Never give up. Don’t let your illness keep you from living your life. Get out and see your friends and family, do things you love and focus on getting better.
I was an active sophomore at Sandra Day O’Connor High School, going to school every day, playing soccer and hanging out with my friends, until one day, I wasn’t. I was sick the previous week with strep throat, followed by a virus, which I always seem to get at the start of the school year. Four days after getting better, on Labor Day, I fell in the shower, landing on my hip, and the vertigo was so bad I couldn’t get up. I called out for my mom and managed to crawl out of the shower to the toilet before I started vomiting. My family had no idea what was going on but we suspected it was from my previous illnesses.
My mom took me to my pediatrician, who looked me over and said that I had a viral inner ear infection. He told us I should take some meclizine, prescribed some Zofran for my nausea, and told me it would pass soon.
A few days later I was still unable to walk without holding on to walls or furniture, and unable to go to school. My mom took me to see an ENT, who did an exam and told me I had BPPV and Vestibular Neuritis. He did the Epley Maneuver and prescribed a round of steroids. I went in two times a week to have the Epley done, but I didn’t feel any difference afterwards. There was also some confusion about which side the problem was on because I was showing nystagmus for both sides.
As the weeks went on I slowly improved and was able to go back to school. The backward spins lessened, as well as the ringing in my ears, and I was finally able to go back to playing soccer at the end of September.
The first two weeks of October I felt normal again, and my parents took me to Seattle for fall break. I was able to hike to see the Twin Falls, Snoqualmie Falls and watch the Houston Dynamo play the Seattle Sounders.
Then, on October 15th, I was getting ready for school and I fell in the shower again while reaching up for the shampoo bottle. The world started spinning backwards like it had done the first time back in September. I was not able to walk at all without help, and the nausea returned. This time there was this constant backwards imbalance and vertigo that would get worse whenever I moved. I didn’t even feel secure lying down. I would pile pillows around me so I didn’t feel like I would spin off the bed. It was worse in the mornings when I woke up, then it would gradually improve as the day went on. I couldn’t walk without a walker in the mornings and I needed a cane to get around the rest of the day. I would get this brain fog, where I would get tongue tied, forget what I was saying or zone out. I would get easily tired after a long day and it felt like my brain was shutting down. Everything seemed to be too much at once. I was so frustrated because I couldn’t play soccer again. I had finally caught up with all the missed schoolwork from September and BAM, I couldn’t go to school at all. I felt like I couldn’t do anything without feeling sick. I had to do all of my classwork online and go in to my counselor’s office to take class exams. I could only go to a class or two a day, and that was on good day, and I had to use the elevator instead of the stairs. I even had some of my teachers come to my house to oversee my fall semester final exams.
I went back to my ENT who still thought it was BPPV but ordered a full auditory assessment including a VNG, VEMP, vHIT, VOR, VVOR. These tests came back abnormal and there was concern with the left posterior peripheral canal and the cerebellum. I was referred to a neurologist at Phoenix Children’s Hospital for evaluation, who ordered an MRI. My scan came back clear and she suggested that I may have vestibular migraines. In the meantime, my neurologist felt like they were not able to help me at Phoenix Children’s and referred me to Barrow Neurological Institute.
At Barrow, we continued the search to find out what was wrong with me. I had a complete blood panel done and a lumbar puncture to look for any inflammatory conditions, CSF pressure and other causes. They did a repeat of all the audiology tests I had before so we could compare them. My bloodwork and lumbar puncture came back normal and my auditory tests did not show vestibular dysfunction anymore. I had a full balance evaluation at the Barrow Neuro Rehab Clinic, including a Sensory Organization Test, Gaze Stabilization Test, a Dynamic Visual Acuity Test, and several therapy sessions to observe what was really going on with me. This is when I finally got a diagnosis of persistent postural positional dizziness or PPPD.
My age has also been a big hurdle in getting treatment because, apparently, itis rare for a 15-year old to get a condition like PPPD, which is often misunderstood. Other specialists have refused to take my case because of my age, and pediatric specialists don’t know how to treat my condition. My parents have spent many hours on the phone and on the computer researching my condition and looking for the right care. VeDA was instrumental in helping them find information on what was going on and how to find the right treatment.
The last eight months have felt like a constant roller coaster, literally. I have had good days and bad days, some days I couldn’t even get out of bed. With the support of my family, friends and therapists, I am improving every day and taking big steps to get my balance back. My parents refuse to let it consume me and try to keep things light and easy. I have goals set for myself so I can continue to improve and my physical therapy sessions are where I feel like I get the most help. I have a blended school schedule where I take my core classes online, then go to my Architecture and Spanish classes on campus. If I could give any advice at all, it would be to never give up. Don’t let your illness keep you from living your life. Get out and see your friends and family, do things you love and focus on getting better.