Lengthy intro from Newbie, I figure if you're gonna get to know me...

[Hear2much]

...I might as well explain this all now.

Hello everyone! I want to introduce myself and see if anyone out there has a similar hearing issue to me. I do not consider myself hearing disabled- but I am. My hearing is and always has been more than good enough to communicate using speech. My hearing has tested above average most of my life but when I was 20 I began to suffer from a rare condition related to some minor hearing loss. The hearing loss isn’t the problem. I have extreme hearing loss in both of my ears, but for extremely short frequency bands. It is rare. Certain tones are like a dog whistle to my ears, they aren’t really picked up at all. Fortunately the frequencies are different in both ears (my left ear is far worse) so as long as both of ears are exposed to sound I can hear what is going on almost perfectly.

Here is my problem; There are compensation mechanisms in the inner ear that try to adjust for this kind of hearing loss and they have malfunctioned. The mechanism in my left ear is so messed up that it generates sounds whenever I hear anything above say 30 decibels. The sound is best described as the crunching of cellophane crossed with a needle being dragged off a record. For those of you who are deaf, look at hearing people when they experience this or ask them, they will tell you those sounds are horrible and agonizing. To hear them all the time is truly like torture.

I have found a solution that of course isn’t covered by insurance, a hearing aid that will filter out the few frequencies that set this off. Hearing people don’t seem to understand the agony this has caused for me. I am always asking people to speak more softly and it is like they don’t understand that when they talk at a normal volume level I hear these sounds. The perceived decibel level of the sounds is around 95 dB. Yeah, that loud! I also suffer from tinnitus (ringing) and I have not heard silence since the age of 20. My tinnitus is different from most hearing people’s. My ears generate tones! They stuck a small microphone in my ears to test for this. It isn’t in my head or just regular tinnitus, my ears are actually ringing all the time!

I have tried sleeping medication, steroids and a number of treatments to cope with this situation. At one point I actually considered suicide. It took me along time to learn to deal with this physically. For years waking up in the morning and turning on the shower or even a faucet meant hearing noises louder than a rock concert. I had to take blood pressure medication to stop my heart from pounding. If you walked into my room and just said my name, it was like a gunshot going off.

Well enough about me and my problem. I know I will probably never cross paths with someone who has this problem. My ENT Dr. says it is very rare. But it makes me consider my hearing more than most hearing people. I am very thankful I am not deaf, but often times I am very jealous of those who are able to hear silence, deaf or hearing, and I hope no one takes this beautiful gift of silence for granted. If there was a procedure to install and on/off switch for your ears, I would do it instantly even if it risked being permanently deaf and I would “shut off” my ears quite a bit;
To go to sleep, when I shower, when my girlfriend tells me about her day j/k baby!

I know this is lengthy but anyone who wants to really know who I am and why I am here can just read this, and understand just who “Hear2much” is

I am a musician and a composer. I love my ears and I am thankful I can use them as much as I can. But I miss silence, a lot. A few weeks ago I decided I would learn ASL, seek out people who are deaf on this Earth, and I believe I will be one of the most widely recognized advocates for unity in the deaf community and with the hearing community; because of my music, because of my love for sound, my wish to share it with everyone who wants to hear it and because of my respect for all people. ASL is an extremely advanced form of language and communication. I need to learn rom those who know it well. I am going to become fluent in ASL. Fluent! Give me three years, that’s all I need.

A small part of me will always be jealous to think deaf people hear silence, all the time. I have not heard that for a long time, and I have embraced the life I have where I know I may never hear it again.
I have a purpose on this Earth, to share my music with as many people on this Earth as I can, and I will, even if they cannot hear it.
I love you all, even if you are Republican!
(just a joke

PS I can't wait for us to have a nice ASL conversation together. I bet that when we do, I won't need to say "Please be quieter, I have a hearing problem"

 

[shel90]

to AD!

 

[Bottesini]

Welcome, but deaf people are not actually quiet. YOu may be surprised how much noise can be involved in an ASL chat.

 

[deafgal001]

Wirelessly posted

My son seem like he have supersenstive hearing to certain things. But so does my husband. Like father, like son.

 

[Hear2much]

Thanks for the insight Bottesini. I kind of expect that, but not noise like hearing people I hope. Are deaf people going to yell at me and speak over me? I hope not, that's what hearing people do to each other and it drives me nuts. I am a respectful listener. I listen with my eyes and shoulders and my attention, not my ears. I have never had a convo with a deaf person before but what I can hear of deaf people’s speech is not offensive to me. Not at all. There's really no anger in their voices. I know deaf people get angry too, believe me, look at the father in Sound and Fury…. But at least he isn’t screaming over everyone giving them no choice but to hear his tirade. He is expressing his anger but not bombarding people with it. I guess that’s what I meant. Thanks for responding to me, it means a lot.

 

[Tousi]

Hello, and welcome to AD, Hear2Much. That's quite the situation you have with your hearing.....from what I know, the tinnitus usually goes away when a CI is implanted. Not that I am suggesting this; only you can make that determination.

 

[Bottesini]

Hello, and welcome to AD, Hear2Much. That's quite the situation you have with your hearing.....from what I know, the tinnitus usually goes away when a CI is implanted. Not that I am suggesting this; only you can make that determination.

He is hearing. I don't think they will even consider it.

