Young Adults with Tinnitus — Please Respond in Solidarity

This is incredibly reassuring to hear. Can I ask what brand of ear plugs you use?

 

19 years old.

 

Don't worry, I had really bad hyperacusis at a young age and have survived for a long long time with this, and I can tell you, it is way worse than tinnitus.

 

I carry Earpeace brand earplugs everywhere I go. If I know I'm going to an indoor show, I bring orange foam earplugs rated at 33. I don't wear plugs whenever I play because I don't play super loud. Unless your T is super loud and reactive, you shouldn't have an issue doing any of this. There are a plethora of musicians that have T and still perform so there's no reason why you can't.

 

Ever since I got my tinnitus I’ve also learned that a ton of people around me have tinnitus that are my age (26-27). They can only hear it in quiet rooms so it doesn’t bother them at all.

These are all friends that go to a ton of concerts and festivals every year and are huge music people. I feel like it’s safe to assume anyone who’s an avid concert/festival goer has mild tinnitus unless they were lucky enough to be informed about ear plugs

I have a coworker who also has it and it’s a bit past that quiet room stage but he still continues to go to movies, travel, etc (he’s not a concert/club kinda guy) but wears headphones for video games.

 

I hope this is not an unpopular opinion but I actually would love to talk to young people and make them aware of how hearing damage can occur. I think we need stronger education on this than just a mother telling their child? I honestly was ignorant to how much I was damaging my hearing. I went to clubs and never saw people wear hearing protection. Concerts? Same thing. I don’t want one more young person to suffer from noise induced like me. It’s an awful feeling to know my own ignorance caused me this. As of now, an irreversible symptom. That doesn’t change our need for a cure in any case. There’s plenty of people with hearing loss and tinnitus and various other problems without the noise induced....
I want to add that I am an educated person which I only bring up because it drives home just how much young people don’t consider their hearing as delicate... I literally took a whole neuroscience class and remember discussing tinnitus. NEVER did I think I was in danger of developing it in the next two years. I had no idea. I knew what it was and I still exposed myself to loud sounds. I’m not sure why I thought I was exempt. I only knew that no one else my age was delicate with their ears and everyone was fine. Only older people I knew with tinnitus from working at gun range...

 

Apparently my older (27) year old brother has it as well? I didn’t know!! Has had it since a teen? Yet I go to his house and he’s playing video games with big headphones? I don’t know if his is just very constant and doesn’t move up ? His is from Noise induced I believe so I don’t understand how it’s not getting worse??? I feel like mine sensitive... it has gotten spiked briefly with medications and loud noise. And now I’m too afraid to go to concerts, bowling, movies... yet I’m pretty sure he went to a big monster truck thing? Which is SO LOUD. I don’t understand tinnitus. My step father has it from work and he also doesn’t understand why I’m afraid mine will worsen... in any case I didn’t even know they had tinnitus until I developed mine because they live normally.

 

My mum got me a pair of ear plugs for my third gig I ever went to - I was about 15 at the time. I've used them since. For me, all it took was the word of my mother and a quick search into tinnitus and hearing loss. Still here, but my leading causes are my neck and ETD so at least I avoided NIT for the most part.

 

Hi, I'm new to the forum and I hope that sharing my story will help others struggling.

Just before my 22nd birthday, I was getting into bed one night when a ringing started in my ear. I hadn't been in any loud environments recently or suffered any ear trauma so the noise really came from nowhere. I assumed it would go and played rain sounds to help me sleep that night.
The next day the noise was still there, so I tried ear drops thinking it may just be a build up of wax. At the time I was in my second year of uni and although I didn't recognize it at the time, I must've been quite stressed with assignments. I went to the doctors who prescribed me something (sorry I cant remember) to help. Whatever it was made no difference and I went into deep depression.
I had never experienced depression before until this. I felt hopeless and would spend days crying, emotionally drained, and at night I was so stressed. I was mentally exhausted (don't worry it gets better). I had to defer an exam and went back to the Doctor, who prescribed Amitriptyline. Google will tell you it's an antidepressant but this is not the purpose it was prescribed to me for- it's also used to help people with anxiety and sleep problems. The way it was described to me is that the Amitryptyline helps to calm your mind down and relax you-essentially making it easier for you to drown out the noise. I was first prescribed a low dosage and at the time I was still doing assignments and I didn't feel it making a difference. My dosage was then upped to 50mg and at the same time I was nearly finished with Uni for the summer.
Things started to improve. I was able to ignore the noise easier and gradually the stress and depression faded and I felt happier and more hopeful. I know what you're going through and I know how hopeless it feels but please believe me you will get better and life will be bright again. In my personal experience, stress effected my tinnitus massively.
In the summer I started working at a job I enjoyed and was socializing a lot more- it was at these times that tinnitus barely crossed my mind. Now, I'm 23 and about to graduate. I sleep with rain sounds on and I'm still on Amitriptyline but have managed to gradually lower my dosage to 20mg a night. I'm hoping to eventually not take it at all in time. I know people say to accept that you have it but I would also say to do whatever helps you cope with this. Personally, I believe as this tinnitus came out of nowhere it can leave out of nowhere again. This mindset helps me to live happily day to day-accepting that I have it right now, but reassuring myself on down days that it may leave again, or if not, become so unacknowledged that it disturbs me in no way.

I hope my story helps you to keep hope and find the remedy that works for you. If you want to ask me anything feel free

 

I'm 20. You're definitely not alone. I often feel like giving up. It's destroyed my social life. I miss being able to go outside and do normal things.

