By Abigail Mclellan
As someone dealing with Post Concussion Syndrome, and a student of Cognitive Science, I was very impressed by a recent lecture on pain given by Dr. Jeffrey Mogil. It appears that the paradigms used by pain researchers have not been applied or adapted to Post Concussion care, nor have pain researchers considered Post Concussion Syndrome as a case of chronic pain.
What makes post concussion pain so unusual under the pain paradigms is that it is a case of chronic pain that appears to be evoked pain, since it correlates with certain activities. Typically, chronic pain is thought to be spontaneous, that is, not correlated with a particular activity. This contrasts acute pain, which warns of a danger to quickly avoid, or tonic pain (days, weeks or a few months) which suggests rest and immobility of the pained area, to optimize healing. In contrast, chronic pain is considered spontaneous because the pain seems to persist after its cause is no longer there (like phantom limbs continuing to hurt). In the cases where the cause does persist (like in cancer pain) researchers wonder if the pain might promote general caution, which might keep the individual away from dangerous situations considering their compromised health. It certainly directs them to a healthcare professional, which hopefully increases their chance of recovery.
In all cases, pain acts as a clue that something is wrong. What makes chronic pain so strange is that often, the only thing that is wrong seems to be that the person is experiencing pain. This has been a breakthrough in thinking because it allows both the patient and the doctor to only worry about the problem of pain itself. But when something more is going on, it is important to use the bodies clue to explore underlying issues. Pain from inflammation might be caused by the food someone eats, which means that any other method of mitigating that pain would leave the underlying inflammation a serious health problem.
When evoked pain is correlated to an activity, the message is clear to avoid the activity. This works so well in the case of the broken arm. Any movement causing pain is avoided. However, with inflammatory pain evoked by food, it might feel spontaneous. This is because the pain does not occur immediately after eating the food, and it becomes a challenge to sift between many possible causes. Pain may feel spontaneous on the surface before we understand what is evoking it. How many types of evoked pain might we be missing?
I would argue that Post Concussion Syndrome is a case of chronic pain that is evoked. This means that the pain occurs when the individual does certain activities, and stops when they stop doing the activity. Like in the tonic case, this can be useful to prevent the individual from overdoing themselves. The problem is that the pain might be correlated with doing most of the things that provide meaning in life: music, socialization, exercise, reading, playing games, and thinking deeply. New research agrees that doing nothing all day in a dark room does not promote recovery. The problem is that when the sensation of pain is so strongly correlated to the level of activity, even low levels of pain stop activity. In my case, it's not necessarily the intensity of post concussion pain that makes it debilitating, it is the fact that it pops up whenever I start to do something. That, and its direct association to the times when I can't think and feel myself slowing down.
Like with a food sensitivity, the evoked pain of Post Concussion Syndrome does not always arrive immediately after a provoking event. Instead, it might take a few hours to kick in. This makes it hard to directly pinpoint which activities are more problematic. In addition, it seems to be cumulative, so that something that is usually not a problem or even energizing can provoke pain on a low day. This cumulative effect can often cause unpredictable crashes when looking at the last day. It is only in looking at the last few weeks that levels of pain and fatigue make more sense. For these reasons, the evoked pain can be even more frustrating, because it is not easy to get a grasp on. It is much more complicated than keeping an arm still.
At its most extreme level, a concussion effects almost every voluntary behaviour. When teaching children, I explain that the first step to recovery is No Activity. When asked what they can still do, we list sleep and eating as the two safe bets, though sleep disturbances and nausea may make even these activities difficult. We tell the kids to stay in this stage until they have no symptoms, and then slowly to progress up to Some Activity, More Activity until Back To Normal. We stress that at the sign of any symptom, they should return to No Activity. The underlying message to this procedure is clear: activity provokes symptoms. Evoked pain.
This procedure for an injury to the brain is along the same lines as one you would advice for an injury to the arm, with one key difference. Behaviour involving the arm is localized, behaviour involving the brain is pretty much all behaviour. Most people are pretty bad at doing nothing, which makes it essential that this advice is given in a way that increases its chance of being listened to. Doing nothing might look different for different people. Anxiety can be a huge energy drain, and crying all day can cause a headache worse than the concussion. This makes concussion protocol a difficult balancing act. The key message is to rest, the hard question is what does that look like?
