Post-Concussion Isolation

I remember the first Thanksgiving following my concussion. I didn’t realize that this occasion of coming together could be so dark, painful and even more isolating for me.

As a fresh reminder, I have five brothers, four sisters, seven nieces and eleven nephews. So, you can imagine just how big some of our family gatherings are. My very large family piled into the house. Just greeting everyone produced a lot of anxiety and required all of my depleted energy. I was so troubled by my vision that I felt guilty for not being able to maintain eye contact and having to look away frequently. It was so painful and that is still an issue I experience to this day.

It didn’t really occur to me to mentally prepare for the occasion, maybe partially because I was still in denial about my injury and because I hadn’t fully understood what was going on inside my body at that point. I figured it wasn’t a gathering with strangers so it would be completely comfortable and enjoyable.

As more and more people arrived, the more and more stimulation I experienced. I was having a difficult time processing the noise of the various conversations and the movement of people in the house. I felt like I was going insane attempting to maintain a conversation while hearing all of the background noise on top of the ringing in my ears. I kept going up to my room to hide in my bathroom to get away from it all for brief moments. Why can’t I even enjoy my family’s presence? It’s not like I was mingling with strangers. I could feel myself shutting down, breaking down.

Because of the amount of people at Thanksgiving, we had several very long tables set up and connected together. I took my seat at the table and looked around at everyone conversing, laughing and enjoying the moment. I wanted to experience that but couldn’t. Everyone started eating and just hearing the silverware clinking on the plates began to hurt my ears. The tiniest movement of someone bumping the table or moving their chair caused me to feel so dizzy and nauseated to the point I felt I was going to throw up. I felt too embarrassed to ask everyone to stop nudging the table so I didn’t speak up.

I couldn’t enjoy it. I sat at the table surrounded by my large, loving family yet felt so alone. I was physically there, but almost felt invisible. I felt so removed from myself.

Of course, many of the conversations I engaged in included questions about how I was doing and feeling. I said I was “okay.” This was the easy response that took up the least amount of energy. I was told I “looked good” or “I looked fine.” While I may have looked “good” on the outside, I was certainly not feeling good nor did I feel fine. This was so troubling to me – the external invisibility of the injury – a theme that has played over and over throughout my recovery. There’s really no external sign of what I was and am going through.

After the meal, everyone gathered at the table to play some games. I sat and watched. I smiled to essentially “play along.” This was just a lie to myself and everyone there. I didn’t want to draw any attention to myself nor did I want to be a downer. The games started to become more energetic and the environment became so loud.

There was a lot of movement at the table; it felt like it was constantly moving or vibrating. I became so dizzy and nauseated that I finally had it in me to speak up and ask if they would stop bumping the table. I felt embarrassed and also crazy for asking this because it was something that was so subtle and probably not even noticeable to everyone else. Pre-injury, I would have never noticed it.

I continued to watch. The longer this carried on, the more symptoms I developed. The longer this carried on, the more disconnected I felt. It was so disheartening to me because this was my family who I was supposed to feel comfortable with. It never crossed my mind that I would experience this with those really close to me. Questions started popping up in my head. Will I ever be able to enjoy this again? When will I feel like myself again? Will anyone ever fully understand what I’m really going through? Where do I belong anymore?

Everyone left and I went to my room where I sat in the dark, holding my head. Crying uncontrollably, I continued to suffer in silence.

It felt like a nightmare and I so desperately wanted someone to wake me up.

The Fainting Disease: POTS

November 17, 2018 – My First Syncopal Episode

It was about five weeks post-concussion when I started to experience another issue which was quite frightening. At that point I really didn’t think I could develop any new issues. I woke up at 0700AM one morning after tossing and turning all night. I got up to walk to the bathroom and collapsed on my bedroom floor.

I don’t know how long I was out but opened my eyes to find myself lying on the floor. My body felt tingly and numb. My legs felt very heavy. I laid there like a pretzel, terrified. I didn’t have enough energy to scream for help. Eventually, I crawled back into bed and called my Mom on the phone. She came up to my room to check my blood pressure. It was 80/60, very low. My heart rate was 160, very high.

After the syncopal (fainting) episode, I didn’t feel right and was very fatigued. I began to experience heart palpitations and started to experience chest pain. My head hurt but also felt like it was floating. I laid in bed for the rest of the day because I was too weak to move. I thought maybe this was just due to dehydration or lack of sleep. I hydrated as much as possible throughout the day.

I saw my concussion specialist and explained the event. He was concerned that maybe this was HCM (hypertrophic cardiomyopathy) which is the cause of sudden death oftentimes in young athletes. He referred me to a sports cardiologist for further testing. The soonest I could get in was almost a month away.

December 4, 2018 – Three Weeks Later

I thought that maybe I should see a chiropractor and have my neck adjusted. Maybe this would help with the headaches and neck pain. He was booked for months and so I was on the waitlist. I got a call that morning that he had an opening and I was so thrilled to go to the appointment and hopeful for relief.

I checked in to my appointment and started walking over to the waiting area when I suddenly felt very hot and started profusely sweating. My head started pounding and my stomach was in knots like I was being stabbed. My vision started to tunnel, my lips went numb followed by my arms and then my legs. I started seeing spots and felt like I was going to pass out. No one was near me for help. I thought, okay I just need to make it to the bathroom to splash cool water on my face. It’s not far.

