Career in Music — Now Hearing Loss & Tinnitus — How to Cope

[RandomAccess10]

I don't know how people cope or what strategies people use...

I physically live in pain, I have high frequency hearing loss above 13k and loud hissing tinnitus at 10k. The upper frequencies in my hearing are now louder making everything TINNY and distorted, and I can't hear well in noisy environments....

Now this; I was a audiophile HIFI electronics design engineer and worked on designing mixers for Allen & heath, a lecturer in music and electronics for 20 years, and have performed all over the world playing with synthesisers since I was just 5, I'm only 40, music was my whole life, I literally have 120,000 tracks innmy music collection each with meaning, memories and pictures in my mind, I know the history and culture of each and every one, how can life be this CRUEL I want to literally die! How do I COPE, I can still hear but it sounds like hell.
Not only this, my vestibular system is also damaged, I can't keep my balance well and vision is now poor, what the hell am I to do??? Is it not rational that I'd want to commit suicide?

 

[Jason C]

Did anything specifically happen too cause the hearing loss or was it a cumulative thing over the space of years??
My high frequencies are gone and I can't hear 14k.

I am 7 months in. My hearing was damaged by a powerful alarm. In the beginning everything sounded wrong, music sounded a mess but over time it gradually improved too the point where music sounds ok, Its not perfect but I can enjoy music again. The tinnitus is another issue, that's up and down and I also have balance issues. Not dizzy but unsteady like more sway than I used too have. Thankfully no issues with vision for me.
I'm not sure if a career in music would be doable unless you could really control the volume.

 

[Dana]

Is it not rational that I'd want to commit suicide?

I was very sorry to read that. Indeed very unfair, unhappy, sad situation, but it is not rational to think about suicide because the time that passed since the commencement of your health problems is too short.
Sometimes time heals and I think you are one of the cases in which with the passage of time you will improve.
Now you are still under the shock of what happened, that's why you are thinking like that. We were all shocked at the beginning, to experience such a drastic change into our lives from one day to another. But time is on our side.
I would look into HBOT, hyperbaric oxygen therapy, (even transfusions) if your blood was poisoned with carbon monoxide.
The results of HBOT are better the sooner it is started. From what I remember it is effective only in the first three months, so hurry up looking into this treatment, so you do not regret later that you did not try it in due time.
Things will improve in time and your life, if it won't be "exactly" the same as before the event, you will discover that it will start to resemble more and more with what your life was, as time goes by. Be patient and optimistic.

 

[RandomAccess10]

I had the career in Music already all my life...I can listen to music butbit sounds so tinny now and dead and flat. The hearing loss was from carbon monoxide poisoning, which made everything go quiet, then I had oxygen therapy and developed hearing loss after that, I think the extra oxygen wiped out a load of hair cells or nerves...I don't know how to tell the difference...I'm sorry for your situation too, things are so delicate, I had no idea oxygen therapy would cause hearing loss, the cruelty of these issues being irreversible.... Is there any hope for us?

 

[Jason C]

Ahh ok, It's not easy too deal with for sure and the knowledge that I will never get the hearing I have lost back it so hard too accept.
Have you had hearing test etc?? I am still waiting for ent but the tests I have done show a dip at 4K and everything else is normal up to 8k
As for hope?? All we can hope for is that we learn too accept and cope with it.

 

[RandomAccess10]

Yes I've had a hearing test, the problem is, I'm OK upto 8k, it is now louder at 4k due to 'recruitment' I think... the horror is the carbon monoxide wasn't my fault and because the doctors only use the standard hearing test at speech frequencies, I apparently have no damage, apart from it destroying my entire career...how do you cope? I don't know about research into growing hair cells back.. I guess we all lose hearing with age so it could be a justification...

