By Rachel Choy
Migraine sufferers have an 'invisible disease' that keeps them off work and out of normal life. Photo: Unsplash
I was driving a company car when I went to turn my head to check the road was clear before changing lanes… but I couldn't. I was experiencing what seemed like temporary paralysis, and it was frightening.
I've been suffering from migraine since I was in my late teens, and I've been looking for pain relief ever since. Migraine is a disabling neurological disorder, with Migraine Foundation Aotearoa estimating that 753,000 people live with migraine in our country - more than epilepsy, stroke and diabetes combined. Yet due to it being an "invisible disease", many patients have their pain dismissed or not believed.
Working in the TV industry in my 20s, I knocked back prescription meds to nip migraine attacks in the bud during long days. While filming The Amazing Race Australia in Ōtautahi, I experienced a major side-effect of Sumatriptan - a medication that narrows blood vessels in your brain.
Finding it a struggle to move my neck was scary, but leaving my migraine untreated wasn't an option. I chose to keep my disease a secret, choosing to dash to the toilet to vomit instead of being seen as a problem employee.
Leading expert on living with migraines
When I hit my 30s, I realised that my migraine had gone from manageable to chronic, meaning I suffered from over 15 headache days a month. A minimum of eight were acute. At one point, I was unable to leave my house for weeks on end due to pain and nausea. This isn't uncommon among sufferers: Migraine Foundation Aotearoa claims the "economic cost of migraine in New Zealand is an estimated $5 billion per year".
Isn't it just a bad headache?
Doctors and scientists believe migraine is due to "the result of abnormal brain activity affecting nerve signals, chemicals and blood vessels in the brain".
It's not just a headache that you can kill off with over-the-counter medication. Symptoms vary but can include throbbing, one-sided headaches, nausea, aura, temporary blindness and more.
Attacks can last from four to 72 hours and any form of movement can make the pain worse, including something as simple as coughing. Migraine sufferers can be extremely sensitive to light, noise and scents, and the postdrome recovery phase (what I affectionately call the migraine hangover) where they are exhausted or confused can last up to a day.
What causes migraine disease?
Migraine disease is heavily linked to genetics. If a first-degree relative (parent, sibling, child) has migraine disease, you are 1.5 to four times more at risk to suffer from it compared to the general population.
It's not the only factor, though, with lifestyle, environmental and other yet-to-be-determined factors also coming into play. Triggers have long been believed to cause migraine attacks, including stress, hormonal changes, lack of sleep, food and environmental factors (such as lighting, barometric pressure and temperature).
However, recent research indicates triggers may not be as crucial in migraine avoidance as first thought. Non-headache triggers such as food cravings and sensitivity to light could be taking place prior to migraine during the prodromal phase (hours to days prior to an attack), meaning the attack is already taking place.
Why do more women get migraines than men?
Migraine disease is also two to three times more common in women than men, and all signs point towards a hormonal difference as the culprit.
"It seems to be the fluctuations in hormones which is the main problem - which is why menstrual migraine occurs, and why migraine attacks can get worse around perimenopause, and probably why migraine often improves after menopause," says public health physician and epidemiologist Dr Fiona Imlach.
What are the treatment options?
Patients can use abortive medication to stop or lessen acute migraine attacks. These can include triptans which act as a barrier for the brain's pain pathways, non-prescription and prescription non-steroidal anti-inflammatory drugs (NSAID) such as Voltaren, or hospital treatments and infusions for severe attacks.
When it comes to preventing migraine, most of the medications used today were developed for other uses, such as antidepressants, blood pressure or epileptic medications.
In May 2018, the US Food and Drug Administration (FDA) approved the first class of medication developed specifically for preventing migraine: four calcitonin gene-related peptide (CGRP) monoclonal antibody medications. Two are available in Aotearoa but aren't funded by Pharmac - Emgality (galcanezumab) costs approximately $325 per 120ml injection while Aimovig (erenumab) will set you back $678 for a 70mg injection and $1356 for a 140mg injection. Over the ditch, it's not so grim: Emgality is funded so eligible patients only have to fork out A$31.60 per month.
While Aimovig isn't funded, a discount scheme means patients can get 2x 70mg injections for A$695. Australia also has another funded injectable not available in Aotearoa, Ajovy (fremanezumab), at just A$31.60 per dose.
What else can be done?
Dr Desiree Fernandez, a neurologist specialising in headache disorders and Clinical Advisory Group member of the Migraine Foundation Aotearoa, says education is crucial.
Firstly, Fernandez wants people to understand that migraine is not just a headache, but a neurological condition that's more common and more disabling than what is recognised and acknowledged.
While Migraine Foundation Aotearoa provides online courses for GPs already out in the workforce, she says medical students should have more training in all neurological conditions, including migraine.
"When GPs know about [migraine], they're more sympathetic with their patients… they're not scared to manage it," Dr Fernandez says.
"Sometimes they don't mean to fob their patient off, they just don't know what to do with the patient."
She says the best way to reduce stigma is to get rid of the secrecy that surrounds it.
"Often you see migraine patients who've had a lot of chronic pain. Their pain threshold is quite high, and they carry on regardless. But it's a struggle."
*Rachel Choy is a Kiwi-Chinese writer and co-founder of pop culture substack The Offcut.