I didn’t make it and must have passed out because I woke up in a hallway somewhere along the way to the bathroom. I felt so weak, like I could just sleep there for days. I needed to find help but the nurse’s station seemed so far away. I got up to walk to the nurse but I started feeling like I was going to pass out again. The nurse saw me and started walking towards me but my vision started to go black and I told her I thought I was going to pass out.

At that point my vision was black and I was leaning all of my body weight on the nurse. I didn’t know what else happened between then and lying on an exam table with my legs propped up. There were five doctors standing around me. My blood pressure was 70/40, again very low. For the rest of the day I had a headache, fatigue, chest pain and heart palpitations. I felt more fatigued than I ever had in my life.

This was a new issue that I wasn’t really aware of following a concussion. I was eager to see the sports cardiologist and hoped that I wouldn’t have another episode before then.

December 11, 2018 – Sports Cardiology Appointment

My Mom and I made the trip to the city inside of a city, Cleveland Clinic Main Campus, for my sports cardiology appointment. This was an all-day event, starting with an EKG and then an ECHO (echocardiogram or ultrasound of the heart) to look for any structural abnormality. Both were normal. The cardiologist took a very thorough history and physical exam and determined I should wear a heart monitor for two weeks to rule out any arrhythmias. He anticipated that would be normal and suspected I had some form of dysautonomia secondary to the brain injury and so referred me to the syncope clinic the next day. My visit to the syncope clinic would also contain a lot of testing and I was there for almost the entire day.

I had a lot of blood work done and had undergone an autonomic tilt table test. This is a test that determines how well a patient’s autonomic nervous system controls heart rate and blood pressure by recording these measurements in different positions. I was strapped to an exam table while hooked up to a heart monitor, a blood pressure cuff, and pulse oximeter (measuring oxygen levels). The test was conducted over 90 minutes and in increments the table was lifted while recording my heart rate and blood pressure on a minute-by-minute basis until the table was completely vertical. A risk of this test is fainting on the table but thankfully this did not happen to me!

I then had an exercise stress test to record my heart’s electrical activity while active. This was normal other than a weakened response which could be due to deconditioning. I then saw an exercise physiologist who went through the results and gave me restrictions on types of activity and also maximum heart rate cut off for exercise. They also recommended I begin using a heart rate sensor.

After all of the testing, I was diagnosed with a form of dysautonomia called postural orthostatic tachycardia syndrome (POTS). POTS is termed “the fainting disease.” For me, this condition was caused by the TBI and later I would find out that it was complicated by chronic infections.

I will do my best to explain what all of this means because these systems in the body are very complicated.

What Is Syncope?

Syncope is a brief loss of consciousness triggered by a sudden decrease in blood flow to the brain. Lay terms of syncope are fainting or passing out. The person regains consciousness when blood flow adequately returns to the brain. There are various causes of syncope and in my case this is why I had so much testing to identify the cause.

What Is the Autonomic Nervous System?

The autonomic nervous system (ANS) regulates various processes in the body such as breathing and blood pressure. This system works without a person’s conscious effort and works automatically or autonomously. The number of systems the ANS is involved with is phenomenal – heart, lungs, blood vessels, stomach, pancreas, kidney, adrenal gland, bladder, small and large intestines, liver, gonads, mouth, eyes, nose, throat. With that said, the ANS controls so many body processes: heart rate, breathing rate, blood pressure, metabolism, temperature, digestion, urination and defecation, sexual response, production of body fluids, balance of electrolytes and water.

The ANS has two divisions – the parasympathetic system and the sympathetic system. The ANS receives information from the body and either stimulates certain body processes via the sympathetic division or inhibits certain body processes via the parasympathetic division.

The sympathetic system is activated under stressful circumstances and is referred to as the “fight or flight” system. This system increases heart rate, increases breathing, increased blood flow to muscles, causes the pupils to dilate and for you to sweat. This is all activated to escape danger or withstand stress. Because it turns on in emergent situations, other less important functions like digestion and urination are slowed down to allow the energy to be placed where it is needed the most. Through clustered nerves in the cervical spine, this system connects to various parts of the body.

The parasympathetic system controls body processes under normal circumstances and is referred to as the “rest and digest” system. It helps conserve energy, slows heart rate, decreases blood pressure, and stimulates digestion. Through clustered nerves where they connect from the spine into the skull, also known as cranial nerves, this system connects to various parts of the body. If there is dysregulation of any of these clusters of nerves for both systems, unpleasant symptoms can occur.

What Is Dysautonomia?

Under normal circumstances, both of these divisions of the ANS are in perfect harmony and synchronize simultaneously throughout the day to maintain a balance. When the ANS loses this balance and one division becomes inappropriately dominant, this is called dysautonomia. There are several different medical conditions that fall under the term dysautonomia, but all of these conditions are a result of some malfunction in the autonomic nervous system. People with dysautonomia can experience a multitude of symptoms which can be vague but often disturbing.

There are many causes of dysautonomia: neurological conditions, trauma, toxic exposures, viral infections. There is no cure for dysautonomia but symptoms can be managed; this usually takes a lot of time to find a treatment plan that works for each individual.

What Is POTS?

Postural orthostatic tachycardia syndrome (POTS) is a blood circulation disorder characterized by a very fast heart rate that typically occurs during positional changes like when a person stands after lying or sitting. The heart rate can speed up by 30 beats or more per minute. Along with the abrupt increase in heart rate, there can be a drop in blood pressure and ultimately syncope. This condition is more common in women than men.

The structure of the heart, as in my case, is typically normal. For unknown reasons, the blood vessels do not respond efficiently leading to pooling which can then result in syncope because of the lack of blood getting back up to the brain.

