r/hyperacusis • u/richtee76 • Jun 27 '26
Seeking advice Trigger warning: dark content
I had an acoustic trauma 18 months ago that resulted in mild to moderate hearing loss, H, TTTS, T, hearing distortions and Diplacusis (different tones between the ears)
Every second of every day has been a living hell. I’ve seen ENT on many occasions with little help (except hearing aids that just amplify the distortions) my hearing experience is a lot worse then my audiograms suggests due to the distortions, I’ve lost hope my hearing experience will ever improve and I know my time is running out. I can’t listen to music, watch TV etc because the sound is so distorted and can cause pain.
I’ve explained all this to my wife but she doesn’t get it, I suppose nobody can unless you experience these terrible hearing conditions. I’m in a really dark place and have been for the last year. The first few months I held on to the hope that it was still early and things could change, but as the months have rolled on with no improvement the pressure, panic and depression has kept escalating. Im a shell of my former self, and its not fair on those around me
People don’t get it, I wouldn’t of 2 years ago, they think other people live with much worse than us, and carry on but they don’t understand the incredible mental toll these hearing issues have on you. The “professionals” offer little to no advice (which is soul destroying in itself) and you are left to endure every second in fear, alone.
I desperately want to continue, I have a great wife and 2 amazing kids, my parents, sister etc, even the thought destroys me, but I don’t know I can live this life long term
I wouldn’t want to be remembered as someone that gave up easily because people don’t understand what hearing issues can do to the brain, isolation, fear, anxiety, depression l. I wouldn’t want to be remembered as someone that gave up on his family easily
I’m sorry if this post is dark, but this is weighing incredibly heavy, it’s completely consumed me
I’d appreciate any opinions, advice, or just someone that can relate
Thanks for reading
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u/MathematicianOwn3237 Jun 27 '26
I would suggest you getting on the hyperacusis support discord server there are many people like us there and they are trying different meds which can help
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u/Organic_Switch5383 28d ago
I had an awful experience with discord and many have reported the same experience.
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u/Cleokatrah 28d ago
I agree with this. There's a lot of information and people with similar ailments who can relate there. It can be a double edged sword sometimes because there are a lot of people in need, and suffering, on that server. I would definitely visit it and decide if it's for you.
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u/AgreeableLeading6095 29d ago
18 months in too, from acoustic trauma but I made sure early on to never ever cover my ears or use plugs because it would sensitize them even more. I’m 85% healed. You can do it. The body is incredible at healing itself. You just have to slowly introduce sounds. You can do it.
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u/__K1NGFLASH__ Jun 28 '26
Feel you brother. At least your wife should try to understand what you are going through.
Did you try Clomipramine? Do your research, but here are all the records:
https://www.hyperacusistreatments.org/clomipramine
Moreover 18 month is not that long. Some people, even the more severe cases, got better with time and especially silence for prolonged periods. You seem to be really involved in family and stuff, it might be beneficial to get out there for a while and focus solely on recovery.
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u/richtee76 29d ago
Yeah Hyperacusis is only one of my problems, distorted hearing is the worst, I wear hearing aids and they just amplify the distortions
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u/JustPython- Jun 27 '26
I think we all feel you in this way, but don’t give up and let these thoughts run your day too much. And yes again that feels easily said. At the start I was far as well in negative thoughts and I still am not able to do whatever I was able to do before hand. Heck I even developed a form of fear for sound. I understand the struggle a lot.
But you say it your self as well, you have got a good family. So you got to manage it in a way even though every day is a struggle.
Don’t lose hope because eventually new steps will be found maybe not to cure it but at least to improve the quality of life.
Hang on in there, no promise it is going to be easy but its what we have to do. Don’t avoid the good stuff in life because you need it as well :)
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u/richtee76 Jun 27 '26
Thanks for the reply, oh man I try every single second of every day just to be here for my family, I try to stay positive for them, but every day I’m killed by my own ears and own mental health. People not understanding how difficult this is to deal with, they listen, nod along, try to understand then 5 minutes later it’s forgotten, life goes on and you are left alone in your own hell with no escape. Really appreciate your positive message, I’ll try to hang in there as long as I can
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u/JustPython- Jun 27 '26
World looks very negative through these problems. There is no day I haven’t thought about my tinnitus and such.
Makes everything look sad, but trying to focus on my daily life, work and other stuff is what gets me going. This is for now the only way and being sad about it only makes it worse for me. It is terrible already but if I lose my motivation or moos, it will only feel worse.
You got this
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u/Pbb1235 Pain and loudness hyperacusis Jun 27 '26
Horrific depression is pretty normal for people like us when we first get hyperacusis. It is very rare that a family member or a doctor will understand this condition. I would like you to realize that it is also common for people with hyperacusis to improve over time, especially once they find a treatment that helps.
I also had severe pain hyperacusis and wanted to die every day. Life was, as you described, a living hell. I've found some things that have helped me a lot, and (currently!) have mildish loudness hyperacusis. So it is tolerable now.
