more than a headache: the devastating impact of living with chronic migraines
9 minute read
in one minute, taya smith’s life changed forever.
her right ankle broke, her knee hit the dashboard, her elbow shattered the window, and her right arm dislocated.
she had spinal and nerve damage, three cracked ribs, and her hips were misaligned by the seatbelt, which also lacerated her stomach and womb.
her head violently struck the dashboard, window, and headrest.
smith, of sydney, cape breton, had a thriving career, social life, and marriage plans — until a car rear-ended her at a red light.
“i had a job in sales, marketing, and advertising. i was the top salesperson in the company and had been for about five years. i made an amazing commission, including my wages. then, in 2006, on the way to work one morning, i was stopped as the first car at the intersection when a woman rear-ended me,” smith says of the moment her life changed.
“she dropped her cell phone and, while trying to retrieve it, hit the accelerator instead of the brake, pushing my car 16 feet into traffic. before that, i had occasional headaches or migraines. since then, it’s been constant.”
taya smith with her service dog.
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life changed in an instant
anything from bright lights, loud noises, or smells can trigger a migraine that keeps her in bed for days.
“there was a time after the accident when everything went to hell. i lost my job, my fiancé said he didn’t sign up for this and left after 15 years of us being together…” continues smith.
“i must wear special glasses because i can’t handle sunlight. even my house lights are 40 watts. i can’t work on the computer for more than 15 to 20 minutes. migraines impact every aspect of my life. if i’m sitting with friends and something happens, it spikes.”
smith compares the feeling of a migraine to a “two-by-four” (a standard piece of dimensional lumber) coming up from behind her and cracking across the head.
“there are times when i’ve been driving, and i must pull over and put the window shades up to block sunlight. i’ll sit there for an hour or more waiting for the levels to come back down so that i’m safe to finish the drive home. it just impacts everything. people get tired of you having to either cancel or leave, so they stop inviting you.”
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change in medication improved her life
without a family physician for almost seven years, smith has struggled to find the most effective long-acting preventatives specifically designed for migraines. as a result, she uses holistic treatments, including marijuana.
“but after putting me on every pain medication you can think of, with the migraines not stopping or the levels (of pain) only lowering, a recent vacation to cuba changed things. my headache was getting bad, and i passed out at the resort. they insisted that i go to the clinic,” she explains.
smith was given three packages of ubrelvy (ubrogepant), an oral prescription medication approved for the acute treatment of migraine attacks in adults.
ubrelvy is designed to stop active migraines, rather than prevent them.
“in about 30 minutes of taking one, i’m sitting there, and my friend asks, ‘why are you crying?’ i realized that i had no pain whatsoever. when i returned to canada, and i showed them (the walk-in clinic) the pack of pills that i got in cuba, i was told they are experimental on the market, and we don’t prescribe that section,” she says.
“but i was there (in cuba) for three months, and it worked consistently.”
health canada has approved ubrelvy for the acute treatment of migraine attacks.
smith praises the empathy she received in cuba and hopes canadians will better understand this invisible, complex neurological disease.
“before the crash, i was always doing something — road trips, skydiving, bungee jumping, you name it. i was very active. after the accident, depression set in because nobody understands, and nobody really wants to do much about it,” reflects smith.
“the doctors don’t really care. most of them that i’ve seen say this is your new normal. i’ve become good at putting on the mask. but the reality is, people don’t see me on my worst days when i can’t even leave the home.”
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she has high praise for her service dog, who she says is a lifesaver.
“i have an eight-year-old service dog. i don’t know what i would do without him. if i have a problem, he’ll come over and help. if my alarm goes off and i haven’t taken my medications, he will make me get up and take them. if i’m sitting there and having problems and i say, ‘mommy needs the dark,’ he will shut off all the lights,” she says.
“he does a lot of things for me, if i’m just not able because my migraines are so bad. he’s trained to watch for them.”
despite chronic migraines, smith still maintains a positive outlook on life.
“all you can do is your best each day. if it happens, it happens. don’t let it drag you down. i try the best i can. if i can’t do something, i’ll try again tomorrow. i am still independent. i treat every day as if it could be my last, and i take nothing for granted.”
ashley sonmor having a migraine attack.
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finding joy in pain-free moments
ashley sonmor, also a resident of sydney, cape breton, has shifted her perspective to find pockets of joy in the pain-free moments after experiencing the waves of isolation and depression caused by migraines.
she recalls having them as early as age eight.
“i remember my grandmother taking me to the doctors because i was taking tylenol all the time. i always thought it was just a severe headache. but it would begin with an aura, and my vision in my left eye would become strange and blurred. once the aura passed, there was dizziness, like vertigo, a feeling of walking on a boat,” explains sonmor.
