Losing my hearing

A. K.

New Member
Hi, I've had Meniere's Disease in my left ear for 14 years and can only hear very loud sounds (although with a lot of distortion) out of that side. I've learned to adapt to the symptoms and been able to lead a pretty normal life so far, but now I'm getting it in my right ear and soon will not be able to hear out of either side. Not being able to hear clearly is driving me insane; at times I start getting very anxious, it's as if I were asphyxiating, and I feel like I'm going to have a panic attack. There is no cure for Meniere's and my hearing will only get worse. The thought of not being able to hear at all terrifies me. I would like to get in touch with people who have lost their hearing as adults (I am 53), in the hopes of learning from them how to cope with these feelings, as well as how to adapt to life without hearing.

I know I need to start preparing for a lot of changes in my life, and to start looking at options too. If anyone can recommend support groups (online or in person), websites, activities, literature, chats, or give any advice or pointers, I'd appreciate it very much. Thanks.
 

LoveBlue

Well-Known Member
Have you looked into cochlear implants(CI)? I know some people who have said the implant actually helped their balance as well as their hearing.
Maybe check out CI support groups. Also hearing loss groups like HLAA.
 

Beowulf

Well-Known Member
Premium Member
Have you looked into cochlear implants(CI)? I know some people who have said the implant actually helped their balance as well as their hearing.
Maybe check out CI support groups. Also hearing loss groups like HLAA.

You've got to be kidding me. This guy is having panic attacks at the idea of losing his hearing. Stitch a CI into him and I bet you dollar to doughnuts nothing has changed.
I did not mean disrespect to you, LoveBlue.
 

Swedeafa

Member
  1. Find others with similar experiences. There might for example be support groups for Menière. It helps tons.
  2. Well, vertigos are worse aren’t they? You cannot do so much at all when dizzy, but as deaf, you can actually do anything but hear. Ok, so currently you use your hearing all the time. This means you will have to find other strategies.
  3. Such as becoming more visual:
    1. Learning sign language. You are NOT too old, and honestly, learning sign will give so much when it comes to confidence. You feel that you do have an efficient way to communicate, even though it’s not the most common.
    2. Use CART.
    3. Get vibrating wake-up clock, captioned phone and other tools that make life easier.
    4. Advocate for yourself. Both you and people you meet will have to adapt if communication is going to be successful.
    5. Compensate by reading. You have an advantage compared to people born deaf. Reading is easy for you. Use text, read news papers, send e-mails, use Facebook and Messenger.
  4. What was important to me when I became HoH was remembering that I am still the same person. Trust yourself! If you loved strawberries, were skilled at math and a loving mother - nothing of that changes because you cannot hear.
  5. Find role models. Look for successful Deaf people and study what they do. If you meet one Deaf who is unhappy with life and one who is happy, compare and try to identify what makes people happy and what makes them succeed in the hearing context.
Basically, your life will be different without hearing, but not necessarily less interesting or worse. You will need to accept, that things have to be done differently, but usually you can still do most anything, just not in the same way as if hearing.
 
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LoveBlue

Well-Known Member
You've got to be kidding me. This guy is having panic attacks at the idea of losing his hearing. Stitch a CI into him and I bet you dollar to doughnuts nothing has changed.
I did not mean disrespect to you, LoveBlue.
I lost my hearing and love my CIs. I know CIs are not for everybody which is why I said “look into”, not “you should get”. It’s a personal decision. ;)
 

vegandreamer

Active Member
Hello and welcome!

I wish you the best of luck. I wore my first hearing aid at age 11 and went profoundly deaf in my 30's. I am now 47.

I wasn't too sorry to lose the rest of my hearing because when I could hear a bit some noises were painfully loud. Not being able to hear at all meant people stopped pressurising me into wearing hearing aids and used the deafblind manual instead which was a great improvement.

I also think learning sign language is a good idea.
 

A. K.

New Member
Thanks, LoveBlue, zephren, and vegandreamer for your helpful replies. My ENT had mentioned a cochlear implant as an alternative if both ears ended up with Meniere's, so that's something I plan to talk about with him on my next visit, which will be soon.
 
Trust youself. Study deaf people who were successful. I have a deaf family and I remeber my late deaf mother who spent a lot of time in bed and PJs and refused to learn sign. I was 10. My deaf bro went to RIT and learned sign. Totally opened my world.
 

A. K.

New Member
Thank you too, Elizabeth and Swedeafa. For some reason Swedeafa's reply did not appear for me previously, I just noticed it today. And it blew me away. Full of practical advice, and inspirational at the same time. Thank you much.
 

Valorrian

Active Member
I lost my hearing due to meningitis. Woke up from being sick and no hearing at all. I understand your fears, anxiety and panic attacks. I too have them. Like you, I was recommended to look into a cochlear implant. It could be a really great thing to help you hear again if you qualify. I found out on Friday that I don't qualify for implants. I am trying to accept the me I am today, not the me I use to be. These last couple of days have been rough but I don't want to go back into that black hole I was in for so long. I want to live and be happy. I'm only 20 and I'm suppose to be happy and at college with my friends but I'm held up in my house by fear, anxiety and panic disorder. Have you seen a counselor? Maybe talking to someone would help? I am thinking about going.
 
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