In part 1 of this series I explained what happened the night of my accident, some symptoms I noticed, and frustrations I had concerning my functionality post-concussion. In this post I want to provide a more detailed list of the symptoms I experienced, describe what life was like with them, and describe some of the treatment I received.
After a couple weeks of having a concussion I had accumulated many symptoms. I experienced:
Visual impairments: problems with tracking, fixation, reading, and light sensitivity.
Dysautonomia: easily startled and issues calming down after being startled, problems breathing–I couldn’t stop thinking about my breathing at times and got out of breath after saying only a few sentences, anxiety, and gastrointestinal issues, muscle tightness–especially in my neck.
Insomnia: I could only sleep 5-6 hours a night, took a long time to fall asleep, and woke up during the night.
Muscle spasms: mainly in my neck, but they occurred all over my body
Cognitive issues: severe brain fog, memory issues, concentration issues, and word retrieval issues.
Fatigue
Noise sensitivity
Depression
Exercise intolerance
These symptoms were constant and only got worse the harder I tried.
There was also the matter of overstimulation. If you don’t know what overstimulation is, it is when your brain receives more sensory input than it can process so your energy spikes, then crashes and it leaves you feeling exhausted with exacerbated symptoms. This happened to me within five minutes of waking up and happened several times throughout the day. It is an exhausting way to live. It also left me questioning whether I really had a concussion in the energy spikes and discouraged in the crashes.
Later, after six months of having this injury, I developed tinnitus and speech issues.
My main symptoms were brain fog and vision issues. Incredibly, I didn’t develop headaches as a continual symptom. I had only a few headaches over the period of time I had a concussion.
Life was a living hell with these symptoms. I couldn’t enjoy the activities I normally enjoyed like reading and running, and couldn’t even do the things that I did to rejuvenate myself when I was tired like watching a movie or YouTube because even those simple activities were exhausting and left me with severe brain fog and anxiety about what was going on in my brain.
I felt very angry and felt that it was a great injustice that I had to go through this. I thought that God was trying to teach me a lesson in patience or compassion, so I made sure to learn my lesson real quick so that God could heal me from my injury since I had the faith for him to do so. Passing months proved that God was not healing me from my injury as I had hoped.
I was also ashamed to be going through this. Why, when thousands of people are healed from concussions every year was I left to suffer on my own? I felt shame when I had to tell my parents to finally take me to the doctor two months later since I wasn’t healing.
One quick recommendation I have for anyone suffering from a concussion is to go to the doctor or emergency room as soon as possible after you are injured.
The doctors appointment left me feeling misunderstood and in tears. The doctor had simply asked me a few questions, diagnosed me with a concussion, and referred me to a sports medicine doctor, leaving me uneducated about my condition and unsure of what to do next. Didn’t the doctor see the severity of what I was dealing with? Couldn’t he see the pain and suffering I handled every day? I had expected some empathy and some answers and got neither.
When I left the doctor’s office crying my mom asked me in an indignant tone why I was crying and I told her that it was a big deal to have a concussion. She assured me that we would figure it out and not stop until we had. It gave me a little bit of comfort, but I still felt alone and broken. My life had seemed to have stopped while the world had kept going and I didn’t know what to do.
The only thing I could figure to do was keep going which in hindsight was not the best idea. I should have focused on getting treatment instead of work and school. Alas, I obtained a job working at a produce stand for the summer after high school. The customers probably just thought I was exhausted when they saw me mess up multiple times, or not understand what they were saying to me. I did my best, but most days I was overstimulated to the point of not knowing for a few seconds whether a red light meant stop or go. Luckily I always figured it out in time, but the consequences could have been disastrous.
I spent my days organizing corn, dealing with angry customers, and lifting watermelons. Even without a brain injury someone working this job would end the ten hour shift being exhausted. I felt like I was yanking my brain on the end of a leash along with me. I also felt trapped in my own body, and that if my brain could just cooperate for a few seconds I could find freedom.
Soon, I went to the sports medicine doctor that I had been referred to and he referred me to a brain injury clinic that finally gave me some education on my concussion and also gave me some much needed hope.