POTS symptoms might include but are not limited to: headache, fatigue, flushing, shortness of breath, chest pain, lightheadedness, syncope, tachycardia (rapid heart rate), GI upset, temperature sensitivity, exercise intolerance, cold extremities, high or low blood pressure, sensitivity to light, mood issues, neck tension, sleep disturbance, unexplained aches and pains. The symptoms can be very disabling and diminish quality of life. I have struggled with every symptom listed above.

The disability that can result from POTS has been compared to the disability caused by conditions such as congestive heart failure and COPD.¹

There are some very alarming statistics related to this condition. Because POTS is not well understood in the medical community and there is such a prevalence of vague symptoms, there is typically a delay in diagnosis which on average is 5 years and 11 months. Within the first year of symptoms, only about 25% of patients were diagnosed with POTS. About 59% of patients prior to proper POTS diagnosis were told by a doctor prior that their symptoms were “all in their head.” Before properly being diagnosed with POTS, 27% of patients had visited more than 10 doctors. 69% of patients with POTS were initially misdiagnosed with an anxiety disorder before being properly diagnosed.² Peer-reviewed research has shown that the prevalence of anxiety disorder in POTS patients was not significantly greater than the general public.³

Thankfully, my diagnosis was made promptly after symptom onset.

How Might A Brain Injury Affect the ANS?

The physical trauma from a traumatic brain injury alone can lead to dysautonomia. This isn’t fully understood yet by the medical community and ongoing research is being conducted for more understanding. POTS actually wasn’t found to be a late complication of TBI until recently. Specifically following a TBI, if dysautonomia occurs it almost always involves sympathetic system dominance: this means that you are stuck in this fight or flight state. The body thinks that by doing this it is protecting itself but in reality, this ends up harming you and leading to many problems. This response would be great if I were evading an attack by an animal while hunting for my next meal like our hunter-gatherer ancestors!

What Has Been the Most Helpful POTS Treatment For Me?

Due to the fact that there are so many symptoms one can experience with POTS, there can be an overlap in what exactly is causing them. Unfortunately, there is no way to know with certainty if the remaining symptoms are directly being caused by POTS or just the aftermath of the TBI.

With that said, while I still experience a multitude of symptoms which may or may not be related to POTS, the syncopal and collapsing episodes are finally at a point where I can say they are well controlled. My heart rate has also been better controlled. I have finally been able to identify some triggers for me; some are still unknown. It took over a year from my diagnosis to get to the point where these syncopal episodes are controlled for the most part. While I still do experience moments where I black out, actually fainting and collapsing has become less and less.

We tried countless medications in an attempt to control my heart rate and blood pressure but unfortunately, I was refractory to treatment and experienced a lot of side effects. Some medications I tried without success: nadolol, metoprolol, midodrine, duloxetine, fluoxetine, fludrocortisone, desmopressin. There had been several times where IV fluids had helped provide some temporary relief but this was not a long-term solution.

In addition to the medications I was advised to try compression stockings but unfortunately, they didn’t provide relief and putting them on was a strenuous workout! Something very beneficial has been closely tracking my heart rate. I track my heart rate with a few different devices but the most accurate and useful has been the Polar H10 Heart Rate Sensor, which has been researched extensively.

Under the care of a functional medicine doctor, I was treated for underlying inflammation and chronic infections that I wasn’t even aware of having. I didn’t arrive at a stable point until after I received treatment for these infections so I would like to believe this did have a positive effect on my syncopal episodes. This is why I think it is critical to have a provider who is willing to look intricately to find the root cause of illness.

Anything that adds stress in your life can cause the sympathetic (fight or flight) system to dominate. I have incorporated meditation into my daily practice. Though I am not sure how much of an impact this has had in controlling these symptoms specifically, I believe it is providing positive benefit in other areas of my recovery.

I was advised to increase sodium in my diet to 5 grams a day. It is impossible to eat this much sodium in diet alone so I had to try a few different companies that make sodium packets or tablets that dissolve in water. After trying several, I found a company called Nuun that makes clean electrolyte tablets that dissolve in water and they actually taste good. I drink 1 or 2 tablets a day in my water. I do notice a difference if I don’t drink this on a given day so I believe this is helping.

The most influential and helpful treatment for my POTS diagnosis has been physical therapy, specifically focusing on core and leg strengthening. These strengthening exercises increase muscle mass, directly leading to better blood return to the heart and brain. It was a challenge at first to find a balance at physical therapy because increasing the heart rate is good for concussion rehab and the brain, whereas increasing the heart rate too much can worsen POTS symptoms. After many months, we found a balance and it took about 5 to 6 months to notice a positive change in my POTS symptoms. While I know there is a long road ahead, I am grateful for this progress and the team I have at physical therapy.

Sources

What is dysautonomia? Dysautonomia International: http://www.dysautonomiainternational.org/page.php?ID=34. Accessed February 11, 2021.
Dysautonomia International: Diagnostic Delay in POTS. http://www.dysautonomiainternational.org/page.php?ID=184. Accessed February 11, 2021.
Raj V, Haman KL, Raj SR, et al. Psychiatric profile and attention deficits in postural tachycardia syndrome. J Neurol Neurosurg Psychiatry. 2009;80(3):339-344. doi:10.1136/jnnp.2008.144360

My Legacy Pledge

Those who know me and the depths of my recovery know that one of the things I struggle most with is feeling like I am unable to contribute to the world right now. My work as a physician assistant gave me a sense of purpose because I was able to help others when they needed it the most. It felt like I was doing good and contributing something positive to the world. Being unable to work in addition to losing my independence in other areas of my life due to this brain injury has left me feeling a bit lost because I want to continue to positively contribute to something greater.