 

[Jason C]

Yes I've had a hearing test, the problem is, I'm OK upto 8k, it is now louder at 4k due to 'recruitment' I think... the horror is the carbon monoxide wasn't my fault and because the doctors only use the standard hearing test at speech frequencies, I apparently have no damage, apart from it destroying my entire career...how do you cope? I don't know about research into growing hair cells back.. I guess we all lose hearing with age so it could be a justification...

I'm not coping, everyday is a struggle and too top it all off I have a flu from hell that would kill a horse that started on Christmas Day.

The standard hearing test is very crude and outdated but it's been the same for years and won't change I'm sure.
Many different story's on here as too how people get tinnitus and hearing loss mostly not their fault, loud concerts, military service, blood pressure drugs, fire arm exposure or in your case carbon monoxide poisoning.

The thing that makes it harder for me is I caused my problems myself. I went too the alarm when I shouldn't have been anywhere near it so self hate is a massive issue for me along with everything else. Especially as I had warned myself about these alarms in the past as they are so loud. I even question myself as too why I warned myself over them! Why would I be anywhere near them?? They are high up on a building for Christ sake!! Weird!

I felt I had recruitment too during the first few months as even being in a room with people laughing sounded so loud it would start off as normal laughter and thenall of a sudden it was like someone was playing the laughter threw a loud speaker turned up too max but the speaker is broken and the notes all smash up.

Thankfully over time that also improved, hopefully yours will too. When the ear is damaged they need time too heal and it takes a long time. Months and years.
I dont think that medical science will ever be able to regrow hair cells and even if they can it's not going to be as good as it was. Chickens and fish can regrow hair cells in their ears but even when they grow back it's not as good as it was before the damage.

The ear really is an amazing thing, something you never really think about, as they just always work. Well until they don't

I trust you are taking precautions as too not expose your ears too loud noise??
I went too see a show last night and when I first got there I though it was ok, then the band started and omg it was loud, I had ear plugs with me and they really helped so I could at least enjoy the show.

 

[Reinier]

I recognise your anxiety.
After a noise incident my hearing was damaged.
I loved Hi-Fi sound and a wide variety of music. I made my own amplifiers, speakers etc...
I used to listen if I could pick up distortion in amplifiers and speakers.
That is is utterly useless now with distortion in my hearing.

I even planned to build a special listening room for the Hi-Fi.
After the incident I stored my stereo. I will not listen to it again.
It is not only the hearing loss. It is hyperacusis, tinnitus and distortion.
You can understand the stress this change gives.

But I will not "dump" my stereo and music!
At the end of a dark tunnel I see a glimmer of light (-;
There is a lot of interest lately in inner ear research (relatively).
I have this dream that in ??? years time there will be something to regenerate/repair part of some damage in inner ears.

 

[RandomAccess10]

Thank you for the responses. I blame myself too so I feel your pain the cruelty of it. The oxygen therapy I did myself with a machine because I couldn't find HBOT locally, I consulted a toxologist, who recommended it then bang, first session and tinnitus arrived in a high frequency hiss, because my hearing was already bad I didn't notice it, I think the oxygen killed my hair cells via oxidative damage...the carbon monoxide too, I had no idea I was being poisoned until it was too late...now it is way too late, I used to immerse myself in music so the only positive thing I see now is it making me more social..

I was the same with HIFI, had a complete dynaudio/roskan setup, then just one accident... I dare not listen, boxed all up, like a treasure I'll never get to see again, it's horrific, I just listen through a rubbish stereo now, I pretend. The hardest part is I have so much knowledge as I imagine you do reinier about HIFI and audio design, I was a phd lecturer in electronics engineering for audio, how does one just ditch all that knowledge? To carry on if you can't enjoy the fruits of your knowledge? When ppl are suicidal over a breakup or job loss it seems so trivial..

What is the current research? Does the 'recruitment' ever tame down, I heard hyperacusis does...

There's a few musicians out there with hearing loss, maybe that's comforting...

