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Musical Perception/Understanding Loss: Coping

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I have moderate to severe sensorineural hearing loss in both ears. As a result, I struggle understanding speech, but find music impossible to understand.
Classical music has been a huge part of my life, but is now a closed book.
The recent Phonak Sphere has transformed my ability to understand speech. The inability to ‘hear’ music remains.
I have two questions for the group:

  1. Has anyone found a way to cope with this affliction? Complex music now sounds atonal and random. I understand that my cochlea is damaged beyond repair, but cling to the hope that something may be possible.
  2. is the best coping technique simply to close the book on music? I have tried reading scores to listen in my head, but the frustration (and depression) of being unable to hear is immense. I can follow music where there is a strong rhythm (eg some Beethoven), but I am fearful that the experience destroys my ‘memory’ of the real sound. I would be very interested in other’s experience; There seems less awareness of this aspect of hearing loss.
12 people in this conversation8 min readJump to latest

Hi. First of all I am very sorry for what you’re going through and I do feel your pain. I have cochlear hydrops which means the lower end of my hearing has gone and in fact continues to go. Over the years, music has become less and less bass heavy until now, although I can feel the speaker vibrating next to me with the bass notes, I can just hear the trilling bits and even those are starting to go.
Like you I find most notes a-tonal now and I also had perfect pitch, but now my entire hearing range has shifted up a semi-tone. So I hear a g but it’s actually an f sharp that is being played. All very weird.

There are a number of headphones out there with graphical EQs that you can change, for example the sony series. I personally use these and tweak the EQ, then turn them up really loud. music is kind of doable for me at those sorts of levels but it is fading fast. I’m really sorry to say that music is probably a bit of a lost cause for us, it just contains too many complexities, harmonics and overtones that really have to be heard to be understood if you see what I mean. Not to mention vocals in music which are also really hard to pick out.

The widex hearing aids offer really good music listening programs, but to be honest they are not miles above the Phonak spheres. so if you don’t hear music well with the spheres, it’s very unlikely they’ll make a difference to you.

I should say I am totally blind and I cannot see your audio gram, it’s possible someone else on here might have a better idea given your hearing loss, but from what you’ve said, it seems unlikely. I am really sorry. I’m trying to find another hobby to replace the sound based ones I used to have but it’s not easy. I imagine for you music was how you relaxed. for me, sound, great films, music etc was my way. replacing that is hard.

You can also try training your pitch differentiation. See here. It is an app mainly for users, but non-CI users might also obtain benefits.

https://zaimplantowani.fizyka.uwb.edu.pl/index.php10

For testing purposes, you can enter here:
login: 555
password: 555

Your web browser should have a translation feature for Polish to facilitate navigation.

If you want your progress saved, you should register…

I have profound hearing loss and streaming is the answer. When I listen to music live, I don’t get enough treble sounds but the equalization in streaming can do miracles and with my Phonak Lumity the experience is very satisfying.

@nglfriend said:

is the best coping technique simply to close the book on music?

I wouldn’t give up.

My loss is moderate to severe. Does your loss look a bit like mine? When I set up any Phonak hearing aids (I self programme), Sound Recover 2 is enabled as default. I’m surprised by this, as I rarely use domes. I have full moulds and some slimtips too.

The first thing I do is switch off Sound recover, as it shifts frequencies. I can get decent gains throughout the range, without it, and can music well enough to enjoy it.

I would investigate your fitting, as this “may” be the problem.

In reply to @Xonic83

I really appreciate your experience. I cannot imagine the loss of sight on top of hearing problems; as always, it is actually good to realise that some are far worse off than me and that I should be grateful for what I have, My best wishes to you.

In reply to @DamonHill

I understand that some sufferers lose trebble or base etc; my problem is that the loss of a number of frequencies has removed my ability to understand tonality. As a result, music simply sounds like a mush (strings in particular) or random and atonal. However, it is true that some instruments still ‘work’: I appear to hear and understand a saxophone, which seems strange!
But thanks for your suggestion.

