How Are Tinnitus and Hyperacusis Not Supposed to Ruin Your Life?

I’ve had tinnitus for 1.5 years and recently had a dramatic worsening where I got noxacusis and sound distortions. I’ve had to give up my martial arts class with loud music, headphones, concerts (my dad is a musician and I can no longer see him perform), the movies, 4th of July and other loud parties, I’m constantly paranoid about a loud motorbike passing me on the street, had to give up on dream of becoming musician, can no longer enjoy music due to distortions, don’t enjoy the city, the list goes on.

I’m sure many people share my experience. I’m only a teenager and am now deprived of most youthful joys. How am I supposed to lead a fulfilling life with these conditions? Career options are a whole lot smaller and I continually have to refuse events because of noise level. Today my parents went to an outdoor jazz concert and I couldn’t come out of fear of a setback. I’m depressed and desperate for a cure. This is no way to live life.

 

The only answer for that is that life is not fair, but that's how life is. For us the worry is hyperacusis, tinnitus, hearing loss. Others have other problems... it's just life.

Once the problem is there, we can only try to live with it and navigate around it the best we can.

 

I'm sorry you're going through this. I only have tinnitus and some mild hyperacusis, so I can't really offer any advice on the noxacusis front - but I can give some emotional support. <3

I completely understand you. This affliction is such a cruel and unfair thing to happen to anyone. However there are promising treatments in the pipeline. This is, I believe, the first time ever something to help relieve our suffering has really been on the horizon. If this had happened 10 years ago, we really would have been screwed.

Also have you spoken on here to any others in regards to the noxacusis? You might find it will help to hear advice and success stories from them.

It seems like music was your absolute passion. Actually it seems like a lot of people on here were/are passionate about music. So again, you're not alone in this community. I myself lived for music. I sincerely miss it. However, I also realise, that unlike yourself, I didn't build a career around it - but others on here did/have.

@Jazzer was a great musician who I believe (but correct me if I'm wrong Dave) had to give up due to our horrid symptoms. You might want to look him up. He's a pretty inspirational character.

If life has to change and adapt (which it shouldn't have to) but if others can find hope, peace, and satisfaction again, I believe you just might too.

Also ears take an incredibly long time to heal, but they can. Just keep them well rested. Use ear protection, and if you're not comfortable around sound, then keep away from it. (easier said than done, I know!)

Don't lose hope.


Steph <3

 

I just can’t cope man. You’re right that music was my one escape place and now it’s been taken away from me. How can I stay hopeful when there’s nothing to hope for except some semblance of a normal life without any loud venues... I can’t manage school and life in addition to this affliction all at once...

 

To be honest, you've haven't really got a choice. You've gotta learn to adapt. I'm sorry this has happened to you - I really am.

Steph

I should add that it will become easier. When I first developed T and hypercausis, I was absolutely devastated. I wanted to die because I knew I could no longer do what I loved. However, I've slowly managed to enjoy life again. I believe you will too. Baby steps my friend. Baby steps. Don't be too harsh on yourself. You'll probably find in time you'll be able to go out again - just with good ear protect once your ears have healed.

<3

 

All these hugs but no real answers... fuck this.

 

You’re goddamn right - this shit is a curse, but we gotta defy it and have the last laugh.

 

where does "supposed to" come from? Like, where does the idea that anyone deserves, gets, or is even capable of having a life full of "richness and joy" come from?

I think it's a false dream which has been sold to us by post-WWII advertisers, in an opulant society which has until recently been stable and marked by a burgeoning middle class. There have always been a lot of miserable, disenfranchised people which were just swept under the rug by the Normam Rockwell Nuclear Family image. America specifically has always been built on the back of a somewhat invisible class of people who are mostly so busy working 3 jobs to keep the whole pyramid propped up that they actually don't even have time to think "am I happy? How do I become happy?"

Having to come to terms with serious, permanent, unfortunately health conditions when we're teenagers sucks -- I know, because I remember going through it. However, whatever your situation -- if you live long enough, then you start to see the hells that nearly everyone goes through at some point. Yeah, there's no "equality" there, some people just get dealt a worse hand than others, because the universe is a pinball machine and genetic variance goes a long way.

My point is that you have to find or make your own happiness, or not. There's no magic key to any of this. You're at the beginning of a maze, your maze looks different than anyone else's so the advice of others may be of limited use, and to some extent -- you've actually been in this maze your whole life, you'll be in it until the end, and it's just that you're becoming aware of the darkness and walls around you because you're being forced to process chronic illness on top of "normal coming of age angst".

It sucks, but you can get through it. You're young, if you really protect your hearing, you may actually recover in some ways that old farts like me won't, because you still have ~5-7 years of serious brain development happening. You might want to look at how specific cognitive practices (meditation, yoga, etc) can push that development in the "good" direction. Positive change from these practices is still very possible when you're older, but, younger brains take to things faster.

Good luck.

 

This post hit me so hard. I also want to be a musician, and now thanks to medical negligence and noise induced tinnitus I can't...

I feel for you and hope you will get better.

 

I know it’s difficult, but we have to optimise for what we have. My instruments are currently gathering dust and here I am writing on Tinnitus Talk... All those years of playing and thousands of hours practicing. I’m also hoping that the sound distortions + hyperacusis get better and I can get back to it again.

I keep reminding myself that everyone has their own challenges and there are no guarantees in life. I’m planning to focus on reading, programming, relaxation... some things that don’t require my ears to be in top shape. I understand that even these things are harder with the incessant ringing - concentration is a real issue at the moment. If it doesn’t go away then hopefully habituation can help me on this front.

You can still have a worthwhile and productive life. If there has been one good thing come out of COVID-19, it’s been the ability of employees to work remotely. I think this really starts to level the playing field for someone with hyperacusis. I’ve been working from my study and it’s been almost a year since I stepped foot inside the office.

What do you enjoy that doesn’t require your ears? Fishing, swimming, lifting weights, reading, writing, drawing, tinkering with your computer... There are many things that you can still enjoy.

Now I don’t want to come across as being blindly optimistic. There is a real isolation that comes with hyperacusis. I find myself constantly excusing myself from social interactions. People are just habitually loud and are unaware of just how sensitive the ears can be.