It Has Been 7 Years with Tinnitus — I Manage to Live My Life

Hello everyone,

For 7 years, I was a passive reader. Until now. I believe I owe you my story and how tinnitus made my life and myself different. I prefer to call it just "different", because in some aspects the mental torment from tinnitus has led me to where I am now, and without it I would be certainly someone and somewhere else and I am not sure I would have accomplished all what I have.

I always had a passion for the music. My father brought me into it, but at some point my music journey diverged from my father's. Around 1991 we moved from the flat into a single-family house. I got my own room, first Walkman, some old reel-to-reel tape recorder and 8-bit Atari running Chaos Music Composer. At that time my parents also installed satellite TV and I started regularly watching MTV after school. It was the time of Grunge and Nirvana & Soundgarden became my favorite bands. I was at the age of 12.

Since then I was listening to the music really a lot and I was into making some music too. I played keyboard, started learning to play guitar. I dreamed of being a musician. My parents were not supportive though. I was never playing music too loud. I understood the basic concept that people may become deaf from loud sounds. Nevertheless, it was just a crude simple understanding what hides under "deafness" umbrella term.

Fast forward, I went though the high school, then university - accompanied by the music. I was listening to the all genres, but I particularly liked (still like) Progressive Rock, Jazz and Metal. I was occasionally going to concerts, but not very often. In the beginning was rather careless about hearing protection, never heard about earplugs, like everyone around me I knew.

I remember one particular concert. King Crimson around 2002. It had certainly a great impact on my hearing. It was much much louder than everything before. When I arrived at the site, there were some paper sheets sticked around with a message "This concert will be loud, make sure you have sufficient protection". I had no idea what was that. Nevertheless nobody there cared about providing any protection, even cheapest earplugs, given that the tickets were rather expensive. I was there together with my friends and my girlfriend, who is my wife now and she was also affected. That concert was more like a torture than a pleasure. Sound was distorted by the excessive loudness. I had some paper towels in my pockets, so I was sticking them into my ears, still it was not enough, so I was putting fingers in my ears too. Yet, people around were mostly listening with their ears "wide-open". After the concert I first fully experienced the high-pitched ringing in the ears. Before, I knew only the low-pitched humming in the quietest moments that has soothing effect on me. The ringing eventually disappeared in few days though, but since then I started carrying earplugs at concerts.

Fast forward again, in 2012 my son was born. I was working at home as a freelancer while doing PhD studies. I was under lot of stress with my own business, small baby, PhD and helping my parents. I have no siblings. I was using headphones to get some isolation from the surroundings in order to move forward with some work. I was working a lot. In the beginning of 2013, we were often watching some cartoons on my iMac computer. I was often alternating between built-in speakers, external speakers and headphones. Constantly putting the plugs in and out. One evening when I was tired, plugging my new headphones, I was completely unaware the volume was set all the way up, I blasted my ears. That blast took maybe 1-2 seconds, but I knew something was wrong afterwards - I had this sensation of being struck in the ears. Tinnitus did not appear immediately. I panicked - what just happened. I started reading about what loud sound exposure can do to you. Then at the age of 33 I discovered that "loosing of hearing" is more complex than just not being able to hear "well", as I thought before. Also I started learning about existence of tinnitus - exactly when it arrived to me in next days. As if I have created something that did not exist before and it has been delivered at my request.

Next months I was desperately looking for some help in the hospitals, consulting many ENTs and other specialist, slowly realizing that if this does not go away by itself there is no other cure. Additionally, there is no common agreement that this is a serious problem and no common approach to avoid this. Most of the doctors I have met, were understating the issue, convincing me that I am making a big problem out of nothing. I realized almost nobody cares about it. You can buy some audio hardware that can almost instantly ruin your hearing if you are not careful. Concerts are played so loud that sooner or later you have some problems with your hearing. Nobody feels responsible. And that passion for music becomes eventually a curse for many, including artists themselves. That was a turning point.

Just not to make this text any longer, during my 7 years of my struggle with tinnitus, I went through periods of hopelessness, when my father finally died after lengthy fight for his life - I was a witness and a participant. Some moments were really bad, but then I decided that I have my own family and there is no better option than to stay alive and be useful to others. I had to finally accept I am not same person anymore, stop blaming myself and realize I can still have a meaningful life. I managed to finish my PhD. 3 years ago we moved to Switzerland. Now I work on improving cancer treatment devices. I am still passionate about music. When my tinnitus is not bad I play my guitars, synthesizers. When it gets worse I just wait and do something else e.g. reading books, playing games, cooking, hiking... reading Tinnitus Talk forums. There is still some hope in me that things will get better either for me or for the others, but I try live my life regardless of anything.

