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watch: more hope than ever for migraine patients — but misinformation still creates barriers to treatment

the past five to ten years have seen an explosion in treatment options for migraines — but why do only a minority of patients have access?

by emma jones

jun 13 2023
read time 8 minute read
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for marta mrozek, making the decision to leave her job in event planning was agonizing. but chronic migraines while running multi-day conferences had made her feel “defeated.”
“i liked my job, i worked, i wanted to be independent. i just got married and everything was supposed to look differently, you know? i had a plan in my head,” she says. “i just kind of started to lose control over my life, slowly but surely … all of a sudden i have to face it and i have to take care of it.”

mrozek , who has been experiencing migraines since she was five years old, remembers missing out on a lot of childhood activities. school trips and friends’ birthdays would often be out of the question, and when she wasn’t in pain, much of her time would be spent on her own, catching up on schoolwork from missed classes. as an adult, after making the choice to focus on her health, she wondered if it would interfere with her dream job in event planning and her goal of being able to support her parents after they retired.

“i remember being afraid all the time that i may end up with pain and i won’t be able to continue doing something that i wanted,” says mrozek. “whether [that be] studies or being with my friends or being with my family.”

headache disorders, including migraines, were ranked as the second leading cause of disability-adjusted life-years in patients aged 10 to 24, and the fifth leading cause in patients aged 25 to 49, according to the 2019 global burden of disease study . a 2022 study also pegged the annual cost of chronic migraines in canada to an average of $25,669 per patient, a figure that takes into account both direct health-care costs, like prescription medications and specialist appointments, and indirect, through lost work productivity and loss of quality of life. the average annual cost for high-frequency episodic migraines fell into a similar range, at $24,885, while low-frequency episodic migraines estimated to cost $15,651 annually.

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however, despite the clear impact of migraines in canada, only a small number of patients access preventive medications and migraine-specific treatments, highlighting “an important need for more effective management of individuals with migraine.”
part of the problem was the medical system just didn’t highlight migraines as a topic of importance, explains dr. elizabeth leroux, headache specialist at the brunswick medical centre in montreal and president of the canadian headache society. at a panel event kicking off migraine awareness month in canada, leroux recalled colleagues being surprised that an ambitious young neurologist would want to focus her practice on migraines.
“the degree of education health-care providers receive on migraine just perpetuates this cycle of lack of access to care and then it feeds into the stigma because then we see migraine as invisible, something that ‘hysterical women who like to whine’ get,” leroux told healthing.
the dearth in awareness means many general practitioners aren’t aware of the advances in migraine treatment, and headache specialists who would be up-to-date on research are few in number. plus, delays in getting access to a headache specialist — for mrozek it took a year to get an appointment — puts more barriers in the way of people experiencing chronic pain.

what does a migraine feel like?

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migraine canada

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while a headache is an obvious symptom of a migraine, these attacks can also come with several other categories of symptoms, explains leroux. hypersensitivity to lights, sounds or smells; gastrointestinal symptoms like nausea; pain in other areas of the body like the jaw or neck; cognitive symptoms like brain fog; and emotional responses like irritability.
“it’s usually one side of my head that i felt throbbing, and it came in waves,” mrozek says of her migraines. “ … my neck and my shoulders would be tense, so that didn’t help, as well as light sensitivity, smell, sound.
“my cognitive processes were affected as well. the foggy mind and not being able to really think through and feeling like you’re so slow and like something else is controlling you.”
the severity and frequency of these attacks also vary by person and situation, from a few, minor attacks each year, to outright debilitating, lasting anywhere from a few hours to several days.
while head pain is what most people associate with migraines, many patients will experience symptoms before and after as well. a few hours to days before the migraine attack actually occurs, about 60 per cent of patients will experience a “prodrome” phase, with symptoms such as fatigue; sensitivity to lights, sounds and smells; and severe thirst. roughly 20 per cent of migraine sufferers will also experience an aura — visual symptoms, such as seeing flashing lights or experiencing tunnel vision. other neurological effects can include tingling or numbness, having trouble speaking, and ringing in the ears. auras typically last for up to an hour before the migraine itself.