I have decided to pledge my brain to the VA-BU-CLF Brain Bank upon my death. This organization is the largest tissue repository in the world specifically focused on understanding the long-term effects, advancing the prevention and treatment of traumatic brain injury (TBI) and chronic traumatic encephalopathy (CTE).

Pledging my brain is a way for me to contribute to something greater and may be the most meaningful contribution I can make in my lifetime to help those ahead. The research conducted at the brain bank to aid in the TBI crisis, prevention and management of CTE is something I admire and feel very strongly about.

There have been more than 8,000 pledges thus far with a goal of 10,000 by the end of this year. There is a crucial need for more brain pledges especially women who are underrepresented. Female brain pledges are so important because we are more susceptible to concussions and recovery is often prolonged compared to males.

This is an incredible way to bring more knowledge to concussions and CTE. To learn more about brain injury in youths and CTE, go to this guide and resource here: Youth Concussions – What to Do if Your Child Has a Concussion.

The brain bank is also in need of healthy brains to serve as controls in research so this means you can contribute and be part of the solution even if you have not sustained a brain injury.

I highly encourage anyone, athletes or non-athletes, especially those who have suffered a TBI to pledge to bring awareness to this “invisible injury” and potentially be a part of a scientific breakthrough.

I left the game I love on terms that were not my own but hopefully with my contribution, I can leave it better and safer for generations to come.

This is my legacy pledge to being part of the solution.

Take the pledge here.

Concussion Legacy Foundation Infographic

A Place Disease Cannot Touch

I am here to bring you a powerful message: a message of healing, a message of life. Right now you may feel overwhelmed by the challenges facing you. Fears get magnified, priorities get revaluated. Many of us are confronted for the very first time with our own mortality. Healing becomes the magic word. Where do we go from here?
There is a place within you that disease cannot touch, a place where you are whole and radiant with health. This is the sacred place within you where the power of Spirit, the Divine, resides. This power within can transform your life. Attune yourself to it by quieting your mind. Become receptive to its guidance by letting it speak through your intuition.
As you connect with this power you will come to understand that your physical self undergoing a disease experience is only one side of you. Your spirit, the very essence of your being, is whole; healthy, intact.
It is this power in you that will give you strength to overcome your difficulties one step at a time, to let go of preconceived ideas about your health. It will give you the courage to look at your life, heal the wounds of your past, forgive yourself and others, and let go of the anger, resentments and regrets.
It is this power in you that will help you accept yourself totally as you are: your wonderful, creative self, expressed through the gifts you bring to the world, and the limitations of your humanness.
When doubts and worries overwhelm you and trouble your heart, that power within will comfort you, giving you the ability to let go and be free in the moment.
Your focus will shift to the fullness of life; you may rediscover joys lost in the hectic process of everyday living and become grateful for all you have taken for granted.
All it requires are the two most powerful tools in the universe…willingness and belief:
Willingness and belief.
Tullia Forlani Kidde

I heard this one day last year and it resonated with me to my core. I felt it so deeply, like it was speaking directly to me. I was left in tears. I printed it and taped it to my bathroom mirror so I see it every day. “There is a place within you that disease cannot touch,” has become a mantra for me.

There are so many variables that construct our identities. After so much loss during this recovery, I have struggled with my identity and oftentimes feel consumed by my injury. I haven’t felt like myself for 28 months now and feel very lost at times. It has been so long that I don’t even know what “normal” feels like anymore.

I have been told to accept that this is my new normal and that I may not get much better than this. I have also been told that there is hope of more improvement. There are so many unknowns. My faith has been tested. There are no guarantees and letting go of the process and preconceived ideas about my recovery is something that I still struggle with.

While my spirit feels broken at times, I hold on to the hope that deep within me somewhere I am radiant with health. Having this as a reminder is something I deeply hold onto.

Not Ready to Admit Defeat

woman looking at sea while sitting on beach

November 9, 2018

It’s about one month post-concussion. I had recently attempted to go back to work despite my physician saying he did not think I would be able to tolerate it and would not be successful. I desperately wanted to prove him wrong and also desperately wanted some semblance of my abnormally normal life before the injury.

Who was I kidding? After just 15 minutes of being there, my eyes felt seared by the fluorescent lights. Everything on the computer screen was blurry. The ringing in my ears intensified and I began to feel like I was going to pass out. This seems to be the norm in environments with a lot of stimulation, so the emergency department environment was way over the top.

The concussion specialist decided that I should start a round of steroids to help with inflammation of the nerves of the brain. This was supposed to help with pain but also the ringing in my ears. It didn’t help with the pain nor the ringing but it did provide worsened insomnia, a common side effect of steroids. Just what I needed, less sleep than the broken three hours I am getting.

My hockey team has a tournament this weekend. I am having a hard time deciding if I will be able to tolerate watching the games – physically and emotionally. This would be the first dose of hockey since the concussion. The games are at the same rink where I sustained my injury. Just thinking about it makes my heart flutter and I feel nauseated and develop a knot in my stomach.

At this point, it’s still new – the feeling of not really being a part of the team. This injury feels different than any I have experienced in my whole career of playing which makes me wonder if subconsciously I know this is it for me. If I start to feel down about it, I hold on to the glimmer of hope that I will be out there with them again in the near future. We are supposed to travel to California for the National Tournament this season – something I’ve been ecstatic about.

