As I shook, my friend led me down an unlit path along what I was sure was a rocky cliff of some sort down to the creek below. She illuminated the way forward with the mediocre light from her phone. Around me, people were encouraging, “You don’t have to be scared, we got you!” I wasn’t scared, but the shaking continued. I kept apologizing. My friend, the voice of reason, reassured me that her mom shakes when walking in the dark too … but I could never remember why, I was just concentrating on taking one step at a time.
Looking back there were so many signs that something was awry, but in my mind they weren’t connected. It wasn’t until I was diagnosed with bilateral vestibular loss as a result of ototoxicity — toxic effects to the ear caused by medication — that I was able to see how they were connected. There are a few things you’re prepared for when you have cystic fibrosis: the inevitable infections, lung pain, chronic postnasal drip, feeling exhausted before, during, and after hospitalizations … you get it. I thought I’d been prepared for everything. I even knew I could experience hearing loss from antibiotic use one day, we are told that. I didn’t know I could lose more than my hearing.
Balance issues have long been part of my life. The only time I ever scored in varsity lacrosse was at a pre-season game while I was standing completely still, I was passed the ball and I lobbed it straight into the net, twice. The game didn’t even count, and I never scored another point. My superlative at the end of that season was, “Recovered From the Most Injuries.” I was always tripping, rolling my ankle, or getting hit in the face with the ball. I just couldn’t tell my brain to get out of the way fast enough.
Going downstairs one morning for breakfast I suffered an incredible migraine. The room spun, I couldn’t see, I was nauseated and I felt like all I could do was fall to the ground in pain. The first time that happened it lasted 48 hours. It happened again and again. The first doctor I saw for it told me I just needed more sleep and that there was really no reason my mom should have been carrying me into my appointment. I needed a second opinion. I requested to see a neurologist who had managed my ocular migraines. She ordered the vestibular testing that gave me a name for what I’d experienced for decades.
Ototoxicity is “when a person develops hearing or balance problems due to taking a medicine” used to treat cancer, infections, or other illnesses. You can see where this applies to cystic fibrosis. At the time of my diagnosis as a 29-year-old, the testing technician at the brain center told me I had “significant” bilateral vestibular loss. He told me not to Google it so I wouldn’t get the wrong impression, but I would need to return the same day to be evaluated for physical therapy.
I, of course, Googled it immediately. I learned vestibular loss is loss of part or all of the balance system in your inner ear. People struggling with vestibular issues can experience dizziness, migraines, vertigo, shaking while walking on uneven surfaces and at night, neck pain, frequent injuries, blurred vision, disorientation, and more. The more I read, I knew with certainty that I had suffered from this for more than two decades. So much so that I simply thought my clumsiness was part of my personality, not a severe underlying condition.
I can’t emphasize enough how much of a relief it was for me to receive this diagnosis. I’d always shaken while trying to walk in the dark. Going to the beach was one of my favorite things to do, but I always felt so sick afterward.
Turns out walking on the uneven surface of beach sand can be one of the most challenging landscapes for people with vestibular issues to navigate.
Learning cystic fibrosis played a part gave me something I could tangibly grasp. I am lucky that I was already seeing a neurologist who immediately knew what to do when my dizziness started interfering with my life, after my primary care had written me off; clearly there was an issue. Having a diagnosis meant I could go through vestibular rehab therapy and gain skills that would help me compensate for the loss of balance in my brain. It’s enabled me to stand with my eyes closed and not immediately fall over, walk in the dark, and helped me reframe the thoughts that I had let define me.
Despite bilateral vestibular loss being a severe, crippling disability, on top another disability, in the eight years before my diagnosis I had run two half marathons, graduated college, taught myself how to ride a unicycle (and gracefully fall — I had lots of practice) and held full-time jobs. Since my diagnosis I have had a baby, have never used a cane (although my physical therapist says I should have one just in case), and have developed many coping mechanisms (good and bad) to make up for this one area where I lack.
I have since learned about the things that could cause permanent damage to the vestibular nerves: aminoglycosides. If you recognize that word, it’s because it’s a class of antibiotics commonly used to treat CF exacerbations. In speaking with my CF team, we concluded that I had experienced ototoxicity as young as 11 years old. But it may have happened earlier and was only compounded over the years due to tobramycin and gentamicin use. Looking back, I wouldn’t trade those antibiotics for anything. They saved me at the times when I needed them.
In writing about bilateral vestibular loss, I want to provide a lifeline to anyone else with CF who has been suffering like this. It is severely debilitating to be disoriented, dizzy, and have migraines, whole-body pain, and ringing in your ears. If my story sounds familiar, please reach out to your CF care team and get help. If you don’t have CF, send my story to your friend with CF, or your friend whose son or daughter has CF. There is hope; there are therapies to help those with vestibular symptoms. You don’t need to wait until your dizziness interferes with your life, or the ringing in your ears prevents you from hearing: please inform your care providers and ask for a referral to see a neurologist if you are at all concerned.
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