90% of concussions resolve in 6-8 weeks. The numbers might change but the message we tell children is clear. Concussion recovery happens. Good rest promotes quicker recoveries. And most importantly, we stress that the rest in the beginning is the most effective: three weeks of rest right away saves the months or years needed when initial rest isn’t taken. This is where concussions become chronic: the initial healing didn’t fully happen and now conventional advice to rest becomes problematic.
But doing no activity for months and years cannot be healthy, and is in fact depressing and isolating. Something else is needed.
What is going on in this post concussion situation? Symptoms have persisted into the chronic stage, and seem to be evoked by a variety of behaviours. Some people get headaches and fatigue when they read, others get dizzy and nauseous from exercise. Individuals suffering from post concussion syndrome tend to adapt their lifestyle to avoid overly provoking symptoms. We demonstrate avoidance behaviour, the common response to pain. But when the thing we are trying to avoid is our entire life, full of its various pleasures, it becomes a delicate balancing act.
If the goal is to prevent pain from restricting one’s lifestyle, this goal must look to the future. A painkiller does not work if it allows me to push myself for one day to the point of fatigue which requires a week to recover. Likewise, developing high pain tolerance in the face of symptoms contradicts this goal if it provokes an increase in neurodegeneration and associated symptoms in the long run. What makes this question so urgent is that the opposite could very well be true. Avoiding pain could very well be the cause of neurodegneration, if the situation is comparable to the pain required to re-strengthen hurt muscles. If injured cognitive functions require targeted activity to recover, pain associated with this activity is part of recovering. Leaving the vestibular, visual, processing, and language systems unhealed does not seem good for long term brain health. If pain goes along with the recovery of these types of systems, it is not a bad thing.
This is the paradigm I have been living under for five years. To recover a deficit, I must work on this deficit. Sub-symptom threshold training would be ideal. This is when the activity is below the level that provokes symptoms. However, this is a challenge in practice when many things provoke symptoms, and fatigue is not compartmentalized. Once one thing tires me, my tolerance for other activity drops. Playing music usually helps me regain my energy, but if I am tired enough, the situation flips and it to provokes symptoms. So I can’t measure a standard sub-threshold activity's length and intensity and simply keep in that range. I have to use the symptoms themselves as a clue that I need to rest. Masking the pain that is a common symptom tends to lead to a bigger more debilitating crash later. For example, working out is healthy, but not if muscles need 3 weeks of recovery time after each session. The muscles would lose all the strength they had just gained, during that resulting inactivity. This idea is supported by concepts like the Parkwood Pacing Program. They advise avoiding cycles of high activity and subsequent low periods, and instead slowly building up strength in small increments. Extreme symptoms do not mean that further harm is occurring, but they may slow down recovery.
This concept helped my healing because it allowed a balance between still pushing, but not feeling guilt in the cases when I push to hard. Guilt insidiously turns healthy activities unhealthy, so a framework to understand pain in a positive light is important. Attitude can make the same activity stressful and energy draining, or exciting, tiring but motivating.
This is the reality when it comes to thinking about recovery. This framework has allowed me to balance the desire to avoid pain with the joy I get from certain activities that cause this pain. It means accepting pain as part of the road to recovery. No research can change this. What can change is the upper and lower limits. How much pain is too much? How much rest is too much? With many lifestyle aspects we don’t have a choice, we must learn to cope. But for other activities we do have a choice. We don’t have to take long drives, or go to loud concerts, or study at university. Certainly contact sports or military service push the limits of Post Concussion Syndrome. Activities with a high risk of re-injury should be avoided. But beyond that, the line is not clear. In the short term I might have less symptoms when I am not in school, but in the long term, school work might be the very activity that stimulates healing. More generally, what activities stimulate healing and which increase the likelihood of neurodegeneration? And by how much? The problem is, we don’t have an answer to this, so lifestyle decisions are difficult to make.