 

[Reinier]

I blame myself too so I feel your pain

I do not blame myself.
Someone else is to blame. One could argue that makes it harder to accept. Especially when that person does not understand what "al the fuss is about".
I always protected my ears from loud noise. There was no reason to protect my ears when this "accident" happened.

I don't know if this distortion I hear is recruitment. It could very well be. It starts at moderate sound levels (70 dB?).

Does the 'recruitment' ever tame down, I heard hyperacusis does...

I read different stories.
My hyperacusis is still pretty bad. After (soon) 2 years. My ears simply can not handle moderate sound levels any-more.
Tinnitus is always present. Sometimes manageable. Sometimes crippling.
Tinnitus frequency is 9.5 kHz.
What makes it very difficult to accept is that hearing/Hi-Fi was a passion. So I instantly notice distortions and other anomalies in my hearing.
I simply can not "get used" to this distortion. When I hear the distortion my anxiety gets triggered. How can I forget?? Sorry, but I am not helping you here )-;
But I realise al these thoughts have crossed your mind already. It is not that I am telling you something new. I remember the turmoil 2 years ago. Very soon after the noise incident. I instantly knew that something irreversible had happened.
Al I can say is that that level of anxiety tapers down (off).

I mostly visit this forum to see if there is news on research.
I donate a small amount to research each month. That helps me too, strangely enough.

 

[RandomAccess10]

We share similar situations, only difference is you have somehow managed. If I imagine a piece of music from the past the thought of never being able to listen to that again causes a manifestation of actual physical pain... It was so important to me, i wonder can the brain fill the gaps? Get used to the detriment, use an EQ to deal with the hyperacusis, obviously it's unacceptable and impossible, however it's too early for me to attempt to listen to anything without instant physical pain, I too was able to discern the subtle differences in audio electronics and now just cringe at my own ears, the only strategy I know of right now is distraction, or 'at least I'm not deaf'...still in denial I guess I was referring to a different reply when I said about incurring it yourself , how did you get such damage? I do find it comforting to find others dealing with such a heart breaking situation and coping, and your strength is inspiring, I'm literally wanting to die, it's like having any potential quality of life stolen in a snap, the times I took it for granted in the past, now listening in quality is like trying to walk on the moon, impossible. I feel like I'm being born again into a new life where quality of music and audio don't exist

 

[Dana]

The thing that makes it harder for me is I caused my problems myself

so self hate is a massive issue for me along with everything else

Similar story here, same problems besides tinnitus -regrets that I did not take care of myself, that I had no sense of self preservation...
Very hard ...
On the other side I read posts from people whose T was entirely caused by somebody else and they had no fault. They have a hard time dealing with this thought, which is the opposite of the thoughts that I have.
People who do not know what caused their T have it just as bad.
It's impossible to say which situation is less desirable.
Conclusion: T sucks! Irrespective of the circumstances in which it invaded our lives.
But we gotta fight, bringing out the best that we have inside!

 

[VRZ78]

Same for me I feel your pain. Music is highly distorted and my hearing makes some frequencies stand out of the mix which is unbearable. I manage to enjoy a big at very very low level but it's not the same. And I totally get what you mean by mind pictures for you songs. I have a playlist in which I've been adding my favorites song for years. When I go though it or listen to it I can tell for each song when I added it, where I was listening to it and what i was doing with my life at that time. All of that in images from my brain.
There hasn't been any new song in that playlist since all this started....

 

[VRZ78]

Regarding treatments/cure there is some stuffs that we can be excited about but it won't be out before 10 y... But you'll maybe be able to engage in clinical trials sooner.

There are also some alternative treatments available like LLLT but it doesn't work for everyone and is costly and not available in every part of the world.

There are some chances that your distorsion and H will go down in time like Jason C but you have to protect yourself from noise.

For me NAC and silence helps me to decrease the distortions but they come back after some time in noise.

