She of Three

Do You Hear What I Hear? (My Life With Tinnitus.)

It is torture.

A Bitter Pill

My life with tinnitus began after I took a single dose of a common and very powerful antibiotic for a cold that wouldn’t quit. After trying virtually every over-the-counter cold medicine available, I relented and saw a doctor.

“This one packs a big punch,” he said, handing me the prescription. I looked down at the wispy sheet of blue paper and was struck by his beautiful handwriting, so uncharacteristic for a physician. The curves on the “Z” in the drug’s name were mesmerizing. “Your cold won’t know what hit it with this stuff,” he continued. I wasn’t sure if that was a recommendation or a warning.

Was I uncomfortable with the idea of taking an antibiotic for a cold? Yes. Antibiotics treat bacterial infections, such as UTIs, not viral infections like cold and flu. But I was desperate, so I didn’t question the doctor. 

Within fifteen minutes of taking a single, bitter-tasting pill, my left ear started to ring.

I thought nothing of it at first, other than a superstition my grandmother and mother often spoke of when someone complained of ringing in the ear. They were big into superstitions and signs, and seemingly always on the hunt for them. 

In this case, ear ringing was a sign that someone was talking about me. Had it been my right ear, no sweat. Ringing in the right ear means someone is speaking positively about you. But the left? Oh boy, the left was “NG,” as my grandmother would say, pursing her lips and shaking her head. No. Good.

I lay on the couch, barely able to breathe and with a fever inching toward 103 degrees, contemplating all of the people who might have been slandering me and imagining the ways I would exact my revenge. (Because another thing that my elders instilled was never letting anyone get the best of me.)

The longer I lay there, mentally keeping score, the louder the ringing grew, and I began to feel lightheaded. You’re sick, I said to myself. Of course you feel lightheaded. It will pass.

Except it didn’t. A few minutes, then an hour later, the steady “beeeeeeep” that sounded like a heartbeat flatline was still going strong. And was it me, or was the room spinning?

F-Dash-Dash-Dash

I’m usually a stickler for reading a drug’s package insert to learn about potential side effects. Neurotic? Perhaps. But when you’re as sensitive to medications as I am, you can’t afford to be lax. One Benadryl®, and I’m slurring my words before passing out like a drunk after last call (I’m also a cheap date, if that wasn’t already apparent). It figures that the one time I didn’t check,  something like this would happen.

Panic gripped my chest.

I threw off my blanket and dashed to the kitchen. In my frail state, the dash was more akin to a hobble and, truth be told, I nearly soiled my pants from the sudden burst of adrenaline. I pulled the PI from the box and scanned its contents for side effects.

At the end of the long list, there it was in black and white: “tinnitus/hearing loss 0.5%.” Meaning that 0.5% of patients who took the drug in clinical trials experienced this wretched ringing.

Channeling my inner Ralphie Parker, I yelled, “Oh, FFFUDGE!” Like Ralphie, I did not say fudge. Instead, I said the “Queen Mother of all dirty words. The F-dash-dash-dash word.”

I called a local pharmacist, who said that I shouldn’t worry about it and urged me to continue taking the antibiotic because stopping prematurely would render it ineffective. Keep taking it? Was I now hearing voices in addition to this miserable ringing? Was she for real?

I stopped taking it cold. No way was I willing to risk my hearing to rid myself of a sore throat and cough (although I did feel like I was dying).

Weeks passed. The cold went away, but the ringing didn’t, although I wished it would. Coincidentally – or not – I experienced my first ocular migraine a few months after the ringing began. I was angry, and I was scared. How was I going to live like this for the rest of my life?

It’s Only In My Head

That was then. Now, it’s a completely different animal. Saying the tinnitus (or the migraines, for that matter) never went away is laughable. That’s not how it works.

Every year since I swallowed that pill, my tinnitus has grown louder and shriller. I say “my” not out of any affection I have toward it, quite the contrary, but because I have endured it long enough to own it. It is mine. I didn’t ask for it, no one would, but it belongs to me. In this way, I feel as though I can diminutize it, rob it of its perceived power over me. I’m in control of it, not the other way around.

Admittedly, that’s often nothing more than big talk. It still dismantles me at times.

Living with tinnitus is agonizing, tiring, dispiriting. I don’t think anyone understands. But hey, understandable! How can I expect anyone to appreciate something only I can hear? I imagine it must be similar to living with chronic pain. Subjective – not to mention, inaudible and invisible. I don’t doubt that some think it’s all in my head. (Sometimes I wonder if they’re right.)

A Cacophony in the Key of G

A swarm of bees. A shrill siren. Tinny speaker static. A whistling radiator vent.

These are some of the ways I’ve described the sound that screams in my head. But sound is one component – it’s more complex than that.

Let’s play a little game.

