Migraine: West Auckland sisters share reality of managing ‘invisible disease’

Katie Barden and Robin Wilson-Whiting, based in West Auckland, are sisters who both have migraine disease. Photo / Supplied

Migraine, or migraine disease, is a complex neurological condition. The cause is unknown, there is no cure, and it’s genetic. West Auckland-based sisters Katie Barden and Robin Wilson-Whiting both have migraine disease, and treating it involves trial and error, costly medications, and constant management. Here’s what they want you to know.

Katie Barden, 41, remembers having more headaches as a child than her peers did. But it wasn’t until she was about 21 that she was diagnosed with migraine disease after several doctor’s visits and a brain MRI.

“My migraines have always sat heavily on one side, and definitely increased to chronic migraines for 10 years or so... a fairly dominant part of my life,” says Barden, a self-employed bookkeeper and mum of two.

In previous years, she would have had weekly attacks.

“At least once a month, I would have one that would put me to bed for a day or two - sometimes 3. When the kids were little - my husband’s a builder, so he’s gone early - my mum and dad would come over and get the kids ready and take them to school, and I’d just be curled in bed.”

When Barden fell pregnant with her daughter, now 10, her attacks stopped temporarily. However, they continued throughout her pregnancy with her son.

Since having children, the pill has “made a huge difference” in helping prevent her migraine attacks, she says. “I’ve looked at whether it’s worthwhile going off it, we tried that for a while and they came back with a vengeance.”

The migraine-specific preventive medication Emgality has been “super effective”.

“Now I would maybe get one a month that I can push through. It’s been maybe 5 months since I’ve had one that put me to bed, and that was a real rarity... the impact on my day-to-day life is extraordinarily different to what it was.”

But it comes at a cost - usually around $350 a month, though she’s found one pharmacy selling Emgality for $279. For Barden, that cost is well worth being able to work and earn, and be present in her family life.

“I’m so grateful that I’m in a financial position that I can afford it, that I found a cheaper option and I can drive to it, but there are so many people where it is just out of reach.”

Sisters Katie Barden and Robin Wilson-Whiting have tried multiple different treatments for migraine. Photo / Supplied

Migraine may be genetic, but her sister Robin Wilson-Whiting is proof that not everyone gets the same symptoms - or finds the same treatments helpful.

Wilson-Whiting, 37, who works as a union organiser, started getting migraine attacks around the age of 24, and recognised the signs thanks to her sister.

“It wasn’t directly correlated, but I think they started sometime after I’d had a pretty gnarly bike accident, which involved a concussion,” she says.

“I guess I had a shortcut because Katie had already been dealing with them for a while.”

“What a cute thing to share,” Barden jokes, while her sister adds, “It’s a blessing and a curse. Not that I’m glad that either one of us deals with migraines, but the fact that we can share tips.”

Wilson-Whiting gets different types of attacks, from those with an aura - a “flickering visual disturbance” - to brain fog that she likens to “wading through sludge”.

“There’s pain that is strong and definitely exhausting and uncomfortable, but you’re able to get through your day, so you end up just working through. The other type that I struggle with is a kind of brain fog [where] I feel like I could stare at the wall all day.”

The treatments that work for her older sister haven’t worked for her.

“I’ve given all of the non-funded ones a pretty good go, and sometimes it’s a relief that it doesn’t work because of the eye-watering [cost],” she admits.

One of the few remaining treatment options available in the country has helped reduce her headache days from 4 to 5 a week at the very worst to “maybe 2″.

Most people with migraine rely on a combination of medical and non-medical treatments and lifestyle changes to help prevent attacks. “As a migraine sufferer, you just learn certain things,” Barden explains.

“I know that I can’t get too tired, I can’t go too long without food, I drink lots of water. I don’t really do perfume because it’s too strong. Sleep hygiene is such an important one.”

Neither of them drinks alcohol, because as Barden puts it, “a hangover would feel just like a migraine”.

Wilson-Whiting, meanwhile, avoids certain things in her diet, such as cured meats, MSG and Diet Coke, which can all be triggers.

“I pretty much won’t go away from home for a night or weekend without my wheat bag and my ice pack. Heat on my neck and ice on my forehead.”

Cold water makes a big difference - she’ll often pop round to her sister’s place to use their swimming pool. “It’s given me immense relief, probably another 4 hours of energy that I wouldn’t have had otherwise.”