I took the reins of the pre-game locker room music. It’s something I have been in charge of on many of the hockey teams I’ve played on. There’s nothing like 10-year-old me getting pumped to “Who Let The Dogs Out.” I made sure that every time I scored a goal in college, “You Make My Dreams (Come True),” by Hall and Oates would start blasting in the rink. My friends know this about me – I am constantly making new music playlists. Naturally, I’ve been so looking forward to making a playlist for the National tournament. Well, and eating…I could not wait to compile a list of all the restaurants we would eat at on the trip.

I decide to go watch a game at my team’s tournament. I give myself just enough time to make it for the puck drop – I don’t have it in me to enter the locker room. I take some big breaths and give myself a little pep talk before going inside. I enter the arena and walk in to the rink. As I walk by the boards where my injury occurred, it comes flashing back – the stick to my chest, the sound of my head slamming the ice, the darkness, the ringing. I keep moving as fast as I can. I pass by my team’s bench and my teammates wave and smile and seem happy to see me. It’s a nice welcome but I feel strange.

I stand in the corner to watch the game alone. I’m watching for about three minutes and already feel dizzy. I suddenly can’t track the puck. “What is happening to me?” I wipe my eyes in some desperate attempt that it’ll allow me to see better. This is the first time I am truly realizing the inability of my eyes to track moving objects. I feel sick to my stomach and it feels like I’m being stabbed in the eyes. It’s better If I just close my eyes.

I close my eyes and listen to the skates cutting into the ice, the sound of the puck against the sticks. I take a big breath and the cold air of the rink fills my lungs. It’s a feeling of home, a feeling of comfort. The feeling is short-lived and is replaced with one of despair and heartache.

Something about being there pushes me further into this deep feeling of isolation, aloneness. Even though my teammates were welcoming and seemed happy to see me, I was left feeling this way. And it was also hard because I don’t look injured so it was invalidating as to why I wasn’t out on the ice with them. It’s a strange feeling that I somehow feel like a failure even though I didn’t choose this for myself. There’s even a sense of embarrassment.

I’m still in denial at this point that this will last much longer. So, I missed one tournament; I’ll play in the next one and those following. Soon enough it will be time to travel to California for Nationals and everything will be back to normal. I talk to some teammates after the game and I downplay my injury because again I feel shame and I’m not willing to accept the seriousness of it yet.

Admitting to the injury feels like admitting defeat and I’m just not sure I’m ready for that.

Memory Issues

November 6, 2018

It’s almost a month post-concussion. I haven’t been willing to acknowledge the memory issues I am struggling with. I make post-it notes for myself – to remember my laundry, take my pills, turn off the stove. My mom has noticed but I try to avoid it and not talk about it. It just adds to my long list of symptoms. I find I am still in denial about a lot of things.

I find myself going downstairs, standing in various rooms of the house and forgetting why I went there. My Mom tells me I keep asking the same thing I had just asked her about five minutes prior. I have no recollection and I am starting to feel annoying. My sister jokes that I’m Ten Second Tom from the movie 50 First Dates, who forgets everything ten seconds later. I try to joke and laugh about it to cope but really, I am feeling a little scared.

I voted or attempted to vote today. I really didn’t feel well enough to but went anyway. The ballot was blurry and it was exceedingly difficult to track lines and fill in bubbles. It was almost as if the bubbles were moving. Standing in the little cubicle, I started to panic. Squeezing my forehead to provide some relief of the pressure in my head, I tried to rush through it to make it more bearable. I couldn’t even remember who I voted for. After, I felt defeated, shameful. I was left with a pounding headache, nausea and double vision. How could something so simple be so difficult for me?

I try to stay “active” in some form by going on daily walks. It doesn’t compare to my activity level before the injury but at least it’s something and I do enjoy being in nature. I attempt to entertain myself on the walks by listening to podcasts about murder mysteries but also podcasts on traumatic brain injury because maybe I will hear something helpful to my recovery. I also want to attempt to keep my brain sharp but I guess it’s not so sharp if I’m having memory issues.

I went on a walk in my neighborhood yesterday – a walk I have been on many times but decided to take a different route home. I ended up on a trail in the woods that I thought would meet back up with the main street although it never did. The path split into three other directions and I had no idea where I was or where to go. I started to panic a little.

I thought maybe I could just turn back but I had forgotten where I came from. I slowly started turning in a circle to observe my surroundings and different outlets and the panic kept heightening. Suddenly, it felt like everything was spinning around me. I felt like a speckle in the middle of giant trees that had blurred together into one. It felt like I was walled in. I think maybe I was panicking more so at the fact that I should’ve known where I was but didn’t.

I became hot and sweaty, the ringing in my ears intensified, my head and heart were pounding. I stopped the podcast and crouched down on the ground and focused on my breathing in an attempt to calm myself. I became scared being there alone and lost. I picked a trail and started running as fast as I could. Everything was blurry, my head pulsating and my surroundings were spinning but I wanted to get out of there as fast as possible. Relieved, I made it to a street I recognized. Eventually, I made it home. In retrospect I don’t even know why I was panicking so much because I was in my neighborhood and close to home.

It was so irrational. Maybe I should really start acknowledging the memory issues but something is stopping me.