Try getting a music program on the Spheres. Feedback manager turned down as much as possible. Feequency lowering turned off

In reply to @DamonHill

I’ve found the music programme on my phonak naida paradise 90UP, if turned up to max volume, is actually better than streaming - when listened to through our portable Bose speaker. For years the highest pitches have not been there for me (extremely frustrating and upsetting ) but last night I managed to listen to Parisiene walkways and actually felt and heard the high pitches as I did in the 70s.

hey,

Im a professional drummer based in Ireland. We’re not exactly living in the height of technology here so I got ADELs. Before I tried these I tried tons of so called solutions and nothing worked. The only way I can describe what I have is torture…sensory hearing loss and hyperacusis. And tinnitus. ADELs kept me on stage and as sane as a drummer can be!

Reach out to Asius Technology. They welcomed me and brought me on board. Changed my whole perspective on what I can hear. Happy to help where I can.

In reply to @Pete_B

Pete,

Thanks for your constructive response.

I have taken a look at Asius and will discuss with my audiologist next week as I have an appointment.

There seem to be (at least) two hearing problems with music. The first- and simplest- is the difficulty in hearing a sound. This is where conventional help, by obviously increasing the sound volume to a level one can detect. The other form is where the cochlea becomes damaged, and the particularly frequency cannot be detected- however loud the volume. Sadly, that is my predicament. The easiest way to describe it is to visualise a piano keyboard where random keys no longer work. The result is a discordant ‘white’ noise when listening to music; all tonality is destroyed. My particular problem is strings, where I cannot hear anything but a consistent mush.

Obviously, the inability to follow converstions is a problem, but so far Phonak Sphere has helped significantly in picking up constonants. But my personal heart-breaker is the sudden loss of an ability to listen to complex orchestral music. My head is full of musical memory, and I have tried to follow scores in an attempt to recreate- in my mind- a performance, but it is just very frustrating. Thus far, the answer seems to close the book on music, and try not to think about it. I was simply wondering how others coped with this specific problem- which I obviously didn’t describe well! I have had a number of suggestions such as get better HAs etc.

However, thanks for your suggestion. I will look into this further.

Nick

In reply to @nglfriend

I had that in my right ear and your ability is perfect! For me it’s like listening to a piano with missing keys through a broken buzzing speaker. I’ve progressed but not 100%. I just plan on moving forward as best I can.

Have you heard of Evelyn Glennie? A deaf percussionist. She’s amazing. Read up about her if you’re intrigued!

I couldn’t play guitar for about a year. Even with one ear it was too much of a struggle and it hurt. I can play without ADELs now. It’s a new sound for me in ways. I guess we have to tap into something else, something deeper than just what our ears could hear. It hits our whole body, and resonated with your heart and love for music. a much more powerful force than hearing! Look there while the scores are in front of you :heart:

OK first off: you have a very challenging hearing differential between left and right ear! So no wonder your brain is trying to make sense of the tones coming in, Like crocheting a sweater with one needle held by a friend 20 feet away?

I’m no audi, but would guess that aids in each ear could be programmed to work in concert while adjusted for the issues of that ear. My own is lower than a snake’s belly, but I enjoy music and concerts IMMENSELY - no doubt hobbled with compression, but my own perspective and years of wearing hearing aids has set that “normal” for me.

Do NOT give up! Aids are so vastly adjustable that your best strategy may be to delve into the of them. There is even a DIY group here that trades tips and tricks. SO much knowledge here.

NEVER close the book on music. Hey, I wouldn’t hear an M-80 going off at my feet, but have season tix to our classical music concert series, consider myself a hi-fi enthusiast, AND, would you believe my hubs always gets my opinion on how a system setup sounds cuz he knows that despite my aby-normal hearing, I have defined nuances that folks with fabulous hearing point out.

Please stay here with the gang and work through this.

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