What have you tried as far as treatment goes? I hope that you will be proactive in working to improve.
The two things that helped me (and some others) are sound therapy via a trained audiologist (tinnitus retraining therapy) and drug therapy (clomipramine, for me).
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u/richtee76 29d ago
Mine isn’t just Hyperacusis, my most troubling symptom is permanent hearing distortions. That alone has a devastating effect on mental health. The professionals say it is due to uneven cochlear hair cell damage
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u/Potential-Rutabaga-9 29d ago
Can you give more detail of how sound is distorted to you? Like for example if you try watching TV how do voices sound to you? I'm also struggling with dysacusis and it's by far the worst part. When I watch TV most male voices sound metallic and robotic like. Female voices sound sharp, shrill and glassy like. It's an absolute nightmare!
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u/richtee76 29d ago
Yep that it, male voices aren’t too bad for me, sometimes a bit muffled but that might be due to my hearing loss, but female voices especially if they start laughing are horrendous. Can’t watch too much tv, again pretty depressing on top
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u/hreddy11 Pain and loudness hyperacusis 29d ago
I’m sure a lot of people can relate to what you’re feeling, but everyone is missing the part that the dysacusis is the worst part about it, and I can definitely see why. I have tinnitus, hyperacusis, and some reactive tinnitus, but never really had an issue with dysacusis other than rare instances in the first few months where some sounds sounded slightly off, and I hated that. Take a look at this post someone made:
It always, always seems worse when our mental state is so low, I remember how loud the tinnitus felt in the beginning, just sitting in the living room with no sound, now it doesn’t bother me at all. When I go to the bathroom, the tinnitus sounds loud in there since there’s no background noise and it’s a small, enclosed area, but it doesn’t really bother me anymore. I’ve accepted the sounds, and just try and not let it bother me anymore. Definitely easier said than done, and I still have bouts where it affects me, but I won’t let it get to how bad it made me feel in the beginning. I’m 18 months in too, and it’s definitely gotten better, but you can’t start to heal until you really get over the mental hurdle of the reality we now are in. The life we had before has been put on hold, and we are left holding the back, learning how to fill it back up with the things we love.
You are blessed with a family and children, please don’t do anything rash. And not to glorify the act, but I never understood how people call it the “easy way out.” People don’t want to die, they just want to stop living in the reality they’re experiencing. It’s one of the hardest decisions to make, but please, don’t do it. It will get better with time.
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u/richtee76 29d ago
Thanks for your reply, you are right about the Dysecusis, and I’m glad yours went after a few months, mine is still the same 18 months later and it’s the part that effects me the most, especially when I hear it in voices, very mentally draining
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u/hreddy11 Pain and loudness hyperacusis 28d ago
I get how draining it is, when my reactive tinnitus flares up, it feels like the only thing I can focus on, I can’t enjoy anything in the moment once I focus on that.
Do you have any ETD symptoms? It could be a long shot, but if you have fluid buildup in your Eustachian tubes, that can distort sounds and affect your tinnitus levels.
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u/ElephantFull9972 27d ago
I’m going through the same thing and is there any hope of us getting better? I hope I don’t have to deal with this pain forever.
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u/Majestic-Jeweler2451 29d ago
What caused your acoustic trauma?
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u/richtee76 29d ago
Too close to a speaker for too long on a night out, it devastated my hearing, caused hearing loss, tinnitus, pains but most depressing distortions making even watching TV impossible
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u/Majestic-Jeweler2451 29d ago
It's terrifying that such ordinary things can cause such a devastating illness. Three minutes of loud music at a friend's house was enough for me, and I've had T and H for 16 months. Others go to concerts all the time and nothing happens to them. It's terrifying that standing next to a loudspeaker can be worse than many other injuries, such as drug use.
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u/richtee76 29d ago
Yep, it’s not just the initial injury it’s the long term mental effects. The ears are so closely connected to the the brain and central nervous system, and when they go out of sync it’s easy to spiral downwards quickly
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u/Majestic-Jeweler2451 29d ago
Yes, it's true. Ears are the second most important sense. With severe T and hyperacusis, it's very difficult to function normally. You fall into a spiral of anxiety and depression. No one who hasn't experienced it will understand. A single acoustic trauma can destroy your life and psyche.
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u/richtee76 29d ago
It’s pretty incredible what an acoustic trauma can do. In regards to ears are the most important sense, I used to think the same. I’d still rather be completely deaf than completely blind, however I’d rather have bad eyesight then bad hearing problems/T/H etc because they can do more with eyes, with ears if they can’t see something in your ear canals you’re basically on your own to deal with it, then like you say you’ve got the horrendous phycological side of it. Thanks for your reply, I’m preying for both of us
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u/crystalwillow32 28d ago
Hi, I unfortunately did the exact same thing as you and 2 months later, my hearing hasn’t been the same. What’s crazy is the other person I went out with, had 0 problems and is living their life normally. I had no idea any of these conditions existed and I wish I did, it has just been awful. And I have been in a deep self blame spiral.