 

[RandomAccess10]

Exactly the same I've been building the same for over 30 years, over 3000 tracks, , I couldn't dare to look at the moment, I programmed and published software for playlists, now over a million downloads, it's unbearable. I wake up everyday with a song in my head from that playlist, I can't imagine not being able to listen it physically hurts, how to bury that and forget that, it's incomprehensible

What is NAC??

 

[VRZ78]

Yeah me too for 3 months just scrolling through the songs would create pain in my chest abs stomach... Now I found the strengths to listen to it a bit again and find myself sometimes enjoying the memories. But it always come to one song that screw it up and I turn if off.

NAC is a supplement that has been shown to help protect your hearing. For more efficency you can take it with magnesium.

I don't know what your financial situation is and where you live but if you're wealthy and live in Europe you should try LLLT asap. There are info in the alternative treatment section of this forum. But it's highly controversial, no side effects though.

I'm suicidal too but I wouldn't touch any antidepressants drugs as they can worsen tinnitus and your hearing when you withdraw from them. I don't really recommend them.

Hopefully we'll be able to add some songs to the playlist at some point....

 

[RandomAccess10]

I'm taking antioxidant astaxanthin or something, thing is I learnt too late..if I'd have known HBOT oxygen therapy would cause more damage... I read it was the cure for SSHL and CO poisoning. A catastrophic mistake
Is there much success with LLLT?

 

[bill 112]

I'm taking antioxidant astaxanthin or something, thing is I learnt too late..if I'd have known HBOT oxygen therapy would cause more damage... I read it was the cure for SSHL and CO poisoning. A catastrophic mistake
Is there much success with LLLT?

You didn't do anything wrong,lots of people do HBOT after noise trauma because they're trying to help the problem,how are they suppose to predict the unforseen consequences of such a treatment?Its like if you broke your leg and you get a cast put on it but it later turned out that the cast somehow caused your leg to get worse,how are you suppose to predict such a thing?

Also it might not have even been the oxygen that caused it,the poisoning could very well be responsible for all of it but because you done the therapy and got worse during it you associate the oxygen as being the cause when it very well may have nothing to do with it.

 

[VRZ78]

Some have success some doesn't. It's a bit of a shot in a dark but it can work. Check the threads in alternative treatments.

Did you have a course of Prednisone ? It can also help but the window of opportunity is very short.

 

[SilverSpiral]

I lost it all too. Be glad you made it to 40 being able to enjoy music I guess. I get sick to my stomach seeing people emailing me saying this old track from 2009 got played by so and so here, people asking about licensing old tracks for their compilation/mix. Asking for new stuff. I'm too messed up to let any of them know what happened, all because of one horrible incident.

 

[RandomAccess10]

Prednisone but I think much too late and I've heard the side effects are terrible.. The same with antidepressants, in fact I was taking mirtazapene at the time of the carbon monoxide poisoning, and that masked the symptoms of the CO poisoning, dizziness etc, I thought it was the drug...also I'm sure the mirtazapene constricted the blood vessels making the problem even worse...I fell into a very nasty trap that has obliterated my life... I read a lot about mirtazapene, I think it's also ototoxic for some... A tragic combination. The laser therapy does what then? Thanks for your help.
SilverSpiral how do you cope with it?

 

[VRZ78]

Yeah Prednisone has some nasty side effects. It's what got me into this mess because I had an infection and its an immunosuppressant. I guess the doctor didn't see the infection..... He didn't even ask me if I had been sick or something I just said I got T out of the blue and he prescribed it... Soon after new T tones, H and distortions... Great...

Apparently laser helps the natural recovery by sending the energy contained in the light to the cochlea (I'm no expert). Some studies found out that it helped compared to placebo, other not. Apparently the method plays a big role in the efficency as its difficult to make the light reach the cochlea.