Why Is This Happening?

monochrome photo of person standing on hallway

November 3, 2018

It is three weeks post-concussion. At this point I am miserable and just want to feel normal again. I’ve been waking up with pounding headaches that last all day. My neck is so stiff it’s almost like it has a death grip around my head. If there is ever a point in the day where the pain improves a little, it’s always in the background, lingering. Something small triggers it to come back full blast – I move my head too quickly, I see the glare of the sun, I focus on reading something for a minute too long. I’m starting to feel crazy because of the ringing in my ears.

Despite the symptoms, I try to push through the best I can and still attempt to carry out some of the normal things I did before. It’s my best friend’s birthday and I am supposed to go out to dinner with a whole bunch of people to celebrate. Despite the fact that my friend would understand if I decide I can’t tolerate it, I feel like I need to no matter how I’m feeling. My guilt starts to kick in even thinking about bailing.

I made it to dinner. It is such a busy environment. There are bright lights, TVs lining the walls every few feet, loud music blasting among the muffled crowd noise from a hundred different conversations occurring in the space. It’s not long before I feel myself breaking. It’s like my brain is a computer trying to re-boot itself but is frozen on the re-boot screen in the process. I want to be able to tolerate this so badly. I tell myself I can push through.

I can feel my eyes giving up. I feel disconnected. I can’t focus and I can feel them jumping back and forth like little earthquakes. The glare of the TVs, people moving, all the sounds and noises – it’s sensory overload. I feel very hot and start profusely sweating.

I am trying to maintain conversations with various people at the table but suddenly it’s hard to make out their faces and I begin to see double. I start freaking out internally because I am having a hard time even making out what they are saying. Their lips are moving and all I can hear is the ringing in my ears mixed with the music and muffled crowd noise. I can feel my heartbeat pulsating through my eyes and head.

My ears are now ringing full blast. Please make it stop. I feel like I’m fighting my body because it wants to turn off and pass out. I go to the bathroom where I sit in a stall for a few minutes and just hold my hands over my ears and start crying.

I need to pull myself together. I don’t want to bring attention to myself or ruin anyone’s night, certainly not my friend who we are celebrating. I’ve made it this far; I can do this. I wipe the tears from my eyes, put a smile on my face and go back out to face the storm of the restaurant.

I look out at everyone talking, laughing and having a good time and I feel isolated. In an environment of 200 plus people, I feel alone.

I manage to make it through the rest of the dinner. I think I did a pretty good job of playing along and don’t think anyone could really tell what I was experiencing. I make it home and find myself sitting on my bathroom floor, squeezing my head with my hands as the tears pour. I scream in desperation, “Why is this happening?”

Normalcy Slipping

The Week of October 22, 2018

It’s two weeks post-concussion and I am already feeling lost and impatient. The loss of routine with work, exercise and other seemingly little things like just being able to effortlessly get into the car and go for a drive is starting to get to me.

Growing up, I was taught that you have to work hard for everything in life. This flowed into my competitive nature and spirit in sports. The mentality that if you work harder, you will be at the top of your game and be successful. My Dad would always say and still says, “Give 110%.” During this recovery, I keep getting down on myself because I’m not progressing. I work harder, push myself harder, but my symptoms just keep getting worse and worse.

My busy, active, purposeful routine vanished and was replaced with hours of lying in the dark and no routine at all. Every hour of every day I am riddled with pain and fatigue among many other symptoms but in an attempt to maintain some sort of normalcy, I start going to the gym.

I attempt to incorporate some light cardio exercise at the gym. The doctor gave me the green light to do this. Busy environments are very triggering for me with all of the sounds, lights and movement. It seems like this issue is actually becoming worse, not better. I thought with more exposure, it would become easier but it has really been the opposite.

I just want to be active and really I am hoping this will allow me to recover fully and get back to work and on the ice soon. I am trying hard to hold on to the thought that this is only a small bump in the road and I’ll be back to my normal again very soon.

The gym environment is not very welcoming to my symptoms. My orange lensed glasses only help so much. The lights, TVs, music and people moving about cause my heart to pound, tinnitus to become louder and to feel a general sense of panic. This is new – anxiety. I’ve never dealt with this extent of anxiety in my life.

I hop on the elliptical but just the little up and down movement of the strides causes me so much dizziness and nausea that I have to stop immediately and close my eyes. It feels like I am out on rough waters again, the same way I felt just after the concussion. “This is pathetic,” I thought. I went from being able to skate, run, and work out to this.

Maybe the stationary bike will be more tolerable. I start pedaling at the lowest level possible at a very slow pace. I close my eyes so I don’t have the visual input of the space around me coming in. I am trying to get my heart rate up but if I get it up to 115 beats per minute, my head starts to pound and I can hear loud whooshing into my right ear in addition to the ringing. It is as if my head is about to pop.

The stationary bike becomes very monotonous – riding so slow and at such a low intensity with my eyes closed. I ride for twenty minutes which feels like an hour. I’m starting to wonder if I am already severely deconditioned. How could that happen within two weeks?

I want so badly for my balance to be better so I can show them on the next concussion assessment that I can do it. I go into an area of the gym with a handrail against a blank wall. I attempt to balance on one foot which I can do while holding the rail. I slowly release my hands to balance without holding on.

As soon as I release my hands, I get the feeling like I am unsteady and about to fall over. I grab ahold of the handrail on the wall and squeeze it tight in fury. I become so irritated with myself. I think, “I can do this, I just need to try again and try harder; this is mind over matter.” I try over and over and harder and harder with each leg and I am unable to do so without falling over.

I feel like I’m giving 150%. I am trying harder than I ever have in my life and somehow, I am still getting worse. I am becoming more frustrated and more impatient with myself.

