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opinion: actually, there is hope for migraine sufferers

maya carvalho: a neurologist advised me to give up hope entirely. but there are options

by special to healthing

jan 7 2021
read time 5 minute read
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opinion: actually, there is hope for migraine sufferers
chronic migraine is genetic, but is often treated as a behavioural or psychological issue. getty

you can’t see it, but i can feel it.

imagine living with an illness that is triggered by light, changes in temperature, smells, sounds or even a cool brisk breeze. an illness where your own body puts you in so much pain that you’re clawing at your head in the fetal position for days on end. an illness that medication barely touches. imagine living with a debilitating condition that others simply don’t believe. it is estimated that more than 500,000 canadians over the age of 18 suffer from chronic migraines. over 80 per cent are women – including me. 
migraine is a genetic neurological disease that affects 1 billion people worldwide. it is now believed that migraine attacks originate in the brainstem area and involve the hypersensitivity of the nervous system. it is a sensory processing disorder meaning that our brains do not process sensory stimuli the way others do. neurons essentially misfire and send pain signals to the cortex (headache area) when they shouldn’t. these neurons are primed to send pain signals at the slightest provocation. these triggers include bright light, loud sounds, weather changes, hormonal fluctuations, food, hydration, sleep disturbances, drinks such as alcohol and caffeine, and stress. 

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are one of the most severe and debilitating types of headaches, and impact close to three million canadians, 80% of them women. symptoms include throbbing head pain, nausea, vomiting and hypersensitivity to light and sounds.patients with chronic migraine — 15 or more days of severe headaches in a month — are more likely to have depression, anxiety, and chronic pain conditions.the adds that use of headache relieving medications should be limited to less than 10 days per month to avoid rebound headaches.in
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my migraines started when i was 34. i recognized the signs instantly as two family members had experienced chronic migraine. i have been living with severe chronic migraine for more than 15 years, which has impacted me in ways i never thought possible. i can no longer commit to any plans without waking up each day to assess my pain level and accommodate it. i cannot exert myself physically or i will trigger an attack. if i forget to hydrate, have more than one activity planned, spend too much time in front of a screen, the pain increases. if i do anything that involves the use of my arms or neck or if i have to go outside in cool weather, there is a good likelihood that i will trigger an attack or make an attack worse.
before my journey with migraines, i had my dream job as a marketing executive at a multinational company in new york city. i worked hard to get an mba, despite having a pre-existing chronic pain condition. it was incredibly heartbreaking having to give it up, but with multiple migraine attacks each week, there was no way i could continue. i moved back to toronto and went to every neurologist i could find to help me understand my symptoms and what options i had to help decrease the pain. time and time again, i was told there was nothing else that could be done to relieve my debilitating pain. incredibly, one neurologist advised me to give up hope entirely.

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how can a person be expected to face an entire lifetime of crushing pain with no reprieve?  the whole ethos of medicine involves discovery. it’s unethical to tell a patient there is no hope for this disease. from then on, i decided that i would turn my frustration into something positive. i founded the chronic migraine support group of canada to coach and empower canadians living with this life-affecting condition.
the group has over 750 canadian chronic migraine patients and the number is growing. the most common challenge that people are seek help for is understanding the next step in their migraine treatment. often physicians try two or three medications, then give up. i give them the tools to go back to their doctors with suggestions of what is left on the table. i’ve even developed a chronic migraine treatment guide that explains and lists all the treatments available in canada.
the other most common need is for validation and support. when they connect with my group, it is often the first time someone has believed them and made them feel that their symptoms are real. i also offer hope — hope that they can find a treatment to increase their function so they can still have relationships and that migraine disease will not define their lives.

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doctors have such an important role to play in helping people living with migraine — yet there are so many gaps in patient care. people often get in touch with me when they are feeling suicidal, and often it’s because their healthcare provider has removed hope from their lives or belittled their pain. physicians get only about four hours of training on migraine in medical school, despite the fact that the disease is so prevalent and so complex.
furthermore, canada does not have good incentives for doctors to go into headache neurology — the hours are long and the remuneration is not high enough. finally, we need to teach doctors about compassion and empathy. the migraine community is at its breaking point. patients should never expect a cure, as it doesn’t exist, but at the very least, they should be met with compassion and care and a willingness to work together as a team to improve their quality of life. for the majority of patients i work with, this does not happen.
educating the community to become better informed about resources and treatments helps inspire others to become stronger advocates throughout their chronic migraine journey, while bringing awareness to the impact of this condition. patient communities help people feel connected and provide a safe haven for those who never thought they had a voice.

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migraine changes everything

i often can’t participate in the plans my friends have, and i can’t commit to anything without knowing what my pain level will be. people don’t see us in our bedrooms with the drapes closed, lying in bed. instead, they see us when we are relatively well or pretending to be well. they tend to think of migraine as a binary condition rather than a spectrum disease. most of us who are chronic are in pain at some level, almost every day. people think that if i don’t have a full blow migraine attack, that i’m feeling well, when in reality, i am never pain free. some days medications work, other days they don’t. 

the best thing that friends and families can do is understand that chronic migraine is a neurological disease, and believe us when we describe our pain. just because it is hard to imagine, doesn’t mean it isn’t real. try to stay in touch even if we can’t get together often. reach out and offer to help with a simple errand that isn’t simple for us, and most importantly – refrain from denying our pain. 
as we navigate through this new reality, we need to ensure that these voices are heard. chronic pain is real and it is debilitating. through better awareness and access to resources and support, together we can bring hope to thousands of canadians living with chronic migraines.

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maya carvalho b.i.d, m.b.a. is a chronic migraine advocate and educator living in toronto, on.
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