a one-off event, but I tell people you should think of it in the same way they think about a condition like epilepsy. You don’t have epilepsy when you have a seizure. You always have it. That’s the same for me. I live and manage migraine disease every day.”
Frustrated by a lack of support and advocacy in New Zealand, Sarah is now branching out into a new space. She has a blog called ‘Migraine Down Under’ and a supportive Facebook group, and she writes when her ‘migraine brain’ allows.
She’s also teaming up with other people living with migraine and will soon launch a much-needed, not-for-profit. She hopes it will become a source of information and support for thousands of New Zealanders who, like her, risk becoming isolated from this disabling disease.
“I’m a very positive, pragmatic person, so I don’t let it get me down. I was a nurse for 14 years and I worked with kids. There are some horrible conditions and diseases out there. Migraine is my lot in life. Instead of going ‘woe is me’ and lying in a dark room, I have thought about what I can do to be proactive and hence why I’ve stepped into the space of advocacy.”
Sarah also feels it’s important to provide a platform for people with migraine to connect and support each other. The usual opportunities for social connection are often challenging environments for migraine sufferers.
“The migraine brain doesn’t like change. I don’t put too much on my plate every day because I know I’ll end up paying for it. I don’t stay out late, and I don’t over commit socially.”
“Depending on how my brain is, I’m sometimes not good at dinner parties or in loud restaurants. I forget how much I’ve had to change my life for migraine.”
Sarah is putting her nursing training to good use and is now a medical writer, working as a freelancer from home so she can control how many hours she works, and her work environment, but next year she will focus on migraine and building the online resource for New Zealanders. “I think there are around three or four GP’s who have a strong interest in migraine and headaches. That’s it. It’s a really under-treated condition in New Zealand and people need information. I’ve got some skills in that area so that’s how I hope to help”
She will also grow her voice as an advocate to drive for new treatments to be funded on our public health system.
“Like I said, you don’t die from migraine, but you don’t live very well with it some days. It impacts everything. You can suffer anxiety and depression. It really impacts your mental health and sense of self-worth.”
“It’s really important that we start considering the social cost of not funding these medicines.”
“This isn’t going away. Migraine disease isn’t going away. And neither am I.”
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