December 22, 2012

Surviving Tinnitus

I woke this morning from the year's longest night and thought about my own 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 a roar too, 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 realised what was happening: the ringing, crashing and whining was 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 smart fellow who knows how to research, I immediately jumped into action and went to my GP, who sent me to a leading ENT who specialises in tinnitus management, taking the text book for Tinnitus Retraining Therapy (TRT) with me (Abebooks & Fedex can do wonders). He was surprised, of course, 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? That 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 sudden onset of tinnitus in men in their late 40's with family histories like mine. My own hearing loss? Minor in the big scheme of things; in a use-it-or-lose-it scenario, singing helped preserve my hearing—as did the Tomatis Listening Training—even if 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 and 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 that he didn't want to say yes, but couldn't exactly say no either. 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. This was a stealth attack in the middle of the night.

Auditory fatigue? Possibly. I hadn't taken an antibiotic or a cold medicine which can sometimes induce 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.

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 initial highly charged emotional reaction, my world 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—measurably speaking—only about fifteen decibels and that my mind was ramping it up so that it filled the universe. But that knowledge didn't help me. I was hit broadside and left reeling. I thought I wouldn't be able to sing; I thought I wouldn't be able to teach; I thought 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 first person I saw after my onset, the same guy 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 certain I didn't want to take a drug. "Sometimes drugs are the only game in town" came his reply.

He put me on 2 mg's 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's—the maximum dosage. So I got off it, biting my pills in half, and then in quarters, experiencing stomach cramps and headache 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 own 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 more than 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 practising a Buddhist meditative technique called Tonglen which enabled me to sleep after I stopped taking Klonopin.

I could write a lot about Tonglen, since it's been a very powerful tool in my recovery. The practice creates "space" around thoughts and reactions which seem concrete, a very necessary thing for someone like me who felt caught with no way out. If Klonopin was the doorway, Tonglen helped me walk into a new life, one which 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 cancelling 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.

The photo above is my grateful survivor look. It was taken a year and a half after that terrible night. For the first time in a long time, I was happy. While my survival is difficult to fully account for in a couple hundred words on this page, the relief of being able to cope and to 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 tell my doctor all this, and he tells me I need to write a book. What I know is 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. 

8 comments:

  1. It never occurred to me that there might be a connection between opera and hearing loss. But I took a hearing test lately that showed a pattern consistent with noise-induced hearing loss, a "notch" between 3 kHz and 4kHz. Not complete loss at that frequency, but significantly lower acuity. Should I blame Turandot? Hard to say. Thanks for this thoughtful article.

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  2. Thank you for your comment, Bill. You may be interested to know that Tomatis did his original research on factory workers and opera singers in the late 1940's, and observed the same "notch" between 3 kHz and 4kHz (see his book "The Ear and the Voice). He called it occupational deafness. Should you blame Turandot? That's a good question. I certainly wouldn't rule it out. However, you would be hard pressed to find a audiologist who would state that in a court of law. That said, the growing understanding of this issue may explain why the European Union now has standards (and limits) for exposure to loud orchestral sounds. Any sound above 90 decibels that is sustained for more than 15 seconds is potentially damaging. It is when the notch gets deep that problems with pitch in singing can ensue. However, there are exercises that can ameliorate this effect. I am planning on presenting a workshop that will include them. All best regards- Daniel

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  3. Hi! I found this post in the middle of a tinnitus crisis. Thank you for your words. I hope you are still doing ok. It's not fair but, I guess it is what it is. Have a nice year and life!

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    1. Dear Infeccíon—I am doing quite well, thank you for asking. Hang in there, and be good to yourself, ok? And let me know how you are doing. Daniel

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  4. Hi Daniel,

    This is a voice from your past. I was very glad to come across your article. I have had this same problem for some time now as well. Having visited my GP, an ENT (on several occasions), both to no avail. I am very glad to see your recommendation of the hearing devices. Vanity, I am ashamed to say, has kept me from pursuing this option further so far. I do know from the visit with the ENT that I have minimal hearing loss, hereditary as is yours.

    Don McCoy

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    1. HI there, Don. See my post on hearing aids here: http://www.voice-talk.net/2013/03/singing-hearing-aids.html

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  5. I have another onset due to noise AGAIN, but im going to my ENT today again, my tinnitus is just a hight pitch noise but drives me nuts! I had a dose of celestone last time i went to the doctor and took some actron(iboprofen for inflamation) some steroids and ginko and helped a great deal, im going today again, it is very inspirational to re-read your story so i came back to read it again, thanks again, blessings!

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    1. Thank you for your comment, Ray osorio. For me, the key has been to manage my reaction to T, and that has taken practice, which, in my case, was/is the "heart" practice of Tonglen. Best wishes to you on your journey.

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I welcome your comments.