Bedridden by pain, priced out of relief: Living with severe migraines

Sunday, 2 November 2025

**Funding *effective ‘first line’ migraine treatments* could boost productivity and our economy, say those currently out of the workforce with debilitating pain. Stewart Sowman-Lund reports.**

For many people, a headache is little more than an unpleasant distraction. Drink some water, pop a Panadol, and get on with your day.

But for others, that couldn’t be further from reality.

The word headache is an incredibly broad and at times misleading descriptor that includes a world of severely debilitating conditions invisible to everyone but the sufferer.

Migraine, too, is often misused.

In short, not all headaches are the same.

Lisa Hindmarsh had never experienced a migraine until a couple of years ago, but what started off as blurry vision on her way to work ultimately led to monthly bouts of intense and inescapable pain.

Linked to her hormones, the cyclical migraines quickly got worse. At their peak, she was bedridden for about three weeks out of every four. Her parents became caregivers to her children while her husband was “working his ass off” to pay the mortgage. Her career as a beauty therapist became untenable.

Within five months of her first migraine, Hindmarsh was unemployed.

“It's really, really hard for people to understand the true extent of this… the chronic pain, because it really is chronic,” she tells the Sunday Star-Times.

“It's generally around my right eye, like a sharp, stabbing pain with a lot of pressure as well around various places of my head.”

Along with the pain, there are a host of other symptoms - issues with her vision, ringing in her ears and often nausea.

Getting help has been a “work in progress”, she says. The most obvious medications, like over-the-counter painkillers, don’t do a thing.

Her GP prescribed non-migraine specific medications to try and prevent the pain - which is a fairly standard first port of call. That included nortriptyline, an antidepressant, and propranolol, a beta blocker used to treat high blood pressure.

They didn’t work either, but instead brought side effects including weight gain and intense sluggishness.

“I was left just feeling like absolute crap,” she says. “Groggy, sleepy… really unable to function like a normal human being.”

Medicinal cannabis works for the pain, but of course it doesn’t stop the migraines from arriving. That’s the true challenge.

“Just give me the best medication that you've got,” she asked her neurologist.

That’s when she was introduced to anti-CGRP medications - referring to calcitonin gene-related peptide. They’re migraine-specific, come in either injectable or oral form and can be used as preventatives or for acute treatment. According to the Migraine Foundation, they are a “revelation” in migraine therapy, and now considered to be a “first line treatment”.

They’re more effective and with fewer side effects than traditional preventative measures.

‘Funding is just so desperately needed’

But being prescribed these can prove challenging. Not all GPs know enough about them and, even if they do, none of these medications are funded in New Zealand. They aren’t cheap.

“This is probably the part that breaks my heart the most,” says Hindmarsh. “Some people just don't have access to these medications, and it's just cruel. The atogepant - or Aquipta - was costing me $350 a month.”

Within a couple of weeks of using Aquipta, Hindmarsh was pain free. Her life slowly returned to normal for the first time in months.

“I got a good nine months of having my health back and feeling like a very normal person,” she says.

The migraines have since returned, and she’s in the process of transitioning to another unfunded medication, Aimovig, which is going to cost $730 a month.

“And for somebody who can't work as I used to, that's a big price to pay.”

Her plea is simple: fund these medications.

“With this chronic migraine condition that so many people are dealing with comes a lot of mental health issues as well. And it's such a struggle, and it seriously needs to be looked at,” she says.

“For me, seeing how much it's actually given me my life back and enabled me to be able to work … the funding is just so desperately needed, so desperately needed.”

Hindmarsh isn’t alone in wanting further support for people like her.

Kat Soper has suffered from headaches, migraines and cluster headache - the latter being one of the most painful conditions you can have - since a head injury in 2020.

It saw her career as a business coach go up in smoke.

“I just had my biggest launch ever. And going from the back of my most successful launch one day to, a few weeks later, being totally debilitated was, you could say, a shock to the system,” she says.

Her GP told her to take two weeks off work, which spiralled into nine months. After a second injury three years later, she was off work for a further 20 months before her pain could be controlled. But it wasn’t enough to return to her former career.

“Navigating the ACC system with a head injury and with debilitating migraines is not for the faint of heart,” she says.

“I actually still can't go back to my business. I've never been able to go back to it.”

Soper’s medical journey has similarities to Hindmarsh; she also cycled through the funded preventatives before discovering something that really worked. Emgality is another CGRP medication, meaning it also comes with a price tag - and despite her head injury, ACC wouldn’t fund it.

She had to borrow money to fund a three-month trial of the drug because it was too expensive - about $300 a month following an initial $600 “loading dose”.

It's a “significant amount of money,” says Soper, who has been able to take on work as a teacher aide with the relief Emgality has provided.

But the cost has its consequences.

