living with chronic migraine: turning a 'cycle of pain' into a platform for change
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maya carvalho and her organization, the canadian migraine society, have developed a member recommended list of doctors across the country who are compassionate and treat people with “the dignity and respect they deserve.”
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stabbing head pain that brings on severe nausea and sensitivity to light and sound.
maya carvalho remembers her first migraine attack vividly. it’s the kind of experience that stays with you, robbing you of energy and time.
“it was just incredibly painful, throbbing head pain that was at a level of intensity that was unlike anything i had ever gone through before,” she says, recalling that day almost 20 years ago. “it was just a really powerful experience.”
migraine attack can quickly develop into chronic migraine disease
for maya, the pain and disability of migraine began in her mid-30s with no explanation, and the attacks became increasingly longer. she says most people begin to have migraine attacks in their 20s that gradually becomes chronic migraine. “typically, there’s a slow progression, a trajectory up of frequency until a person becomes chronic, and it happened very quickly for me. i think it was due to a number of shifts in hormones and stuff going on with my back and my neck and other things happening that triggered it.”
she was seeing a doctor for her back pain who told her that her entire pain problem was that she didn’t exercise. “being the type a person that i am, i instantly joined a gym and started going every day. that didn’t work out for me and then it very quickly went from one attack to being chronic almost instantly,” she explains.
“at the peak of my disease, i was getting attacks that would last eight or nine days straight.”
she would spend long days mostly lying in the dark of her bedroom in silence.
it was an unwelcome departure from who maya was—a vibrant, ambitious marketing executive for l’oréal in new york city who thrived on 12-hour days, non-stop meetings and business travel. while she loved her job, she couldn’t manage her responsibilities living with debilitating chronic migraine. “i was working at my dream job,” she says, adding that while she reached out to try medication and other therapies with referrals to a pain physician and sports medicine doctor, nothing had worked. there was no relief from these periods of severe pain and incapacity, so there was no option to abort the migraine attacks and keep working.
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leaving a dream job because of debilitating chronic migraine
she and her husband decided to move back to toronto to slow down her life and find effective treatment. sadly, that didn’t happen for years.
as many as one to two per cent of the population in canada lives with chronic migraine. while there are triggers including stress, certain foods, noise and hormonal fluctuations that differ from person to person, the cause of this neurological disease is not fully understood and the subject of debate, according to the journal of headache and pain.
further, research shows that migraine attacks originate in the brainstem from the hyper-excitability of the peripheral and central nervous system, says the canadian migraine society: “basically, neurons misfire and unleash an electrochemical reaction that sends pain signals to the cortex and causes other migraine symptoms.”
beyond nausea and vomiting, people can experience symptoms like brain fog, neck pain, jaw pain, dizziness and vertigo, problems with speech and muscle control, and more.
after years of going from neurologist to neurologist (the most appropriate physicians for migraine, she says), hoping and pushing for a solution, and a headache specialist who told her there was no hope for her and no medication would ever help her, maya decided to take matters into her own hands.
“i saw multiple neurologists. i was at pain clinics. i was at headache clinics. i absolutely could not get help. i was not getting better.” worse still, was the lack of empathy from experts. there was very little to no compassion.
“there was an incredible amount of invalidation. there was an incredible amount of doubt. and it was really, really hard to navigate.”
“there was an incredible amount of invalidation. there was an incredible amount of doubt. and it was really, really hard to navigate.”
at one point, she learned that a neurologist had written all over her medical notes that she was very fashionably dressed as though to indicate her pain couldn’t possibly be that severe because she showed up at the office fashionably dressed as usual. “the idea that adult women are being patronized and invalidated and doubted in this way when you’re coming from a high-power career. what i would always say is ‘why would i be making this up?’”
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eventually it got to the point where a neurologist pulled out her medical file and shoved it in her face proclaiming, “look at how many medications you have failed. i don’t have any other patients with a medical file this thick.” they said that nothing would ever work for her.
maya says she’s lucky she’s a strong, tenacious person who doesn’t give up. but the experience made her question many things.