Beginning treatment there was a blessing because at least I was working on healing. Unfortunately, the treatment was minimally effective and only lasted a month because I had to move away to college. Although I continued doing the treatment exercises on my own for a few months, they were still minimally effective for my severity of concussion.
The treatment consisted of physical activity, cognitive activity, and rest. The physical activity was often cardio intervals and the cognitive activity included things like sentence unscrambling, balance work, and puzzle solving. These were recommended to be followed by ten minutes of rest.
The also taught me about the science of concussions. They said that brains had pathways built up from use that were like highways, and when you got a concussion those highways got broken and the “traffic” in your brain got all clogged up which caused your brain to use less efficient pathways which caused the symptoms.
Goal of treatment was to use the brain a little bit at a time before many symptoms got going, and doing that built up the broken pathways in the brain and restored blood flow to those areas.
Moving forward to college time, I moved out to college, met my new roommates, and started a new life. I don’t know what I had expected for my first semester of college, but it definitely wasn’t dealing with a concussion while trying to learn to live on my own and navigate freshman college life. It felt too busy and overwhelming.
One thing I dealt with during my concussion was feeling like my brain had to refresh (like with a computer) itself every five to ten seconds. I dealt with this in class, taking it in five to ten second intervals. Every interval I had to remind myself to keep going.
I had a hard time reading the professor’s powerpoints and reading my notes. It was also such a struggle to concentrate in class amidst all the brain fog, fatigue, and overstimulation.
I would come home and either crash on my bed or struggle through some homework where I could barely read what was written in the readings and could barely comprehend it even if my visual reading skills had been working.
Next I would attempt to do some treatment exercises and be my own doctor. This usually led to me having a daily existential crisis of why I was even in college and I would grapple with my injured brain, trying to find something in there that felt normal or a little bit better. The exercises didn’t seem to be helping.
Aside from that I still made some great friends that semester of college. The awkward part? I never told them that I had a concussion. It felt too heavy to bring up to them, and I barely understood why I was in college with a concussion, I couldn’t tell them why I was here if they asked, so I never brought it up.
After three months of this I went home for Christmas Break. It was a blessed time off of school, but I had nothing but time to face my debilitating symptoms and I felt more depressed than I ever had been.
Christmas break was coming to a close and facing another semester of school felt like too much for me. It was one day that I had a raging panic attack with hyperventilation while thinking about going back to school that I decided I just couldn’t and it was time to get more help.
On the day I was supposed to start Spring classes I went back to the aforementioned concussion clinic and I was diagnosed with Post-Concussion Syndrome, the diagnoses that people receive when a concussion lasts more than three months. I was referred to a more intensive clinic that I had to wait five weeks for, and received treatment at the less intensive clinic in the meantime.
Those five weeks were some of the longest weeks of my life.
There was a lot of time spent sitting on the couch and staring at the wall. Sometimes I stared at the wall for two hours straight. I would try to not get overstimulated if possible throughout the day which meant taking breaks every time I started to get a lot of extra symptoms, but sometimes I felt like they didn’t do anything and that I got overstimulated just staring at a wall, which is quite severe.
I also hated driving in the car so I didn’t really go anywhere. I had this “fun” symptom where if I got jostled or bumped my head a little bit I would feel a rise in symptoms, as if I had gotten another concussion, even though the bump or jostling would be too soft to have caused an injury. This gave me an intense fear of riding in the car, jumping, sports, hugs, or sometimes, in my worst times, even walking. I got into the habit of walking as lightly as I could and reveled at how I had even walked normally before my injury. I must have been so tough, I thought.
I remember one day I was listening to a talk from the General Conference of the Church of Jesus Christ of Latter-Day Saints and I think it was on something along the lines of faith without works is dead. I felt so much despair when I heard that talk that I couldn’t finish it, which is not normal for me. Usually those talks are inspiring and uplifting for me. I thought, how was I supposed to have good works when I can’t go five minutes without getting overstimulated? I needed the blessings that came from performing good works, but couldn’t carry any out. I felt for a moment like I had been spiritually check mated, that I had been put in a position where I couldn’t receive blessings of healing because I was too broken to act in faith. I couldn’t even watch the whole video for crying out loud. How was I supposed to put in more effort in my life? I knew that God gives grace, but I wanted the blessings mentioned in this talk specifically, and I couldn’t bless other’s lives in a way that I felt would give me those blessings. I laid down for hours, staring at the ceiling after that.
