Tuesday, October 18, 2011

The Start

Too be fair, we need to start at the beginning

It appears that I was born with a hearing disability, and to cut this story down to size, let me just say that until my early 20’s, my issues were limited to the occasional loud “ringing in the ears” and a noticeable hearing loss. As time droned on [pun intended], the tinnitus became worse.

From about 25 to 35, the noise would get so loud that I could not hear anything else at all. Nothing, nada, zip; except the noise that chose to manifest itself those days. Usually it was just a roaring, clanging noise or the like. But other sounds would often get mixed in, recognizable stuff like music, conversations, gunshots, tires screeching, etc. At some point, I decided that these noises were “hearing memory”. At times the sounds would become debilitating to the point where all I could do is breathe, literally. The volumes of these “real” sounds would be at “normal” levels compared to the other stuff, still loud though. This would last a few minutes to a few hours, sometimes as long as a day.  Then they would go away and all was well with my world. Until the next time.
I never said anything about these new noises to anyone.

LOL, if I did, they would be calling the nearest loony bin!
I use to [use to] scale all this like: 1 – 10 freight trains, average being 3-4, with 10 meaning I was hiding somewhere until they passed. This has long since change.

During the ages of 35-42
I began to experience all these symptoms on an ever more frequent basis. Episodes were happening on a yearly basis and lasting longer each time, sometimes up to a week. No longer able to average it out to 3-4 trains, my averages were now more like 6-7 consistently. Also increased in frequency/volume were the “normal” noises as well. Volume levels became so loud for both types of noises; it became difficult to be on a phone without using a headset with volume control to overpower what I was already hearing. Relying more and more on reading lips to communicate too.
42 to 47:

On average, the “attacks” were coming nearly monthly now. Sleep has become ever more difficult. Anytime I listened to people, they were sounding like they were in a hallway, at a distance. Or like they had their head in a tin bucket. The best way I could describe those times were it was like you just had a firecracker go off very close to you and caused everything to sound funny. But people sounded that way all the time. On top of that, I had to pick out what they were trying to say from all the noises going on in my head!
47 to Present:

One day about 2 or so years ago, the final assault began.
I had an episode were the noise took over and to this day it has never relented. The only way I can truly describe the way everything sounds to me these days is: Ever see Charlie Brown on TV? Remember the classroom when the Teacher was talking? Yeah, you guessed it. Wah, wah, wah. Now I have to interpret the Wah, Wah’s or read peoples lips. No more telephones. Volumes vary still, but they are way beyond the 10 train limits consistently now, WAY beyond. Just for the tinnitus part now, it is as if there are those chiller/evaporators with the huge fans you see outside of office buildings. One on each ear. As for the “normal” noises, nothing like jumping out of bed in the middle of the night to check to see if your wife was just shot. Or listening to songs you really hate, and at full volume, like “and the beat goes on…“, guess you know the one, LOL.

Needles to say, I do not sleep very well. Typically an hour or two at a time, with periods of extended 3-4 hours out of sheer exhaustion. Concentration has become an issue and I am unable to work at anything that requires extended periods of concentration or thought.
Suggestion: If you cannot find it, look in the dishwasher or the freezer. Maybe even in the bathroom trash. It is bound to be somewhere!

These descriptions are very basic and what I hear is varied in volumes, pitch and intensity. Sometimes I think I can even feel the sound pressure, though I do not see how that is possible.
What my wife and I have tried:

In an effort to find a solution to this we went to a world acclaimed hearing specialist, did all the tests, only to have them shrug their shoulders and say, “we don’t know…” Sure they want me to try this drug or the other, but they tell me in the same breath that these drugs are meant for an entirely different purpose. However, “we” have heard that it also has this side effect. I don’t think so Dave, I am not willing to take a drug that is designed to accomplish one thing in hopes that this “reported” side effect may also happen to me. They also are conducting studies that is an attempt to address these issues.
These studies are to find out if it is possible to retrain the brain in how it hears sound.

It seems that my earlier mention of “hearing memory” is a close description of what they think is happening I just did not know what the possible reasons may be. Our brain seems to expect to hear a certain amount of noise. If you have a significant amount of hearing loss, they think the brain feel as though it needs to make up the difference. What I have always called “hearing memory”. It produces recorded sounds and plays them back for you. Nice gesture, but I sure wish I had control over what was played back!

Tinnitus does not help too well with hearing loss as it produces a catch 22. You have a hearing loss; noises are loud, so you turn up the radio to overcome both. Causing damage to the hearing, this is complicated by the tinnitus. So you turn up the volume. Lather, rinse and repeat until you brain decides it needs to make up for the missing sounds it expects you to hear. Now you have a hearing loss, noises from tinnitus and your brain grasping for real noises.

The study I mentioned intends for the test subject to wear advanced hearing aids that have a multitude of sound channels that can be adjusted individually. Each channel would be tuned to a different sound according to what you are hearing. In effect, this is very much like noise canceling technology.  Each channel would then cancel out, or reduce the sound level at the very least, one noise frequency range. Multiply this by as many channels as you need. Then set the hearing aids to actually act as their intended purpose magnifying the sounds around you. Once that is accomplished, you go in each week for a tune-up and retraining session.

Now for why I know this is not going to work in my case [negative I know, but its reality]:

Noise in my head does not remain at constant levels of volume or frequency. Literally varying minute by minute. Adding new sounds and others fading away. Noises that are sudden, like gunshots as just one example, are simply beyond the control of the study. They are constant enough that they need their own channel, but there is no way to tune it for them. Also, the tuning has to totally rely on the subject [Me] to be able to tell them what they hear and at what volumes, the frequency level, etc. I just simply find that nearly impossible, nearly. I cannot say it would be impossible, but can you tell me how a hearing disabled person would be able to truly tell someone what a sound is? Much less pick it out of a mess of other sounds?

Conclusion?

Decide to get up every day and make a choice to be absolutely wonderful.

 Breathe.

Do all you are able to.

Breathe.

Sleep when you can.

Breathe.

Lather, Rinse, Repeat.

Sometimes you get a really good day and get a LOT accomplished! I look forward to those days now.

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