 

Thank you for posting this!

 

Welcome. It's awful when we become a victim of the music we love. I also didn't understand the full picture of hearing damage until it happened to me.

 

Thanks for sharing your story! Glad to hear you’re doing ok. Wish you all the best

 

Thank you for sharing your story. You have overcome a lot and still achieve academically and professionally. You may consider adapting your story to post it in the Success Stories for all others to learn your wisdom and strength in surviving bad tinnitus and still thrive in life.

 

Thank you and everyone for your responses. I wish I could call my story a success. But the story is not over. I don't know my future. I remain in a state of a fragile balance which gets disturbed by many normal life situations that often come unexpected, but are not exceptional and objectively hard, especially for someone without the burden of our condition.
I wish I could find some way to strengthen that balance, get some confidence that this does not get worse without being over-protective and too much socially withdrawn. There are still too many unknowns, and their number grows over the time.

 

Thank you for sharing your story. It’s a reminder that everyday is a balancing act with tinnitus. I pray that a cure is found.

 

Thank you for sharing your story.
I am glad you have found ways to cope with tinnitus.
There is more to life than just existing with tinnitus.
Best wishes to you.
Once

 

@Adaś, we have a lot in common. We are both from Europe, a single family house, my own room, music, Walkman, type of music we like. Granted, it was a long time before I was in the position to buy a stereo with proper loudspeakers, so for years I was just going with a Boombox, being very envious of some folks who had better setups. Maybe it was a blessing, since I got my tinnitus this year and I am in late 40s. And early on I was more into computers/games than music. But then music was with me for years. Audiophile equipment, quadraphonic, high-res multichannel stuff, and later I "rediscovered" vinyl. I guess I wasn't listening that loud because of my wife and kids.

Ironically I saw King Crimson last time few years ago, I think it was the last live show I attended, just before the pandemic. I recall it was unusually ok sound level wise. For 20+ years I was bringing musician earplugs to every concert, including this one. I remember it was quiet enough, I was able to remove earplugs and it was ok. I absolutely had no issues after the concert. I used earplugs because most concerts were simply too loud and uncomfortable. My understanding of loud noise was it causes "gradual" deafness. I had no idea about tinnitus or hyperacusis.

My story is easy to find here so I won't repeat how I "discovered" tinnitus and hyperacusis - and discover I did it HARD and severe (8 months in). Not caused by music, but a power tool without hearing protection while recovering from as sinus infection.

I also agree with your other posts about spreading awareness, corporate responsibility, etc. I am shocked that I was able to live that long without ever learning what hearing damage really means. I am so angry at the education system, employers, musicians, average people, and especially people with tinnitus that do not talk about it. I feel like the world failed me. I am this conservative, overly cautions type. Many probably would not heed the warning. I would have. I just know I would, I know myself quite well.

Sounds like you have been suffering quite badly, but managed to keep marching through life bravely. Very admirable. You do not mention hyperacusis in this post, but you do mention it elsewhere - did you get it later, after tinnitus? Sadly I got both - loudness hyperacusis with short and fleeting faint burning episodes.

I keep looking for success stories buried hidden somewhere. And while yours perhaps could be considered a partial success story. Maybe you still have a chance? Give us an update on your current situation. Best.

 

Thanks a lot for sharing your story! How are you doing today?

 

Hi @Juliane and @gameover. I am doing fine these days. Thank you so much for asking! During last few years I managed to detach my emotions from my (our) condition, and currently the only medications I use on regular basis are NAC a.k.a. ACC (European name) - every time I spend my day outside in possibly louder or unpredictable environment and Melatonin when I need to spin down my mind e.g., after very busy day at work. I have some occasional bad moods but nothing close to what was there couple of years before.

I don't know if I can call myself habituated, because I do hear this annoying screeching in my head all the time, it is not any quieter, but I no longer care that much about this and I am able to focus on the other things for the most of my day. Therefore I believe I am out of the vicious circle of tinnitus bringing me down which worsens my perception of tinnitus, which brings me down even more. The only (possible) effect it has on me is that I am getting tired quicker than I used to. But maybe I am just getting older.