 

Clare,

I noticed you're in New York. Have you been tested for Lyme?

If not, have your doctor run the test. It's simple and painless. You might have contracted it and not realized it. Not everyone develops the bulls eye rash. There's some evidence that Lyme (or it might be some other sort of low level bacterial infection) is responsible for some spontaneous tinnitus.

The reason I mention this is that my tinnitus that I had for 3 years improved dramatically when I was being treated for a tick bite. I took Doxycycline Hyclate at 100mg 2x a day for 10 days. The tinnitus almost completely disappeared. Unfortunately, the tinnitus returned after I finished the course of antibiotics. However, now that I know that antibiotics worked, I'm going to get a prescription for a longer course of antibiotics no matter what anyone tells me otherwise.

Also, keep in mind that tinnitus, although annoying, is hardly the end of the world. You're not exactly in chronic pain from it. You get used to it after a while and it doesn't bother you. I find exercise or being around friends helps a lot. Some things trigger it (caffeine for instance). You might try keeping a journal and avoiding whatever triggers it. If it's causing you insomnia, I've found waking up early (6 am or so) and physical activity helps. It's not so much that tinnitus is keeping me awake (lots of people without tinnitus complain about insomnia), but that I'm not tired.

Good luck,

Tim

 

I'm 25 now, got it when I was 22. Itll be ok. You're not alone. I know how it feels...We're young and got this bs. But after a while I promise you, you will habituate. You will wake up in the morning one day, wash your teeth, and forget it was there for a moment. Then itll be to the point you only hear it when someone mentions it! The brain is a powerful thing! Just think of it like this, if you can last 10 seconds with it, you can last another and another. Take it one day at a time. On a good note, medicine and science is evolving rapidly! I have faith we will see a breakthrough for a cure in the next 30 years or even WAY sooner if God wants. I know it sounds like a long time, but imagine those who are old that have had it for decades and are still here! If they can do it, we can too! Stay strong and remember to pray.

 

You are not alone. You will get through this I'm sure.

 

25 years old.

 

I'm 33, so not strictly a young adult anymore I guess. Had this since 19 or so. Since an acoustic trauma last year I'm back to struggling with what is now severe tinnitus.

One thing I see is that young people are more convinced modern medicine will cure this one day. Besides just learning to deal with it, which is the only mindset one can adopt, it's still important to have hope for the future. In my tinnitus journey, I've met more than one ENT or audiologist that tells me there is never going to be a cure because it's in the brain. You can only take out of the tinnitus signal when you numb the brain, so they can't do it without making you a zombie (these were also more or less the words of Jastreboff when interviewed at the TRI 2019 conference)

How, as a researcher, can you be saying things you don't know? Are you clairvoyant? These things aren't set in stone. It takes people with an open mindset that can envision a cure to find one some day.

Yes, with the current drugs you can turn off the tinnitus and the brain, which is akin to eliminating a pesky mosquito with a flamethrower. How about a more targeted approach? Whether it be bimodal stimulation, hearing regeneration or some drug like Tzounoupoulos' Trobalt 2.0 , it's not the TRT preachers that are going to help us out here, as they're convinced we have the cure in TRT. Most never heard of these things and they work with tinnitus sufferers on a daily basis.

Some doctors aren't happy when the patient shows even a basic understanding of their condition. I had many doctors go cranky because of my commitment to informing myself. All I got in return was a lecture on TRT and the limbic system. They automatically concluded my need for information was a sign I was obsessing over it, and that this obsession was my actual problem, not the tinnitus.
I mean, how the actual fuck can we keep still while being told this kind of shit? It's victim blaming!

When a person loses a leg and goes on the internet trying to find out about prosthetics, would he be met with the same reaction? Would he be told that he will be able to walk again when he manages to ignore the lost limb.

Please be vocal about this, let them know we need more than what we're getting in the medical world of today. We might come off as annoying to some doctors, but it's about time someone listens.

P.S.: I'm ranting about the standard of care in most countries, not about all the beautiful people like Shore, Tzounoupoulos, Rauschecker, De Ridder etc who won't take no for an answer.

Go forth and spread the word. Amen.

 

It hasn’t improved at all?

 

Nope :-/. Gonna hit the one year mark in a few days. It’s been very consistent. Doesn’t really get better or worse.

 

What caused it?

 

Did a concert photography internship last summer. Ringing started at the end of my second week. the damage was done during the first week though.

 

Was an ENT able to tell you that this was the cause of this? How would they know?

 

Yeah I went to audiologist. I have a bit of hearing loss around 13 kHz, but nothing dramatic. Also my ears began ringing one week after I went to a very loud [but very great] concert. I find it difficult to think of another reason as to why I suddenly have permanent tinnitus after being exposed to so much loud noise, you know?

 

Did they say it would be permanent? I’ve heard of cases going away after years...

 

I went to several, and most of them said it may never go away. I've heard that after 6 months it's probably permanent, and I have a strong gut feeling that my tinnitus is here to stay. I'm hoping it'll get better in lockdown since I'm not surrounded by city noises all the time, but FX-322 is the only thing keeping me going at this point.

 

Not true, I spoke with someone on the forum whose tinnitus went away in 18 months, another in 16 months, some in a year...

 

24 in 3 days, I bet you all can guess what im wishing for this year

 

I personally haven't come across those stories, but hearing that gives me a lot of hope.