The Journey to Understanding Tinnitus or 'Bewitched Ear'
When I woke up with ringing in my ears one morning back in 2014, I didn’t think much of it at first. It was the kind of ringing you get after going to a concert or spending time at an amusement park. The kind that usually lasts for a few hours, maybe a day tops.
This ringing went on for days though — and I hadn’t been to a loud concert, nor had I braved any roller coasters in the weeks leading up to it. I booked an appointment with an ear specialist, who told me that what I had was tinnitus — the cause of which is difficult to define, because it’s not a condition in and of itself, but rather, a symptom of one. That said, there was no cure for it, they told me. Maybe it would go away on its own. Maybe it wouldn’t.
After our appointment I culled through any resource I could find, from documentaries in Spanish to articles on Healthline to online message boards. The forecast was mostly negative, echoing what the ear specialist had said to me … that you simply had to live with it.
And so I tried to. I bought a fan to drown out the noise at night. I downloaded a white noise app at night to help me sleep. I accepted that maybe the ringing would be a permanent companion. After about a month and a half though, the tinnitus resolved.
Throughout the next few years it would come and go intermittently — usually after a night of drinking, or during the time of month when women experience hormonal changes. It would never last for more than a few days though, so I didn’t think much of it.
In March of 2020, the first day of shelter in place, tinnitus punctuated the start to our global pandemic — sounding like a fire crackling next to a whooshing waterfall. This time it didn’t go away after a few days. This time time it stayed longer, and then longer. As the shelter in place order extended, so did the tinnitus.
It’s still here today.
According to researchgate.net, tinnitus is an age-old condition. A papyrus back in the 17th Egyptian dynasty (1650-1532 B.C.) referred to those who live with tinnitus as having a “bewitched ear.”
An estimated 50 million Americans (15 percent of the general public) experience it. Twenty million live with with chronic tinnitus (the kind I have), while two million live with debilitating cases of it, according to the U.S. Centers for Disease Control and Prevention.
Chronic tinnitus is slightly more common in older people; I know few other people my age who have it.
Here are some things you may not have known about this mysterious, but surprisingly common condition:
It’s a symptom, not a condition on its own.
As mentioned earlier, there are a multitude of potential underlying causes that result in tinnitus as one of their symptoms.
Some people find that it comes on after exposure to loud noise (this form of tinnitus is usually accompanied by hearing loss). Others don’t experience hearing loss, and their tinnitus can be attributable to hundreds of different causes — some of which include nutritional deficiencies, low stomach acid, thyroid gland dysfunction, allergies, or damage to the head affecting inner ear membranes and bones.
A patient I once interpreted for said that whenever he gets tinnitus, he believes it signals that something bad is about to happen. One time shortly after it came on, his beloved dog passed away.
Similar to a screaming kid who doesn’t have language skills yet, I believe that our tinnitus is trying to tell us something as well. It’s just that we don’t know exactly what yet.
Causes are extremely varied, and treatment will depend on the cause. Symptom management is the most commonly prescribed treatment.
Tinnitus with clearly identifiable causes, such as earwax accumulation or fluid buildup in the ear, is easily treatable. A couple of years ago during one of my recurring bouts of it, all it took was cleaning out my ear to eliminate it (the nurse who performed the procedure was my guardian angel that day). Many other times though, the underlying cause is elusive.
Because of this, treatment is focused mostly on symptom management. Doctors I saw recommend controlling sugar and alcohol intake, reducing caffeine consumption and taking care of general health. White noises machines to distract from the noise at night were also suggested. So were tinnitus support groups and I’ve also since subscribed to several tinnitus podcasts.
It can come and go.
As I mentioned earlier, the condition came and went intermittently throughout the past few years of my life, usually never lasting for more than a few days.
Many people experiences temporary tinnitus. Friends of mine have said they get it after going to a concert, but that it fades after a few hours.
Tinnitus might be linked to gut imbalances or dysfunction in the body.
One member wrote in the TinnitusTalk support forum, “Food intolerances can be a huge contributing factor to tinnitus, due to the gut-brain connection. This is not some hocus pocus crackpot theory — some scientists call the gut the “second brain” due to the number of neurotransmitters in the digestive system. And the nervous system is connected to tinnitus.”
I’ve heard some people describe the gut-brain connection as the brain “empathizing with the gut” which I think is both apt and endearing. Even though this isn’t exactly how the science of it works, I imagine the brain, when the gut’s not doing well, commiserating and sending out its own stress signals— be that through depression, anxiety, brain fog, or ear ringing (some tinnitus originates from a problem in the ear, other times it’s an issue with the brain).