I often felt empty inside like this. I would sit on the couch with the lowest amount of stimulation possible and try to feel something, anything, but nothing would come. Concussions come with a reduced ability to feel emotions.
Alas, the five weeks did come to a close and my time for treatment at the intensive clinic started. It was a boot camp format with two weeks of intensive treatment with six to eight hour days. The therapists were supportive and we got delicious lunches which made it enjoyable, but it was sometimes repetitive and difficult to drag my exhausted brain through the exercises.
What kept me going was the incredible fact that it was working, and I could feel it. I would be going during an exercise, about ready to give up, then I would feel a rush of blood flow to an area of my brain that had apparently been lacking in it. This happened several times. It was a miraculous experience.
I experienced leaps and bounds of improvement during those two weeks, and the neuroscientists that worked there were even impressed at how much improvement I had made. They told me that my brain was back to a normal healthy range which was remarkable.
At the end of two weeks I was given a regimen of exercises to do at home and an assignment to go to a vision therapist. I later chose to go to a therapist and chiropractor as well.
Unfortunately after those two weeks my brain was receiving blood flow in a healthy range, but I didn’t FEEL better. I still felt like something was off, but didn’t really know what it was. I went through a vision therapy program which was not very successful and I am still working on my vision skills to this day. And I went to a therapist which didn’t really help me with the “off” feeling. And I went to a chiropractor which didn’t get rid of this feeling either.
I have this feeling to this day, and don’t really know what it is. It may be depression, it may be mental health related, or it may be a bit of lingering brain fog. Along with that I have muscle spasms, tinnitus, mild reading and fixation problems left over, and I still get some symptom aggravation when I get a soft bump to the head, but it’s not nearly as bad as it was before. I can hit bumps in the car and be fine, and even some direct hits haven’t bothered me. But other than that, I am doing great in the brain injury department.
I think it’s important to mention that there is always hope. This is probably the hardest thing I have ever done and I miraculously got through it.
Not to say that all I had to do was “get through it.” That seems like an understatement compared to what I really did.
I lived it.
Every day for a year.
I experienced the lowest of lows that I didn’t even know I had the capacity to experience.
I think it’s also important to mention that I have faith that everything happens for a reason. In a talk that I love called By Divine Design by Elder Rasband it talks about how in the Book of Mormon a man named Alma was preaching to people in a city called Ammonihah. But, soon he left the city because of the wickedness of the people, but an angel appeared to him and told him to return and preach again(1).
Alma did just that and as he entered the city he was hungry and said to a man: “Will ye give to an humble servant of God something to eat?”
“And the man said unto him: I am a Nephite, and I know that thou art a holy prophet of God, for thou art the man whom an angel said in a vision: Thou shalt receive.”(2).
That man was Amulek. He is the man that would become Alma’s missionary companion and that would do much good(1).
This is an example of there being no coincidences in life. Alma did not just happen to find Amulek there, it happened by divine design.
A quote by President Thomas S. Monson says, “There is a guiding hand above all things. Often when things happen, it’s not by accident. One day, when we look back at the seeming coincidences of our lives, we will realize that perhaps they weren’t so coincidental after all.”(1).
I don’t know for sure why I had to go through this, perhaps it was to develop more compassion or patience as I thought before, or maybe it was for another reason entirely. But I believe there is a darn good reason for having to go through this. It wasn’t for nothing.
Looking back now, I think it helped me develop strength. It worked my spiritual and mental muscles to the max, and, it seemed, to the breaking point, and now they are healed and stronger.
If I could give myself a message back then it would be that you can cry and crying is worth it.
If you are experiencing or have experienced a brain injury I would love to connect with you so we can compare stories!
1 By Divine Design
https://www.churchofjesuschrist.org/study/general-conference/2017/10/by-divine-design?lang=eng
2 The Book of Mormon, Alma 8
