My first experience with migraine was when I was a child, pressing a flannel to my mum’s head and bringing her a bucket to vomit in, stroking her head as she lay still on her bed in the dark in excruciating pain. These memories are so clear to me decades later because they were so unusual. My mum never stops and barely sleeps, so seeing her so wiped out by migraine was frightening.
At first, mine were similar to hers. A sudden onset of blinding, stabbing pain on one side of my head, an overwhelming nausea, eventual forceful vomiting, dehydration, intolerance of light, exhaustion and fatigue. But while the frequency of Mum’s migraines have waned over the years – and her symptoms, although debilitating, have remained similar – mine have changed, and become worse.
Now they make me cry. The pain begins on one side of the head but can end up on the other. They last longer. The pain is much worse. The vomiting is more prolonged.
I’ve never been able to identify any one cause, although dehydration, stress, wine (even just one glass) and exhaustion have at times played a role, at other times no role.
If my migraine does not subside within 24 hours, that’s when I know I’m in for a hospital admission. I usually end up calling an ambulance or taking an Uber to the emergency department around day three, because each time I try to convince myself that maybe in a few more hours I’ll be better and I can avoid the IV drip and admissions process.
By the time I end up in hospital I’ve been vomiting for hours, I’m dehydrated, I have been crying on and off from the pain, have contorted my body into all kinds of positions trying to relieve it, and I have poked and prodded all manner of things at my head trying to burst a tension I can’t describe.
I find it difficult to put migraine pain into words. I have been told by medical professionals I have a high pain threshold. When I broke my leg and elbow, the paramedics said my leg probably wasn’t broken because I’d be in more pain. I ended up requiring surgery for multiple fractures. I managed entirely on my own in the days after an adult tonsillectomy and throat abscess removal, despite being told I’d need help.
I say all of this not to sound tough, but to demonstrate that if a migraine were just a bad headache – if it was a pain that could be slept off, breathed through or relieved with some Panadol – then the economic cost associated with migraine each year would not be US$19.3bn in the United States, A$35.7bn in Australia and £8.8bn in the UK.
While I am lucky that many of my migraines can be treated with triptans – a class of drugs that don’t prevent or cure migraines but nip them in the bud if taken the moment symptoms appear – they don’t always work. The times when triptans don’t work have been enough to significantly impact my quality of life, leading to hospital and affecting my work, hobbies and general wellbeing.
I’ve tried a migraine-preventative drug traditionally prescribed for epilepsy, called Topiramate. It took time to wean on to, and, when it did nothing but give me side effects without preventing migraine, took time to wean off again. I’ve had imaging scans of my head. I still don’t know a clear cause.
Once the pain of a migraine leaves, I am exhausted for days, slur my words, feel nauseous still but no longer vomit, and become emotional. But I am so relieved the pain is gone I don’t care about these symptoms, which really, are debilitating on their own.
Despite the Global Burden of Disease study finding migraine to be the sixth-highest cause worldwide of years lost due to disability, migraine is an under-recognised condition that is often treated with the wrong drugs. It was not until last year that a GP suggested I try triptans and put me on a migraine treatment plan, some 15 years after my first episode.
“Migraine is quality-of-life threatening, not life-threatening, so is doesn’t pull the heart strings for resources and funding in the way the conditions like cancer do,” Prof Anne MacGregor from the Centre for Neuroscience, Surgery and Trauma at the Barts and the London School of Medicine and Dentistry, says.
“So research and funding is extremely limited.”
MacGregor originally planned a career in surgery but had a six-month gap before her training rotation started in 1988, so she took up a research post at the City of London Migraine Clinic during that time. She stayed at the clinic for more than two decades because she recognised more work in the area was sorely needed.
“I became passionate about the field, particularly migraine in women, because there is a significant lack of understanding and a huge unmet need,” she says. Not only has migraine research been underfunded, but the most recent data suggests the risk of migraine is 3.25 times higher for women than for men. But funding for women’s health issues generally is woefully inadequate.
