March 31, 2021
I began writing this Confession with one intention in mind, to give greater detail to many of the challenges I now face since my TBI. I began with post-concussion migraine because that is the one symptom everyone seems to focus on. However, I wrote a whole page just on that one symptom and I realized that no one would read a fifty-page Confession so I decided to try again. In no particular order, here’s just a glimpse of what I live with on a daily basis…
✦Post Concussion Migraine: my migraine began within hours of being hit. For days and weeks following my TBI, I waved my white flag in surrender; I could not tolerate the pain. Over 2,300 days with a migraine, I’ve stopped waving my white flag. I’ve forgotten what it’s like to not have head pain. I recently had someone say to me “you don’t act like you have a migraine. Are you making this up?” No, I’m not making this up. I (maybe not so) calmly explained to the person that after six and a half years with a migraine, I don’t really remember what it’s like to not have one. Your body can adjust to all sorts of things. Don’t be fooled, I feel the pain, it is very real, it’s there 24/7. I function quite well for feeling like someone is stabbing my head with an icepick. Post concussion migraines are tricky because unlike migraines caused by environment, hormones, diet, etc. mine is caused by literal brain damage and there is no medication for that. For the first three years or so of my TBI journey, my neurologist made it her life’s mission to stop my migraines. Last count I have tried over 40 migraine medications. After a few years of unsuccessfully stopping the migraines, we slowly transitioned to just trying to manage the pain.
✦Neuropathic Pain: Neuropathic pain presents in intense pain at the back of my head. I function very well with my migraine pain but the neuropathic pain can bring me to my knees. At times the back of my head is too sensitive to even lay on a pillow and washing my hair is a form of torture.
✦Nerve Damage: from the early days of my TBI I realized that I couldn’t always handle being touched, I also felt touch differently. My nerves were and still are misfiring. Touch can be okay at times and at other times it can feel like I’m being stabbed. Some days a gentle touch feels like just that and other days a gentle touch leaves me feeling battered and bruised. Because my nerves are misfiring I am overly sensitive to textures. I cannot tolerate too many different fabrics touching me (I will wake from a dead sleep if my hand reaches out and brushes my bedroom curtain).
✦Whiplash: when I was hit my head very quickly snapped front to back and side to side. This created severe whiplash that I still deal with today. Because of this whiplash my neck muscles are very weak and my neck can pop out of place easily. I stretch my neck muscles often and work on building up the strength. It is still hard for me to tilt my head back (to look up at the sky or the ceiling) and then right my head again so I’m looking forward; I often need to give a little push with my shoulders to lift my head.
✦Post Traumatic Tremors: I remember the first time this happened, it was probably a month or two after my TBI and I was driving in my car. I had been warned to watch out for seizures so when my arms started shaking I thought it was seizure activity. More often than not it is my arms and hands that shake but occasionally my legs join in on the fun. If I am with someone when this happens I will often sit on my hands or hold my own hands to help hide the tremor. They pass fairly quickly and are not painful to me.
✦Seizure Activity: speaking of being warned about seizure activity…I quickly learned with my TBI came my sensitivity to flashing lights. I honestly never realized how many flashing lights are in this world until they affected my brain. First responders lights, blinkers, hazard lights, crosswalk lights, strobe lights, fireworks, light bulbs that flicker, the list goes on. Each one of them creates a seizure effect for me. It makes it very hard for me to function and ramps up my migraine. It’s hard to describe what it feels like but the best I can come up with is like lightning running through your brain.
✦Fatigue: I always thought “end of school year teacher tired” was the most tired I’d ever be in life…I was wrong. TBI tired is a whole new ballgame. I have never been so tired ALL THE TIME in my life. I need sleep and I need rest. Pre-TBI I usually got 7-8 hours of sleep at night (I’ve never been one to work well off 5 hours of sleep) post-TBI 10-12 hours is what I best function off from. Despite sleeping 10-12 hours at night, come early afternoon my energy is gone so for me to continue my day, I often need to rest or nap to recharge. All my energy goes towards just functioning; my brain has to work so much harder now to get through the day and it is exhausting.
✦Fight or Flight: about two years ago another piece of the puzzle was added to my list of TBI symptoms. My adrenal glands were not functioning, my pituitary gland was not working properly and my body was stuck in fight or flight. There is nothing that can be done for my particular pituitary gland malfunction; cortisol treatment got my adrenal glands working properly (but they will always be “fragile” and I am constantly on the lookout for their malfunctioning); and my body seems to be permanently stuck in fight or flight.