Any piano or keyboard players out there? (If not, check out this virtual piano, if you’re inclined). Hit the “G7” note on the keyboard. Hit it again. And again. And again. Faster now, so that there’s no gap between the notes. That’s the pitch of my tinnitus. Now think back to the last time you attended a concert or a loud movie. You know that “hiss” that you hear for a day or so afterward? Mine shrills in the background, on top of the ringing, to create a symphonic effect. Adding more insult to injury, I also experience occasional “popping,” the kind that occurs when your ear is clogged or when traveling in high altitudes.

That’s what I hear in my head. Twenty-four hours a day.

The noise never stops. It deprives me of sleep and gives me debilitating vertigo in exchange. I’m often depressed (a natural state, to some degree, but I know this is a factor that accelerates and deepens the gloom) and irritated. I have a feeling of “fullness” in my head, as if thick air is smothering my brain. It exacerbates my migraine headaches, and all the sensitivities (light, sound) and symptoms (nausea, numbness) that accompany them. I have difficulty concentrating and hearing conversations. I’m exhausted all of the time. Physically, which is surely due to lack of sleep; but mentally, too, presumably because my brain never gets a moment’s peace. Some days, it’s a struggle just to get out of bed.

Some days are lost altogether.

Still, I realize that I’m lucky because know it could be worse. And that terrifies me – because it’s much, much worse now than it six months ago, let alone when that initial ringing sounded. I’ve heard and read horror stories about the agony people endure with this condition, how it robs them of their wellbeing and lives, the unimaginable lengths that some go to silence the noise. I try to remind myself every day, even on the bad days, that millions of people would do anything to be in my shoes.

Full gratitude aside, I do have a hard time. And I fear the day when this heinous ringing does me in completely.

Collecting Mental Shrapnel 

Tinnitus has changed my life in many ways.

For one, it has caused me to become isolated. I can no longer do things that I comfortably did before. More and more, I avoid certain situations and events, out of fear of the tinnitus worsening. Normal activities like going to a concert or the movies, or crowded restaurants or shopping centers are problematic. Spirited family gatherings knock me out of commission for days. Even vacuuming is too offensive to endure (although a good excuse to dodge housework). 

I always have to think twice. Is it worth the risk? Do I have the right ear protection? Will there be a quiet place in the room where I can disappear to? Will I have to leave if it’s too overwhelming? Why even bother.

As a writer who relies on silence to be creative and productive, tinnitus is my worst nightmare. I’d be embarrassed to disclose how long it’s taken me to write this piece. Writing was never this difficult.

I constantly worry about the sound amplifying or changing, or worse, triggering some other unforeseen issue. My mental state is sufficiently peppered with shrapnel from the unholy alliance between tinnitus and migraine  – it cannot endure any more. But here’s the thing: stress and anxiety are my hallmarks, and they are “NG.” They make the tinnitus spike and lay the foundation for what I call “bad ear days.” Those days when the noise is unbearable and it feels as if my head will implode and functioning is a nonstarter.

It’s been said that there’s a connection between tinnitus and depression, and that’s certainly the case for me. The droning on of the noise, the fact that nothing can stop it, that it will only get worse, the loss of control that comes with learning to live with it – all enough to do one’s head in. Years and years without improvement drown the hope of returning to a“normal” life, of being a “normal” person again. In that sense, I’ve already lost more than just a percentage of my hearing.

Above all else, tinnitus makes me feel lonely. I live trapped in my own head, unable – and too skittish – to mingle with the uncompromised living, wondering whether I’ll make it through the day. I am alone yet, ironically, sometimes the noise in my head is my only friend.

Silence Is Golden

I do my best to cope. That means something different depending on the day, sometimes the hour.

I’ve accepted – begrudgingly – that a tinnitus-free future is not in the cards, and that I likely will require a hearing aid (or two – who knows?). Bitter pills, and a bitter pill is what caused this, so it's difficult to swallow, but a reality, nonetheless. When my tinnitus was in its early stages, I wish I had better educated myself on the importance of ear protection. I foolishly put myself in harm’s way on several occasions, failing to realize (or perhaps not taking seriously enough the fact) that exposure to excessive noise for prolonged periods will cause greater damage. I protect my ears almost to a fault now, carrying several different types of earplugs with me at all times. Classic case of better late than never.

Meditation and self-care are two new pieces of the puzzle that have become critical to maintaining my sanity. With better understanding of my triggers for a tinnitus spike and, more importantly, knowing when to stifle them and chill the fuck out (never easy for me), I’m able to pull myself back from the ledge. I use maskers like white noise apps, keep my diet as clean as possible, and take vitamins and supplements. I distract myself with music and exercise and creativity.

Whether any of these things works in isolation or collectively is debatable; it’s just about making it through the day unscathed and, importantly, getting to sleep at night.

The other thing? I try to ignore it. By pretending the tinnitus isn’t there, I don’t give it the power that it demands, and so it can’t destroy me. At least that’s what I tell myself.

But none of this is easy. I falter and I fail. Repeatedly. I keep in mind that habituation is possible, that people eventually learn to listen past the noise and make it appear to disappear. I’m nowhere near that blissful utopia, but I’m determined to get there.

With tinnitus, I’ve often said that I suffer in silence. But that’s not true. It’s silence that I miss the most.