A Life with Tinnitus at the Age of 21

Hi everyone,


I've read alot of stories on this forum, but I feel like I should share my own story and view on tinnitus. I hope some people will actually take the time to read this.

I always considered my life to be near perfect. Great friends, family, hobbies, education, etc.
I couldn't have wished for more than I had, but with this comes one great flaw. I wasn't prepared for any setbacks.

About 1,5 years ago one of my greatest hobbies, visiting festivals (hardstyle), stabbed me in the back. Or actually I stabbed myself in the back. Why would I not wear any earplugs!? I never experienced tinnitus before and I didn't even know what it was, until it was too late. I woke up after an indoor festival that turned the volume up WAAAAY too loud, and what I heared was awful. An extremely high pitched sound blasting in my left ear, almost like a dog whistle topping every other sound. From that moment I knew I screwed up. Doctors told me it'd go away after a few days, but something in me knew that wasn't true.

Fast forward to today, I've been through alot. So many setbacks but also better days. Unfortunately right know I'm kindof stuck in a setback. I feel like last year I coped so much better with my tinnitus then I do now (I don't feel like its louder, or at least not much, but I've been through alot the past year so I think its my awareness of it that has increased). The worst part is still doing all the fun things I did before I had tinnitus, but not having as much fun as back then. I feel like tinnitus is holding me back from truly enjoying myself in life.

Right now I feel like tinnitus is a game. I'm very certain that soon a way to treat tinnitus and hearing loss will be found. Companies like Decibel therapeutics and Frequency therapeutics are in a high-speed race to find a cure, and those are definitely not the only ones. There has never been so much research on restoring the inner ear than there is now, and the winner will be rewarded greatly. Its a very interesting time to have tinnitus indeed. But that's not the only part of this game. As a "sufferer" of tinnitus, it's our goal to not let this get us down, but instead make us stronger.

It all comes down to the powerful word of "Habituation". I feel like it should be my goal to get as far into habituation as I possibly can until we reach the point of having a cure. I want to be able to look back on this later in life and not think "that part of my life was hell", but instead think "that part of my life made me a stronger person". Perhaps this setback is just what I needed. Life isn't all fun and joy, it has its bad parts too. The better I learn to deal with these bad parts the easier my life is gonna be in the future.

Having said this, I hope my post, even though I have not yet habituated, encourages others to play this "game" with me. Right now my best way of coping is through keeping busy, and listening to tinnitus masking sounds when in a quiet room. What's your best way of coping right now?

Feel free to respond, start a discussion or share your own views. I'd love to hear from others that can relate to me in any way. And for those who actually read all of this, thanks. Sometimes having people hear your story can go a long way.

- Roy

 

Welcome to the forum. Acceptance to me is the key to habituation. Acceptance doesn't mean we have to like tinnitus but that we try to accept it being a part of our being and we do so without much negative reaction. Acceptance also mean Adjustment and Adapting. Keeping busy and using masking are the adjustments and adapting to the new normal, which is quite crucial to successful habituation. I call these the 'AAA' attitude or approach. When we can do that, then we will keep the limbic system away which will help us habituate to T faster and easier. As for me, after using the AAA approach for years, I can ignore T doesn't matter if it spikes loud and resonating in my head when I wake up. It will be tuned out by the brain soon enough and most of the time it fades it out of consciousness. Remember what IWLM suggests in his 'Back to Silence' success story? I will say 'I hear it, but I don't care !!! I kick your butt, Mr. T'. Lol.

 

Scientific advancements which will soon be a reality in helping tinnitus and hearing loss sufferers.
do not lose hope

Susan Shores and the University of Michigans signal timing device to reduce tinnitus expected in (2020-2021) hopefully

https://medicine.umich.edu/dept/khr...sent-tinnitus-research-san-diego-science-cafe

Frequency Therapeutics regenerating cochlear hair cells using the bodies own dormant cochlear progenitor cells (2024) hopefully
http://www.frequencytx.com/

Otonomys Oto-413 trial to start in mid 2019 to target inner ear synapse repair hopefully within a decade
http://www.otonomy.com/

Decibel Therapeutics another bio tech firm with a leading otology expert on their team will eventually come up with therapeutics for hearing loss and tinnitus within the next decade.
https://decibeltx.com/

Fret not, and ore https://cochlearpro.com/

Help is on the way

 

Even more fascinating these trials could be high proritized fast tracked because of how much of an unmet medical need hearing loss and tinnitus is!

 

For some, including myself, habitation is a cure...