I soon become enraged. What can I control anymore? How will I be able to go back to work or skate again when I can’t complete such simple tasks? I clench my fists and nearly punch the wall. This just isn’t me. I start crying in the middle of the gym.

I describe my experience to one of my best friends who has been very understanding and validating. She offers to start coming to the gym to ride the stationary bike with me. I cannot express how much this means to me; it brings me to tears. This simple act of kindness allows me to feel supported and a little less alone, which means everything.

We continue to meet at the gym, do our stationary biking, lie on the mats in the ab room mostly pretending to do some core exercises and laugh. And just for a brief moment, it was a temporary escape from the reality of my situation.

Me in my “stylish” orange lensed glasses looking like a conehead at the gym

The Aftermath of My Brain Injury

You know that feeling after an all-nighter or just a night you stayed up way too late? Or the feeling of a hangover (for those of age reading this)? You feel groggy, nauseous, irritable, like you can’t think straight, just not yourself. But you know you could nap that day or get a good night’s sleep the next night and wake up and feel okay again. The good part is you know that feeling is temporary and it will come to an end. Well, imagine that’s how you feel every single morning when you wake up. It never fades. That’s what this recovery is like. It’s like you are running on empty and on reserves that are almost completely depleted.

In the week that followed the concussion, more symptoms kept emerging until suddenly I was buried in symptoms. I was getting worse and not better. Layer after layer, I was inundated. Somehow, I was still in denial about this injury. I kept thinking, “Okay, just another week and I will be fine.”

I could feel everything I was in control of slowly slipping away out of my grasp. Within just a couple days, I could not tolerate driving. It was the worst driving down streets lined with anything – trees, cones in a construction area, houses. Or a sunny day when the light from the sun causes the effect of a strobe light as it shines through the trees. This would cause so much dizziness and I could feel my eyes jumping back and forth, unable to focus. It was like everything was closing in on me. If it rained, the windshield wipers swiping back and forth made me so dizzy to the point I would almost throw up.

I was suddenly unable to look at my phone without my eyes hurting or feeling cross-eyed. Scrolling on my phone caused me so much dizziness and nausea. The light sensitivity became so bad that it was like the sun was able to penetrate directly through my skull and into the nerves of my brain. I could not bear to have my eyes open without sunglasses or tinted glasses. I started wearing glasses with a yellow/orange tint. To me it was highly embarrassing but I can’t tell you how many comments I received on how “fashionable” they were (and are).

The second night after the injury I started waking up at 0300 AM and could not fall back asleep. Sleep just wasn’t happening. My neck felt so stiff like it was a cement block. The ringing in my ears became so loud, 24/7. Sometimes I would think there was an alarm going off. I’d search for it to realize it was my tinnitus, and then I’d feel crazy.

Nine days post-concussion, frustration started to settle in. From my journal:

“I thought I’d be better by now but I feel like things are actually worsening every day. I am becoming frustrated with my body. Something isn’t right. I do not feel like myself. I can’t focus and everything is blurry. Waking up with a headache and neck pain every day.”

My first appointment with the concussion specialist wasn’t until 12 days post-concussion. It was the soonest I could get in. I thought “Okay, the Cleveland Clinic Concussion Center can get me better.” The appointment was a blur.

At each appointment at the concussion center, each patient is tested with the C3 Logix application on an iPad which tests balance, reaction time, memory and vision. Balance is tested using the BESS (Balance Error Scoring System) which tests balance in a range of foot positions on a foam and hard surface.

My eyes were too sensitive to movement and light to do any of the testing on the iPad. My balance testing had so many errors that I was embarrassed. My reaction time was so poor that I didn’t fall into the ranges for an athlete. I couldn’t stand on one foot without having to reach out to hold on to something in order not to fall. How did I go from being a competitive athlete to this?

There is a concussion symptom severity score taken at each appointment. It includes a total of 27 symptoms and each symptom you are experiencing is ranked from a severity score of 0 (not experiencing) to 6 (severely experiencing). I was experiencing 22 of the 27 symptoms, most ranked 5 or 6. To this day, I still experience 22 of the 27 symptoms.

Example of the Concussion Symptom Severity Score

The physician was concerned that 12 days post-concussion, my eyes were completely glazed over and my symptom severity score and physical exam were that of a patient who had just immediately sustained a concussion.

The physician ordered an MRI of my brain, referred me to an optometrist who I would see the next day and vestibular rehabilitation.

The loud thumping of the MRI machine was nearly unbearable. It was like a hammer directly striking my skull over and over again. I left the machine with a pounding headache and nausea. I felt so lightheaded and hot like I was going to pass out. Completely drained, I laid in bed the rest of the day.

The next day I was evaluated by the optometrist who diagnosed me with convergence insufficiency and accommodative insufficiency. In short, these diagnoses mean the eyes have an inability to sustain focus on a near target and one was caused to turn out instead of in with the other eye leading to double or blurry vision. I was prescribed reading glasses to aid in focusing. The glasses had a tint to them to block blue light and help with light sensitivity.

I was advised to follow up again in one month to determine if I required vision therapy. This didn’t feel right to me and I felt like my condition was being minimized but I listened and went on my way. To this day, I wonder if I had been rehabbing my vision for that month my eyes would be in better shape today. I did start vision therapy with this optometrist after my follow up one month later and went every two weeks. This lasted several months with no notable progress at all. Later, I will discuss my strong opinion on finding an eye doctor who specializes in neuro-optometric rehab rather than vision therapy and the importance of seeking such treatment immediately after the injury.