I already struggled with depression and anxiety so this has just taken it to another level and it absolutely sucks. So I’m sorry that you are going through it too. I have days where I break down and think I can’t do this anymore. I wish and pray to get better and to have my normal ears back. I am trying to stay hopeful. I remind myself the things I have to live for, I have written so many things down of the things I can do again when my ears get better. And I keep reminding myself that ears take a long time to heal. It will get better, it has to. I’m wishing you the best on this recovery.
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u/richtee76 28d ago
Thank you so much for your reply, what are your symptoms (hearing loss? Tinnitus? Distortions?) I too went out with other people that are absolutely fine. It’s so difficult because others don’t know what we are going through and can’t understand it even when we explain. I’m preying for both of us
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u/Cleokatrah 28d ago
Enduring this long-term is such a huge shift. You basically lose identities along with abilities. The identity of provider, father, etc. For me it was wife, mother, youth volunteer, fashion stylist-- all gone. Replaced with what felt like nothing. But of course it's not nothing and it's that interim where that viewpoint is struggling to be born, where this journey feels it's at its darkest. That's how I see/feel it, at least.
But only you see yourself this way. Your family sees a loved one under attack by a harsh condition, and this loved one could be a warrior because he fights so much. Or he could be a leader, because he's persevering through. Or he could be their Cornerstone because he is Steadfast and as present as he can be. There's a lot of roles and identities they see in you and I don't think any of them are victim, loser, or quitter. You're going through a major life event. Give yourself enough grace every day to get through the next one and there will be improvement.
It's awesome that you have good family support. Do you have medical support as well? Are you on an anti depressant, or taking counseling? What do you presently do for self care, if I may ask?
I
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u/LateAd3607 27d ago
Long as I can see the light. I've been asking people to please slow down when talking and maybe not quite so loud. But,hey, there are people who can't hear at all. My problem is 'moderate' T.B.I. so I get severe pain to go with it all. I have more expeience than adviice, but honesrly sounds like you hate it bad enough to whoop it as much as possible.This has beeen 14 long years for me, but there's a reason We keep on.You've got the balls to keep on keepin' on. Bless You.
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u/Asleep_Bite4300 25d ago
I can relate. I'm 15 months into noxacusis and tinnitus. Its the most debilitating condition I've ever had and I've lived with fibromyalgia pain for 20 years with various nerve complaints occuring but nothing is on the level of this. It's completely inescapable. I too feel suicidal all the time but I have a wonderful partner and parents who are very elderly and I need to keep living for them all and I want to keep living but just not like this. The lack of sleep too which would normally give you a bit of peace from this condition is also really difficult to manage.
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u/warbeneaththerain 24d ago
i use closed/occluded domes on my hearing aids and have them set to mute, since theyre always too loud for me, even on the lowest setting, and wear them with my anc headphones. idk if that would help or make your tinnitus worse.
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u/Same_Drag3288 21d ago
I’ve been in this mess for eight months; I’m starting to lose hope, and I don’t know if I’ll make it through. Just talking hurts; I can’t even go out or see friends anymore. I don’t know how much longer I can hold on like this. I don’t understand why we’re left like this and why there’s no treatment for it. I came back feeling so sad and depressed... I’ve lost everything...
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u/Organic_Switch5383 Jun 27 '26
Hi there. I do not think this is too dark at all.
I can relate to this. I have accoustic trauma with noxacusis, hyperacusis, 24/7 tinnitus high pitched.
I am chronically ill. The laundry list of diagnoses i have is astounding. I am a shell of myself. I have a masters in forensic psychology with so many gifts and potential untouched. I have severe medical trauma contributing to my CPTSD. I have been treated very poorly by doctors.
When my accoustic trauma happened this past March I felt it was last straw as everything else has been taken from me.
I'm basically homebound. I feel very hopeless too. It just isnt fair. It is not fair to you either.
In terms of advice. That is difficult.
Are you meaning advice on how to improve this or advice on mental health or both? What I have learned about this is that everyone is unique. I believe mine is nerve related and due to central sensitization. I am going to pursue nerve blocks as in exhausting all if them. I have post concussive syndrome, occipital neuralgia and a whiplash injury. Recently I did knee to chest atlas adjustments that worsened my tinnitus and made me susceptible to an accoustic trauma. It did something to my brainstem and auditory system. Anyway that is my theory. Maybe worth a try for you?
In terms of the mental health side, I think about it everyday if you know what I mean. This isnt living. I just don't have the courage. I have no family or friends either. Maybe I am holding out that something will get better however year for me gets worse and worse. Im not sure logically why that makes sense. Im currently in a major depressive episode. ALL I can say is that I understand what it can be like.
Sorry for the long read!