 

Music was my life, how can i enjoy music with hearing distortion in my right ear?

Why should I treat desensitization of the part of the brain that processes emotion as a cure?

I find this upsetting that researchers, scientist and investors will be discouraged to provide real help when this mindset prevails. This is why I am suicidal and this is what gives me a monumental sense of hopelessness.

 

That is why I said “For some”. I don’t understand the hostility...

 

Well then "some" are being deliberately dense. Ignoring the problem isn't the same as treating it.

 

Ignoring the problem because I have habituated??? That makes no sense...

 

Is habitation anything less than “treatment” if it is successful...

 

1) Yes. Literally yes.
2) The point I'm making is that pretending habituation is a cure is stupid, because it's not attacking the underlying issue.

 

That is subjective...why is my “cure” stupid...there are as many treatments for T as there are people with it...in my opinion...

 

It is unbelievable the amount of people on this forum who are claiming to be habituated to there Tinnitus when the fact they are still on this website and posting at all proves that they are not habituated and they still have a problem with there Tinnitus.

 

Really makes you think, doesn't it?

 

OR ::gasp:: they are trying to provide support on a “support forum”...imagine that...

 

Well how come there's so many of them compared to regular sufferers? Numbers don't check out.

 

I just speak for myself, how my life had been affected by T...it is my story and mine alone...I would cheer along with everyone else here at a medical break thru...

 

To the OP I feel your pain.. I just joined here and I have been into trance and house music since the early 2000s. I made a bad decision at Ultra this year and now I am paying the price, a HUGE part of my life has always been music and I get really down thinking about never again truly being able to listen to it like everyone else does who takes for granted that they can go to a show and be fine the next day

 

Nice try but that wont work anymore

 

Pretty unbelievable how this thread has digressed (?) from the original extraordinary and poignant post. @Roy114, thanks for contributing to this forum. I very much appreciated your intelligent and thoughtful story. There's a number of points you make that I thought showed rare insights for a person of your age. I'll try to reply to some of them when I have more time--just too late at the moment.

Best...

 

Thanks for responding. I thought it would be important to share that I still go to festivals, just as much as I did before I had tinnitus (which is about 10 festivals a year). The only difference is I wear custom made earplugs that filter out 30db. I don't feel like my tinnitus has worsened because of my habit of visiting festivals. I still get nervous when the festivals are too loud though. My next festival is Intents Festival in The Netherlands next weekend. Its a 3 day festival, which I haven't done with my tinnitus yet, but I am going with 26 of my friends, so thats kind of a once in a lifetime experience. I can update you after how it went if you like.

 

Thanks for your response and kind words. I didn't really expect the thread to become so hostile against eachother, it really is sad to see how tinnitus can get people so down they feel the need to act out on others, instead of respecting everyone's opinion. We're all in the same boat anyway.

I hope you do take time to share your own thoughts and opinions, I'll look forward to it.

 

I would appreciate that thanks. And good luck! I have tickets to a 3 day outdoor festival in Sept I am hoping to do if this calms down. I am going to make an appt with an audiologist for those custom molded earplugs as well.

 

Pro tip: "habituated" does not mean tinnitus is out of your life.
Life is easier when you have habituated but your condition can still be a concern. Also, some people are mainly here for providing support, believe it or not.

 

I think that you have the right mindset. I would have liked to have the same when T stroke me, it would certainly have helped. You seem to be mentally strong, that is a great asset.

And I'm glad to see that you can still enjoy festivals

 

Seems like you have been exposed my guy.

 

Habituation isn't a cure for anyone. The Oxford English Dictionary (the gold standard of English dictionaries) defines cure thus:

"Relieve (a person or animal) of the symptoms of a disease or condition."

Adding "for some" to your statement doesn't change the definition of the word "cure." Habituation doesn't relieve the ringing. It might cure some people's anxiety, but it doesn't cure anyone's tinnitus.

 

Can you please contain your inanities within your mentally-challenged neckbeards haven "My Posting Place" ? Thanks.

 

It gets better. I also wear custom plugs on loud environments, but other than that I was able to move my life forward after developing Tinnitus.

For me, one of the worse things about Tinnitus is the Self-Blame, we all have some "I used to do this and that" and blame ourselves. It takes a while but it's a good idea to try to get past that.

An experience like having Tinnitus can change you. Life is not always easy, but the more you get it back on track, the more "habituated" you'll be, and the less you'll care about it anyway.

Best,
Zug

 

Nice argument, and no. Can you not call people you disagree with mentally challenged neckbeards? No need to be buttflustered just because you were called out.