I then followed up with a therapist in vestibular rehabilitation. The vestibular system is a sensory system that is part of the inner ear and sends the brain information about spatial orientation, motion, head position and balance. I was referred here because of the balance issues and dizziness I was experiencing. We focused mainly on head and eye movements which were causing me great dizziness. I didn’t feel like all of my concerns were being fully addressed and noted no progress whatsoever with the recommended plan but went along with all of the recommendations because that’s what I was told to do. I continued this for months with no improvement at all.

The quick referrals to these specialists are something that I appreciate, however, I do believe it should have been recognized at those referrals that my case was too complicated and needed more complex care. At the very least, I felt like my concussion was downplayed by these providers. I felt like I had to take what the medical model was throwing at me when really that time I was feeling like it wasn’t right or wasn’t adequate, I should have been my own advocate and found more options.

If you are suffering from a brain injury and have a feeling like the care you are receiving is not right or your concerns are being minimized, my best advice to you is to be your own advocate. If you are the loved one of someone suffering from this type of injury and are seeing no notable improvements, you should be their advocate.

Our bodies have a remarkable ability to adapt and so bad behaviors can be learned quickly. During that time period, my brain became accustomed to the dysfunction of my eyes and vestibular system. It is harder for the brain to unlearn a behavior rather than learn a behavior. If I had received the proper treatment early on, maybe I would not have carried these dysfunctions with me to this day. I didn’t know any better because these were the providers I was told to see and so continued even though my gut was telling me it was not right.

I feel like the medical system failed me. I don’t say this lightly because I am a healthcare provider and was part of the medical system. As I have stated before, I was once a part of the problem in the way I brushed off concussions and I may have even been the first provider to have failed a patient experiencing something similar.

This needs to change.

Every treatment modality that has provided some sort of progress for me over the past 27 months has been something I had to research and find on my own.

Be your own advocate.

Lift the Fog

This journey through my recovery has been painful, draining and heartbreaking to say the least. With progress always comes a setback or a few and it is deeply disheartening. Even with such incredible support I have received from friends and family, it is still so easy to feel alone. This comes back to this injury being essentially unseen to the eye which leads to so much misunderstanding and unfortunately, judgment.

Brain injury has been referred to as the silent epidemic. This is due to lack of public recognition of the complexity despite a staggering 5.3 million Americans alone living with disabilities secondary to brain injury. The effects are often downplayed or even unrecognized and untreated in a lot of cases, so the actual number is likely much greater than that.

I had experienced this stigma and downplaying of concussions personally in the medical field. I realize now that I was part of the problem. In clinicals I would see a patient who sustained a concussion with my attending and the patient was told to just rest for a week and refrain from use of electronics and send them on their way. Essentially, they were told to sleep it off. I would see a patient in the emergency department with a concussion and advise them to follow up with their primary care physician but I didn’t actually stress the importance of follow up and the possible repercussions. And really, I did know the possibility of these repercussions but not to the extreme that I am experiencing them now.

I didn’t truly know just how complex brain injury was until I experienced it myself.

I had been thinking about starting a blog on and off for some time but the task just seemed too daunting – I can’t read for very long and can’t stare at the computer screen for longer than ten to fifteen minutes every several hours without producing debilitating symptoms. Each day is so energy draining as it is. How could I possibly accomplish this and see it through?

I have been very reluctant to share my story and haven’t spoken openly about my injury and the struggles that followed and continue today. It’s extremely difficult to be completely vulnerable and express what I’ve endured for a few different reasons. These are some very dark days to reveal. With the injury comes a great deal of guilt and shame because it seems like you are trying so hard and doing everything you’re told but still just cannot progress like you want to. This recovery somehow feels like a moral or personal failing.

I don’t want anyone to feel bad for me and really just attempting to fully explain it to others is draining in itself. Only a few close people in my life know the depths of my recovery and what I have experienced. Keeping my story and journey private is due to several things – not wanting to worry others or let people down, not wanting others to feel bad for me, feeling shame that I am still going through this recovery. Sharing my story openly is a very uncomfortable feeling but the end goal of helping at least one person in the process is worth it.

I paint sometimes to get lost in something and to express how I’m feeling in a way words just can’t. As it is nearly impossible to truly put into words what every day feels like in this recovery, I painted this as a means of this expression.

Among many other symptoms I experience on a daily basis, brain fog is one of the big ones. This is one the most common symptoms of concussion. You feel like you are slowed down, in a fog, in a haze, not yourself.

One day I sat, frustrated, sad, anxious and thought maybe I should try to release this through a painting. And bit by bit, my painting came together…an outpouring of all of these feelings.

After painting this, I realized that I should just do it – share my writing and start this blog. I have struggled with the feeling like I am not contributing much to this world right now. Shortly after I painted this, it hit me – I should use my writing to contribute and hopefully help at least one other person no matter the hurdles in the process. I looked at my finished painting and it was raw and deep, a depiction of my recovery.

And so the name of my blog was inspired by my painting. Lift the Fog – that is what I would call it.

This is a message of lifting the fog – of traumatic brain injury misconceptions, concussion stigma, but also providing some clarity for those struggling in silence, who feel alone.

My hope is that my experience can lift the fog and cultivate the compassion and awareness that is needed to aid in this silent epidemic and bring hope to those suffering.

This is my first step to being part of the solution. Whether you are living with a brain injury or are the loved one of someone who is, may you find ways to better support, educate and spread awareness and better your life in the process.

Feel free to share in the comments below or connect with me here.