✦Emotional Flooding: I have not talked to very many people about this TBI symptom because I’m worried about the feedback I’d receive. Someday I’ll write a whole Confession about it but for now I will simply say, with a TBI our emotions can be very strong, very quickly.
✦Depth Perception: because of damage to my brain I have poor depth perception now. It is most evident when I attempt mountain biking; I have trouble judging where the trees are and although I think I have room I often end up slamming into a tree with my shoulder. The other place it’s more noticeable is when I try to find a container to store food in, either I try to put a whole turkey in a small jam jar or I pull out a gallon sized zip-lock bag for half a cup of peas. Years ago I was moving and I told a friend that the garage I was using temporarily for storage was full to the brim (to me it was) and she looked and said not to worry, we could make it fit. She later explained to me that the garage wasn’t even ¾ of the way full despite my mind telling me it was overflowing.
✦Cognitive Issues: a saving grace of my life post-TBI is that I was a special education teacher, so when my new life was full of cognitive issues, I let my training take over and I made many accommodations and modifications for myself. From my early days with my therapists and neurologists a constant joke amongst us was “if anyone needs to have a TBI it’s best if they are a neurologist or a special education teacher” because we know how to adjust our lives. By the time I was referred to cognitive therapy, I had already made many changes to daily life to help with my new challenges. Our first therapy appointment was slated to tackle these issues and the cognitive therapist just laughed and said “okay…check that off the to-do list”. Since my TBI my memory does not work the way it once did. For the most part I can accommodate that with lists, reminders and alarms on my phone. Unfortunately, this makes it harder to learn new things and despite my best efforts, there are not enough accommodations in the world to help me remember new information. When I was in my early stages of TBI I struggled to do two things at once (i.e. stir a pot of boiling pasta and listen to music). Although this has improved over the years it is still a struggle for me. At work, if I’m typing in my password on the computer, right as someone says “hey Jen” I’ll either forget my password or forget to answer them.
✦Dizziness: dizziness has been a symptom since day one. When I was first hit I couldn’t even walk without my head being against a wall. I couldn’t sit up straight either, I needed my head leaning against something. Six and a half years later, if I’m standing for too long I get dizzy and need to lean against a counter, wall, cabinet, etc. I’m more comfortable laying down and letting my head rest against a pillow than I am sitting upright. Some days the dizziness is fast and furious and makes me sick. On those days I’m too dizzy to do much of anything. Other days it’s just small bursts of dizziness that come and go.
✦Sensory Issues: my brain can no longer filter out useless noise so I hear everything all the time. This is not only exhausting but it puts me into sensory overload quickly. Noise, lights, and motions all put me over the edge. Sunglasses help with lights and headphones with calming music or noise-blocking headphones help with noise. You may or may not notice me taking deep breaths often, this can be because of the pain or because I’m overloaded and I’m trying to calm down. Everything around me is very overwhelming.
✦Weakness: I soon realized after my TBI that 1. I had a lot of weakness that wasn’t there before and 2. my body did not recover from exercise the way it once did. The weakness seems to be here to stay no matter how much I exercise or lift weights to build muscle. Thanks to the process of elimination, I have learned that protein drinks post-exercise help my body to recover faster and if I forget to drink it I notice the next day because my body is extra tired and extra sluggish. Besides all over weakness I particularly feel weaker on my left side. I also feel it takes my left hand longer to do what I want it to do (i.e. pick up a fork off the counter).
✦Kaleidoscope Vision: because of damage to my brain and a constant migraine I have what I’ve dubbed “kaleidoscope vision”. There is zero rhyme or reason when this happens but it comes on quick and can last 10 minutes or two hours. When it happens my clear vision suddenly disappears along with shapes and all I’m left with is distorted color, it’s like looking through a kaleidoscope. While my vision is distorted I cannot do anything except hope that it passes quickly. It has been brought to my attention that right as this is starting my pupils dilate quickly then go back to normal. There is no treatment to stop this vision issue, it simply is what it is.
✦Whole Body Pain: our bodies are not meant to meet a SUV at 30 MPH and walk away without issues. My body hurts…all the time. Because my whole body hurts I often clench my jaw or tense my shoulders but this only creates more pain in the tensed areas. I often put my tongue between my teeth if I feel I’m clenching (this stops me from clenching my jaw too much) and throughout the day I purposefully pull my shoulders down to stretch them.
If you made it this far, thank you. As I said in the beginning, this is a glimpse but after reading this, I hope you have a better understanding of why I say “a Traumatic Brain Injury is much more than just a migraine”.
Confessions of a Concussed Cyclist: the story of a cyclist living life with a Traumatic Brain Injury (TBI) 