Adjustment to late onset deafness

cdaigle430

Member
I hope it's ok that I post here. I think you all are much better qualified to relate to what I'm experiencing than anyone I know irl. :)

I am in my mid thirties. I had some ringing in my ears 5 years ago and got a hearing test with an audiologist and the test was normal. A month ago, I had some weirdness in one of my ears (was inconsequential - probably sinus/allergy related) that caused us to do another hearing test last week and I have the hearing of a 65 year old in both ears. Completely unexpected side discovery. Best case, hearing will continue to go at a more normal pace and I'll have hearing aids in 20 years. But if it continues to go at the rate indicated by the space between those two tests, I have much less time.

The ENT dr diagnosed it as early onset age related hearing loss. Clearly progressing more quickly than regular age related hearing loss. He did a really detailed look at all of the parts of my ears with scopes and lights and everything appears to be physically normal. Nothing visibly wrong with tubes, ear drums etc.

I'm more than a little freaked out. I have so many questions about how my life will change. I'm a single mom, my career is just getting to the good stuff, I'm just finally starting to accomplish some life goals. All of that feels up in the air now. The unknown - how quickly or slowly it will progress is terrifying. I have definitely been in self care mode to get through some lowered feelings and anxious thoughts.

I'm combatting lowered feelings by focusing on doing what I CAN do to protect the hearing I have.... learning to use ear plugs, learning which sound levels I need to protect my ears from etc. I also intend to get a second opinion. I'm also looking for resources like this forum to get some sense of normalcy about this process of losing hearing so that it's not a big bad thing I'm afraid of.

I'm a little dumbfounded that there are no treatments or further testing required.. it just is a diagnosis and there it is. So, I have a couple of questions that I'm hoping you guys can point me in the right direction for.

1) Are there other tests that should/could happen to identify possible other causes? I'm intending to ask for a second opinion but I have no idea what an in depth second opinion should look like. Are CAT scans something that should happen? Or... ??

2) If it is age related hearing loss, does it always progress to deafness? To my knowledge there is no treatment for this type of hearing loss - does anyone know of anything I should explore?

Thanks for listening and thanks in advance for any advice.

I had the same symptoms as you in my mid 30s. They key thing is to make sure you do not have something that is manageable or cureable so you can stop or reverse your hearing loss progression. I have had MRIs, CAT scans, and many other test done only to prove that my hearing loss and tinitus is NOT reversable and NOT curable as I had no desease or other outside contributing factor that they could find. At least not with todays medicine-hoping for a break through soon though :)
A CAT scan or MRI picture of your middle ear can determine why you have hearing loss such us the hairs in your middle ear breaking\dieing or some type of desease causing deterioration-it maybe even just sinus issues. By the way-tinnitus ususually is a symptom of hearing loss and you can get some pretty wierd things happening to your ears from phantom noises, clicks, pinging, incoherent voice sounds, vertigo and even pain-fullness in the middle ear area.

No it doesnt necessarily mean you will become deaf as long as you can do what you can to protect what you have. I am in my mid 40s now and my hearing has deteriorated more to the point where HAs are not helping much-thats me and not your situation. Every situation is different.

Keep taking care of yourself and if you have to wear hearing aids in 20 years-so what. Not the end of the world just some new challenges to overcome. Technology will be there to help you in any case.

CJ
 

katrina10

New Member
Losing Hearing

Hello, my name is Katrina. I am 40 and I have been losing my hearing for the past 4 years. It started in my right ear... when I spoke on the phone people sounded like chipmunks. I was told that it was temporary....not. I adjusted quickly and just didn't use that ear on the phone. The next was my left ear... i went to the er and they told me i had water on my ear..or something like that. Couldn't get into the otorhinologist until the following week. When i got there they told me no water on the ear...Meniere's (very dizzy). and so I went on. The left side is gone completely. Next I woke up and couldn't hear anything.... so dealing with that now. They are saying I have neurosarcoidosis so my ear canal is inflammed. The first time it came back slightly but i can't understand words especially in crowed places. Soooo trying to adjust. Haven't been able to get through an interview. Teaching myself ASL.
 

MarkNeu

New Member
Hey everyone. Really interested to see this thread here on AllDeaf. Just joined because of the hassles I've been going through and looking for some people who understand. Here's my story:

I had spinal meningitis when I was 1. It fried the hearing nerves on my left side and my right side gradually grew worse as I got older. I didn't wear a hearing aid until after high school. Heck, no one knew I was deaf in one ear until third grade. I am a creative type and can be off in my own world at time's so it was hard for my folks to tell.
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Kept getting stronger hearing aids as I got older until I got a cochlear implant about seven years ago. It works - to a degree. My comprehension maxes out at 20% or so. I'm still adjusting in different ways to all of it. Kind of hard having a foot in both the deaf and hearing worlds without really fitting into either one.
I'm on disability now working part-time at the local Target unloading trucks. I used to be a graphic designer but after my wife and I moved to NC I couldn't find anyone that wanted to hire me for that kind of work. They were interested when they saw my resume. After they would find out I was deaf then suddenly my qualifications did not fit the position. I'm sure many of you have been in the same boat.
Looking forward to chatting with you all.
 

rmwolfe27

New Member
Hello, everyone. New to the site/forum, and somewhat new to HOH. I started losing my hearing noticeably about 20 years ago, but thought, as did everyone else, that I just wasn't paying attention.

