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I'm trying to find someone who experiences hearing the world like I do

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I've had hearing loss since childhood. It was discovered when I was around 12 or 13, although it wasn't something that suddenly happened then, looking back, it seems to have been there for as long as I can remember. As a young child I also needed speech therapy because, without it, my speech was unintelligible.

My hearing is quite unusual. I can hear voices and sounds reasonably well at some frequencies, but my hearing drops extremely steeply at the higher frequencies.

For most of my life I've simply called it "high-frequency hearing loss", but I've recently realised that doesn't really describe what it is like to live with it.

I don't live in a world where sound is simply loud or quiet. I live in a world where sound is often there, but the information inside it isn't.

I can hear someone speaking, sometimes quite clearly, but the words themselves can disappear.

My wife can shout to me from downstairs and I can hear her voice, but I have absolutely no idea what she said. A child can be standing in front of me asking me something and I can hear them talking without being able to understand the words. Someone whispering and the words can disappear.

At work, particularly around machinery, I can hear that someone is talking but often can't extract the words. In crowds or groups I can be surrounded by people talking and yet effectively be unable to participate.

What's interesting is that I can sometimes do surprisingly well in a quiet one-to-one conversation. I've spent my whole life unconsciously compensating, watching faces, expressions and body language, using the context of the conversation, remembering what was said previously and working out what someone is likely to have said.

I've done this for so long that I don't normally think about it. It's just how I communicate.

But it also means that people can sometimes think I hear much better than I actually do.

I recently had a speech-in-noise test. I could hear the woman's voice, but I couldn't make out the words at all. I knew she was speaking, but there was essentially no meaning in what I was hearing.

I've tried hearing aids before, around 25 years ago, but eventually stopped using them because they seemed to amplify everything without giving me useful speech clarity. I'm now looking at modern hearing technology again and going through the NHS route, while also considering what other options might be available.

What I'm really hoping to find is someone with a similar experience who can tell me about the journey they've been on.

If you have a steep high-frequency hearing loss, particularly one you've had since childhood, I'd really like to know:

  • What treatment or hearing technology are you currently using?
  • How did you get to that point?
  • Did you go through the NHS, privately, or both?
  • What assessments or tests did you have along the way?
  • Were you offered hearing aids, and if so, what type?
  • Has anyone assessed you for other options, such as cochlear implants?
  • Most importantly, has anything actually improved your ability to understand speech, particularly in noise?
  • And if you've had hearing loss since childhood, what has your experience of living with it been like?

I'm not really looking for general hearing-loss advice. I'd genuinely like to hear from someone who reads this and thinks:

"Yes. That's what it's like for me too."

I'd especially appreciate hearing about the steps you took to get treatment and what happened at each stage, because I'm trying to understand what options I should be asking about myself.

13 people in this conversation24 min readJump to latest

I've always had some problem with word recognition. I've avoided live theater for that reason, even when I could hear sounds across the frequency spectrum (though I couldn't hear above 12 KHz even in my early 20s). But my loss is probably not like yours.

My reco is to start by getting tested and come back here when you have an and word recognition test scores. It's really hard to describe experience, but numbers can be compared to some good effect.

Edited

In reply to @higgostar77

@higgostar77 said:

I've tried hearing aids before, around 25 years ago, but eventually stopped using them because they seemed to amplify everything without giving me useful speech clarity.

In order to give you helpful advice, as you able to post your from childhood? Have you had your hearing loss since birth?

Congenital (pre-lingual) hearing loss is not the same as adult-onset hearing loss. It is important to recognize that we hear with the brain, the ears are simply the gateway for sound. In the adult-onset hearing loss the neural connections for processing speech have already developed. Depending on your degree and configuration of loss there may be significantly under-developed areas of your auditory processing pathways.

This needs to be factored into any aural habillitation program: you will need to undergo a significant amount of training in order to use the signal. What that training looks like will be specific to you and your hearing configuration.

With greater degrees of loss, the areas usually involved in processing auditory information sometimes become sequestered by other sensory modalities such as touch sensation because neurons require stimulation to stay alive and survival is their ultimate goal. In completely deaf people they're often used in visual processing. This makes retraining much more difficult as they're already wired to do something else. This doesn't mean that you should give up hope. It's just something that may affect you if you have a greater degree of loss and it is important to have realistic expectations.

I've worked with many children and young people with high frequency hearing losses. It was the predominant loss configuration where I worked. Your experience isn't atypical. I have worked with teenagers who were never diagnosed and learnt to produce high-frequency consonants by copying other's lip movements and practicing in the mirror. They never heard the sounds they were making, even with their own speech.

Thanks, that's really interesting. Unfortunately I don't have an from childhood. My hearing loss was discovered when I was around 12 or 13, but it wasn't a sudden loss at that point as far as I can remember, I've always heard this way, so I suspect it was present from birth or very early childhood.

I've uploaded my latest audiogram to my profile, as I'm not yet able to attach images directly to the post because my account is too new. The overall pattern appears to have changed very little over the years it's still a very steep high-frequency loss, although I think the loss at the higher frequencies may be a little worse now.

What you've said about auditory development is really interesting, as it's something I've never really considered before. How would you assess something like that in someone with my history, and what would the assessment involve?

And once that had been assessed, how would you determine what sort of rehabilitation or treatment might be appropriate?

Edited

Looking at your , you have a severe=profound mid-high frequency hearing loss. Can I ask, does your speech have any characteristics that others notice as being different to their own speech? If not, then it is possible that it was a post-lingual loss which makes a big difference to potential outcomes.

Forgive me if I don't answer your other questions at this point in time. I need more information in order to advise you properly.

In reply to @higgostar77

@higgostar77 said:

My hearing loss was discovered when I was around 12 or 13, but it wasn't a sudden loss at that point as far as I can remember, I've always heard this way, so I suspect it was present from birth or very early childhood.