 

[SilverSpiral]

SilverSpiral Prednisone but I think much too late and I've heard the side effects are terrible.. The same with antidepressants, in fact I was taking mirtazapene at the time of the carbon monoxide poisoning, and that masked the symptoms of the CO poisoning, dizziness etc, I thought it was the drug...also I'm sure the mirtazapene constricted the blood vessels making the problem even worse...I fell into a very nasty trap that has obliterated my life... I read a lot about mirtazapene, I think it's also ototoxic for some... A tragic combination. The laser therapy does what then? Thanks for your help.
SilverSpiral how do you cope with it?

I have no idea, this life is very bizarre and painful. I just saw you mentioned you worked on A&H mixers...my favorite, or maybe SoundCraft. Like you said "I feel like I'm being born again into a new life where quality of music and audio don't exist". That's exactly it, except since we can't block out all sound we can't forget/ignore it. I already always felt I was stuck in another world, but music was the only way of relating to/communicating with the normal world, now the line has been completely severed.

Besides the hearing loss/distortion, how is your plain/constant tinnitus?

 

[RandomAccess10]

This breaks my heart, that you mentioned about being severed is exactly it, images music created for me were far more real and beautiful than reality, now we are stuck in a bland world I don't want to be in, the only thing I can think is indeed distraction and maybe something like video games or other to escape reality..

My T is a high freq hiss, being white noise I'm assuming a whole load of damage has occurred there's a high frequency tone at about 10k too, and waking up its horrendous, loud, it is basically someone took a chunk out of my hearing and replaced it with noise..., I can just about ignore it with the TV on but not in bed. Everything I hear misses that sparkle, and it's like all the highs have been mashed into one sibilance high that is LOUD, like my whole world is now a low quality YouTube clip...the upper harmonics of everything don't exist so everything sounds dull and lifeless...I also have reduced volume across the range, and frequently have to ask ppl to repeat themselves...I'm practically deaf in a pub

I've indeed had a good run at 40, probably listened to more music than any person would in several lifetimes, but that kills me cos noone else is me and those pictures in my head are going to die, I'll never forgive myself and never stop saying WHY, you can't prepare for it...I hate being alive in this state, if I was reborn like I have to be to cope, then I wish my soul would go with it, I want to grieve the person I was and have ppl in my life remember who I was not just see me suddenly stop being involved in music...I had released a lot of music too. I have ppl asking me to master stuff for them, it's horrific, just one mistake and lifes most beautiful thing is gone forever: (
I don't know how/if recovery happens, any success stories or coping methods you have found?

 

[SilverSpiral]

This breaks my heart, that you mentioned about being severed is exactly it, images music created for me were far more real and beautiful than reality, now we are stuck in a bland world I don't want to be in, the only thing I can think is indeed distraction and maybe something like video games or other to escape reality..

My T is a high freq hiss, being white noise I'm assuming a whole load of damage has occurred there's a high frequency tone at about 10k too, and waking up its horrendous, loud, it is basically someone took a chunk out of my hearing and replaced it with noise..., I can just about ignore it with the TV on but not in bed. Everything I hear misses that sparkle, and it's like all the highs have been mashed into one sibilance high that is LOUD, like my whole world is now a low quality YouTube clip...the upper harmonics of everything don't exist so everything sounds dull and lifeless...I also have reduced volume across the range, and frequently have to ask ppl to repeat themselves...I'm practically deaf in a pub

I've indeed had a good run at 40, probably listened to more music than any person would in several lifetimes, but that kills me cos noone else is me and those pictures in my head are going to die, I'll never forgive myself and never stop saying WHY, you can't prepare for it...I hate being alive in this state, if I was reborn like I have to be to cope, then I wish my soul would go with it, I want to grieve the person I was and have ppl in my life remember who I was not just see me suddenly stop being involved in music...I had released a lot of music too. I have ppl asking me to master stuff for them, it's horrific, just one mistake and lifes most beautiful thing is gone forever: (
I don't know how/if recovery happens, any success stories or coping methods you have found?