How has pain limited my lifestyle the past 5 years? Big crashes limit my lifestyle, as does chronic fatigue. But the constant presence of pain can actually enhance my lifestyle if it is used as a clue to predict fatigue. It might be the very thing that lets me maximize the limited energy that I do have.
In my lecture last week, I learnt that pain is an unpleasant sensory or emotional experience associated with actual or potential tissue damage, or described in terms of such damage. In all cases, pain feels like cell damage, but is not always. Knowing the difference is huge. It makes me wonder, if one day research will show that the pain evoked by my lifestyles does indeed cause tissue damage. Somehow, I think not. Despite living in a materialistic age, I know that I can’t grasp at immortality, and must live this life now, in these moments. I try to live a healthy life so that I can do the things I love, not to prevent me from doing these things. It would be for nothing if I spent my entire life not living, just to die with a healthy body.
April 5th 2013 is a date that has stuck with me. It's funny when doctors ask if you remember the exact date. Do you remember the date that changed your life? Um yes, I do. Duh. So April 5th 2013 means that tomorrow marks 3 years of my slow and steady concussion recovery. What was I doing three years ago today? I remember running up Mount Royale at night, enjoying the warmth of spring. Ask me that question tomorrow night and I'll tell a different story. One of an elbow in the face and a visit to emerge. The four weeks that followed were a whirlwind of studying for exams despite headaches. Pushing through pain was something I had learnt. Most of the time that drive helps me succeed. Those weeks, it was probably the factor that delayed my recovery weeks and ultimately years.
It's not only bad days that stick with us. My concussion recovery has some good days that will forever stand out. The semester following my concussion I was still in pretty bad shape. I was only taking one course. My days consisted of small achievements. Going to the grocery store. Having a conversation with out getting tired. Yet that semester had a special day. I was not the date (some Friday in October) that I remember. It was the things I did. I met a new friend and took the metro to visit La Rouche Art Hive. From there, I visited an old friend who had just moved to Montreal. On my way home that night I stopped by the Yellow Door CoffeeHouse for the first time. These might seem like small things, but let me tell you, for me, it was huge! That night, I went to bed full of energy and inspiration.
In concussion recovery progress can go slow. In can be marked in months and years. Thinking about the days can get you down. If it takes years to mark progress, that is ok. 2 years ago, I was in two classes. 1 year ago I tried to take 4 courses, and ended up having to drop 2 of them. This year, I am in three classes and keeping up with everything. For the first two years I couldn't run. Now I go for jogs and don't get any symptoms.
While I am slowly building up my endurance, I am not trying to return to how I was before. 3 years ago, I played trumpet in a symphonic band, but I didn't know how to play guitar or sing. I loved art, but rarely took out my paint brush. I had a passion for reading, but rarely the time to open a book. Today, I combine these creative activities with the my academic interests and passion for the outdoors. Going back to who I was before would not include these positive changes.
I've come so far these three years. I've learnt not to define myself by the things I do, for those can be lost. Instead I am what I think and who I love. What I think changes, but I will always be thinking, always be loving. My passion for truth will continue to drive me through the highs and lows.
These past three years have had their fare share of pain. I've gone to sleep crying in pain and frustration, unable to complete what should have been an easy assignment. I've felt lost, trying to think, and realizing that even that has been temporarily stolen. But, as a wise friend told me, suffering is an essential part of the human experience. I cannot regret that suffering, for it is a part of being human. I will put my energy into life. Sometimes, this causes pain, but more often, I am satisfied by what I achieve and learn.
So, on my third anniversary of concussion, I have decided to celebrate. I celebrate the health I do have, and the recovery I am every day making. I celebrate all the joy and love in my life.
Often I fear thinking about getting better. A part of me desperately wants to get better, and I am wary to let that part out, lest I am disappointed. Yet today I am optimistic. Today I will say, concussion GO AWAY! I am going to celebrate my 3 year anniversary with a nice run up Mount Royale tomorrow night.
I received a concussion April 2013 playing basketball at a McGill Rez War event. I didn't get the chance to rest, instead writing 4 exams, and found myself helplessly upside down once summer hit. I canceled all my summer plans, and ended up returning to school in the fall for one class. Recovery has been slow but curiously rewarding.