“Because I only work part time as a teacher aide, and we don't get paid for school holidays and I've also well-exceeded my sick leave … it's pretty hard to afford Emgality, which keeps me working. So I can't … work without it, but I also can't afford to keep it,” she explains.

“I haven't had a full pay in three pay cycles, and I get paid fortnightly. So it's really hard to spend that much money when you've got a family to feed and bills to pay.”

Soper attempted to space out her Emgality use beyond the recommended four weeks, but the migraines returned almost immediately after she would normally have taken her next dose.

She believes that funding medication like Emgality would help boost the country’s productivity.

“I went from being a fully functioning, very successful business coach to barely being able to maintain part time hours as a [teacher aide],” she says.

Pharmac’s manager of pharmaceutical funding, Claire Pouwels, tells the Star-Times that the drug-buying agency works within a fixed budget and “difficult decisions” have to be made about what can be funded.

However, eight funding applications have been received for four different anti-CGRP medications to treat chronic and episodic migraine: Aquipta, Aimovig, Emgality and Ajovy.

“We have completed our assessment of these applications and determined that they are treatments we would like to fund when budget allows,” says Pouwels.

But Pharmac can’t say “if or when” a decision will be made about funding these drugs.

“It depends on whether Pharmac has the budget available, the success of negotiations with suppliers, the available clinical evidence about the benefits of the treatments, and how we’ve prioritised these medicines compared to others we would like to fund.”

Soper wants these drugs to become more accessible.

“We don't have a funded, true migraine medication,” she says.

“All of the funded medications [are] for other things, and the off-label use is for migraines. So it seems crazy to me that the Government is not funding this breaking technology.”

Associate health minister David Seymour, who has responsibility for Pharmac, said he will be arguing for further funding for the drug-buying agency this year.

“I hope I will be able to secure enough so that these medicines can be funded,” he says.

“The more funding Pharmac receives, the more medicines will be funded.”

However, he emphasised that decisions over what drugs to fund are not made by him.

“It’s important final decisions are made based on data, so that decisions like this are not politicised.”

The productivity cost

According to the Migraine Foundation, more than 50% of people who try regular migraine preventive medications stop using them, mostly due to side effects or lack of effectiveness.

Dr Ray Bose, an Auckland-based neurologist who specialises in headache, says there is a huge unmet need.

While it’s “fortunate” that we do have access to some of the most effective treatments, the fact they remain unfunded presents a barrier.

“10% of the population has migraine and then on top of that, to compound it, when they have difficulty with access, it's a huge problem,” he says.

“So I think having more drugs is a solution. Training more GPs to be able to use them is good because not everyone can get access to a specialist and, of course, having more neurologists would be welcome as well.”

While there have been no studies in New Zealand on the economic cost associated with chronic head pain, the Migraine Foundation says data from Alberta in Canada, which has a similar population size to New Zealand, predicted that healthcare costs were 1.5 times greater for people with migraine, corresponding to an additional annual cost per person of CAD$5059 [NZD$6276] for people with chronic migraine.

For those with episodic migraine it is CAD$669 [NZD $829] .

“If these estimates are similar for New Zealand, that would equate to more than $1 billion a year, just for healthcare costs,” a spokesperson tells the Star-Times.

“From other research, we know that the cost from lost productivity – not being able to work during migraine attacks or work as effectively or work at all – is much greater than healthcare costs.”

Bose says some of his patients have even sought referrals to clinics in Australia or the UK to access certain drugs. Emgality, for example, is funded in many OECD countries, including Australia, the United Kingdom, the United States and Canada.

Others have moved overseas to access drugs that Hindmarsh and Soper are paying out of pocket for in New Zealand, he says.

“Overseas, three or four of [the CGRP treatments], depending on which country you go to, they are funded.”

Hindmarsh believes New Zealand is “very far behind” other countries when it comes to support for people like her.

There’s also the added issue of dealing with peoples’ preconceptions; migraine is an invisible condition, and if you’ve never experienced it, it’s hard to know just how bad the pain can be.

“People will say to me, ‘oh, have you drunk enough water? Have you been resting?’ Or, ‘just try and think positive’ is another one that I get a lot of. ‘Just try not to pre-empt that it's going to come’,” says Hindmarsh.

“And I'm like, I realise that, but when it's happening consistently, like clockwork, it's very hard to think that it's not going to come next month.”

The nine months’ of pain relief she experienced on an unfunded medication has helped her realise she might be able to get her old life back, but the road ahead is uncertain.

Just recently, she missed her best friend's baby shower because of the pain she was in. That’s just a “snippet” of the reality of living with chronic pain.

“My kids are currently staying with my parents because I'm going through this transition of medications. And you know, for them to see Mum in tears and in pain and always on the couch or always in bed, that again, just brings so much heartbreak.”

A heartbreak that Hindmarsh knows could be avoided with the right treatment, preferably at the right price.