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after a migraine, patients may also experience a “postdrome” period, which can include feeling tired, experiencing muscle pains, and changes to appetite.
the constant vigilance over what could trigger another episode, coupled with the isolation during an attack and the stress over getting caught up on work and family responsibilities can also impact mental and physical health outside of the migraine diagnosis. depression, anxiety and other comorbidities are not uncommon.
“i hear from a lot of people that it’s hard for them to plan ahead because they’re sometimes worried,” explains jeremy spevick, a neurologist at cleveland clinic canada. “like, what if i get one? and, what if i can’t cope? even when people aren’t having headaches, they are sort of planning around it.”
“it makes you so lonely and so isolated,” says mrozek.

why do migraines happen?

during a migraine attack, it is believed changes in blood flow to the brain contribute to the pain and other symptoms. what exactly causes the change in blood flow, however, is still unclear.

one theory suggests hormonal fluctuations, like serotonin and estrogen, cause the blood vessels to narrow, reducing blood flow through the brain. the trigeminal nerve, which is responsible for sensation in the face (like touch and pain) and controlling motor functions (like chewing), may also be highly sensitive in migraine patients, sending pain signals to the brain and setting off an attack.

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the hormonal theory may also explain why women are two to three times more likely to be impacted by migraines than men, as estrogen levels naturally fluctuate through the menstrual cycle. this could also explain why symptoms will fade for many women once they reach menopause.
there does also seem to be a genetic component to migraines. more than 40 different genes play a role in the development of migraines, leroux says, so it’s possible there are different environmental and physical causes of migraines.

can migraines be cured?

while a class of medication called triptans, used to address pain once a migraine has started, have been around since the ’90s, the past five to 10 years have seen an explosion in preventive treatments. cgrp inhibitors, for example, block the calcitonin gene-related peptide (cgrp) known to have a role in migraine pain. botox, another treatment reported to help prevent headaches, is thought to block pain signals between the brain and peripheral nervous system.

progress has happened so quickly, spevick says he is now reconnecting with patients who have been living with migraines for most of their life and aren’t aware of the new options. outreach and education — like migraine awareness month — is useful to encourage patients to check back in with their doctors to see if there’s something better for them.

all in, leroux says there are more than 20 options for preventive treatments, including neuromodulation supplements and medications . the trick is finding the personal combinations of lifestyle changes, acute and preventive treatments that work for the patient — a process that takes trial and error. however, with some time, she notes that improvements can be achieved.

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leroux recommends that anyone who thinks they may be experiencing migraines start a headache diary to get a clear picture of when and where migraines occur, and if any triggers accompany them. (for the technologically inclined, the canadian migraine tracker app is available for free.) from here, migraine sufferers may be able to make some adjustments to their lifestyle, like getting more sleep, exercise, or finding new ways to deal with stress and mental load. this information will also help a specialist identify triggers and what treatments may be useful, if changes to lifestyle aren’t enough.

the battle to stop stigma against migraines

for many patients, convincing both themselves and their colleagues that their pain is real and symptoms are serious is the first battle. the condition doesn’t show up on mri scans or blood tests and attacks can be unpredictable. migraine sufferers are frequently told they just need to drink more water or take some ibuprofen.
“when they arrive in my office, [patients] will tell me, ‘i feel very alone,’ which is weird because 15 per cent of the population [experiences migraines],” leroux says. “but people don’t talk about migraine because it’s invisible, it’s stigmatized, it has a long history of being, ‘crazy women — it’s all in their head.’”

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in fact, in the 16th and 17th century, medical texts indicate migraines were taken seriously, with preliminary treatments and protocols suggesting it was accepted an attack could last from a few hours to several days. however, at some point in the 18th century, migraines — and the people who experience them — became something of a joke, writes katherine foxhall, lecturer in history at the university of leicester.
“a lot of people use the term migraine for any headache, so i think it gets under-recognized as like a serious issue,” says spevick. “ … [so] missed work or other things can be looked at as a weakness.”
but telling stories about migraines — stories of resilience, trial and error, and eventual success — can help, leroux says. for migraine awareness month, migraine canada released a painful reality, a short film illustrating life with migraines and chronicling some of the stories of canadians.
“a lot of them live with guilt and shame because they feel like they’re weak, like it’s their fault, like they’re not doing the right thing,” says leroux. “the only way to break this guilt and shame that just adds to the suffering of migraine is to talk about it.

“ … the way to destroy stigma is to share stories.”

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mrozek continues to live with migraines, but manages them with a combination of medication and lifestyle adjustments. she has gone back to school and is training to become a psychotherapist, to fulfil her new goal of using her experience living with this condition to help others.

readers looking for resources on living with migraines can check out migraine canada and the canadian headache society.

emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on instagram and twitter @jonesyjourn.
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