Adjustment to late onset deafness

And HOH audis!
 
Thanks

jillio said:
Angle1989,

I'm glad you finally found your way into the late deafened thread, and are feeling more welcome and at home here as a result.
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Just needed some guidance to push me in the right direction. I have found many nice and helpful people.:angel:
 
sallylou said:
And HOH audis!
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I had a HOH audi, first guy I ever went to, and it wasn't a great experience. He also had a high-frequency hearing loss, and he couldn't hear that my HAs were whistling and having problems with feedback. First appointment after my aids were fitted to me, he thought they were fine, I went home, and my mom said "What's that noise?" They were whistling like a teakettle.

Sigh.

He ended up putting glue in one of the ventilation holes. I have a feeling that was probably not a recommended method. :roll:

I found someone else fairly quickly, and never went back to him again.
 
Sounds like 4th of July in my ears. At 2am, I once again awoke with fire cracker sounds popping in my ear. Drives me crazy!!! Plus its paunful. Anyone else get that "holiday" repeated over and over? If so does anything help? Just curious!!!!
 
Angle1989 said:
Sounds like 4th of July in my ears. At 2am, I once again awoke with fire cracker sounds popping in my ear. Drives me crazy!!! Plus its paunful. Anyone else get that "holiday" repeated over and over? If so does anything help? Just curious!!!!
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Never get a fireworks sound myself. What I have going more often than not, if it's not music, it's the sound of ball bearings in a metal pie tin. That really dizzy spinning metallic sound. Right now, I have had that for 16 days straight.
 
Angle1989 said:
Sounds like 4th of July in my ears. At 2am, I once again awoke with fire cracker sounds popping in my ear. Drives me crazy!!! Plus its paunful. Anyone else get that "holiday" repeated over and over? If so does anything help? Just curious!!!!
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No, I don't get this. I do get what sounds like drumming or clicking. Both of these things drive me crazy and I have had to learn to ignore the sounds. Sometimes I also get musical tinnitus or what sounds like voices from a radio station as well. I hate getting that. The voices do not seem to know I'm here at all. I'd worry if they spoke to me cuz then that'd mean I'm losing my mind.
 
I get the music also. At times it can be nice, even though the words are messed up:) my husband gets a laugh out of me when I sing to my songs with the wrong words. I love music and I'm happy I can still sing along!!!! The stupid noises I can do without.
 
Angle1989 said:
I get the music also. At times it can be nice, even though the words are messed up:) my husband gets a laugh out of me when I sing to my songs with the wrong words. I love music and I'm happy I can still sing along!!!! The stupid noises I can do without.
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I love to listen to the music even though I rarely can make out more than a word here and there. I don't bother singing along as I tend to get stares when I do. I also could do with out those stupid noises too!
 
My son just told me that the metallic sound I hear is actually crickets. I have never in my life heard a cricket so how would I know?
 
I guess it would be really hard to explain the noise to your doctor if you were never able to hear them before. That makes me a little sad. The last few days I have been hearing very mixed up Christmas music. I hopefully only sing when I'm by myself. I do catch myself once in awhile singing in the car (which i always did)when my husband is with me. He likes it though. We have had so many funny moments. I'm so happy this illness has brought us even closer. Sometimes you just have to laugh otherwise I cry!!! You all are awesome!!!
 
If you're hearing and you get a cricket in your house, it is so annoying. It's hard to find a cricket. As soon as you turn on the light and start looking for it, the cricket stops and you can't find it. lol
 
Put a sign at your front door, "No Crickets Allowed". :lol:

J/K. I know how it is to have something annoying (not necessarily something I can/can't hear) but just to have something annoying!
 
sallylou said:
If you're hearing and you get a cricket in your house, it is so annoying. It's hard to find a cricket. As soon as you turn on the light and start looking for it, the cricket stops and you can't find it. lol
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Ha ha, they drive me crazy!
 
this happened to us some years ago when I was traveling with my mom and some family friends. I was in high school and did a lot of road trips like this. We were staying in Cairo, Ill in this little motel on a Summer night, that had a number of fascinating traits such as bugs crawling out of the sink and other interesting things and one night we frantically searched for this damn cricket that kept chirping and flopping <we caught him once and then lost him> everywhere in the bed, the room...the heat, the cricket and other stuff made for an interesting night and the trip was actually quite a learning experience....
 
