Looking for Others Living with Profound Unilateral Hearing Loss And Tinnitus

[Unamuno]

I want to finding others who have:

1. Profound Unilateral Hearing Loss and,

2. Tinnitus in that same ear.

I have this. Developed suddenly 2 years ago. I struggle with advice from professionals and others who have different type of hearing loss. Please only respond if you have the exact condition described above - i would feel quite alone. I am not trying to sell anything and I don't have an agenda. I just want to survive this condition!

Thanks,

Michael

[Xene]

Yay Michael, I have profound deafness in one ear after major surgery and screaming T in that ear 24/7 for decades. If I don’t meet your criteria no problem but you are not alone.

Best wishes

Xene

[Unamuno in reply to Xene]

Hello Xene,

We may share very similar issues. This is my situation (I copied and pasted this):

Sudden sensorineural (“inner ear”) hearing loss (SSHL), commonly known as sudden deafness, is an unexplained, rapid loss of hearing either all at once or over a few days. SSHL happens because there is something wrong with the sensory organs of the inner ear. Sudden deafness frequently affects only one ear.

So my deafness was not caused by surgery. Idiopathic may doctors say - no known cause. My ear problem showed up in March of 2017. I am not dealing well with the tinnitus!

It is good to know that you are surviving. Good for you!

I am not at the computer a lot. I will reply again soon to tell you my issues and what I am trying to do to help myself.

Hope to have a long-running conversation over the next few weeks.

Again, great job at surviving this. I hope to learn a lot from you,

Michael

[Unamuno in reply to Xene]

I would like to know what your tinnitus sounds like. You could send me a link to a website that has your tinnitus sound, or try this one that I used (it is something called Take On Tinnitus):

takeontinnitus.co.uk/captiv...

The sounds are on page 7 of the presentation. My own tinnitus sounds like #4 and #7 with a little of #3 and #10 thrown in at times.

Thanks for the reply! And eventually maybe we can form a small support group for each other, and discuss things we are trying for tinnitus.

[Xene in reply to Unamuno]

Yay Michael, unfortunately I'm not really feeding into your esoteric version of T. In my humble opinion any person who suffers with T regardless of what caused it, whatever sound or sounds they perceive it or whatever volume they perceive it are all worthy. I hope you manage to find the answers that you are seeking and wish you well.

Xene

[Unamuno in reply to Xene]

Thank you Xene. One thing that having tinnitus does for me is open me up more to the many issues that people all around me have to cope with. Yes, all are worthy. What brought me to my current search was a research article that studied individuals who have different levels of hearing loss along with tinnitus. The preliminary research suggests that individuals who have profound or severe hearing loss often have a more difficult time struggling with their tinnitus. I did not participate in the study, but I found it revelatory. So many people tell me just to deal with it, just to get used to it. Some of these people have tinnitus with varying levels of hearing loss. Things that can help someone with moderate hearing loss may do nothing for me with profound hearing loss. My goal is not to downplay the tinnitus of others, but to find appropriate help for my situation which I know I share with many others.

[Rustickle in reply to Unamuno]

Hi, I finally had the chance to listen to the tinnitus sounds, it's not exact but close to a mix of 5, 9, and 10. Definitely stress and positional related, much worse when I'm laying down and much better when I went to the woods to help with an amphibian survey, tons worse at work.

[Unamuno in reply to Rustickle]

Thanks for replying. Sorry that i'm not on this site regularly. I'm sort of old fashion in that i'm not looking at my phone all the time. My tinnitus is close also to #9. I'm interested in #5 though -- that one has a pulse sound in it. I don't have any pulsing sound. I wonder what causes that with you?

I can see why being out in nature is some relief. I feel the same, and I've recently bought a sound machine with a nice night time cricket chirping soundscape that really helps me.

I have great challenges at work also. Obviously the direction that a sound is coming from is difficult. And the hearing loss and sound level of the Tinnitus make hearing and understanding some conversations difficult, especially if there is background noise.

I want to talk about some other topics in the future:

1: Hearing aids -- have you tried them?

2: Anti-Depressant or Anti-Anxiety medicine

3. Mindfulness based therapy

4. Sleeping pils

Obviously, some of this stuff is personal. I think there is a private chat function to this site. Whatever you are comfortable with. I'll send my experiences with these four items in my next post. Please share anything you are interested in. Don't seem to be many others who seem the match up with our situation, but i'm not giving up hope.