This is despite the World Health Organization finding as far back as 2011 in their global survey of neurological disorders a “worldwide neglect” of migraine, and that migraine is “a major public health problem”. Attack frequency differs from person to person, but can occur anywhere from once a year to more than once a week.
MacGregor was involved in research that led to one of the key breakthroughs in migraine treatment in the late 1980s with the development of triptans, the first specific drugs for symptomatic treatment of migraine.
More recently, she has researched drugs that act on a pain chemical known to increase in levels during migraine. “Several drugs for both treatment and prevention are now available, but they are very expensive,” she says.
Another issue with finding treatments for migraine is that the types of migraines and their triggers vary so drastically. There’s the “classic” migraine with aura (sensory disturbances), migraine without aura, menstrual migraine, hemiplegic migraine (a type that causes weakness on one side of the body), to name a few. They can all be disabling.
Prof Lyn Griffiths, the executive director of the Institute of Health Biomedical Innovation at Queensland University of Technology in Australia, leads research into genetic causes of migraine and new treatments for migraine sufferers. A migraine sufferer herself, she became interested in research when her son experienced his first migraine at just five years old.
“As well as the pain and nausea I get the neurological symptoms that occur before the migraine, in particular, visual disturbances, flashing lights, waving lines, and I can lose my vision for up to about 20 minutes at a time,” she says.
“I knew my son was suffering from migraine at age five because not only was he saying his head was hurting and he was throwing up, but he was saying the whole world was shivering, and that it was difficult, the lights ‘keep going’.
“I thought: somebody really ought to be researching this, it’s obviously genetic.”
Frustrated by how little information there was for her and her son, Griffiths decided to do the research herself.
“Unless you suffer from migraine yourself, you don’t realise just how bad it can get and how much it can affect your life. Some people just seem to think it’s just a headache. Like maybe you had a big Friday night out or something.
“But it’s not like that, it’s much more severe, it can occur through long stages of your life and during the most productive years of your life, and it’s episodic, so many will get it again and again. And it can go on for days. It’s just awful. You just cannot function.”
She says migraine is a common disorder, affecting at least 12% of the population and up to about 20%. “But because it doesn’t generally affect mortality like cancers, it doesn’t seem to have the profile that is needed for research.”
About 90% of people who suffer from migraine have another close relative who suffers from migraine, and at least half the time, it’s one of their first-degree relatives. Griffiths has helped discover three genes that are now well-known as causing the most severe type of inherited migraine – familial hemiplegic migraine – which can lead to coma and paralysis.
“If you have a mutation in one of those three genes, you have this type of migraine,” Griffiths says. “This is a type of migraine that clearly runs through families and in just about all cases there is a dominant pattern, meaning if you’ve got it, your children have a 50% chance of having it.”
Griffiths says while there are now some good treatments and diagnostic tests for these rarer and severe types of migraine, for the really common types of migraine, the role of inheritance pattern and the genes involved are less clear-cut. She hopes in the future, the involvement of other genes in these migraines will be better understood, leading to more diagnostic tests and personalised treatment.
Another barrier to treatment, however, is that a significant number of people experiencing migraine are either not properly diagnosed or are incorrectly diagnosed. MacGregor says sinusitis is the most common misdiagnosis.
“For women, they often assume that the severe headaches they experience with menstruation or other hormonal changes are something that they just have to live with, without ever receiving a diagnosis of migraine,” MacGregor says. “There still remains a stigma over headaches, with many workers not informing their employers that they have headaches for fear of being seen to be unreliable, so there is definitely room for better understanding there.”
Griffiths says that in Australia, GPs receive little training for recognising or treating migraine. Struggles to secure funding for better research and care is an issue around the world, she adds, which she says has led to a close collaborative relationships between migraine researchers internationally. According to the World Health Organization, in the United States and the United Kingdom, only half of those identified with migraine had seen a doctor for headache-related reasons in the previous 12 months, and only two-thirds had been correctly diagnosed.
“I think we really need to recognise that it is the most common neurological disease and the most disabling disorder in terms of the pain associated with it and the effect it has on your life. I don’t think people realise that yet, I really don’t,” Griffith says.
“That has to change, because people suffering need a better quality of life.”
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