Monday, October 11, 2010

Tinnitus

My husband has tinnitus. This medical condition is more commonly called "ringing in the ears." And this post is for those of you out there who suffer with tinnitus, or have loved ones who do. (Or who are just interested, of course.)

Many Americans suffer with tinnitus. Most of them have learned how to cope with the condition, and even learn successfully how to ignore it, except when they are in a very quiet environment. I've talked with many of them. When I say, "Adam has tinnitus," they say, "Oh yeah -- I've had that for years. No big deal." This is rather like a person with some arthritis in his elbow, telling a person with debilitating, crippling arthritis, "Oh yeah -- I've got that too, but I don't find it all that bad." In tinnitus, levels of volume vary, and the degree to which the condition makes someone non-functional can vary greatly.

Tinnitus is technically not an illness, but a symptom -- the person did something, sometime, to damage the inner ear, and tinnitus resulted. Wikipedia (that great, unreliable source!) says that 260 medications are known to cause tinnitus in some people. Most people with tinnitus have no idea what they did to cause it. It just appeared one day.

Adam's tinnitus appeared sometime in February of his junior year in college. He says you can look at his college transcript and tell when it came; he started to fail classes, he dropped out of activities. He went from studying higher level mathematics to barely passing English courses. He had to change his major just to get a degree.

As with any medical condition, it is most important to have a diagnosis. And happily for most tinnitus sufferers, they know what they have. But tinnitus is not always "ringing." There are a wide range of sounds, from buzzing, to humming, to chirping, to squealing. A few people hear actual music. And the tinnitus is not always heard "in the ears." It can be in one ear, in both ears, or inside the head. There hardly seems to be a "typical" tinnitus. Adam's tinnitus was enough "atypical" that he could not diagnosis it himself. His tinnitus is heard throughout his head. (I think I read once that about 20% of tinnitus sufferers have the sound throughout the head.) And the sound he hears is not ringing. He hears a very low-pitched humming or rumbling sound. At least he doesn't have the "screaming pixies" that plague my brother's ears. Adam says that his tinnitus sound could most closely be compared with the sound of a roomful of people after a large event, like a wedding reception, in a large room, all talking. You can't understand what anyone is saying, but there are about 300 voices all rumbling away at once.

Tinnitus often causes anxiety. This is understandable, depending on how loud the tinnitus is. Adam's tinnitus would sometimes be so loud that he could not hear people talking to him. It makes concentration difficult. Tinnitus sufferers get rather good at reading lips, but they also tend to avoid group gatherings, because their tinnitus keeps them from being able to track conversations, identify voices, and respond to questions. It's easier to find a seat on the wall and sit outside the group.

The difficulty is, that tinnitus is also exacerbated by anxiety -- anxiety makes the noise louder. So, some stressful event occurs in life, and anxiety appears. This boosts the tinnitus volume, which creates more anxiety, which makes the tinnitus louder ... a sickening, familiar cycle that leaves the person feeling powerless and desperate. Tinnitus also often leads to depression, sometimes severe or even suicidal depression.

And here we have the difficulty that affected Adam, but also affects so many with tinnitus -- a general inability to do anything long-lasting and constructive. A general failure in life, disappointed hopes, potential lost. I can almost spot men (tinnitus seems to affect men more often) who have debilitating tinnitus. They are gentle-spirited, distant, sad, frustrated with life, talented but giving up. It's heart-breaking to watch. They fluctuate from times of good productivity and enthusiasm, to times of despair, withdrawal, dark depression, worry. Many tinnitus sufferers retreat into a quiet place, desperately hoping to regain the silence that they've longed for, for years.

Adam's story is particularly tragic, because he didn't know what was wrong with him, and was too afraid to see a doctor or get a diagnosis. Tinnitus never occurred to him. With voices constantly whirring in his head, he thought he must be suffering with some mental illness. When anxiety and depression came as well, he felt certain of it.

But even tinnitus sufferers who know their condition grapple with (and succumb to) anxiety and depression. And I'm happy to say that there is help and treatment. For many, they're coping acceptably, and perhaps don't want to go to the trouble of visiting a Tinnitus Clinic and getting help. But for the few out there -- this can save their lives.

