Surviving Tinnitus

I woke this morning from the year's longest night and thought about my journey through the dark. If that sounds a bit over the top, well, it was.

On March 6th, 2007, I woke around 3 AM and heard bells clanging, banging, and crashing together. There was also a roar, accompanied by a torrent of sound and the whine of jet engines. Disoriented, I thought a plane had crashed into the building, and the bells were some kind of alarm. A second later, I realized what was happening: the ringing, crashing, and whining were inside my head. 

I can sit here and write about it calmly now, but that night, my face was ripped off. I went into a downward spiral that lasted for a little more than a year. It was hell. Sheer hell. Being a clever fellow who knows how to research, I immediately jumped into action and went to my GP, who sent me to a leading ENT specializing in tinnitus management—taking the textbook for Tinnitus Retraining Therapy (TRT) with me (Abebooks & Fedex can do wonders). He was surprised when I pulled out the book after he had examined me, telling me that he wished all his patients were so informed.

What did the good doc tell me? My family history of hearing loss—my grandfather, father, and four siblings all being affected—was an indication that my condition was genetic: he'd seen the sudden onset of tinnitus in men in their late 40s with family histories like mine. My hearing loss? Minor in the big scheme of things. In a use-it-or-lose-it scenario, singing helped preserve my hearing. So did a course of Tomatis Listening Training, even though the occupational hazard of singing in an opera house was a concern.

Tinnitus: from the Latin word tinnitus meaning "ringing", is the perception of sound within the human ear in the absence of corresponding external sound.

What about the loud tenor I had taught the day before my middle-of-the-night onset? The guy who stood in my living room screamed Puccini, not eight feet from my head. Would that do it, I asked. The good doc blinked and pursed his lips. I could see he didn't want to say yes but couldn't exactly say no. It is hard to pinpoint cause and effect. Usually, the patient goes to a rock concert and leaves with ears ringing: clear cause and effect. But this wasn't like that. It was a stealth attack in the middle of the night.

Auditory fatigue? Possibly. I hadn't taken an antibiotic or a cold medicine that sometimes induces tinnitus, so that was ruled out. Studying my case, he didn't think I needed to have an MRI to rule out neuroma on the auditory nerve. Sure. I could have it if I wanted it for peace of mind,  but a neuroma wasn't likely since I heard ringing in both ears, not just one—which would be the tell-tale sign of neuropathic pathology. Ok. So, no neuroma. He wouldn't have to carve out my ear, perhaps leaving me deaf. That was a good thing, right?

So what next? I expected some kind of treatment, some "go-to" thing to happen, but all that did happen was that he stood up, shook my hand, and said—as said before—that he wished everyone was as informed as I was.

Six months later, I was sitting at the breakfast table telling Mr. Husband that I was going to kill myself—not having slept more than a few hours each night. And I meant it. All that research? All that "knowing"? It didn't do me a damn bit of good. I was stuck in my highly charged emotional reaction filled with ringing. It was louder than the traffic on Columbus Avenue, which registers more than ninety decibels. I knew that the tinnitus signal itself was only fifteen decibels and that my mind was ramping it up so that it filled the universe. But this knowledge didn't help me. I was hit broadside, left reeling, and thought I wouldn't be able to sing, wouldn't be able to teach, and my life was going to end.

But it didn't. I didn't stop singing or teaching. I kept going, even though I planned on throwing myself off the George Washington Bridge. Mr. Husband made me go straight to my GP a few blocks away—the latter being the same doctor who sent me to the ENT. Back I went, not braving it out anymore—telling him I was suicidal, going out of my mind, didn't know what to do, but was sure I didn't want to take a drug. "Sometimes drugs are the only game in town," came his reply. I laugh now at the memory, but it was far from funny at the time.

He put me on 2 mg of Klonopin to take before sleep—so that I could sleep. This hefty dose saved my life, I can say without exaggeration. I stayed on the drug for a good six months until I got used to it. For it to keep working, I would have had to increase the dosage. But my GP didn't think this was a good idea since the medication, which was designed to stop seizures, would very likely cause them if I stayed on it and climbed the ladder toward 6 mg—the maximum dosage. So I got off it, biting my pills in half and then in quarters, experiencing stomach cramps and headaches for a short while.

Six months of drug-induced sleep did me a world of good. So did listening to music. The classical radio station was on constantly when I was in the apartment—my version of Tinnitus Retraining Therapy. My ENT? He didn't think much of the latter, believing—as I did—that simply listening to music would have the same effect. We were right. It took over a year, the sound of my ringing finally going from universe-filling to half a whisper.

Cognitive Behavior Therapy helped, too, as did a stint of auto-suggestion. In the latter, I sat quietly in a meditative state of mind, taking myself back to the night of my onset, over and over again, until I got bored with my reaction. It helped. I also began practicing a Buddhist meditative technique called Tonglen, which enabled me to sleep after I stopped taking Klonopin.

I could write much about Tonglen since it's been a powerful tool in my recovery. The practice creates "space" around thoughts and reactions that seem concrete, which is necessary for someone like me who feels caught with no way out. If Klonopin was the doorway, Tonglen helped me walk into a new life that I didn't think possible (you can find more detailed information on the practice here).

There was one other thing that aided me. A year after my onset, even though my ENT didn't think I needed them, I obtained digital hearing aids. They made a huge difference, not in the ringing per se (a lucky 50 percent experience a canceling out of their tinnitus signal), but in how I experienced the world. They gave back a fabulous sense of stereo, the juiciness of being, which my onset had ripped away.

While my survival is difficult to fully account for in a couple of hundred words on this page, the relief of being able to cope and thrive is immeasurable. I am thankful for the help I received, especially from my husband. Without him, things would have been much more difficult.

I told my doctor all this, and he told me I must write a book. 

What do I know?

THIS.

The mind is plastic. It can change. You can change.

If you are experiencing invasive tinnitus, there are things you can do to help yourself. Whatever you do, don't give up. Scream, cry, pound your fists on the sofa, and decide you are going to live. That's what I did.

You have to start somewhere. 

Photo credit: Jessica Osber Photography 2019.