Tinnitus Now Responds to Sound... Seeking Support

Hi everyone,

Unfortunately, my tinnitus has reached a point I went from lurking this forum to registering an account and opening a thread to share my growing sorrow. I don’t feel like the people around me understand what I’m going through (and… how could they? Before I had tinnitus, I didn’t too.) I’m here, maybe looking for some reassuring words, a piece of advice or just a place to share my thoughts with people who do know the stuff I’m going through. Thanks in advance for reading this.

I am a 25 year old female from the Netherlands and a passionate lover of music. I started going to parties at the end of 2011 and began wearing decent 30 euros ear plugs from 2011 to 2014. In the summer of 2014, I bought custom molded ear plugs with -15 dB filters.

This is my tinnitus timeline:
10/2016: Got tinnitus in my right ear after listening to way too loud music in my room. My tinnitus then was only one ringing noise, I could accept and adjust to it easily. On a scale of 1-10, it was simply a 1.
03/2017: Got tinnitus in my left ear after a nasty fever and cold. It truly saddened me at that time, but after a few months, I could accept it, and learned to live with it. In volume it unfortunately topped the tinnitus in my right ear, being a 2/10.
04/2017-04/2018: I don’t know when, but spread over these twelve months, I got multiple pitched ringing noises in both ears. I think tinnitus volume in both ears increased, both becoming 2.5/10. Again I found a way to acceptance; the tinnitus didn’t bother me anymore in the summer.
07/2018: I went to a 3 day music festival where the volume was very, very, very loud… Even with my custom made -15dB filter ear plugs, the volume was way too loud. During the festival, I made sure I kept enough distance from the speakers, only standing where I 100% felt comfortably. Of course, there was one show I stubbornly stayed in front of the artists, because I’m a big fan of them. I couldn’t even fully enjoy the show because I kept worrying about the speakers possibly further damaging my ears. That night I laid in my tent and I experienced the same hectic, back-and-forth pitched sounds in my right ear I experienced the days after I first got the tinnitus in both my ears. I knew what time it was…

After I got home from the festival and did some good sleeping and recovering from it, I found out my right ear now responses to sound. Example: whenever a driving car passes me, the new tinnitus, similar to a kettle, whistles along with it, increasing in volume until it tops the car, and when the car sound is fading, so is the tinnitus. Showering, listening to (not too loud) music, gaming, watching television - all these activities are accompanied by this responsive kettle. The whistle always slightly tops the sound around me. Since the festival, the tinnitus in volume has gone up also in both my ears. I would say they're both 3/10 now...

I could live with my tinnitus prior to the 3 day music festival, but now, it is constantly grabbing my attention. Whatever I do, even relaxing activities such as a walk in the forest, gaming or watching television, I always hear this responsive kettle whistle in my right ear. It constantly being present gives me a lot of stress.

If I look at my timeline, I see a fast development in severity. This saddens me greatly. I am only 25 years old, have a good and happy life full of positivity, with a great relationship and loving friends around me. But since the last 3-4 months, I anxiously look towards the future, as my tinnitus has quickly worsened these last two years.

Are there more people here with a similar timeline? I am still new to the tinnitus responding to sound, are there people who have experienced this as well but gone back to 'regular' tinnitus? Or is this responsive sound here to stay? It would also be great to just talk a bit about this, share thoughts, feel understood.

Thanks a lot for your time and reading this. Best, Discodine

 

It is possible that your T will eventually fade. However, if you keep being exposed to loud (and moderate) noises/music, chances are that your T will continue getting louder and harder to ignore. You can ignore reality, but you won't be able to ignore the consequences of ignoring reality. As you learned yourself the hard way, earplugs can provide a false sense of security.

 

@Discodine ,
A warm welcome to Tinnitus Talk.
You need to give your ears a good rest from loud sound and keep away from gigs for now and hope your ears start to settle.
Extra loud sound can pass through your mastoid bone even wearing plugs won't help.
If you have trouble sleeping or low mood then pop in see your doctor.
Play relaxing music when you need a break from your tinnitus and do what you can to stay calm.

love glynis

 

Yes, this kind of slope is not uncommon.

Mine was:
2011 (Big) Acoustic Trauma - but T went down after a while and I was fine
2015 Acoustic Trauma - T went down, but H never faded on my right ear. Pretty good overall, used earplugs at nightclubs.
Trauma 2018 - Not from a very loud event. Increased T and extreme H. I'm suspecting a toxic combo of Noise + NSAID caused it, so be extra careful of combining that in the future. Life is changed significantly for me forever (or until there is a cure).

It's not fair, you are just 25. However, Bill phrased it well: "You can ignore reality, but you won't be able to ignore the consequences of ignoring reality."

 

@Discodine Hi, i know the sound of a car passing by and hearing a whistling with it. I also had that in the beginning, at its worst(after an 8h flight and 4h drive without earplugs) i was laying on my couch in my living room with open window and heard it with every passing car. I also heard it while driving or when i heard running water.

Now take this with a grain of salt, since i am not 100% sure what caused my T and it is not said that yours will behave the same, however this reactivity for me faded completely. I don‘t have it anymore. It took a few months but after a while i heard it less and less. Since around 2 months now i‘d say it is gone.

So try to relax a bit and give your ears a break. And use foam earplugs if you are in a noisy place. I would also stop festivals and such things for the moment.

 

Alternatively, don't come anywhere near noisy places.

 

With noisy places i meant things like restaurants or malls. I don‘t think that with fully and correct inserted earplugs the majority of people would have problems there.

