START HERE: Living with Post Concussion Syndrome
If you’ve found yourself here, then you are probably almost desperate to find a solution to your post concussion syndrome and my heart goes out to you. Either that or you are passionate about your brain health. Either way, I believe I can help. But first, let’s back up a little.
Life with post concussion syndrome is bewildering, confusing, and painful in endless ways. Because for a small percentage of those of us who sustain a concussion, it doesn’t go away: we have to adapt to it over time and take small steps to heal. Research shows that 5 - 30% of people who experience a concussion will develop persistent post concussion syndrome.
The incapacitating headaches, personality shifts, and loss of identity can make you feel like your former self and your former life have been stripped away from you. And because brain injuries and concussions are so poorly understood, the experience can be deeply isolating. In fact, this isolation is the main challenge of life after any brain injury. You are not alone.
TBI survivors are a growing global community
By 2031, traumatic brain injury (TBI) is expected to be among the most common neurological conditions affecting Canadians, along with Alzheimer’s disease and other dementias, and epilepsy. Traumatic brain injury (TBI) is a leading cause of disability globally. In Canada, one person sustains a brain injury every 3 minutes. One in 3 people who have experienced one brain injury go on to have another, further complicating matters.
One-third of individuals with a TBI are women and TBI is particularly common early in the reproductive years (15-24 years), with intimate partner violence and accidents being major causes. Women with TBI are more likely than men to experience mental health problems post-injury. Symptoms appear days, weeks, months, or even years later.
And did you know that the World Health Organization considers even a single concussion to be a chronic disease, because of the evolving neurological consequences?
We are getting better and better at identifying concussion early and knowing how to support the long healing process that some folks endure.
Top tips for living with post-concussion syndrome
Here are my top tips for making your life with post concussion syndrome easier. They fall into 4 categories: Self, Family, Friends, and Work.
Self
The bottom line is you have to take care of yourself first. This means:
Rest when you need to. If your symptoms are flaring up, try a Total Sensory Deprivation Nap for 20 or 90 minutes. Close the blinds, turn on the white noise, over your head, lay a weighted blanket over your body. Even if you can’t sleep, remember that closing your eyes to be with your breath is healing. Don’t feel guilty about resting.
Practice some yoga every day if you can: this can simply be sitting quietly and breathing for a moment or a physical practice depending what you are up for.
Learn how to self assess when your battery gets low before it dies - this is the basis of all your self care.
Learn how to advocate for yourself and your disability. Get comfortable using phrases like “I have had a couple of brain injuries and my cognitive abilities are not what they used to be. I will need to take notes. Can you slow down and pause every sentence or two?” You may have to remind others that your injury has not gone away and you are healing slowly.
Family
People you live with, loved ones, partners, and family can have a really hard time with post concussion syndrome. Concussion happens to the whole family. That means that everyone in the home is affected in different ways.
Let the people you live with know that sleep is probably the most important part of your healing process. If you need some quiet time to lie down and close your eyes, inform them of what this means and how they can help by watching little ones or keeping noise to a minimum for a couple hours. That will help you rest undisturbed.
You might find that existing tensions with your family become heightened. One of the hardest aspects of post concussion syndrome is the emotional aspect. Try to remember that your feelings may be outsized for any given situation. This is because your brain goes much more easily into a Fight or Flight state than it did before which can translate as moodiness and fight-picking with loved ones.
Accept that these relationships might shift especially as your loved ones have their own experience of your post concussion syndrome. Selfish behaviour on the part of the survivor is a known and normal hallmark of brain injury. It can become harder to keep a big picture view when you are in constant pain. Your family may find it hard to see you suffering and/or they may find your behaviour challenging. Actively practice empathy for those closest to you.
Friends
Because of the uniquely isolating nature of the impairment, friendships can be tricky.
Form yourself a Circle of Friends - people you trust to adapt to your symptoms. Be honest with them about what’s going on, how you are really feeling, and let them know what triggers your symptoms. For example if busy environments with lots of background noise are challenging, ask them to meet one-on-one in a quiet place to catch up instead of a café.
Stay in touch when you can with those who do support you. Isolation from your community is a serious social side effect of all brain injuries and can lead to other mental health challenges.
Be prepared to lose some friends if you sustain a long-lasting concussion or experience post concussion syndrome. Unfortunately the reality is that some people will not understand or relate to what you are going through. Combined with your own need to sometimes shut out the world to heal, connections with some friends might not be strong enough to last. It’s not your fault.
Connect with others like yourself who really understand the larger implications. Talking with a fellow brain injury survivor can be life-giving if you are feeling lost in the healing journey.
Work
Returning to work can be incredibly challenging for so many reasons. Familiarize yourself with those reasons and your own accommodations needs. That way you can talk honestly and openly with the people at work who need to know you are struggling:
Mild brain injury, concussion, and post concussion syndrome are hidden injuries, which make them harder to empathize with and fully appreciate.
Symptoms can develop days, weeks, months, years later which makes this health situation super challenging for Insurance Providers, Human Resources Departments, and supervisors to understand. You may be asked frustrating questions like “Why can’t you come back right away? How long is it going to take? Why aren’t you better yet?”
Symptoms are hard for people with post concussion syndrome to track, quantify, and explain because they are unpredictable and fluctuate over time.
A concussed or post concussion brain can be quite dramatic and unreliable when responding to new information and challenges. This means it could take you a long time to pivot when faced with important information. Or that you might find it hard to understand why something has changed at work and move on to accept it.
Post concussion syndrome is not well understood by the general public (autism for example is much more commonly appreciated as a neurodivergent experience) meaning that you may have to repeatedly explain your situation to people, which is exhausting.
Remember you are on a healing journey. Research shows that people who have experienced a brain injury have the most success in getting better if they accept the changes in their life with an open heart. If my advice resonates, you can benefit from joining my next live course, Yoga for Concussions, designed by brain injury survivors for people like yourself.
This self directed course brings together yogic practices of movement, breath, and meditation along with new pain research, the latest strength and mobility training, and best practices in yoga for Traumatic Brain Injury (TBI) and concussion. The pace, format, and tone of this course is especially designed for people with mild brain injuries, those living with Post Concussion Syndrome, and people who struggle with anxiety and mood swings related to brain injury and/or concussion. The yoga includes slow and steady poses, meditation, and breathing practices proven to support brain wellbeing. How you participate is entirely up to you based on how you are feeling.Yoga for Concussions is designed to support your healing at any stage.