Now, I have digital hearing aids, but they don't quite do the trick. I am trying hard to learn ASL, but am having trouble with recognition, facial expressions, and finger spelling. It's slow going...

I have recently graduated from a college paralegal program, but am finding that most law firms want paralegals to answer phones, interview clients, and take dictation. Which kind of leaves me out. :(

Anyway, nice to meet all of you, and looking forward to learning more about "this."

rocky
 

KikLove

Member
I have recently graduated from a college paralegal program, but am finding that most law firms want paralegals to answer phones, interview clients, and take dictation. Which kind of leaves me out. :(

This drives me nuts as I can relate so badly in terms of law firms! So many firms are like: "I got a law degree...what now? Hahaha!" They run us poor interns and paralegals around everywhere.

I work as an intern in a law firm now and as a law student...it drives me crazy that they don't work with people who are HOH and deaf that well in the office.

Even with my loss I have a hard time getting what some people say on the land-line sometimes (since I can't Bluetooth it to my hearing aids :lol:) and it always seems the clients mumble about why they are there and blah blah blah. :roll:

A judge recently asked me as I'm sitting in court if I needed an interrupter after him first noticing my hearing aids. :laugh2: I was like: :shock: . At least though he asked me nicely if I wanted one. It makes me a bit glad he was checking to make sure. I didn't take it offensively and just laughed a bit.

I wanted to say yes simply to see if they would actually provide one to a legal intern but I'd get in big trouble and it would waste the interrupter's time as I wouldn't understand him/her.
 

reeny

New Member
Hi everyone, I'm not sure if I'm posting this properly or not but I guess I'll see soon enough. I'm a 58 year old woman from BC Canada and am newly deaf since Aug. 31st. I have NF2, lost hearing in the left ear after surgery 3 years ago and on Aug. 31st, I went completely deaf in my right ear in a 6 hour period. The neurosurgeon says it's unusual to lose hearing that fast, but it does happen. I'm not having trouble h dealing with being deaf as I am with my friends and family. At first everyone was all gung-ho to say they would learn to sign. I set up ASL lessons with an instructor and we've had two lessons so far. Only my niece has even learned the first lesson and in 2 days we are going to move on to the next lesson. When I have asked them, have you been practicing? and they give me answers like, oh I've been so busy, i didn't sleep well, etc... sadly even my husband always has an excuse to not practice. When I brought it up to him his response was "oh so now I'm the bad guy!"
I live in a small town here in BC and the nearest "Deaf and Hard of Hearing Centre" is 2 hours drive away. They told me that I am only the 7th person in my community they know of that is deaf. None of them are my age, or women. Apparently they are all very elderly. I'm not looking for a magical solution here folks, just wanting to share. I just find it very lonely and wonder if some of you have had similar experiences when you first became deaf and how you handled it. I'm just finding it very lonely, frustrating, and just want to seclude myself away from the world. I don't fit into the hearing world and would love to embrace the deaf world but there isn't one here! Geez, I sound pathetic I know but I just don't know how to deal with all this.
 
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Angel1989

Well-Known Member
Premium Member
Welcome reeny.....I'm glad you posted and sorry you had to go through all of that. Are stories are somewhat similiar. I went to sleep one night and woke up with a life threatening illness. I lost all my hearing overnight. It has been quite the adjustment. So many wonderful people on this site helped me through the tough times. I gathered so much information and helpful hints from people here.

Good luck and please read through the threads and get to know us better.
 

reeny

New Member
Welcome reeny.....I'm glad you posted and sorry you had to go through all of that. Are stories are somewhat similiar. I went to sleep one night and woke up with a life threatening illness. I lost all my hearing overnight. It has been quite the adjustment. So many wonderful people on this site helped me through the tough times. I gathered so much information and helpful hints from people here.

Good luck and please read through the threads and get to know us better.

Thank you so much for your reply Angel. I've been reading through the threads and I can see I'm not the only one with these same problems. It's a very frustrating and lonely place to be. I'll keep reading, learn my ASL and hang in there and I'm sure things will get better.
 