“then, usually, the headache starts. it typically comes up the back of my neck and over, almost always the left side of my head. i do get them on the right side occasionally, but almost always on the left side. sometimes there’s vomiting and all that fun stuff.”
her migraines come in cycles, with good months suddenly followed by frequent episodes.
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“on those bad days, i barely get out of bed. you spend a lot of time just depressed, even in between the migraines, because you barely have a moment to catch your breath before another one happens again. so, you’re not going out with friends, you’re not doing anything. you’re just home in bed.”
sonmor says she is fortunate to have a career that understands the unpredictable nature of her neurological disease.
“i’m very lucky with scheduling for long-term care because if i wake up with a migraine, i can come in late,” she said. “like, i have medication that i can take, but it takes time to start working. so, i’m on a preventative as well. but i can go into my office and turn the lights out, close my door, and everybody knows i will be working slowly and to leave it alone.”
ashley sonmor with her supportive husband, jordan.
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over the past seven years, since having her two children, sonmor notes that her migraines have, unfortunately, become worse than in previous years.
“they were bad as a child, and then as a teenager, they mellowed out. later, they started back again in my 20s. triggers can set it off, like too much caffeine or not enough; skipping meals is a big one, any disruption in my sleep, eating too many oranges…”
it can take a couple of hours leading up to the migraine, which, in the worst-case scenario, has landed sonmor in the hospital’s emergency department.
“but my husband, jordan, is so supportive. the moment he sees my eyes glaze over, he usually knows that it’s coming before i do. then he helps take care of the kids or whatever needs to be done, while i go into a darkroom with an ice pack around my neck and start my medication. once the medication kicks in, i’m usually pretty good.”
when it comes to advice, sonmor stresses the importance of seeing a specialist and having tailored medication to manage symptoms and return to normal daily activities.
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“it has made such a difference for me. my doctor has been on me for years to get on a preventative, and it’s only the last seven years or so that i’ve listened to him. it makes such a difference.”
insurance complications
having the right insurance to cover medication costs is a major concern for lorri bannister, who lives in cornwall, p.e.i. her insurance plans changed and went from covering 80 per cent to 50 per cent of her migraine prescription.
“i went with one less expensive one, also less effective for workdays, and to a combination of three drugs for the days i’m off, as they make me too sleepy, but they are more effective and way less money than the 50 per cent co-pay of ubrelyy,” she says.
bannister started being tested for migraines at age six.
“they were on and off throughout my younger years, then progressively got worse. in 2017, i had a total hysterectomy (unrelated), and i hoped that would help, but it didn’t. i do, however, take an aimovig needle once a month, topiramate daily, and botox every three months, which in combination decreased them from daily to 15 to 20 times per month,” she shares.
“the pain level has diminished; however, there are still days that i can not do anything. i now work overnights as my employer allows me to wear a hat as the compression around my head helps, and sometimes i need a little extra, so i tie a robe tie around it.”
bannister works as the overnight supervisor at a senior home but says her migraines have impacted her work and social life.
“my migraines have impacted my work and work relationships in the past. it can be a constant battle, as one of my main triggers is scents, and although i work in healthcare, and we are supposed to be scent-free, people don’t understand how debilitating they can be,” she says.
“a scent can set my work night off with a migraine, which for me can mean any one or combination of any or all of these symptoms: high blood pressure, vomiting, vision problems, aphasia, trouble concentrating, sinus congestion, and severe pain.”
lorri bannister suffers from chronic migraines, with scents being the major trigger.
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more education needed on scent triggers
bannister urges that more needs to be done to educate the public.
“i have family members who brush off the whole scent issue and continue to use it, no matter how many times i’ve explained how scents can trigger a migraine,” she says.
“there was a time when my migraines were affecting my mental health, partially due to frustration over so many of them (that hasn’t completely gone away) and people thinking they are just bad headaches because it can’t be that bad if i’m still coming in to work.
“well, if i didn’t go to work when i had a migraine, i wouldn’t have a job, so i learned how to manage and cope with the severe pain.”
there are days when bannister can’t leave her home or bed, and in some cases has sent her to the emergency department for intravenous (iv) migraine treatments.
“i do have the oral equivalent of those meds (iv), which i do take when i don’t have to work because it is an invisible illness,” she notes, while acknowledging she wears a mask in public and is mindful to drink plenty of fluids and eat regularly throughout the day to prevent an attack.
“but when i do get a migraine, it can last four to six hours if i get my ‘rescue meds’ into me right away. sometimes, however, they can last a couple of days, and often i have a hungover feeling afterwards for a day or two.”
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