The sisters’ individual journeys show just how migraine “affects everyone in different ways”, Barden says.

“We have tried the same medications and responded differently to them, or not at all.

“Because it is a relatively invisible disease, you do unfortunately get really good at just pushing through. If I just curled up in a ball in a dark corner every time I had [an attack], I wouldn’t partake in my own life.”

When it comes to well-meaning but misguided advice, they’ve heard it all. Wilson-Whiting lists a few things not to say to migraine sufferers: “Have you tried Paracetamol? Do you drink enough water? Have you tried meditation?

“Maybe think a little bit before you offer simple solutions to something people have been really battling with for decades.”

What is migraine disease?

Epidemiologist Dr Fiona Imlach is a senior research fellow at the University of Otago in Wellington’s public health department, and has suffered from chronic migraines herself.

Her experience led her to co-found the Migraine Foundation Aotearoa New Zealand (MFANZ) in 2022, to raise awareness and help get funding for new migraine medications.

As Imlach explains, there are two ways of talking about migraines - the attacks themselves, and as a neurological disease.

“The typical episode is a moderate-severe headache associated with nausea or vomiting, also associated with some sort of sensitivity to light and sound, also smells,” she says.

“You can have migraine without a headache, and you can have other symptoms even before you get the headache and after the headache.”

Beforehand, symptoms commonly include visual aura, fatigue, brain fog, mood swings, nausea and neck pain. After the headache, there’s what Imlach describes as a “hangover period”.

“You often feel a bit rotten for a day or two afterwards.”

A migraine headache usually starts on one side of the head, though it can spread, and can last at least four hours or up to 3 days. It will also worsen if you try to do regular activities like exercise.

“People think it’s just a headache - it’s not just a headache. If you get regular tension headaches, [that’s] quite a different experience than if you’ve got migraine,” Imlach says.

Then there’s migraine as a neurological disease. “That means that I’ve got this neurological condition where I have a brain that has a tendency to send me on these attacks.”

It’s not clear what exactly causes the disease, but it’s known to be genetic and to have certain triggers.

“We can see from scans that there are things happening in the brain, and we know that there are some neurotransmitters involved in pain and sensory processing and all these things which are involved in migraine.

“That’s where new drugs are targeting these things, but we don’t understand why we get it or why some people only have one or two attacks ever or in a year, and some people have them almost every day.”

To be diagnosed with migraine disease, you need to have had at least five separate attacks.

“If you get 15 or more days a month of a migraine-type headache, you’d be classified as [having] chronic migraine. Even less than that can be really destructive for people because of those other symptoms.”

Only two migraine-specific painkillers, called triptans, are available in New Zealand - though there are seven available worldwide.

Dr Fiona Imlach, a Senior Research Fellow at Otago University’s Department of Public Health in Wellington. Photo / Otago University

“Internationally, the guidance around triptans is if you fail one, try another because they’re all a bit different. You have to try three before you can say that you’ve failed this treatment,” Imlach explains.

“Nobody in New Zealand can say they’ve failed the treatment because they actually don’t have enough to try.”

New medications developed specifically for migraine prevention include one targeting a neurotransmitter in the brain that has been shown to cause migraine attacks, which Imlach says has “changed my life”.

“I had tried just about everything... but this new medication, which I fund myself because it’s not funded yet, has been the only thing that’s worked and it’s knocked back my 14 days of headache to about four, which has made a huge difference.”

Imlach recently published a study showing about half of Kiwis with migraine use non-medical treatments such as supplements, and that access to more treatments is needed as well as further research into migraine.

“You just have to try to find something that works for you, and everybody’s journey is different, so that explains why people have tried so many different things, because they’re really just trying to find an answer,” she says.

Several of those newer migraine medications are on Pharmac’s waiting list for funding, as well as a third triptan, which it had previously proposed to decline but is now back on the options list.

MFANZ are surveying migraine sufferers about their use of triptans to help make a case for funding it. One reason more migraine medications should be funded, Imlach says, is that migraine affects people’s ability to work.

“If you’re trying to stimulate the economy and get productivity and growth, you’d want people to be working optimally,” she says.

“I couldn’t work full-time when I had chronic migraine.

“[These are] treatments that could benefit not only people’s quality of life, minimise suffering and improve family lives, but actually improve society.”