1. < Hearing Loss
Moderator

Hearing Loss: Come introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Feb 5, 2019

Welcome to the Hearing Loss group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with hearing loss, and friends and family supporters. Whether you were born deaf or hard of hearing, experienced hearing loss after birth or with aging, it helps to connect with others. Together we can learn from each other, support one another and share stories about living with hearing loss, coping with challenges and celebrating milestones.

Let’s chat. Why not start by introducing yourself? What is your hearing loss experience? Got a question, tip or story to share?

Interested in more discussions like this? Go to the Hearing Loss Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 20, 2019
In reply to @johnny3 "Hearing is severe in both. Don't know about Facebook. There seems to be a lot of..." + (show)
@johnny3

Hearing is severe in both. Don't know about Facebook. There seems to be a lot of negativity on there. I have to ponder that. Appreciate the response.

Jump to this post

Hi @johnny3, I'd like to add my welcome. I'm impressed by how you are taking charge of your hearing health, asking questions and doing your research.
You may also be interested in this discussion:
* Help: Sudden Sensorineural Hearing Loss (SSHL) - very scary https://connect.mayoclinic.org/discussion/help-sshl-very-scary/

You ask great questions. "Can anyone tell me if nerve damage means auditory nerve only, or both auditory and vestibular nerve? How one know if they may have balance issues without seeing a specialist? How does your diet play a role in having a healthy hearing lifestyle such as salt intake?(I omitted caffeine)"

Each of these questions could be the start of a new discussion. I'd like to bring in a few members, like @sharieberts @joyces @imallears @judymartin @cjspizz @dsh33782 @mikepa @edschickel and @katherinebouton to share their ideas.

Johnny, what specialists have you seen?

REPLY
1 reply
johnny3 | @johnny3 | Sep 20, 2019
In reply to @colleenyoung "Hi @johnny3, I'd like to add my welcome. I'm impressed by how you are taking charge..." + (show)
@colleenyoung

Hi @johnny3, I'd like to add my welcome. I'm impressed by how you are taking charge of your hearing health, asking questions and doing your research.
You may also be interested in this discussion:
* Help: Sudden Sensorineural Hearing Loss (SSHL) - very scary https://connect.mayoclinic.org/discussion/help-sshl-very-scary/

You ask great questions. "Can anyone tell me if nerve damage means auditory nerve only, or both auditory and vestibular nerve? How one know if they may have balance issues without seeing a specialist? How does your diet play a role in having a healthy hearing lifestyle such as salt intake?(I omitted caffeine)"

Each of these questions could be the start of a new discussion. I'd like to bring in a few members, like @sharieberts @joyces @imallears @judymartin @cjspizz @dsh33782 @mikepa @edschickel and @katherinebouton to share their ideas.

Johnny, what specialists have you seen?

Jump to this post

I've seen ENT over the years to get ears cleaned but no deep discussions about inner ear and nerve issues or what kind of loss I have. Didn't know at the time to ask if there was an exam to check for nerve damage(s).

REPLY
1 reply
johnny3 | @johnny3 | Sep 20, 2019
In reply to @johnny3 "I've seen ENT over the years to get ears cleaned but no deep discussions about inner..." + (show)
@johnny3

I've seen ENT over the years to get ears cleaned but no deep discussions about inner ear and nerve issues or what kind of loss I have. Didn't know at the time to ask if there was an exam to check for nerve damage(s).

Jump to this post

Clarification: I didn't have SSHL in my adult life. Could have happen in childhood or birth. Not sure.

REPLY
JK | @contentandwell | Sep 20, 2019
In reply to @jfobes "Thank you for your interest and advice! I am an overly analytical person and have researched..." + (show)
@jfobes

Thank you for your interest and advice! I am an overly analytical person and have researched heavily my dilemma. My best conclusion would be leaning toward eustreatian tube disfunction possibly related to a jaw problem like TMJ. I did get tested for TMJ and I was told nope! I do however have a tight jaw, not clenching teeth just tight and pressing tongue against the roof of my mouth. I have tried to remedy that to no avail! Perhaps I should try chewing gum?