We went down the wrong medical road, before we found the right one. How many people have done that, when seeking a diagnosis? We visited a fistful of psychiatrists. They never contested the diagnosis of a mental disorder. I remember one pharmapsychiatrist, a specialist who basically treats you by prescribing you to death. (I won't even go into the huge amounts of useless drugs Adam took.) He asked us during one visit, "So, Adam, how often do you hear these voices in your head?" Adam replied, "All the time." The man stopped scribbling, and looked up. "ALL THE TIME?" He was shocked. I broke in, "Is that unusual?" He said, "I've never heard of it before." Then he looked back down, and continued to scribble. He never questioned his diagnosis, never explored whether perhaps he was wrong in this case -- very wrong.

I remember another psychiatrist, one who I think went into the field in order to continue studying himself. I kid you not. We were almost spent in our search for help. I asked him this question: "Okay, doctor, I know on one end of the spectrum, there is full-blown psychosis. And on the other end there's , um, what do you call that other thing that people have -- when their ears ring? Tinnitus? Yeah -- that's on the other end. Exactly where on that spectrum is Adam?"

He said, "Somewhere in the middle." How's that for diagnosis? Somewhere in the middle. There is nothing in the middle.

Soon after that fiasco, a friend of mine wrote to me. (Thank you, Lissy.) She asked if we'd ever thought that maybe Adam had tinnitus. I said, "Tendonitus? You mean that pain in the elbow?" A lot of help I was!

But she set me hunting, and investigating. Because a tinnitus sufferer can NOT do this himself. He needs someone to help, as any sick person does, when he is too ill to help himself. And I finally found the UNC Greensboro Tinnitus Clinic, part of their Speech and Hearing Department. And those people were miracle workers.

Adam really didn't need much treatment. The man has the mind of a genius, and the stubbornness of a granite wall. All he needed was this: for those Tinnitus specialists to convince him that the diagnosis he'd given himself about 15 years before, was wrong. That instead of having a horrible mental disorder, all he had was tinnitus. That's what he needed. And he found this really, really, hard to believe.

But they finally put a pair of tinnitus maskers in his ears. These are tiny hearing-aid-like devices that simply emit a light white noise -- rather like someone gently saying "Shhhh." He put those in his ears, with only 3 decibels of sound, and his tinnitus instantly disappeared. Instantly. 15 years of suffering, gone! He was stunned. Even he had to believe that a noise you can cover up with 3 decibels of white noise, is not the result of any mental illness.

The long and short is, that he made a quick recovery, and I'm now married to a different man. Granted, we had many difficult years, many disappointments, which God used to chisel away at our sins. Whenever Adam noticed his tinnitus, he'd put the maskers in; he had control over it, rather than it controlling him. That's all it took to send the anxiety fleeing away. After about 6 months, he rarely needed the maskers at all. It's now over 7 years later, and tinnitus is no longer an issue in his life. He's learned to ignore it totally.

I tell our story, to offer hope to anyone out there who needs it, because I KNOW you are there. Really, I'm talking to MY counterparts out there -- spouses of those who have tinnitus. Do something! Don't wait for them to do it. Call a clinic. Look it up on the internet. The simple treatment they offer is called TRT, Tinnitus Retraining Therapy. It involves gradually training the patient to ignore his tinnitus, to accept that he has power over it. Often, maskers are necessary. Tinnitus Clinics are now popping up around the country. Call them -- the money we spent on those maskers was the BEST money we ever spent. Watching someone you love become healthy again is a most precious thing.

Blessings to all who struggle with this condition. May God give you help.

4 comments:

  1. One impact of the Tinnitus Retraining Therapy is that it is harder to tune in to people talking than it used to be. I think that this is because the sound I ignore is in the range of the spoken voice.

    Since I have learned to ignore my tinnitus most of the time, I am not as withdrawn and more engaged with what is going on around me, but I am also grumpier.

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  2. I too have tinnitus in one ear. I can't remember when I didn't have it. I always want something going...fan, TV, radio.....some steady noise to drown it out. Otherwise, it is so irritating!! I find that I read people's lips too. Can't always hear what others are saying and yet it doesn't seem like I have a hearing problem. Liz

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  3. Wow, I had no idea your hubby had Tinnitus, one of my friends was recently diagnosed and I'll have to pass on your lovely words of encouragement. Very well written, if I do say so myself! Of course I didn't expect any less from such a brilliant teacher! :)

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  4. Wow - I didn't know you had this too, Liz. Glad you can manage it! Dawn -- you are a sweet-tee! Please do pass on the info. TRT really does work.

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