Amidst the Pain of Post-Concussion Syndrome, PA Girl Finds Herself

{Editor’s note: I am constantly amazed when I hear the stories of people who deal with PCS in school. As someone who inherently knows the misery involved with PCS because I deal with it myself, Alyssa’s story is heartbreaking for me. I am heartened though, by her maturity beyond her age and her resilience. I know that she will be successful as she moves forward in her life –Jay}

doudsMy name is Alyssa Douds. I am 18 and live in the Pittsburgh area.

Growing up, I was a tomboy. I played basketball, volleyball, softball, and I bowled. I had many friends and always kept busy! I always pictured myself growing up going to school for volleyball and majoring in sports management. Two days before my eighth grade year in August 2009, my mom, my friends, and I went to an arcade. Who would have ever thought that going to an arcade could change your life?

The arcade game “The Vortex” fell on my head. I tried to duck, but it smashed the back of my head. Right away, I knew something was wrong. Everything was blurry and I just wanted to throw up. I didn’t even know what my name was! My mom took me straight to the Emergency room. The doctor told me that I was fine and that every hit in the head wasn’t a concussion. Two days later was my first day of eighth grade. I went to school and kept coming home every day with a headache! I felt really confused and lost walking the halls. I still wasn’t myself. My mom called my primary doctor and they referred us to the UPMC Concussion Clinic.

My appointment was 2 weeks later. Just the act of being in school for the first 2 days after my concussion made my problems even worse. I didn’t realize that using my brain that little bit could set me so far back. When I went to the Concussion Clinic, I took the ImPACT test. Then we realized how bad my injury really was. All of my scores were as low as they could possibly be. Then, my doctor tested my eyesight and balance. After that, the doctor started listing all the specialists that I needed to see.

The doctor pulled me out of school, and I had to have a home tutor who would work with me (on my good days) when I could do some school work.  The Concussion Clinic was just the beginning of my journey. Goodbye friends. Goodbye sports. Goodbye to the old Alyssa I used to be. All I wanted was to be alone in my room, in the dark, in my bed. For 9 months, I was alone in my house. It seemed like every single day I was at the doctors. It varied from my concussion doctor seeing if my ImPact scores were improving to pain management and trying to get rid of my headaches. From getting hit in the head so hard, my neck had twisted vertebras, and dozens of trigger points. I had eye dis-convergence, meaning that my eyes wouldn’t stay focused together when I tried to look at something, so I had to do eye therapy!

My balance was off, so I had to go to vestibular therapy multiple times a week. Then, on top of all those doctors, I had a neurologist overlooking all of it and treating my occipital nerve damage in my head. My home tutor would come before or after appointments 2-3 times a week, only for as long as I could handle. Sometimes that would be 10 minutes. I missed out: I missed out on friends. I missed out on school activities. I missed out on sports. Seeing my parents learn, and try to understand what was going on made me feel even worse. Seeing your parents cry over you is a huge disappointment. I felt as if I was letting them down. I hated my sister telling my 3 year old niece to “be quiet”, or “leave your aunt alone she has a headache”. It’s something no one in my life knew anything about. As time went on and I wasn’t getting better, it felt like doctors were questioning me; like I was lying to them.

Multiple months went on and nothing was getting better. All of my medicines were just making me worse, causing more problems. I was losing more and more friends. I felt like everybody forgot about me. Doctors thought I would never get better and I thought that I was going to live the rest of my life trapped in my room feeling lost. I couldn’t even go to the mall just to walk around because the lights and movement of everything around me just made everything worse.

At night, I would sit there and wonder if I would wake back up. Why am I even alive? I would rather be dead than deal with this. Who wants to live this way? As time went by, my headaches started to fade. I was released to go back to school for a couple of hours each day. My ImPACT scores were still not as high as they should be, though. My teachers could still see I didn’t completely comprehend what I was learning and something still wasn’t right. I would stay after school every single day trying to get help on my work.

I finally went to see a psychologist who teamed up with a doctor from California. The doctors came in to do a functional MRI where I had to sit in a MRI machine with goggles on looking at a computer screen doing simple tasks and simple math problems. That way, they could test what parts of my brain were being used. They found that my working memory was permanently damaged. That’s why learning new things, doing multiple steps, and backtracking is so difficult for me. I was excused on all state testing as well as all the mandatory testing everyone needed to move on to high school. That really held me back from everything in school and what I wanted for my future plans.

In 9th grade, I was able to go back to school full time. People talked, and talked, and talked about me which made things a lot harder. I had to ignore all the rumors and realize who was really there for me. It was hard adjusting to just waking up going to school!

