Mikayla Fotino
Concussions/Brain Injuries: 2
Cause: Sports
Mikayla’s Story
My concussion story all starts on January 19th, 2013, at 16 years old. I was playing ice hockey for my high school. I got an elbow on the right side of my head. My head flung towards the left and hit the glass and then flung back and my right side hit into the girl who elbowed me. I felt a little dizzy and got off the ice. I had never had a concussion before, so I wasn’t sure what they felt like. I didn’t go to the hospital that night because I thought I would be fine in the morning.
Well, I didn’t end up feeling better, so I went to the ER. I got an MRI done and the ER doctor said I had a severe concussion. I stayed home from school for a week. During that week I slept for 20 hours a day. The only time I was awake was to eat or take medication and even then, my parents had to wake me up. After staying home from school for a week I went back for half a day for another week, then full time again. By this time, I was feeling like myself again. I was eager to get back to hockey, so I went to the school’s physical therapist and did the Impact test and passed. I was able to go back to hockey.
Everything was back to normal, until February 11th, 2014. I was in my senior year of high school, still playing hockey. The game on February 11th was almost over, there was a lot of pushing and shoving going on. The next thing I know my feet get taken out from under me. I went up in the air and landed on the back of my head. I immediately rolled over and put my hands over my ears. I knew it was another bad concussion. I didn’t even know how long I laid there until the ref blew the whistle. It was a late-night, weekday game and the bus ride home was torture. We ended up in a tunnel and the lights were so bright and with 20 girls in one bus, you can imagine how loud it was. I remember texting my mom that I was almost a hundred percent sure I got a worse concussion.
The next day I went to my doctor, she confirmed it was another severe concussion. Then she confirmed my biggest fear, no more hockey for me, I thought that was going to be the worst part.
This concussion was different from the last. This time I wanted to sleep during the day and stay up at night. The sensitivity to lights and sounds was way worse than the last time. I started wearing sunglasses everywhere I went, even at night. I actually still do to this day. I stayed home from school for 2 weeks this time. Going back to school, even for half a day, was tough. I hated the lights in the classroom and the noise of everyone talking in the cafeteria. I pushed through because my doctor told me the concussion symptoms could take a year to go away. I graduated high school and was on my way to college.
About a month before college, I went to a doctor because the headaches were still pretty bad, and I needed to use an audio book just to get through the summer reading. This doctor did nothing for me. All she did was make me do the Impact test over and over again. She talked about giving me a medication but never did.
So, I went to college and barely made it through a semester. I left college because of the headaches. I went to a trade school for personal training. I did much better there, and I was finally feeling like my old self again. Until, a couple months after the year anniversary of the second concussion. The headaches started to really control my life. I couldn’t make it through the whole school day.
I went to see a neurologist, he diagnosed me with Post Concussion Syndrome and a mTBI. We tried lots of different medications, nothing was working. Next, we tried the Botox injections. I got a round of three. That didn’t help either. My parents found a concussion specialist and we got an appointment with him. Again, lots of medication, but I also did physical therapy on my neck. I did eye therapy on my right eye because it wasn’t turning in causing eye strain contributing to the headaches. I even did occupational therapy to help with getting back to working out. But nothing got rid of the headaches. He suggested I go to a headache specialist.
So on to the next doctor it was. This doctor liked to try herbal medications. So again, I tried medication after medication. Nothing worked and I was sent on to yet another doctor. This neurologist had a different approach, I tried at home injection type medications. I tried two different brands and at first things seemed optimistic. But yet again it faded, so he suggested I try a new medication that was an infusion I would do every 3 months. I tried that and the nurses told me I should feel relief immediately, well nothing happened. So, we did trigger point injections and nerve blocks. The nerve blocks helped a bit and the trigger point injections helped with my neck pain.
One day a coworker of my dad’s sent him an article about a surgery that has helped others with post-concussion headaches. I looked up the doctor and luckily the doctor was in my state. The surgery is Occipital Neuralgia Decompression surgery. There aren’t many doctors who do this surgery, so I was incredibly lucky. So, on September 8th, 2021, I got the surgery. I did see some results, unfortunately the headaches in my temples and forehead aren’t gone but the ones in the back and sides of my head are.
I even tried having surgery on February 14th, 2022, to fix my deviated septum to see if that would help the temple and forehead headaches. It didn’t do anything. I did a lot of nerve blocks that helped for a little while. This doctor gave me a list of neurologists that he works with and that know the surgery and may be able to help with the rest of the headaches. I’m still waiting to go because the new doctor was booking out far. I will see him next month, hopefully he can help.
In November 2022, I was diagnosed with Postural Orthostatic Tachycardia Syndrome or POTS (Get help with POTS in our Living with POTS course on Concussion Connect). The doctor told me I developed this because of the headaches. It’s very tough having an invisible injury because even after 9 years of pain and doctor, medication, and surgeries people still don’t believe me. People think I’m making it up so I don’t have to work or so I can be lazy, but what they don’t know is having chronic pain and a chronic illness is more work than having a full-time job.
Just to go out to the grocery store I have to make sure I have my sunglasses for the sun and incase the lights in the store are too bright, I need my noise cancelling headphones in case the store is to noisy and I need my compression socks to prevent blood pooling because of the POTS. I lost all my friends because I can’t make plans because I don’t know what I will feel like that day. I have chronic fatigue because of the mTBI and POTS. People think I just like to take naps because I’m bored and lazy, but in reality, I have to, or I can’t make I through the day. My brain and body go back to trying to sleep during the day and stay awake at night.
I’m very lucky that my parents and brother are extremely supportive and help me whenever I need help. They drive me to my appointments and are to comfort me on my bad days. This whole journey has felt like one step forward two steps back, but I put my head down and keep pushing and adapting, because there is no other choice.
The anxiety and depression creep in all the time but going to therapy helps and the fact that doctors are still learning new ways to treat concussions and post-concussion symptoms, is something I hold on to.
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Concussion Connect has provided me a space to learn more about what is going on inside my brain and body, find the words to express how I am feeling, not feel so alone, and learn about and use different resources! It provides a sense of being understood that has been missing since my accident, even brings a sense of understanding myself. - CC Member
