Ring, Ring, Ring! Hello? It's Your CF Ears Calling

Have you ever heard that curious folklore that says when your ears ring it means someone must be talking about you? I think it’s safe to say whoever came up with that a long time ago didn’t have CF.  (Definitely not, I’m guessing it was more like they had a bunch of frenemies constantly gabbing about them.)

Here and now, I do have CF and my ears ring from time to time. It happens out of nowhere, continuing for a few seconds but then disappears. The cycle repeats every week or so. Although it doesn’t affect my life much, it is annoying. Unfortunately, it’s caused by antibiotic use and it’s a lesser known side effect of treating CF lung infections. Hence, ring, ring, ring! Your CF ears are ringing.

How does hearing loss in CF occur?

Ototoxicity, including cochleotoxicity (hearing loss and ringing) and vestibulotoxicity (dizziness and vertigo), occurs in some people with CF. The incidence of ototoxicity in people with CF is hard to measure due to a lack of diagnosis and monitoring but is estimated to be as high as 63 percent. The most common type of loss is high-frequency sensorineural hearing loss (SNHL) which is hearing loss at the highest frequencies.^1,2

The use of certain antibiotics to treat lung infections in CF can cause ototoxicity. Aminoglycosides (AGs) such as Tobramycin and Amakacin are common antibiotics in this family. In addition, glycopeptides, including Vancomaycin, are another category of antibiotics that can lead to hearing loss. Risk increases with the number of IV antibiotic courses, doses per day, and the length of use of IV antibiotics in individuals with CF. Weighing the risks versus benefits of using these IV antibiotics is vitally important in CF care.^1,2

Upon researching this, a pit grew in my stomach. I am someone with CF who has used Tobramycin and Vancomycin HEAVILY. Realizing that my antibiotic use is potentially making my hearing loss even worse is a hard pill to swallow. What is one to do? Choosing between your hearing and your lungs (and most definitely your house) isn't an easy decision.

Symptoms of hearing loss

Many symptoms of hearing loss go unnoticed at first until they start having an impact on daily life. These symptoms include:^2,3

• Tinnitus or ringing in the ears
• Hearing muffled speech or sounds
• Being unable to hear words in noisy places
• Needing to turn up the volume on TV
• Being bothered by background noise

In my own experience, the only obviously noticeable symptom of SNHL is periodic ringing in my years. I have recently started noticing I have trouble making out conversations in noisy environments and I am bothered by background noise. However, it is hard to say if it's just due to age and over stimulation from caring for small children.

How to protect your hearing

As I age with CF, protecting my hearing has become important to my overall CF care. A few years ago I had a hearing test which showed minor hearing loss in the higher and lower frequencies. Because of my frequent antibiotic use within the last year, I am due for another hearing test. Some other ways I try to protect my hearing:^2,3

• Get a baseline hearing test
• Get subsequent hearing tests after risky IV antibiotic use
• Use alternative IV antibiotic options if possible
• Keep the volume low on devices
• Wear ear protection around loud noises
• Do not put anything in your ears

Do you have hearing loss from CF? Share your experience below!