Life with #LongCovid: The Ringing
One of the most persistent side effects of COVID-19, now almost 15 months later, has been tinnitus (ringing or humming in the ears), which has been accompanied by vertigo and hearing loss in my left ear.
Tinnitus impacts a surprising number of people. An estimated 32% of Americans alone have some level of tinnitus, and that number is much higher in folks who worked in music like myself or cranked the up the volume in the car like my dad (close to 50%).
A recent study showed that 15% of ALL people who had COVID-19 reported tinnitus as a symptom. 7.6% reported hearing loss, and 7.2% reported vertigo, which is also related to the ears. Tinnitus is emerging as the most common symptom among COVID long haulers alongside brain fog and chronic fatigue.
I’ve had a low level of constant ringing and a little trouble hearing in my left ear for nearly 20 years now, but when I got COVID-19 in December of 2020 it got much worse, and continued to worsen over 2021 to the point where the ringing was at times drowning out all other sound, giving me severe headaches, and keeping me awake at night.
What causes tinnitus, and especially to the degree I’ve experienced, still isn’t fully understood. For me it’s likely a combination of poor ear care in my youth, stress, neurological issues, and actual structural damage to my ear as the result of the virus — which I’ll get to.
At first I tried to ignore the ringing, but as it continued to worsen and was joined by bouts of the room spinning wildly and me having to yell “What?!” far more frequently, I finally sought care specifically for this issue. I had been focusing on other symptoms first, but this became untenable.
The initial attempt to treat was using a drug called Amitriptyline. It’s an old antidepressant that is now often used to help with sleep disorders, migraines, and tinnitus. It came with gnarly side effects for me. Not only did it not stop the ringing, but it caused me to rapidly gain a significant amount of weight, and it made the dizziness *worse*. Coupled with other side effects I was experiencing from Long Covid and other medicines this was…yeah, it was not fun.
Next, I went for a full evaluation with a wonderful audiologist who confirmed I that I indeed was experiencing hearing loss, followed by an equally wonderful Ear, Nose, and Throat doctor, who discovered that the virus had attacked my sinuses and my left inner ear.
The phrase “burnt forest” was used.
A frank conversation was had about the likelihood of my hearing never recovering in that ear. We decided to try a last ditch effort to “save” the ear, and I started a round of new medications to help the sinuses that f*cked. Me. Up. If you are ever prescribed Prednisone, proceed with caution.
For the hearing I underwent a short procedure called a Trans-Tympanic Dexamethasone Perfusion. They numb your ear drum, then stick a needle filled with a strong steroid through your ear’s membrane into the inner ear. The room spins like you’re on a teacup ride for about 20 minutes, then you taste metal for 5 days.
I was prepared by the doctors that in my particular case there was only a 20–30% chance that this would work, and work it did not. The ringing stayed, and another test with the audiologist confirmed no improvement in hearing.
In some cases if the injection doesn’t cause significant improvement, a tube will be placed in the ear drum, and you spend time giving yourself the steroid in the ear 2x a day. I was advised this probably would not help me, so thankfully my ear is tube free for now.
Now at this point I was confronted with the fact that my ear will continue to deteriorate somewhat rapidly. When discussing this with the doctor, I felt more at ease than I did upset. For one, it’s a great relief to know what’s wrong, and at least take steps to attempt to improve the situation. Second, I always expected I’d need ear surgery or a hearing aid or something some day, so when that day is — now or later — makes no difference to me.
After yet another consultation with the audiologist, we decided to try a new form of acoustic therapy to address the tinnitus. Called Notch Therapy, a pair of devices you see in the picture above attack tinnitus on two fronts: 1) enhancing the auditory environment by amplification, 2) suppressing the tinnitus with something called enhanced lateral inhibition.
So where most hearing aids just accomplish number 1 — essentially “turning up the volume”, the concept behind Notch Therapy is not to “drown out” tinnitus, but to teach the brain how to ignore it completely. We did some calibrations to match the frequency of my tinnitus and through these devices the amplification of the sound is “turned down” and relegated to background noise, making it easier for my brain to ignore. Essentially we’re tricking my brain to not hear that frequency any more.
A few days in I can already notice improvement, but it’s going to take many months and maybe years until the final outcome — ringing is gone without the aid of the hearing devices — takes hold. Of course I’ll still need to address the hearing loss, but hey, this is a great step forward.
So why am I sharing all of this with you?
Well for one, we as a society underestimate the time, energy, and financial burden necessary to pursue medical care. In TV and Film, doctors know everything and have the perfect treatment right away and the patient heals up by the end credits, with everyone smiling and hugging or whatever.
In real life, it’s an often cold, lonely, and stressful process. Especially nowadays. Medical professionals are beyond burnt out (quick plug to get vaccinated and boosted please), and I’m simply amazed they’re able to give of themselves anything at all. I’m using my experience to hopefully elicit compassion and patience for those of you struggling with health or for others in your lives who are.
Second, I want to acknowledge the work of healing is not over once physical symptoms are addressed. There is a heavy mental toll involved in not feeling well, and in recovery. PTSD is real and not just a symptom of combat veterans.
I plan to get into this more in my next post, which will include some things I’ve learned about myself along this entire journey, plus some wisdom and inspiration from others, including in no small part my friend Leigh of @extraordinary.podcast (listen with care), and the folks over at @checkyourheadpodcast.
Until then, I encourage you all to talk to someone if you’re struggling or reach out to a friend or family member who is. A simple “Hi, how are you?” can do amazing things.
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