“medicine is about the fact that we’re discovering new things all the time and what we have always known about migraine disease is that we don’t know very much. it’s incredibly complex. we don’t know what’s coming.”
the birth of the canadian migraine society
no one wants to live without hope. so, maya pursued a renewed sense of purpose as a migraine educator and advocate. in 2020, she launched the canadian migraine society to support herself and others living with chronic migraine and took a deep dive into the research. she wanted to compile resources and understand available drugs and other treatments, along with other potential interventions in development.
her organization has 5,000 members of whom 4,000 live with chronic migraine. maya has created an ongoing treatment guide of everything available in canada for migraine, meeting a tremendous need for people who were going to their doctors where they might try them on one or two things and then their doctors might say they can’t help them. her members print off the treatment guide and show their doctors, pointing out the list of 20 or more other therapies they could try. family doctors are also using her guide as a resource.
maya brings her heart to the support groups she runs, fully understanding what it’s like to be invalidated and under treated. “my intention is to make people feel seen and make them feel heard,” she says of the importance of empathy. “they come to us and the first thing that usually happens is they’re in so much despair we flood them with empathy.”
maya brings her heart to the support groups she runs, fully understanding what it’s like to be invalidated and under treated. “my intention is to make people feel seen and make them feel heard,” she says of the importance of empathy. “they come to us and the first thing that usually happens is they’re in so much despair we flood them with empathy.”
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her organization has also developed a member recommended list of doctors across the country who are compassionate and treat people with “the dignity and respect they deserve.”
the sooner people can get help for migraine attacks, the better, maya says.
“within the world of migraine, what happens is you start with episodic migraine and if you don’t treat the attacks effectively, your body is still in that pain cycle. then what happens is you progress to chronic migraine because essentially the easiest way to say it is that pain begets pain,” she explains. “the more you allow your body to be in that cycle of pain, the more likelihood there is that your entire nervous system gets sensitized and then is triggered into attacks all the time.”
while for years migraine attacks were treated with acute medications, in 2018 maya read about a new class of medications to prevent migraine attacks based on the discovery of a protein involved in the neurochemical reaction. however, when she brought the information to a neurologist in hopes of a prescription, she was told flat out that the drugs were not coming to canada.
“i’d probably tried at least 30 medications, so i was pretty desperate to try something new and this person just told me no, he knew better than i and it wasn’t coming [to canada].”
maya found a neurologist who was willing to try her on the drug. it did come to canada, and helped her turn the corner on the intensity of the attacks. she has a migraine attack every other day and has some pain all the time, but she’s able to function.
what does her migraine attack feel like now?
“severe pain typically on one side of my head, it starts in the area above my eye, through my forehead, the top of my head, usually my neck, and it’s just a really intense pain. i might be able to get rid of it in four hours. if the acute medication is not successful, then i’m looking at 12 to 24 hours.”
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the next phase of advocacy and hope for others
while she’s fiery and passionate to speak to, it’s sobering to hear her says she has limited years left to be able to continue to contribute to migraine patient advocacy.
“i have a window because i can’t push through on adrenaline forever,” she says. “so while i am able to, i want to do everything i can to affect some change. it’s really important to me.”
her message to others is one of hope for better understanding of how people are affected by chronic migraine, and how compassion can build people up.
“what people don’t realize is the isolation that goes along with chronic migraine is very intense because it’s affecting every facet of your life. it affects your finances, it affects your career, your family life, your social life, and because you’re in pain every other day, you’re withdrawing and eventually it’s such intense isolation,” she says.
“what people don’t realize is the isolation that goes along with chronic migraine is very intense because it’s affecting every facet of your life. it affects your finances, it affects your career, your family life, your social life, and because you’re in pain every other day, you’re withdrawing and eventually it’s such intense isolation,” she says.
“it’s important for me that there’s a community where people can talk to other people who understand exactly what they’re going through, understand exactly the grief they’re experiencing and the loss they’ve experienced. we can build them back up together.”
to learn more about the impact of migraine, visit the canadian migraine society.
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