Normally, I do not hear crickets without my hearing aids. However, there was a place that I stayed for a while and there were dozens of crickets inside that were at least 2 inches long. Big crickets! They were so loud I could hear them at night without my hearing aids! :shock: It was really hard to get some sleep!
 
I don't know if any of you have seen my previous posts, but don't "kick" me out for being born with hearing loss versus starting to lose it later in life. :) I wanted to give people an update on myself and I find that there has been a significant amount of change to where I notice a, not insignificant, connection with "late-deafened". That is why I thought this thread would be the perfect one to post in.

When I was about six years old, my parents were told that I had bilateral mixed mild to severe hearing loss, so I was given hearing aids and mainstreamed and that was that. I didn't know what caused it, what areas of my ear were not working, or what my prognosis was. Over time, my hearing declined some (I don't know how much at the time as they never told me), but they made adjustments to my hearing aids and I tried to live my life as normal as I could. Jump forward 22 years to last month. My hearing loss dropped an average of 27 decibels and is now at moderately severe to completely deaf in the higher frequencies. That wouldn't be so bad, but I recently learned there was more. My hearing loss is congenital (not a big surprise, but now I know), progressive, and the problem with my ear is not the outer or middle ear, but the nerve.

Apparently, as my auditory nerve has continued to degenerate, it has been getting more and more sensitive. I've always thought there were a handful of people who had grating voices or things that made annoying sounds, but it's gotten worse over time, specifically in the last six months. Now I cannot stand stand being in my office (a quiet office is around 60 db) or having a conversation (a normal conversation is around 60 to 70 db) while wearing hearing aids. After I complained about some of the noises at work, the group that handles environmental safety recently tested the frequencies in my office and determined that it is in the 50+ db range (within normal range). So here are some of the examples of things that is 50 or more decibels that I cannot stand to hear with my hearing aids: walkmans, radios, TVs, typewriters/keyboards, alarm clocks/timers, garbage disposals, refrigerators, air conditioners, vacuum cleaners, lawn mowers, motorcycles, street traffic, car horns, subways, offices, restaurants, and any form of musical concerts (all things I have checked and know I cannot stand right now).

What that means is, while usually someone in my hearing range would still receive a lot of benefit from hearing aids and be able to function "normally" in the "hearing" world, I cannot use my hearing aids (or the phone without hearing aids) as there are too many everyday sounds I cannot tolerate. Before, I had hearing loss and was able to use hearing aids (with adjustments here and there), and now it is a huge change to not be able to use them at all. Sometimes I feel like it must be all in my head (made up/imaginary) and that I am letting down my "hearing" counterparts by not relying on hearing aids to understand them. My audi told me that it is hyperacusis and, while there are some treatments like 'pink noise', it only helps a fraction of people and doesn't completely return them to their previous levels of sound sensitivity, and it will get worse as my nerve degenerates. I had made peace with my hearing loss and was fine with my decision to not use hearing aids (I had planned a slow change to not using them anymore) when it was my choice, but now it feels like it was ripped away from me and I feel unsure if I am ready for this.


PS: Not hearing-related, but I also recently learned that I have scoliosis (xray confirmed), disequilibrium (VNG testing confirmed), and nystagmus (VNG testing confirmed). That makes me feel better now that my suspicions have been confirmed and people cannot just say that I slouch (I tried not to), am clumsy (I always thought it was more than that), or not paying attention (it was not a conscious choice). And now I can do something about them. I guess various issues like these are not to be unexpected being a premie twin.
 
DeafRaptor said:
I don't know if any of you have seen my previous posts, but don't "kick" me out for being born with hearing loss versus starting to lose it later in life. :) I wanted to give people an update on myself and I find that there has been a significant amount of change to where I notice a, not insignificant, connection with "late-deafened". That is why I thought this thread would be the perfect one to post in.

When I was about six years old, my parents were told that I had bilateral mixed mild to severe hearing loss, so I was given hearing aids and mainstreamed and that was that. I didn't know what caused it, what areas of my ear were not working, or what my prognosis was. Over time, my hearing declined some (I don't know how much at the time as they never told me), but they made adjustments to my hearing aids and I tried to live my life as normal as I could. Jump forward 22 years to last month. My hearing loss dropped an average of 27 decibels and is now at moderately severe to completely deaf in the higher frequencies. That wouldn't be so bad, but I recently learned there was more. My hearing loss is congenital (not a big surprise, but now I know), progressive, and the problem with my ear is not the outer or middle ear, but the nerve.