MonaLisa1992

New Member
You all are free to skip my rant... I have an audi appointment on Thursday and I have so much anxiety around it that it's making me crazy. I'd love to vent to my friends or family, but nobody seems to really understand my standpoint.
I grew up in a hearing family. I am the first one to address a hearing issue- however, my father and sister both exhibit hearing loss. My hearing issue was found/started when I was about sixteen. After multiple doctor visits and hearing tests and the like, it was found that I had cochlea damage on my left side that gave me hearing loss. Over the years, it's gotten worse on that side little by little. As of the past six months, my right ear has felt like it's started to go out on me, too. I'm a little worried. I don't know what would be causing it to go out on both sides. There's a few variables I have to work with- genetics, my mother drinking over pregnancy, I may have underdeveloped ears (They're very small and my ear mold on my hearing aid is tiny!). I have an appointment to get things tested and checked on at a new facility but I am so nervous. I've been through a ton of crappy audiologists and I don't want another. I don't want to be loosing my hearing- even though I work in a group home and work with Deaf patients. I don't want another know-it-all doctor treating me like an idiot. I hate sitting in the sound booth and feeling like I need a xanax because I still feel pressured not to fail a hearing test I already know I can't pass. UGH! Anybody with similar stories or any advice?
 

ambrosia

Well-Known Member
Premium Member
I have progressive loss, otosclerosis. Started in my left ear at 20 my right, around 25/26. It does indeed suck but it's not the end of the world. Don't look at as something you need to "pass" you're not going to get graded ;) but it a tool to deal with your hearing loss better, narrowing down appropriate hearing aids for your loss and to get the best fitting for them.
 

MonaLisa1992

New Member
I know that it's not graded and it's just to help, and then at the same time I'm a perfectionist and can't stand having failed something, LOL. Did you have any backlash from your friends or family when you lost your hearing? I feel like my family is giving me a lot of flack for something I can't help.
 

ambrosia

Well-Known Member
Premium Member
My ex husband never really "got it", we divorced but my hearing didn't have anything to do with it. But no, not really. :D
 

Bebonang

Active Member
What happen to jillio, why has she been banned for good ?

I have not heard from her on Facebook, either. She is busy working on her job as psychologist and maybe, just maybe she will be free to come and post. As being here on AD, I don't know if Alex or the moderators will be able to remember her and erase her ban in her profile. I would love to have her come back again if Jill will be willing to give another try. :)
 

RacherBunny

New Member
Sorry in advanced for the long post... It was mentioned to me to post this here.

So for those of you who may remember me, a few years back I made a post about my hearing issues with the following symptoms:

-mishearing things said a few feet away
- hearing mumbling
-24/7 tinnitus
-not understanding things being said
-having to ask people to repeat
-manipulating my ear placement to hear a little better
- feeling the results say my hearing is better than what it seems like to me
-random episodes of deafness (only loud tinnitus. lasts up to 2min most of the time. one time it lasted an hour.)
-feeling like something is in my ear.
-scar tissue on both ear drums, left is worse than the right, but my hearing seems better in the left.

Anyway...
The passed 1-2 years I feel like I've either had more developing symptoms or have been noticing them more.

I've been stressed more, especially since last Feb, so I think this could be why my symptoms seem to be flaring up.
-random deafness episode number increased from 1-3 a month to maybe 5-6 month.
-dizziness for a small amount of time. happens while standing, laying down, sitting, etc.
- ability to concentrate and be patient seem less.
- understanding of what someone tells/asks me without writing it down seems lower.

Maybe I'm just thinking too much about it:hmm:. I haven't seen a doctor yet since I was forced into taking over everything for my mum. I plan on calling to make the appointment with my PCP to get a referral for an ENT.

I just wanted to hear some thoughts or your stories if anyone has had any similar experiences. Thank you everyone! :ty:
 

needsleep

Member
Slowly learning to ask for what I need. It seems so stupid to me sitting here at home that I have problems asking for things like CC to be turned on. Why should I feel bad about things like that? I shouldn't!

For example, Boyfriend and I were sitting on his couch watching "Kitchen Nightmares" and I kept asking him what the people were saying so he told me to turn CC on. I did, and I was much happier for it...until his family came home. Then I felt bad because I know it annoys one of his brothers. I asked him if we should turn them off and he just made a face and told me not to worry about it. It's almost like I'd rather sacrifice my own needs for the comfort of others. I really need to learn to cut that crap out!

Knowing is half the battle, right? *sigh* I'll grow a backbone eventually. In the meantime, I'm glad he has enough backbone to cover me when I need it.
 
Your bf is right. Who cares if a family member doesn't like the CC? My husband never watched shows without CC before me, and now he feels weird watching shows without CC even if I'm not around. What people consider normal can change. Heck, he got very used to not talking without facing me, and he starting doing that to his friends. They'd get together to game, they'd be chitchatting and he'd fall silent. They'd then look at him and say "You know, we can hear if we don't look at you".

So definitely don't worry about something as inconsequential as CC bothering a hearing person belonging to the family of your bf. They will suck it up and get used to it.
 

KLEE17

New Member
My late deafness is caused due to complications of VHL. I wasn't aware of it and wasn't keeping it in check through the years. It sucks, but I've finally come to terms with it and have a positive outlook. Anyone heard of VHL?
 
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