 

Some of us had definitely shared getting serious spikes after attending restaurants where the only source of noise was many people talking (I believe that some of those posters wore hearing protection). So what you want to do is try it for a short period of time. If you don't get a spike after that, try increasing the exposure time, etc. Don't Assume that a sound that used to be ok back when you didn't suffer from T is still safe.

 

Yeah you are right, of course if you experience a spike you shouldn‘t do it immediately again. But you probably also will agree that the majority of people with mild T will probably not have major issues in a restaurant with foam earplugs.

Don‘t understand me wrong, i am all for ear plugs and staying away from clubs and concerts, but i don‘t think that you can say in general someone can‘t go to restaurants with earplugs in.

 

Ten days ago I was thinking about writing a success story here as my extreme H (even low voices hurt) that I got on the 30th July had slowly improved over a 3 month period. Then last weekend I went to a restaurant and stayed there for two hours with ear plugs.

It was my first serious setback and I regret it very, very much. 30 min would not have been a problem, but I pushed too far too quickly. Be methodical and cautious and find your limit.

 

HI @Deamon22,

I think the operative word is majority. But it appears that a least a minority could end up having problems. Until we know which group we belong to, it's always wise to proceed with caution--which it appears you're doing. -- Best!

 

I have no idea what fraction of people will end up regretting being at a restaurant while wearing earplugs.

If there is no music (or the music is very quiet), and the other people there are not making much noise, then it ought to be ok. Otherwise, my guess is that all bets are off.

 

Sure, i never meant someone should take unnecessary risks. I think everyone will know after a while what they can do and what not. When in doubt, always choose the safer options.

You know i am mostly the same opinion as you with wearing earplugs and avoiding noise. I never wanted the OP to take risks, just to stay cautious

 

Thank you all for your great responses, tips, reassuring words. I've been wearing my custom made ear plugs during noisy activities the last couple a days. I hear the whistle less this way, which gives me some stress relieve. I also made an appointment with my doctor next week to look at my right ear. It feels weird from the inside, sometimes a bit painful. I'm starting to wonder if it (/my eardrum?) might be infected...? I also told my colleagues about it and being open about it also gives some piece of mind. Sometimes, just people listening to what is bothering you, helps a great deal.

Thank you Glynis! I never thought about this possibility, I always assumed wearing ear plugs (especially custom fit) would be sufficient to prevent damage... This is an eye opener, thank you for that.

I am so sorry to hear this, Johan_L. What kind of NSAID were you using? I had to google it and see it is pain medication like ibuprofen. I'll definitely think twice before taking in such medicine... I thank you for sharing your experience and truly wish you all the best and strength in the world to deal with your T and H.

Thank you for sharing, a success story like this gives me strength and keeps my head up. When telling my colleagues about my worsened T, one of them opened up about her T. She's had responsive T as well, but just for 5 weeks, it also disappeared. I hope this will also be the case for me.

Thanks for your advice, y0ur last sentence really makes sense, yes. Yesterday evening I originally had a dinner + party planned with my co-workers, but I canceled the party and only attended the diner. I wore my ear plugs and had a great time in the restaurant, fortunately. When laying in bed last night, my T actually was actually barely active, only 1/10 in both ears. Weird but very nice

I am so sorry to hear this. How much dB filters do you have? And how are you doing now, I hope your T has moved more to the background in the meantime...

It's now Day 8 with my responsive T, I still have hope it disappears... Let's see what the doctor is going to say next week.

EDIT: I forgot to mention in my first post that my responsive T in my right ear disappeared after +- 4 weeks after the festival! And it's now back since Friday October 26th whilst riding my bike (of all 'risky' activities ) The responsive T disappearing once before gives me hope it does again...

 

Not nearly enough for "heavy duty" activities. You need to plug up with at least +30 dB NRR (I use 36 dB NRR earplugs myself) for things like concerts. Not that I actually recommend going to these in the first place. I mean... who wants to rape their own ears, right?

 

Unfortunately, I was born with a passion for music and festivals. I know, not the best hobby when it comes to one's health.

Where did you get your earplugs? Most ear plug providers in the Netherlands don't have better filters than -25 dB...

 

@Discodine everything will work itself out with time, effort, and (responsible) self enjoyment. Stay in the present and know that we are all here for you. This forum has your back and we’d love to get positive (or negative updates) and go through the process of understanding this with you.

 

Thank you Katri, it warms my heart to see there are wonderful people like you around.

Tomorrow marks day 14 of the responsive tinnitus' presence. I've given my ears a lot of rest by wearing my ear plugs, which gives me some rest during bus rides, lunch time at work, etc. I'm getting more or less to terms with it and I've noticed the responsive T is getting more to the background. It's still there, especially when e.g. boiling water, grinding coffee beans, a car passing by, etc. But I haven't felt any pain in my ear the last couple of days and the sound is starting to bother me less. Not sure if this is due to habituation or the responsive T might be gradually fading. Let's hope for the latter.

A few days ago, I went to the doctor. She looked in both my ears but couldn't see anything unusual. I got my referral appointment with the ENT specialist end of December, so let's see what comes out of that...

 

I'd say you need to give it a lot more time to fade, i am now a bit over 5 months in and just after 4 months i could say it did go away. I saw kind of a gradual improvement. In the beginning i could hear it between the fan of my PS4, near the end i needed to stand next to a waterfall to hear it. So it took always louder sounds for it to respond.

In any case when you go to your specialist bring the Tinnitus Diagnostic Flowchart with you.

https://www.tinnitusresearch.net/index.php/for-clinicians/diagnostic-flowchart

And buy some cheap foam Earplugs (i have 3M 1100, the orange one from Amazon).