In May 2013, my junior year, I was sitting in school, tilted my head back, and hit my head off the corner of the wall. It wasn’t even that hard of a hit. Since I had this concussion before that never fully healed, all my symptoms came back again. Right away, my head was hurting and I knew something was wrong. The school nurse sent me straight to the emergency room. Since then, I’ve lived each day with the same headache that will not go away. I started missing a lot of school. My classmates would comment on why I wasn’t in school most of the time.

More medicines still were not fixing anything, so I started to get more treatments. I tried acupuncture three times, but it didn’t work. I had a nerve branch block on my right side. That didn’t work. I had 36 nerve blocks through my head. Those just made my head hurt even more. I’ve had way over 100 trigger point injections in my neck, yet they still come back. I would put myself in the emergency room to get “migraine cocktails” to try to get relief. My images were not showing anything: no bleeding or anything else on my brain, so what could it be? Doctors were at a loss, and had nothing else to do, so my parents took me to Buffalo, NY, for more options. There, they said I needed neuro-chiropractic work done.

I went through 4 chiropractors until one could finally help me. I still to this day get nerve blocks, and get chiropractic care for my neck. I was put in exertion therapy to try to get physically active again while dealing with my headaches, but medicines were making my heart rate go too high and my blood-pressure go too low. What does it take for me to finally leave all this in my past?

The day I never wanted to be here rose upon me: senior day for basketball. I couldn’t stop crying. I always pictured my parents walking me out and my family would be there to support me, but I couldn’t play. That was disappointing. My coach and team knew everything that was going on with me, but she still gave me a jersey to be part of the team and help keep my spirits up. I would sit on the bench with earplugs in and sunglasses on because the movement, noise, and lights bothered me. Other students and even the parents of players from other teams would point at me. I realized they were talking about me but no one knew what I was dealing with.

At our basketball banquet, my coach gave a speech and presented me with the courage award, which was a really big deal to my parents and I! My teachers in school didn’t even understand me. My teachers would call me out in front of the whole class, which embarrassed me. Teachers would yell at me saying they already explained to me what I had to do. They didn’t realize how easily I forgot when, in reality, part of my memory isn’t working!! I don’t want to stand out and let people know I am “different” or have problems. I wish I could wear my sunglasses everywhere without people judging me. I didn’t want anyone to know what was going on with me or that I did not have to take tests like the rest of them. It all started to bother me. It bothered me more than it should have. I was so stressed out about dealing with a headache every day- no matter what. Where was I going to go to college? What would I major in? No one in my school was helping me like they were supposed to. All I had was my mom.

I was depressed about everything that I go through every single day. No one can truly understand me, wake up, and see the days the way I see them.

My body started fighting my body. Strands of my hair were just falling out. My hair got really thin and it was starting to get very noticeable that I was losing my hair. I had a weird rash all over my arms, and my weight kept dropping uncontrollably. My head hurts so badly that I can’t just put my head down to sleep. Then, I can’t function the next day.

Graduation day was finally here and it felt like the biggest accomplishment. I struggled so much to get to this point. I lost so much in my life and I could not wait to get out of that school. People who were supposed to love me were using my “brain damage” against me. Girls were making fun of my weight, constantly dealing with teachers who didn’t understand- I just couldn’t wait to leave!

Now, I go to a therapist and talk once a week about depression. I’ve learned to be proud of myself and the issues I have. I shared my story for the first time in front of school nurses and coaches with the PA BrainSTEPS team because people do not realize how important and serious a hit in the head can be, whether it’s sports related or not. The summer after graduation, I requested a meeting with our superintendent and Special Education department to let them know how I was treated. Hopefully, by speaking up, other students can receive more help and not go through what I had to. I still get headaches every single day and feel sad sometimes, but I learned to hide it and keep moving forward. I will never be that Alyssa I used to be, though, and it will be a long road to recovery. Five years later, I still go doctor to doctor looking for help. I may look normal on the outside, but on the inside is a different story. Thats the biggest problem with head injuries! It’s like I almost wear makeup and get all dressed up every day and use it as my mask. I still have some flashbacks of everything happening to me.

The doctors that I have now are like my best friends! My mom gives me Imitrex shots as needed and we are still looking for other treatment options. I will be starting school at a career institute with extra help and assistive technology on my computer. Eye doctors have made me special tinted magnifying glasses for reading and on the computer as well as special darker lenses in sunglasses.

I’m not the old Alyssa I once was or wanted to be, but I have found myself.

I’m going to try to get signed with a modeling agency, but most importantly continue to raise awareness and help people with brain injuries. I have a couple of friends and that’s all I need. The most important thing to me is family because they will always be there through everything.

I have found that the point is this: You can’t control what happens in your life and you have to believe that things happen for a reason. As hard as it may be to accept your life changing, this is your life still, so let it make you a better person and make the best of it. It’s very lonely and no one understands unless they have been through it.

Learn to be proud and remember to love yourself. No matter how you feel, put a brave face on, get up, get ready, and NEVER give up.

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