Jump to this post

@jfobes Did you ever find a really definitive answer to why your hearing occasionally clears up and you can hear well for a brief period? If this could be figured out it just seems as if maybe there is something that could be done to make that more permanent.
JK

REPLY
JK | @contentandwell | Sep 20, 2019
In reply to @dthree "Hello, I'm happy to have found this group. My hearing loss started in my late 50's..." + (show)
@dthree

Hello, I'm happy to have found this group. My hearing loss started in my late 50's when I was diagnosed with Meniere's in my right ear. It has now progressed to both ears and I started wearing hearing aids 3 years ago which has helped tremendously. I've gone through periods of total loss and then hearing returns in the left ear. I have associated diminution of my hearing with what I eat. I've given up caffeine, ice cream (takes my hearing away the next day completely) and salt (of course). Usually after a spell of what I call 'bad hearing days' my left ear will start to function again within a week. I had a great 3 months when I wondered why I was even wearing hearing aids as my left ear seemed to return to normal. However last week I woke up deaf. I couldn't hear myself talk and I had an extreme dizzy spell. I started taking high dose prednisone, which usually will alleviate the problem in the left ear but it hasn't worked at all. I've been to allergists, immunologists, neurotologist and about 4 ENTs looking for answers since I was initially diagnosed. No one has any. It's maddening to not know if any hearing will come back. Would a cochlear implant help? Do cochlear implants help with the tinnitus, which has gotten worse since my hearing disappeared. I'd consider trying stem cells but it doesn't seem like the science is fully there yet, at least not for humans and their ears.

Jump to this post

Hi, @dthree Have you found anything more out about your sudden deafness and what can be done about it? I hope that it was temporary as were past problems and that this time it just lasted longer. I know nothing about Menieres but I am learning a little about through the posts here.
JK

REPLY
1 reply
katherinebouton | @katherinebouton | Sep 21, 2019

Colleen, I've been trying to reply to @johnny3, but the system won't let me. You're the only person I can reply to. Can you tell me what I'm doing wrong?

REPLY
2 replies
johnny3 | @johnny3 | Sep 21, 2019
In reply to @katherinebouton "Colleen, I've been trying to reply to @johnny3, but the system won't let me. You're the..." + (show)
@katherinebouton

Colleen, I've been trying to reply to @johnny3, but the system won't let me. You're the only person I can reply to. Can you tell me what I'm doing wrong?

Jump to this post

Hello. Can you hear me now?

REPLY
jfobes | @jfobes | Sep 21, 2019
In reply to @contentandwell "Hi, @dthree Have you found anything more out about your sudden deafness and what can be..." + (show)
@contentandwell

Hi, @dthree Have you found anything more out about your sudden deafness and what can be done about it? I hope that it was temporary as were past problems and that this time it just lasted longer. I know nothing about Menieres but I am learning a little about through the posts here.
JK

Jump to this post

JK, I have been at a stand still waiting for an appointment with a different ENT. I have left multiple messages for them to get me an appointment with no luck. Honestly I have little faith this will ever have a resolution in my lifetime. Considering donating my ears to science so they can figure it out for the next person! Hearing simply does not come and go like this. I feel that my story may be unique enough that it carries no weight with the traditional medical field. If it's not in a text book it can't exist right?

REPLY
1 reply
joyces | @joyces | Sep 21, 2019

Fluctuating hearing loss is one of the really swell features of Meniere's Disease. Throw in distortion and recruitment, along with the usual tinnitus, and it makes using hearing aids even more challenging. I can be driving on the freeway with virtually no road noise or engine sound and suddenly have it all "turn on." It can turn off a few miles later, or stay at that level for the rest of the day, even two or three days. There's no way to know when I'm going to have a day where I can hope to puzzle out what's being said or a day when everything is just a mystery. Due to recruitment, it's very uncomfortable to wear an aid on bad days. When I met with a new audi a couple of weeks ago, she went over the list of facts (kind of aid, its age, results of tests, etc.) and stopped when she got to my note about Meniere's, with a comment about "That's the problem." I've lived with Meniere's in one ear for decades and am learning how to survive now that I've gone bilateral. FWIW, some audis and docs really have no understanding of Meniere's.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 21, 2019
In reply to @katherinebouton "Colleen, I've been trying to reply to @johnny3, but the system won't let me. You're the..." + (show)
@katherinebouton

Colleen, I've been trying to reply to @johnny3, but the system won't let me. You're the only person I can reply to. Can you tell me what I'm doing wrong?

Jump to this post

Hi @katherinebouton, your message posted successfully to the discussion thread for all to see. You're doing it perfectly.
See instructions on how to reply in the How to Use guide here: https://connect.mayoclinic.org/get-started-on-connect/

You might also find this tip too:
- Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/

Does this address the issue you were having?

REPLY
View MoreView Less
Please sign in or register to post a reply.