Do you have any results from when you were first diagnosed? Were they the same as the in your profile?

Edited

You’re basically dealing with the same loss as my receptionist (almost exactly the same across the chart). Unfortunately the NHS doesn’t really do hearing aids with frequency compression that you’d really benefit from.

I’ve put her on the new Eons with a load of frequency compression, but several other aids also do similar frequency manipulation: I’m not sure if any of these appear on the NHS lists.

Put simply, you could do a lot better with private provision in the U.K., because we have access to better technology options than the NHS.

In reply to @higgostar77

That indicates that your hearing loss has probably progressed over time and was better than where it is now. It also means your brain has probably had auditory stimulation and reduces the likelihood that cross-modal reorganization has taken place. It makes you a better candidate for auditory rehabilitation.

Because of the massive contrast between your near normal hearing in the low frequencies and the severe to profound loss in the mid-high frequencies it is very challenging to fit you with hearing aids. We need to occlude your ears in order to amplify mid and high pitched sounds so they are loud enough you can detect them without sound leaking out of your ears and being re-amplified by your ears resulting in feedback whistling, however we typically don't want to occlude ears with near normal hearing in the low frequencies because it traps your own voice inside your head resulting in an unpleasant sound quality and limits your ability to use your natural hearing where it is good.

Because of the degree of your hearing loss you may find acoustic amplification of speech doesn't provide you with useful access to speech information. There are technologies that audiologists can use that allow us to shift speech information into lower frequency bands than they would naturally exist to overcome this, however it will almost certainly sound very unnatural to you if we were to shift these to where you have good hearing and likely the best we could do is shift them to the transition zone around 1.5 kHz. Then you'd need to retrain your brain over a period of at least 6 months to use this information, because it is a long term change. This is probably the best we could do with hearing aids and should be part of your journey to see whether this is the solution for you.

The research tells me that you will probably do much better with electroacoustic stimulation. In your case this would involve using your natural hearing for low pitched sounds with an open ear and complimenting this with electrical stimulation of the areas of the cochlea where your hearing loss is severe to profound. With electrical stimulation you can adjust the crossover point so you have access to information across the entire speech spectrum. Electrical stimulation is delivered via a cochlear implant, which bypasses the worst areas of hearing loss and stimulates the hearing nerve directly, providing a much clearer signal to the brain. There are specific cochlear implant designs for electroacoustic stimulation and they are designed to preserve your natural hearing. It isn't the same as acoustic hearing, but when your have a profound hearing loss the mechanisms that convert sound into a message the brain can perceive are often so dysfunctional that the quality and amount of information provided doesn't allow for useful speech recognition in quiet whereas most users achieve good open-set sentence recognition in noise. This again will involve retraining of your brain to use the signal, but it can deliver a lot more information than can.

Any way you look at it, you'll need a very good audiologist to assist you on your journey because of the complexities of your hearing configuration. This is a challenging fit for even highly qualified experienced audiologists. Which country are you based in?

In reply to @higgostar77

I read through this thread and a question came to mind.

Can you understand sounds on all frequencies of your ? The answer would lead you to power aids with occlusive molds or it would lead you to .

Edited

this is such a powerful way of describing hearing loss. the idea that sound can be present while the information within it is missing really helps explain something many people may not understand. thank you for sharing your experience.

Thank you everyone for the replies so far. It's really helpful, and I really appreciate people taking the time to share their experiences and knowledge.

I'm based in the UK, in North West England.

I've also just had a consultation at a private audiology clinic. Some of what they explained was very similar to what you've described, particularly the possibility of using frequency-shifting technology. They were very honest that, given my hearing profile, I shouldn't expect normal hearing and that any benefit could be limited.

However, I came away feeling that the consultation was primarily focused on fitting me with a hearing aid, rather than fully exploring the wider options or understanding whether there might be a more appropriate pathway for someone with my particular hearing loss. That's one of the reasons I'm keen to understand the NHS pathway before making a decision.

Given the complexity of my hearing loss, would you expect someone in my situation to be assessed through a specialist/tertiary audiology service rather than a standard hearing-aid clinic? If so, what would the pathway normally look like to access that through the NHS, and what would the specialist assessment involve in determining the most appropriate treatment or rehabilitation?

Thanks again to everyone who's contributed. This is exactly the sort of information and experience I was hoping to find when I posted.

Edited

In reply to @higgostar77

@higgostar77 said:

Given the complexity of my hearing loss, would you expect someone in my situation to be assessed through a specialist/tertiary audiology service rather than a standard hearing-aid clinic? If so, what would the pathway normally look like to access that through the NHS, and what would the specialist assessment involve in determining the most appropriate treatment or rehabilitation?

Given that you're in the UK I think @Um_bongo probably has a better idea of how to guide you as he's a local hearing care professional. I think you may need to go along both pathways based upon what he's mentioned in this thread already, but I'll defer to him. In my experience clients in your position will always try to get things right with hearing aids first and then go through the candidacy assessment process for cochlear implantation to at least get more information about their options. The latter needs to be done with well fit hearing aids in place.

If you listen to a YouTube podcast through in-ear monitors (IEMs) connected to an iPhone or iPad, can you understand the spoken words clearly, including their pronunciation? Or do you hear the voices and sounds but still have difficulty making out what’s being said?

I’m curious whether IEMs improve speech clarity for others the way they do for me.

In reply to @maukaman

I can hear speech quite clearly through in-ear headphones, but I still don't always understand the words.

It's easier for me when the sound is clear and there is no background noise, but I still have the same problem with speech clarity. I can hear someone talking, but that doesn't mean I can understand what they're saying.

So I wouldn't say that IEMs make a big difference to my speech understanding.

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