What's In A Name?
The English language, for the most part, is equipped with a word for just about any feeling, apart from long vague concept like the German schadenfreude, which is the guilty pleasure experienced when something bad happens to someone you are friends with, but also jealous of. Even those few missing words seem easily navigable by employing a sentence to describe them, as I just did.
The first time I stumbled upon a concept I couldn't properly communicate through words happened when I received a concussion playing basketball.
I have found such a concept that has given me much grief in describing. Perhaps that is due to my concussion itself, which at times blurs my thinking, but I think it is more profoundly related to my concussion, because this concept is actually my main concussion symptom. No past medical experience has given me the vocabulary to describe it, because it is specific to my head injury. I guess the list of concussion symptoms is made by doctors and medial professionals, not the ones with concussions. Perhaps they never realized to ask about something more, something that was not on their list. It could also be that I experience a symptom unique to myself, just as my entire concussion journey was unique. None the less, I am going to try my best to communicate what relatable experiences I have had.
I am going to try my very hardest to use, not just a sentence, but many paragraphs, to describe a symptom that I hope will, in years to come, have its own unique name and its own unique scientific understanding and medical treatment associated with it.
As I started seeing doctors, I found myself bombarded with a list of symptoms I was supposed to identify with. Dizziness, fogginess, fatigue, headaches, pressure in the head… The list went on and not once did I feel confident in the identification of my true symptom. It was not that they are wrong, all of them have been felt at various times in my experience. However, I knew that they were not exactly right. They all described things I have experiences before my concussion, and a concussion was something entirely different, much more than frequent headaches and fatigue. If you asked for a lime and I have you a lemon, you'd most likely manage. Yet you would notice a difference. Its is this level of difference that leaves me feeling uncomfortable that my concussion cannot be described. I am a girl, equipped with a lemon, trying to convey the taste of a lime.
To start let me say that if you mixed a light headache, a bit of dizziness and fatigue, and maybe a pinch of pressure together in a fog and then poured that into you head after running in the wind and sun all day long, you probably would have a good starting point for understanding a concussion. For simplicities sake, one could just say headache and be done with it. But I think the uniqueness of this hard to grasp symptom is worth dwelling on, in order to address the uniqueness of concussions themselves. Where a concussion varies significantly from a headache is that it is not exactly the pain that makes it debilitating. It is more like it is actually debilitation itself, an internal protest to continuing the activity at hand. Sometimes I find it causes my speech to slur, as if by slurring my words and keeping my mouth from opening fully, I fool my brain into thinking I am not actually talking. When this happens, I become overwhelmed by an internal cringe and usually disengage from whatever activity I am involved in. And here is what truly sets it apart form a normal headache. In most cases, (exempt the most extreme), ten minutes of meditation and silence result in a decrease in symptoms. This "headache" I experience is acutely responsive to my activities. If you got zapped and random, you would keep active. But if you got zapped in direct correlation to your activity, you would stop that activity. But what about when that activity is life? My closest relatable relatable experience is not actually a headache, but the removal of my wisdom teeth. For a week or two after I had them out, I complained not exactly of pain, but more of an inability to truly open my mouth, as if elastic bands held my teeth together. Maybe what I am trying to convey is that despite the pain, it is not always the pain that is the main symptom. My head hurts, but more significantly, it resists. This often leaves me grappling to communicate to my friends ideas that are clear in my head, but 'resist' expression. The mental work of putting them to words is to much.
As I heal, I find this problem decreases, yet its often in the back of my head, a slight buzz, and I know its still here. But what is scariest of all is when I don't notice it, and it seems as if the concussion has become a part of who I am. To realize that this state of decreased health has become my new reality.
Now I know finding a word for this symptom will not help convey a priori what a concussion feels like anymore than spinning in circles can emulate alcoholic intoxication. But if what I describe is not specific to me, if it rings a bell to other people with head injuries, then finding a word for it may make people suffering understand that they are not alone, and facilitate communication for a brain that is struggling to do all the things it once took for granted.
Here are the stories shared by our community about their own personal take on the concussion crisis!