The fact that my intermittent tinnitus over the years often followed nights of heavy drinking would seem to support the gut-brain hypothesis, as both the the beer and the snacks I pigged out on once the drunk munchies hit were high in gluten (which severely damages a Celiac’s gut).
It’s also interesting to note that the night before that morning back in 2014 when I first got tinnitus, I’d eaten a giant pasta dinner paired with three glasses of red wine at a fancy Italian restaurant.
After my Celiac diagnosis, I felt such relief thinking that quiet could go back to being the refuge it had once reliably been for me. Though I hoped that a gluten-free diet would eliminate my tinnitus, unfortunately it still hasn’t gone away. However, I was just diagnosed with another gut condition (SIBO) that may have also gone undetected for several years — so am hopeful that treatment for this might be the answer.
Tinnitus is hard for introverts and quiet worshippers (or at least for this one right here).
When I was a kid, few things were more peaceful for me than the quiet that filled the classroom while my peers and I shared in an introspective moment. During writing workshop, the only noises that filled the classroom were the gentle gnawing of wire cage bars (our class pet was a chinchilla) and the occasional bell ringing in the distance. I relished in this.
It’s during quiet moments that my most lucid thinking occurs. The thoughts in my head are clearest, most sensical and most transferable to written form when the noise of the world has dimmed down.
When tinnitus came along it permanently altered my relationship with quiet.
Peter Popham, a British journalist with tinnitus, wrote: “Find yourself in a tranquil beauty spot and the blasted ringing is impossible to ignore.”
For someone who’s loved quiet enough to even list it as an interest on one of her dating profiles, the realization that I may never again experience a moment truly absent of noise was a hard one to accept. Quiet is the space introverts escape into. Taking quiet away from us is like taking mountains away from a hiker, or vocal cords away from an extrovert.
It’s possible to habituate to mitigate effects.
Coming to terms with the transformation of a refuge into a state to be distracted from and drowned out proved difficult at first.
Luckily, I did habituate eventually though.
While it’s still annoying, I’ve found ways to be introspective and cultivate pensive moments, even with a constant hum of background sound. And when I’m talking to a friend or immersed in what I’m doing, I don’t even notice the tinnitus is there.
Neil Bauman, PHD, writes that the trick is to “remain emotionally neutral towards your tinnitus and ignore it.”
“Treat it like a totally meaningless sound, such as fridge noise — something you actively have to listen for before you can even hear it because it is so meaningless to you. If you can treat your tinnitus the same way to treat ‘fridge noise’, you should not have much of a problem with your tinnitus.”
Facebook support groups, where participants around the world offer insight and coping tools, have provided some relief.
White noise machines really help too, for sleeping. Of all the “channels” you can select, I find the ocean waves most conducive to somnolence. A campfire option was available, but that one just seemed stressful to me — especially with all the wildfires burning through the state at that time (my brain began to encode crackling fire as a sinister sound).
Tinnitus can significantly detract from quality of life, and very little research has been done on it to help alleviate the challenges.
Even though I’ve learned to more or less (sometimes begrudgingly) coexist with it, mine still annoys me from time to time. For other people, it causes even greater challenges.
One member of the Facebook support group wrote: “If people knew how many people suffer with this and the toll it takes mentally and the suicides then maybe more would be done and doctors would stop acting like it’s no big deal.”
Another wrote: “I’m 32 and I got diagnosed with T last week. The doctors were like there is nothing you can do and there is no cure, okay bye!!! I was in tears and went home and had a full blown panic attack.”
Still another wrote: “One thing’s for sure — tinnitus is annoying and the medical profession does not seem to have any treatment for it.”
Prognosis for those with tinnitus
Is there hope for us? I’d certainly like to think so. One significant roadblock we face is that there are very few true tinnitus specialists who feel qualified to dig deep into the root cause. As mentioned before, most ENTs default to “symptom management” when prescribing treatment, because of the sheer enormity of the task that investigating the hundreds of possible causes would be.
The roots of tinnitus are complex and difficult to pinpoint, and I’m still in the process of untangling it all. For those who also live with tinnitus, I encourage you to keep being patient. We may not know our cause yet, but that doesn’t mean it’s not out there, waiting to at some point be uncovered.
I can only hope that increased visibility and discussion will result in wider research and resources for the many people across the globe who are plagued by a bewitched ear.
Photo credit: Tatiana/Getty Images