I can't even play video games with the sound on, I play them on mute to distract myself, most games have music in the background and I just can't bear to hear music, even through horrible tiny tv speakers, sound effects would be distorted too, but thats not as disturbing as music being distorted, luckily I can still tolerate speech, because speech is very sticatto, and of a limited frequency range, so whatever slight distortions heard over it aren't too bothering. There are 3 points in the frequency range, where I can't hear the definition of the sound anymore, instead I just hear this horrible resonance and it is ALWAYS louder than the actual source of the sound, it makes you feel so bad, like even if you mentally try to ignore it, music makes you feel things, and music that sounds bad, and has screeches over it makes you feel BAD. I also hear the same thing in cars driving by, when it rains, in the shower etc, it makes trying "masking" my constant T tones completely redundant.

I've not read about carbon monoxide poisoning on here, so you could have hope it may get better, you might have a better prognosis than acoustic trauma. I suppose since I don't know how carbon monoxide poisoning affects the ear, I can't tell you it might get better without equally saying it could get worse, especially if there is toxic stuff in your middle ear(?) that could be why it got worse, not the Hyperbaric Oxygen Chamber(?) I've never heard of Hyperbaric Oxygen Chambers worsening conditions, but it's actually one of the treatments I've read least about. You're still in the early stages so you should wait and see either way.

As far as success stories/hope. I've been holding on to hope of recovery for these past 9 months, and taking nearly every health supplement I've read about possibly helping on this board. That hope is waning with each passing month and each amount of money I spend on health supplements to no avail.

 

[SilverSpiral]

Oh and if you mean recovery in terms of getting your life "back" with hearing issues. That's called habituating. I'm nobody to give advice about that one. Although I probably am "habituated" to my constant tinnitus, even though one of the tones isn't the least bit maskable. its the other hearing crap that is worse, and prevents "habituation" to the whole situation.

 

[bill 112]

Oh and if you mean recovery in terms of getting your life "back" with hearing issues. That's called habituating. I'm nobody to give advice about that one. Although I probably am "habituated" to my constant tinnitus, even though one of the tones isn't the least bit maskable. its the other hearing crap that is worse, and prevents "habituation" to the whole situation.

How bad is your H spiral?Like how sensitive to sound are you and how much does it hurt?

 

[SilverSpiral]

How bad is your H spiral?Like how sensitive to sound are you and how much does it hurt?

I've been avoidant of sound enough that I don't know how much it hurts. Something like someone putting cutlery away in a drawer 6 meters away (not roughly, in fact while knowing it will bother my hearing so doing it far more gently than a regular person would) causes my ears to be bothered and body/brain to cringe, it's not the same as regular physical pain, it's more like a "zap" and reaction, like if somebody suddenly shone a super bright flashlight into your eyes, you'd feel a sensation, and react to it involuntarily, but it's not quite the same as regular pain.

 

[bill 112]

I know what you mean,like today I was in my grandmothers and they were cleaning the dishes whilst I was in the other room,everytime they clinked the plates together or put them down hard it just felt awful to my ears and head like a stab to the system.

Too much and my head hurts and I get a hot burning scalp to accompany it.

If someone raises their voice suddenly it shocks my entire brain if I'm not anticipating it the same with watching tv,if there's a sudden volume change I jump out out of my seat as a result.

It sucks.

 

[Bobby B]

Actually LLLT, low level light therapy ,is the cheapest option from all what has been mentionned - by far at the moment - you don't need to be wealthy at all since the increased availability of high power near IR light source from LED, you can get a 1500mw to 5000mw power light source in various wavenelgths in a device ready to use out of the box , for 12 to 50 dollars .

Yes in the past LLLT could only be done by lasers and those industrial cheap lasers were packaged into expensive medical devices or treatment but this is over now


I would strongly suggest LLLT - it will not cure your T but since you are early in the onset you can get some valuable sound quality improvements which in turn will decrease H and even maybe soften T a bit.
And it's safe
There is a LLLT thread in the experimental section . Dont waste time LLLT does not work well after too much time has passed.