Talk again soon,

Unamuno

[MRDeaf in reply to Unamuno]

I’m Totally Deaf no ear drums, no Cochlears, no nerves, no hair cells, just skin graft from inner to middle to outer ear canals.

Yet The phantom Tinnitus is so annoying, stops ones concentrating.

[MRDeaf]

I’m Totally Deaf no ear drums, no Cochlears, no nerves, no hair Cells, no bones, just skin graft.

And suffer Tinnitus badly, it has worsened more and more as time goes on.

I’m on antidepressants otherwise I would commit suicide because of this nightmare of phantom noise.

[Mthornton]

Michael, I have unilateral hearing loss and tinnitus in my left ear only.

[Unamuno in reply to Mthornton]

Hello Mthornton!

I won't repeat what I said to Xene in my reply. Hopefully I can find others who share the same condition, and who would like to start a small support group. I know this can be tricky because of "Habituation." I mean why talk about something that is not bothering you, that you've become used to. Unfortunately, I am not habituating. I don't know if it's me or if it's the severity of the tinnitus/hearing loss. The only way for me to go forward is to talk, and share, and try to find help. This is why i am here. For starters, I would like to know what your tinnitus sounds like. You could send me a link to a website that has your tinnitus sound, or try this one that I used (it is something called Take On Tinnitus):

takeontinnitus.co.uk/captiv...

The sounds are on page 7 of the presentation. My own tinnitus sounds like #4 and #7 with a little of #3 and #10 thrown in at times.

Thanks for the reply! And eventually maybe we can form a small support group for each other, and discuss things we are trying for tinnitus.

[Rustickle]

Yepper, left ear had some tinnitus for about a year or so then, Bam! about a month ago went to screaming and total deafness in that ear. Just loads of fun, I'm in the U.S. where only rich people get health care so I'm treating at home trying various methods. Pretty damn irritatating and depressing all the way around, sigh.

[Unamuno in reply to Rustickle]

I would like to know what your tinnitus sounds like. You could send me a link to a website that has your tinnitus sound, or try this one that I used (it is something called Take On Tinnitus):

takeontinnitus.co.uk/captiv...

The sounds are on page 7 of the presentation. My own tinnitus sounds like #4 and #7 with a little of #3 and #10 thrown in at times.

Thanks for the reply! And eventually maybe we can form a small support group for each other, and discuss things we are trying for tinnitus.

[MRDeaf in reply to Rustickle]

Sorry if I sound like I’m having a go at you, I’m not.

But Total Deafness is when one has NO ear drums, NO Cochlears, NO nerves, NO hair Cells, just skin graft all the way from inner to outer ear Canal, that is what I have, rubber stamped Totally Deaf. But still have the phantom noise sent by brain yes Tinnitus.

[Rustickle in reply to MRDeaf]

Different experiences for different people, I have great hearing in my other ear so am able to function at work, so for that I'm thankful. Sorry you have to experience such profound deafness but I refuse to get in a pissing contest with you about "my deafness is worse than yours." We all experience our own limitations within the filter of the lives we have led.

[MRDeaf]

What you have no ear drums, no Cochlears, no nerves, no hair cells, nothing just Skin graft all the way from inner to middle to outer ear canal ?

Regards

CJ

[ballie52]

I have had vertigo and ringing in my ears for years..I had an OP recently and was having balance difficulties so got sent to an ENT who did a hearing test and discovered I have severe hearing loss on my right side..I dont think he knows the cause but said it definitely wasn't age related as I'm not quite at the age for hearing loss...the tinnitus started about 10yrs ago just constant ringing sort of like a fridge motor.

I just ignored it and still just find a way of doing something else to switch of the brain from it bothering me..I wasn't even aware of my hearing loss as I think my left ear compensated for the right ear.

Right now I do have balance issues especially with looking at things from a distance and keeping a straight walk..rather like feeling drunk so going for physiotherapy to help with that.

A hearing aid has been suggested but I declined as I am managing ok with my left ear

As for the tinnitus I think I have been rather successful in training my brain to ignore it although it's almost constant.