My Dumb Ears

 

I have been conflicted about writing this for a long time, because I don’t know if any good will come of it and it’s not a happy story. But for my well-being and others going through it I feel I need to express what I’m going through at the moment and hopefully bring a tiny bit of awareness to a poorly understood problem that is steadily affecting more and more people, and a problem that medicine is failing at offering livable solutions to. I also want to stress that I am OK and have a great support network for handling this stuff.

When I was 23 I was in a bad place mentally. Senior year of college had been extremely difficult for me and I came out of it suffering from clinical depression. I never really did the work to get through it before moving into another stressful environment when I took my first job with Epic Systems in Wisconsin. The experience there could not have been worse for me; the responsibilities of a full-time job that required bicoastal travel and managing training for multiple hospital systems was just not something I was ready for at that point. I could tell I was not going to last in the job and the stress and anxiety that came with it sunk me even lower.

I went to see a therapist and he immediately recommended I begin taking antidepressants. I wish we had tried other therapeutic solutions first before jumping right to drugs, but I know antidepressants have helped a lot of people in my situation and I do not blame him for suggesting I start taking them at all. I was put on a low dose of Zoloft to start to see how I would feel and react to it. The details of the first and only night I took it are burned into my brain. I swallowed the pill, went upstairs to watch an episode of Gold Rush Alaska (I did say it was 2013 right?), watched Parker Schnabel and his family clear a new patch of land for mining, saw Parker’s dad tell him “shake your brother’s hand” after finishing clearing the land which I thought was kind of weird, and then a switch flipped in my brain and my life changed forever.

A fluctuating electronic sounding high-pitched buzz was emanating from inside the right side of my head. It was a totally alien sensation unlike anything I’d ever experienced. I googled side effects of SSRI antidepressants and saw that, for a very miniscule percentage of patients, they experienced ringing in the ears or tinnitus, a term which I was only vaguely familiar with. I looked further to see how many hours I could expect it to last before it would go away, but a deeply unsettling theme emerged: everyone who was posting about it said it would not go away. Ever. The drugs were ototoxic, and had caused permanent damage to the inner ear.

Of course, I tried to put this out of my mind and told myself that I’m sure most people who experienced it had it go away quickly and weren’t posting online about it. I would just have to wait it out. When I woke up the next day and it hadn’t improved, I thought I’d probably be good in a week. In a month. In a year. Relief never arrived, and I had to accept that I was stuck with it for good.

When I started what would become a recurring cycle of visits to ENTs I learned that the treatment options were bleak. “Habituation” was the theme. Listen to white noise. Distract yourself with other activities. Read a self-help book. Meditate. Put sound generators in your ears to block out the noise. Take anti-anxiety meds or antidepressants (LOL). There was nothing they could offer to make the sound stop, but they could make you feel better about it. That was the pitch.

The medical understanding of tinnitus is shockingly basic and incomplete. It’s caused by damaged hair cells in your inner ear. Except maybe it’s not, and it’s caused by brain damage. Or insufficient blood flow. Or maybe it caused by TMJ disorder, itself a not very well understood phenomenon affecting the jaw, ear and brain. Maybe all of the above. My symptoms certainly did not fit the textbook definition for the condition. I hadn’t been listening to loud noises when it started and I wasn’t hearing a single fixed tone in my ear, I was hearing a weird alien sound from inside my head that would go up and down in volume. There were some days it was barely noticeable at all and some days it was so debilitating I couldn’t get out of bed. I remember telling this to an audiologist during one of my many hearing tests and her looking at me quizzically when I told her my tinnitus wasn’t noticeable that day, then continuing the test.

After a brief stay in an inpatient facility when the tinnitus first started I quit my job and emerged from my two-year depression. I had many happy years afterwards and many wonderful experiences that I wouldn’t trade for anything. The tinnitus was always there, and while it made life more challenging, I could handle it. Even listening and working on music, the one thing I enjoyed more than anything else, was still a big part of my life, if not quite as enjoyable as before. Then in the spring of 2017, new problems started appearing.

I had a pretty bad external ear infection in my right ear and when it passed I noticed something odd. Normal sounds that never used to be bothersome before were suddenly too loud. A fork landing on the ground would make my ear seize up and cause mild pain. A dog barking would force me to cover my ears. I quickly realized I had developed hyperacusis, a condition about 10% of people with tinnitus experience where everyday sounds become intolerable. It was far more debilitating than the tinnitus. In the next year and a half both the tinnitus and hyperacusis would spread to my left ear as well.

To put it bluntly, waking up every day with severe tinnitus and hyperacusis you do so understanding that you will be tortured continuously. Usually mildly, usually to a degree you can go about your every day life as normal. Not always. Sometimes you will find yourself trapped in an environment too loud to tolerate and have to leave in a panic. Sometimes the sounds in your head are so loud all you can do is lie in bed with pillows covering both ears and just hope and pray it stops.

Anything you did or enjoyed in a moderately loud environment is no longer accessible to you without ear plugs. Bars, movies, even hanging out with your friends in your house are no longer stress-free activities. And you’re acutely aware that any second a new issue could suddenly appear without warning and send you spiraling.

I moved to Rochester in 2018 to work on learning music production and planning to release my own music for the first time. Each year as my problems have gotten worse I have found less and less joy from it. This year I’ve barely worked on it at all; the unpleasantness of hearing what I’m making in distorted tones and the aural dangers of working with recording equipment have in large part taken away what was once my greatest passion in life. I still plan to release what I’ve been working on eventually but it’s going to be bittersweet when I finally am able to finish it knowing I can’t fully enjoy it.

Two weeks ago, a new problem appeared. No warnings, no inciting incident. Sounds in my right ear are now overlaid with a loud beep. It’s similar to microphone feedback. Everything I say and hear is smothered by an A flat. It has only gotten worse in the two weeks since it arrived. As far as I can tell this new problem doesn’t even really have a defined medical term; searching for it will just give you results for tinnitus. But it’s a different experience entirely. I pray it is the last new problem, just like I have with every other one. I’m not holding my breath.

I know I’m laying it on pretty thick here, but the point is this is a debilitating problem for myself and many others. True, effectual treatments for tinnitus, hyperacusis related hearing issues remain elusive. Very little has changed since I first started experiencing this in 2013. A new treatment called Lenire which uses a combination of sounds and pulses delivered through the tongue to change how your brain processes sound and lower the volume of tinnitus has had some promising if mixed results. It has been accessible to Europeans for the past four years, but we are still waiting for it in America. A clinic in Florida offers a procedure to treat hyperacusis that also has encouraging results, but it has not gained widespread acceptance and most ENTs will not perform it.

This has to change. We need more research, and better and more accessible solutions. Frankly any doctor with tinnitus patients who can offer them nothing but a CD of relaxing music, ineffectual sound generators and breathing exercises should be embarrassed. Not that it’s their fault; medicine as a whole is failing us. I have read too many stories online of tinnitus sufferers who have attempted self-harm, something I would never (NEVER) do but completely understand. This problem is only going to get worse as generations who had much more loud noise exposure than any before them get older and start to experience the same issues I’ve described.

Next week I restart the cycle of ENT and TMJ specialist visits for my newest problem. I really hope it gets better.