Anyone here like me??

crps369

crps369

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What I mean is did anyone lose their hearing as an adult?? Was it because of an illness?? I lost mine due to Autoimmune Inner Ear Disorder. I'm having some issues trying to adjust, and I was just wondering if I was alone...
 
I was born with a hearing loss as well. Sorry to hear you lost a chunk of it. How are you handling it??
 
I was told I would be deaf when I was older so I was ready for it. I sign, my husband signs, my kids are learning. Some things have been hard but I still have my hearing aids that can help a little. I am hoping to get a service dog here soon.
 
crps369 said:
What I mean is did anyone lose their hearing as an adult?? Was it because of an illness?? I lost mine due to Autoimmune Inner Ear Disorder. I'm having some issues trying to adjust, and I was just wondering if I was alone...
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I was diagnosed with AIED back in 2015. It's a rare thing, apparently. My symptoms are a little different, and I'm not deaf yet, so I can't really offer any advice (I'm more likely to ask for it), but it's always good to talk to someone who shares my condition.
 
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crps369 said:
I was born with a hearing loss as well. Sorry to hear you lost a chunk of it. How are you handling it??
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How did they determine that you have autoimmune inner ear disease? Could your hearing loss have resulted from something else - perhaps a continuation of your congenital loss, as in DNM's case?
 
Double-U said:
I was diagnosed with AIED back in 2015. It's a rare thing, apparently. My symptoms are a little different, and I'm not deaf yet, so I can't really offer any advice (I'm more likely to ask for it), but it's always good to talk to someone who shares my condition.
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You can talk to me anytime about it.

Double-U said:
How did they determine that you have autoimmune inner ear disease? Could your hearing loss have resulted from something else - perhaps a continuation of your congenital loss, as in DNM's case?
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I went through a lot of testing, but I think it was a blood test that confirmed it. Sorry I can't remember everything, it was almost 11 years ago when I was diagnosed. No my hearing loss from birth was due to being born with pneumonia and then having severe jaundice. Or at least that's what they said anyway. AIED is pretty rare, I've never met anyone that has it before. What all have you had done, treatment wise for it??
 
DeafNerdMommy said:
I was told I would be deaf when I was older so I was ready for it. I sign, my husband signs, my kids are learning. Some things have been hard but I still have my hearing aids that can help a little. I am hoping to get a service dog here soon.
Click to expand...

I should have prepared, but there was nothing in my area for me back then. Now we have a Community Center for the Deaf and they are teaching me and my family sign language. My husband is better at signing then I am lol. He's been around deaf kids since he was around 16. So none of this is new for him. If you don't mind me asking, what does a service dog do??
 
crps369 said:
You can talk to me anytime about it.



I went through a lot of testing, but I think it was a blood test that confirmed it. Sorry I can't remember everything, it was almost 11 years ago when I was diagnosed. No my hearing loss from birth was due to being born with pneumonia and then having severe jaundice. Or at least that's what they said anyway. AIED is pretty rare, I've never met anyone that has it before. What all have you had done, treatment wise for it??
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I met two or three other AIED patients when I went to the House Clinic. The blood test you took was probably to detect something called Heat Shock Protein 70 (HSP70). That's how I found out I have it, too. There is some controversy regarding HSP70 as a marker for AIED, though.

Treatment? My case is more... hydropic. I have attacks of sudden hearing loss that last for hours and then subside. After the first time it happened in 2015, I was given a couple of intratympanic steroid injections because my otologist assumed it was sudden sensorineural hearing loss. A few months later, it happened in my left ear and thankfully didn't result in the kind of permanent loss I had in the right ear. I was on prednisone for about four months after that - a nightmare I hope to never repeat. It wasn't very effective, either.

Otherwise, I've tried about a million things, including lymphatic massage, which was an embarrassing little adventure, to say the least.
 
Wow that kind of treatment sounds familiar...except the massage. I also had attacks of sudden hearing loss. It was very frusterating wondering when the next attack might strike. After a while I gave up on all treatment but the injections...even though they didn't help much. But they were better than the pills.
 
crps369 said:
Wow that kind of treatment sounds familiar...except the massage. I also had attacks of sudden hearing loss. It was very frusterating wondering when the next attack might strike. After a while I gave up on all treatment but the injections...even though they didn't help much. But they were better than the pills.
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Wondering when the next attack will occur saps pretty much all of the enjoyment out of life. It's hard. Were most of your losses the result of these episodes? Or was it more gradual?

Do you still have some residual hearing? If so, I've discovered a couple of things that seem to help prevent the attacks, and to mitigate them if you take action early enough.
 
Yes my losses were due to the attacks. No I have no residual hearing. At first I thought it was another attack, but it never came back. About a week later I failed my hearing test. That was in October of last year. Since then I have been scrambling trying to learn sign language and adjust. It's harder than I thought it would be...
 
crps369 said:
I should have prepared, but there was nothing in my area for me back then. Now we have a Community Center for the Deaf and they are teaching me and my family sign language. My husband is better at signing then I am lol. He's been around deaf kids since he was around 16. So none of this is new for him. If you don't mind me asking, what does a service dog do??
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I lucked out with my hometown. I was raised by my states deaf school. A hearing dog basically tell a deaf or hoh person when there is a sound. They can be trained to alert when the phone rings, baby cry, someone at the door, and even if some one is walking behind you or calling for you.
 
DeafNerdMommy said:
I lucked out with my hometown. I was raised by my states deaf school. A hearing dog basically tell a deaf or hoh person when there is a sound. They can be trained to alert when the phone rings, baby cry, someone at the door, and even if some one is walking behind you or calling for you.
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Wow that is amazing.
 
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