Apparently, as my auditory nerve has continued to degenerate, it has been getting more and more sensitive. I've always thought there were a handful of people who had grating voices or things that made annoying sounds, but it's gotten worse over time, specifically in the last six months. Now I cannot stand stand being in my office (a quiet office is around 60 db) or having a conversation (a normal conversation is around 60 to 70 db) while wearing hearing aids. After I complained about some of the noises at work, the group that handles environmental safety recently tested the frequencies in my office and determined that it is in the 50+ db range (within normal range). So here are some of the examples of things that is 50 or more decibels that I cannot stand to hear with my hearing aids: walkmans, radios, TVs, typewriters/keyboards, alarm clocks/timers, garbage disposals, refrigerators, air conditioners, vacuum cleaners, lawn mowers, motorcycles, street traffic, car horns, subways, offices, restaurants, and any form of musical concerts (all things I have checked and know I cannot stand right now).

What that means is, while usually someone in my hearing range would still receive a lot of benefit from hearing aids and be able to function "normally" in the "hearing" world, I cannot use my hearing aids (or the phone without hearing aids) as there are too many everyday sounds I cannot tolerate. Before, I had hearing loss and was able to use hearing aids (with adjustments here and there), and now it is a huge change to not be able to use them at all. Sometimes I feel like it must be all in my head (made up/imaginary) and that I am letting down my "hearing" counterparts by not relying on hearing aids to understand them. My audi told me that it is hyperacusis and, while there are some treatments like 'pink noise', it only helps a fraction of people and doesn't completely return them to their previous levels of sound sensitivity, and it will get worse as my nerve degenerates. I had made peace with my hearing loss and was fine with my decision to not use hearing aids (I had planned a slow change to not using them anymore) when it was my choice, but now it feels like it was ripped away from me and I feel unsure if I am ready for this.

PS: Not hearing-related, but I also recently learned that I have scoliosis (xray confirmed), disequilibrium (VNG testing confirmed), and nystagmus (VNG testing confirmed). That makes me feel better now that my suspicions have been confirmed and people cannot just say that I slouch (I tried not to), am clumsy (I always thought it was more than that), or not paying attention (it was not a conscious choice). And now I can do something about them. I guess various issues like these are not to be unexpected being a premie twin.
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I know this feeling. I have my house up for sale and was sure I wanted to sell it when I listed it. Now every time I get a text that there is an offer I'm like :Ohno:

It's a pretty normal feeling I would imagine. Most of us like to make decisions on our terms. I wish you the best.
 
DeafRaptor said:
I don't know if any of you have seen my previous posts, but don't "kick" me out for being born with hearing loss versus starting to lose it later in life. :) I wanted to give people an update on myself and I find that there has been a significant amount of change to where I notice a, not insignificant, connection with "late-deafened". That is why I thought this thread would be the perfect one to post in.

Before, I had hearing loss and was able to use hearing aids (with adjustments here and there), and now it is a huge change to not be able to use them at all. Sometimes I feel like it must be all in my head (made up/imaginary) and that I am letting down my "hearing" counterparts by not relying on hearing aids to understand them.

I had made peace with my hearing loss and was fine with my decision to not use hearing aids (I had planned a slow change to not using them anymore) when it was my choice, but now it feels like it was ripped away from me and I feel unsure if I am ready for this.
Click to expand...

:welcome:
Like you DeafRaptor I was born with a hearing loss. And also like you, I thought this was the best place to post my recent experience of further hearing loss. What you have recently lost is more than hearing - you have lost your ability to be part of the hearing world in the way you were used to. We are social creatures which an inbuilt emotional need to belong - whether it is family, work, leisure groups, etc. And it is a double loss because you lost control of the timing.
 
I want to know what I can expect from my first "specialist" appointment. It's a 3 hour appt is it possible they may find me a loaner HA so I can hear for Christmas. They said bring hearing test so I guess they don't do another one. I'm so looking forward to this appointment and getting the information I need. If you no what else they might have to do, can you please let me know. As of now I have ruled out CI. Just abit much to take on now after my illness. Thanks again.
 
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