Since childhood, Fiona Imlach has suffered migraine attacks, which worsened as she reached her 20s, and no treatment seemed to make a difference.
“I must have tried at least a dozen different types of preventers,” says Imlach, an epidemiologist at the University of Otago. “I tried betablockers, antidepressants, anti-epileptics, I even tried Botox, but nothing worked for me.”
Migraine is more than just a headache; it is a complex neurological disorder with symptoms that may include loss of coherent speech, paralysis on one side of the body, nausea and vomiting, visual disturbance and sensitivity to sounds, light, smell and touch. Around 45,000 New Zealanders are thought to suffer from chronic migraine which is defined as 15 or more headache days per month. For these chronic sufferers, relying on pain medication carries a risk.
“You can sensitise the brain even more and induce a headache that is as bad as the one you were trying to deal with,” says Imlach. “People get into a cycle of taking more and more pain relief, because they think that’s going to help, and it’s actually making things worse.”
For years, Imlach did her best to hide that she was a chronic migraine sufferer, concerned about the stigma and potential impact on her career. Then in 2021, she decided to take time off work and walk the Te Araroa trail to raise funds for migraine awareness. Surprised to find there was no dedicated charity she could donate to, Imlach went on to co-found the Migraine Foundation Aotearoa New Zealand.
“If you have chronic migraine you can end up disengaging from life and society, so it becomes an invisible condition. One of the reasons we started the foundation is that we knew there are people who are severely disabled and not getting much help. They don’t have the capacity to advocate for themselves because they’re just trying to survive.”
Recently, Imlach published research in the New Zealand Medical Journal to provide a clearer picture of what it is like to live with migraine. More than 500 people responded to a foundation survey and the results confirm both the heavy burden of the disease and the need for better care.
Nearly a quarter of respondents had chronic migraine and of those, 20% had continuous or nearly continuous headache and another 22% had 24 days or more of headaches a month.
More than half of those eligible for preventive medication weren’t taking it, often because these medications didn’t work or had significant side effects. Many were relying on opioids to manage migraine instead, despite the risk of medication-overuse headache.
Significantly more women than men are affected by migraine and there is believed to be a hormonal, as well as a genetic, component. However, the theory around certain foods, such as chocolate, triggering an attack has changed. It is now thought that in the early stages of a migraine, the brain triggers a food craving.
Although the exact cause of migraine is still to be identified, there has been a breakthrough in treatment. New preventive drugs developed specifically for migraine block the calcitonin gene-related peptide, a small protein involved in migraine attacks.
Two of them, injectable monoclonal antibody medications Emgality and Aimovig, are available in New Zealand but remain unfunded. The Migraine Foundation has put in an application to Pharmac for Emgality and the drug is now on a priority list, but there is still no guarantee it will be funded.
Imlach pays $325 a month for the treatment which has been a game changer. She now has fewer migraine attacks and, if she does have one, can treat it quickly without fear of overusing painkillers.
“These new treatments are so exciting,” she says. “They have surprisingly few side effects so people tolerate them really well and will stay on them. And, while they don’t work for everyone, there are more new drugs in the pipeline.
“One of the things we’re trying to do with the foundation is raise awareness of the potential new treatments that are coming. “It’s a horrible thing to have a chronic disease and think, this is my life, there’s nothing more anyone can do.”
