It's A Hard Knock Life

There has been a great deal of attention in the media regarding Post Concussion Syndrome, although for decades, it is not something which has gone unnoticed within the medical field.  It has eluded doctors and researchers for years, and continues to do so currently. Post Concussion Syndrome (PCS) is an important subject matter to me, for more reasons than the impact on mental health. I've decided to share my story, to raise awareness and possibly help others who may have or know someone with PCS.

In 2007, I suffered a closed head injury.  I was on a long board, which for those who do not know, is a very fast skateboard designed for just that, going fast.  Without helmet, my head hit pavement at approximately 35-40 m.p.h.  I lost consciousness and came to about 100 feet from the spot I wrecked.  There was no CT done, no MRI, and I absently attempted to carry on with my daily routines.  Or so I thought.

The first month I don't recall much at all. I have about three blurry snapshots. In the initial two weeks, standing for more than a few minutes resulted in nausea. I operated without awareness or understanding of why or what I was doing.  In the wreck, I also separated my shoulder, tearing through all three ligaments attached to the clavicle. Because of this injury, I also was taking pain medication, though sporadically.

Post-surgery for my shoulder, the next nine months was a test of courage, perseverance, and the most painful months in my life. I'm no stranger to injury. I was the child for whom you paid your insurance deductible on January 1st, because you WILL use it. My days as an athlete brought torn ligaments, displaced joints, and numerous other mishaps.

However, well off pain pills, the migraines emerged.  Everyday. My mood was unstable, and from what I've been told, my speech was, interesting.  I would begin talking, abruptly stop, and then either be dumbfounded for my thought or unaware that I had stopped speaking at all.  I was briefly in a relationship, and would ask my partner for a head massage daily. I am not a high maintenance person, so this was not an attempt to be pampered religiously. It was, at the time, the only comfort for the migraines.  Yet it barely took the edge off.  My heartbeat would pound in my head every night, and eleven to twelve hours of daily sleep was never enough. Impulsiveness, anger, crying, dizzy spells, headaches, apathy. Knowing what I know now, this is well within the norm for PCS.  Back then, I was a mess.

I began working with a doctor who was as uncertain of a treatment as I was.  For the next year, I was essentially her guinea pig.  We tested medications, researched through medical journals, and finally came to a conclusion of PCS.  This was a relief of sorts, yet terrifying.  Dementia, Alzheimer's, Parkinson's were splattered everywhere in medical literature. The sobering news of all was my realization that the symptoms of PCS, if lasting more than a year, were most likely permanent. At this point, I was heading into my eighteenth month.

My first attempts to get back into routine were clumsy and embarrassing. Social anxiety plagued me. My moods were still erratic. I began to understand my tolerance, or lack thereof, for noise and light. The light from a desk lamp was manageable.  My actions continued to be impulsive.  The headaches were a constant, yet dampened by medication.  For a brief time, I was happy in every aspect of my life, yet I had suicidal tendencies. This was bigger than "normal" depression or anxiety, I didn't want to end my life, but my moods were uncontrollable. The trigger, I learned, was stress.

When you have PCS, stress is your worst enemy. Alcohol ranks right up there as well.  Driving and talking on a phone, unbearable. Two people talking in the same room, overwhelming. Being interrupted in normal conversation, nerve-racking.  Needless to say, the smallest tasks I had taken for granted were sources of stress. You can only imagine what a "normal" stress could cause.

 Fortunately, my doctor found medications that keep my headaches to a minimum. I began to learn my limitations, which was a battle in itself. I do not LIKE limitations! My doctor provided the perfect analogy. My brain used to run like a Mac, now its more like an Apple IIe.

Five years later, I still have a daily low-grade headache. I would like to put my PCS in the past, but it's impossible. It is taxing, and is WORK.  Everyday I work on managing symptoms. Avoiding multi-tasking, pushing through lack of motivation, and thinking through every conversation. Words don't come easy anymore, I have to search for the next one to come out of my mouth. Happiness was once intrinsic, but now I work to get through the haze that is a part of my life. It is not a depression. It is a continuous process of reminding myself to display my genuine joy and happiness when my headaches and cognitive struggles stifle my reactions. An ex partner thought it was she that made me unhappy. No, the work involved to show my happiness gets exhausting.

However, I keep fighting.  There is always another potential solution, my latest grasp for straws involves treatment through a Chinese herbalist. Sure, I'll drink tea that tastes like, what I only imagine, is urine mixed with mulch. If it works, it's worth it. Although my recollection is fuzzy, I haven't forgotten what I was before the injury. Support is necessary. My biggest obstacle to overcome is acceptance. To face the difficulties and accept what comes with PCS. Understanding my injury is not visible to those around me, or those who care about me. Accepting the burden that I will be the one to make adjustments.  Most importantly, I have become vocal and a self-advocate for my injury.

With this being said, there are thousands of people whose symptoms are similar or far more debilitating. There are children and adults who will end up with PCS, who will need support. As a therapist, my job challenges me. But having PCS provides me with greater insight and awareness for myself and clients.
Here are some steps to take if someone you know has a head injury, even a minor one.

• Have a baseline assessment. The Rivermead Post Concussion Questionnaire  and the Standardized Assessment of Concussion are free on the internet. Establishing what is "normal" is key to determining changes. I have attached links to the questionnaires, and can be used before injury, immediately following injury, 24 hours post injury, and then 30 and 60/90 days post injury. 

• Ask for an MRI. This can rule out bleeding and second impact syndrome. A clean MRI does not guarantee a problem-free future though. This is the enigma of PCS.  

• Rest. Keep brain activity to a minimum. Even if a person can do daily activity, the brain needs to heal, immediately. 

• Seek support. Friends, family, a therapist, and/or online groups. It is critical to ask for assistance. I've provided links for associations and groups here too. 

• Be selective with doctors and professionals. There are those who believe PCS is imagined or an attempt to seek compensation (pending lawsuits). Find a physician who is supportive and understanding of your various symptoms and needs. 

• Seek information. Medical journals are chock full of studies relating to PCS or head injury. Heed my warning: There is disheartening and scary information to be found. Again, ask a friend to help and be aware of the stress involved in this task. 

• Never give up. There is hope for those with PCS. The spotlight on brain injury and concussions in the media has ignited the medical field, and will result in awareness, funding, and research on PCS.  

Fortunately, only a slim minority of those with post concussive symptoms will develop chronic or prolonged PCS such as myself. We are discovering the effects of concussions everyday, and I believe there will be a protocol or standard of care to emerge to reduce the likelihood of lasting damage.  The human body is resilient. If neuro-pathways are damaged, the brain will create new ones.  It may be a slow process, as i compare it to hacking through a jungle with a machete to create a walkway instead of following the trail.   I have shared my experience with others, but this was not always the case. I felt ashamed, weak, and terrified of ensuing judgment.  I made the decision to share my story, because it may help others and is a part of me.  I realized it is my strength that has brought me to this point, not a weakness.  With this comes greater control, acceptance, and hope. With this, I can be myself and discuss my injury freely.  Usually, this includes a sense of humor, as I am not afraid to poke fun at myself.  And laughter really can be the best medicine.


Links:

Rivermead Post Concussion Questionnaire 

Standardized Assessment for Concussion

Brain Injury Association of America

NeuroTalk Support Group

PCS/PPCS Facebook Support Group