I still keep transparent silicone earplugs in my pocket and I wear them in loud environments such as city centers, airplanes, loud restaurant. I use single brand and I never had any problems with them such as ear infections. But I also try to walk with ears open otherwise and expose myself to everyday's sounds.

My hyperacusis is mostly gone, meaning that high-pitched sounds are no longer painful, but just unpleasant. I used to be painfully bothered even by YouTube jingles / "subscribe to this channel" bells used all over the place in the videos, now I just fine them stupid and annoying. The only reason I am still trying to avoid high-pitched sounds i.e., plugging my ear when I head a train or big truck pushing on the brakes, is to avoid any possible temporary spikes. But again with NAC and no emotional attachment this is no longer a completely hopeless situation as it used to be, but rather completely automatic behavior.

While I still avoid many activities that deal with loud sounds or noises, I don't feel like a prisoner of my condition.

Regarding my perception of the world, a.k.a. "the world failed me", I think am more aware how the world is functioning better than ever before. I think the world itself has no personality or intentions therefore it cannot or could not fail either you or me. Years of working in highly competitive medical industry and corporate environment leave no remorse, that we live in money and greed driven reality, where small population of (started) rich, slightly smarter individuals, often exhibiting very psychopathic behaviors, are feeding on large stupid crowd. This crowd perceived by the rich elite as lesser beings serving single purpose of slaves generating even more wealth and providing comfortable lives to the few. This system is supported by very sophisticated techniques to manipulate the crowd, developed during thousands of years our civilization has existed. Hence, unless you are born rich, your only arm of defense is a knowledge or the knowledge how this really works. On top of that, the life itself is mostly cruel and unfair. But I knew all that after spending quite some time in hospitals as a kid.

I am no longer such a blind idealist I used to be, but I don't find this world a completely grim place. There are still great people and some great things to do on this planet, and I enjoy spending my time with these people doing these things. So it is better to accept the way this world is functioning, rather than clinging on to some unrealistic idealistic non-existent alternative universe. And by the way, there are some good side effects of generating more profit - reduction of suffering (more below)!

Unfortunately I don't spend much time here on the forums anymore. I am just occasionally checking notifications and my inbox here. I wish I could do anything about this stupid and pointless condition, but I figured there's not much I can do about tinnitus with my expertise at the moment, beyond donating. But I am always open to chime in to help with some projects that need tomography or some image processing.

I absolutely don't trust in the ability or motivation of researchers and/or scientists to bring any working solution into the market. I could say "been there, (haven't) done that". First of all, bringing a solution to the market is not the point of the research or a goal of any academic entity. Therefore I don't even want to comment what I think when I see "that's such a great paper, maybe we can see this as a new drug available for us in a few years". The only way to actually do anything, something that Tinnitus Talk is already doing, is to generate stories about new profit streams and connect investors to the researchers with strong promise of such profits. It will be the folks hired by investors pushing the solution to the market under to urge to open new profit stream and return of the invest. I believe there is a gap there that explains the rather pathetic pace of some activities such as Trobalt reformulation - that was announced a couple of years ago as "we almost have the formula" and today we still talk about "maybe in 3-4 years". What a joke!

I am pretty confident that if you have an incentive i.e. good evidence of new profit source, such stuff can be done so much quicker. Myself, I would happily pay a few hundreds of bucks per month just to shave +3 dB of the noise in my head! Now if you multiple it by overall population of the tinnitus sufferers that are willing to pay, this could be such a story. So... I still believe (hope?!) we can do something about this, but we need to think about this condition in the context of our greed and money driven reality. We are like a flock of sheep, we need to start advertising the value of our wool.

Cheers,
Adam

 

@Adaś, good to hear you are doing relatively well. Thank you for the update. While it is not all around success story (as in you regained silence), it is a success story nevertheless that gives us hope.

More on the note related to lack of awareness. I really do not get it. The powers that be would be better off with me being healthy and toiling away as a corporate cog improving their bottom line. Now I am at the end of the line. I returned to work, but my output is 10% if that. I will probably be canned once they figure it out. Especially in the current environment in my industry.

Maybe the number of tinnitus victims (at least the severe cases) is low enough that it is just a rounding error in the end to them. Plus the industries are benefiting more from the e.g., lack of noise regulations and costs involved (more awareness would probably result in more regulations/protections and that would cost money), vs. the collateral damage of people like you or me. I don't know. It is irrational I think. And certainly inhumane.

And you are spot on when it comes to incentives. It is all about greed and nothing else.