 

[Bebonang]

Oh, you will be surprise how we, deafies, do make noises just because we could not hear what we make. I was watching a movie about a hearing daughter of a deaf mother and deaf father. The daughter did not know that they are deaf and thought the sun is making the noise but when she went to the church which was very quiet with no one around, not even the priest or pastor there. She just sat on the bench and listen to the quiet like a tomb and she saw the sun shining in the altar and realize that the sun is not making the noise at all. She was shock now that she understand that her parents are deaf. They do make noise like slamming the door or clatter the dishes and everything. When Deaf people go to Deaf events, we always pound on the table for vibration to get attention or some other Deaf who shout or talk loudly with signing ASL. They are deaf not know they are making a lot of noise. Like me, I am talking loudly and hearing people cringe at me or trying to tell me to lower down the voice.

Anyway, to AllDeaf forum. I hope you can stay and have fun with us here. See you around here.

 

[deafgal001]

Wirelessly posted

Hello, and welcome to AD, Hear2Much. That's quite the situation you have with your hearing.....from what I know, the tinnitus usually goes away when a CI is implanted. Not that I am suggesting this; only you can make that determination.

He is hearing. I don't think they will even consider it.

The latest if I remember is that doctors are considering using CI to treat tinnitus

 

[Hear2much]

Thank you Tousi but Bottesini is right. No my tinitus would not go away with a CI unless they severed my Cochlea from my Malleus to "deafen" me. I doubt a doctor would ever do this, Yes I am hearing. I am hearing too much! My hearing is actually extremely accurate for quiet sounds. I can hear the difference between a grain of rice being dropped on the floor near me, and half a grain of rice. (The half grain is quieter and bounces more quickly What my ENT is going to do is make me a hearing aid matched to my audiogram to filter out the frequencies that cause this. Until then... ah cellophane.

...And deafgal.... Wow, I can't believe hearing people would go for a CI but you probably know better than I do. I don't believe in surgery for myself. If I had a child born deaf, I don't know that I would get them a CI unless they wanted it. and if that was the only solution for my tinnitus... IDK, I would really need to think about that. I am sure insurance wouldn't pay for a surgery like that for me just so I could stop hearing ringing. There is actually a product called Quietus to reduce tinitus. It works well but I don't want to spend money on that until I get my hearing aid.

 

[Hear2much]

Oh, you will be surprise how we, deafies, do make noises just because we could not hear what we make. I was watching a movie about a hearing daughter of a deaf mother and deaf father. The daughter did not know that they are deaf and thought the sun is making the noise but when she went to the church which was very quiet with no one around, not even the priest or pastor there. She just sat on the bench and listen to the quiet like a tomb and she saw the sun shining in the altar and realize that the sun is not making the noise at all. She was shock now that she understand that her parents are deaf. They do make noise like slamming the door or clatter the dishes and everything. When Deaf people go to Deaf events, we always pound on the table for vibration to get attention or some other Deaf who shout or talk loudly with signing ASL. They are deaf not know they are making a lot of noise. Like me, I am talking loudly and hearing people cringe at me or trying to tell me to lower down the voice.

Anyway, to AllDeaf forum. I hope you can stay and have fun with us here. See you around here.

Thanks for your reply Bebonang. That kinda sounds like fun! I guess I would be one of the people cringing at you but I have never heard a deaf person squeal the way hearing people can like when angry. And not being able to hear your own voice is a pretty good excuse right? The vibrations that Deaf sense are usually deeper tones so even when they use thier voices it is less annoying than hearing people. (I am bothered by higher frequencies)
I am just starting out, but I want to be really good with ASL. I want Deaf people to need to ask me if I am hearing. It is not a fad to me. I am excited at the thought of being invited to a Deaf gathering. That would be awesome!

 

[Anij]

I'm assuming that you've already tried the custom musicians earplugs that are available ?

They are able to reduce over all volume as well as reduce specific frequencies - and would be a MUCH better option to a manipulated hearing aid.

Hearing aids - sound like hearing through a tape deck (not a CD, or DAT tape ... an "old school" tape deck) ... which for someone who is hearing is probably not the best option if something else will work.

I'd recommend talking to your Audie about musician's earplugs (custom ear mould - and request interchangeable flush-mount filters)

At night - and when in quite rooms, a sound machine with white, pink or other "generic" noise machine (or CD placed on "loop") will help with tinnitus noise as well as physically generated noise (you said that the noise you hear is actually externally measurable ?)

 

[Anij]

Wirelessly posted



The latest if I remember is that doctors are considering using CI to treat tinnitus

I could only see this if someone already had hearing loss (moderate-profound) - however it's unlikely that anyone would (ethically be allowed to) intentionally deafen someone and implant a CI with the HOPE that it might resolve the tinnitus ... considering there are many with CI who have some amount of tinnitus post implant.

Seems extreme - when less invasive methods do work most of the time (to significantly reduce most tinnitus)

 

[Griffin]

The sound is best described as the crunching of cellophane crossed with a needle being dragged off a record. For those of you who are deaf, look at hearing people when they experience this or ask them, they will tell you those sounds are horrible and agonizing. To hear them all the time is truly like torture.

Even reading your description makes me cringe! It's really too bad that most earplugs and headphones won't block these low-level sounds (most block above 60dB). The closest thing I've seen is a headset that blocks to 29dB but I have no way to know if that be enough protection to work for you.