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living with post-concussion syndrome: 'taking our own health back into our own hands is what's important'
what started as a typical drive home after her workday turned into an unexpected upset to nikki fraser's life as a mom and teacher
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nikki fraser (centre left) and her family: her post-concussions symptoms like painful migraine, fatigue and sensitivity to sounds and lights kept her from all the things she loves to do.
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this article was produced by the healthing editorial team with the support of a grant from aquaomega. while aquaomega made the production of this article possible, they did not have any editorial influence or control over the content, including review prior to publication.
what started as a typical drive home after her workday turned into an unexpected upset to her life as a mom and teacher. nikki fraser stopped at a red light when the car behind her crashed full force into the rear of her car.
“i did a bit of slamming my head against the steering wheel and bounced back a couple of times. and actually, in the moment, i thought it was quite minor. i got out of the car, chit-chatted, exchanged information, this and that,” says nikki, 41, who lives in london, ontario, with her husband and two children.
the next day, however, was a different story. she had a bad headache and felt completely off. three days later, she was like a “third child for my husband to take care of,” she says. this was in september 2020, when her kids were still quite young. she couldn’t handle sounds, lights or screens—and was holed up in the bedroom in silent darkness.
“my youngest at the time had that squeaky little child voice that is adorable when you’re not sick, but when you are living with a concussion, it would instantly put me into a migraine. so it was heartbreaking. that was the hardest thing for me, not being able to hear my child’s voice without crippling pain.”
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concussion: brain injury can have persistent effects
nikki had suffered a concussion, a brain injury that happens when force to your head or body causes your brain to bounce off the inside of your skull. this can be from a blow to the head or sudden change of motion—anything can happen with the trauma of a car crash, an unexpected slip or fall, or the sheer force of repeated head impacts in football. studies show that high school football players are at a higher risk of concussion than any other sport.
concussions start as a short-term energy deficit in the brain that disrupts normal function. most people, about 70 per cent, recover in four to six weeks.
but what about the other 30 per cent of people, which includes nikki?
they have what’s called post-concussion syndrome or persistent post-concussion symptoms (pcs) that can drag on for years, according to the mayo clinic, leaving them with challenges like trouble sleeping, memory and concentration problems, irritability, anxiety and depression. as well, there’s a host of physical symptoms of pcs, including headaches, dizziness, fatigue, neck pain and sensitivity to light and noise. experts say this isn’t because their brain hasn’t healed, it’s because of the ripple effects of the initial injury.
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“after i had my car accident, i couldn’t do anything. no household chores or usual daily living,” nikki recalls. “i wasn’t sleeping and everything just hurt, the head, the neck, my gut. everything just felt gross.”
she’s always been in tune with nature and connecting with the earth to feel grounded, so that’s exactly what she did to make herself feel a little better.
“it was fall, so i spent time lying on the ground outside. it was the only way i could get relief from my headaches. i would take a pillow and a blanket, and i would lie outside surrounded by leaves in the grass. and it was the only time that i wasn’t in excruciating pain.”
holistic approach to concussion treatment
nikki is also certified in holistic treatments and has a home-based business in aromatherapy, reflexology and reiki services, so she fully appreciates alternative ways to heal your body. she went to her family doctor, who recommended physiotherapy and plenty of rest in a dark room, which is what many doctors suggest to people, but it’s an outdated approach to pcs, nikki says.
“we need to slowly expand our window of tolerance.” she compares the experience to going to a cinema matinee in the summer. you’re in a dark room for a couple of hours watching the movie, then you come out in the middle of the day, and it’s so bright that it takes you a minute to adjust. “if you’ve been sitting in a dark room for three weeks, how much longer is it going to take you to adjust when you come back out into the sunlight? a lot longer,” she says. “you need to stay active.”
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her pcs happened during the pandemic, which made getting help to learn more about the condition and find health services like physiotherapy that much harder. what she did have was her own knowledge of holistic healthcare and determination to take her health into her own hands.
“i’m someone who’s not going to wait around. i don’t wait on western medicine. i don’t wait on insurance. i don’t wait to put my health in other people’s hands. i am the first person to look after my own health.”
finding a concussion treatment program
luckily, six weeks after the car accident, she found a program online that was in sync with her own way of thinking about health as addressing the whole person, both mind and body, with psychological and physical interventions. the concussion fix is a virtual program with multidisciplinary concussion experts that takes people through steps to heal and reset body systems that have become dysregulated by concussion.
nikki watched a webinar, signed up and went through four months of the program. within a month, her symptoms had improved. “i went from being completely useless to being able to do at least day-to-day activities with my kids and around my house within a month.”
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by the end of four months, she was back to her normal self, able to do the things she always enjoyed.
“my anxiety, just the mood management aspect, was huge.” the foundational pivot of the program is bringing the nervous system back into a regulated state so that you can start to build on your rehab with other therapies, including regulating hormones, sleep hygiene, mental health and nutrition. nikki is now the program community manager, helping promote peer support and interaction.
“it’s an invisible condition, it’s very isolating. with the broken leg, you see the cast, so you know the person’s still healing. this is invisible, so going out with ear protectors, sunglasses and a hat just to be able to survive going outside. people look at you like, ‘what’s wrong with you?’” she says of the lack of empathy and understanding that makes finding a community of people with pcs so important.
beyond the concussion program, she went for physiotherapy and chiropractic treatment. “my hips got so jarred in the car accident without me realizing it, that my one leg actually ended where my ankle was on my other leg,” she says of the issue that you could only see when she was lying down. once her body systems were regulated through the program steps, she was more receptive to functional exercises and manual adjustments.
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consistency is key in concussion recovery
when it comes to pcs, as the literature points out, there is no consensus on treatment protocol. emerging research, however, shows how collaborative interdisciplinary treatment guided by neuropsychology is effective.
she’s clearly an advocate for the holistic model. “we need to look at the whole person, because the mind and body work together … we’re not just a respiratory system. we’re not just a brain. we’re not just a circulatory system. we are a very complex puzzle.”
in fact, she still follows many of the practices she learned in the program, like green tea and a walk in the morning, breathing exercises when she feels anxious (which is especially helpful during the holidays) and daily mindfulness where she checks in with herself to see how she’s feeling with a self-body scan, flexing and releasing muscles. eating a clean diet with whole foods is also a constant in her life.
these are all simple fixes once you learn them, but aren’t always simple to do, so she understands the challenges for people. health is a journey for everyone.
concussion fix members range from teens to people in their 90s seeking help. some have lived months with pcs, but others have struggled with symptoms for 20 or 30 years. nikki got an email from a 90-year-old recently who wrote, “i’m only 90. i still have lots of life to live,” to which she responded, “absolutely, you do, and you don’t need to just survive and deal with it because you’re 90. there are still things you can do.”
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she knows first-hand that putting in the work leads to recovery.
“it doesn’t matter if you’re six weeks post-concussion or 30 years post-concussion. there are strategies that you can do at home to help bring your mind and body back into balance,” she says. “taking our own health back into our own hands is what’s important.”
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