Why Do People Here Go to Drastic Measures to Protect Themselves?

[Dankmemes]

Why do some people limit themselves so much because of tinnitus?

I hear of some people wearing ear plugs everywhere they go and some won't even listen to music at any volume or go to a bar or concert even with protection.

Is your tinnitus that terrible that it doesn't allow you to live a normal life?

If I had tinnitus more than mildly I would still like I am currently try to live the best life I could and try my best to protect myself but not go to such measures that it interrupts your every day life.

I know you could argue that your Tinnitus already does that but you can't basically give up on life because of it you only live one time.

 

[Bill Bauer]

See the first post on
https://www.tinnitustalk.com/threads/learn-from-others-mistakes.29437/

 

[Bill Bauer]

you only live one time

So it is important to do what you can to not end up with debilitating tinnitus. The "fun things" you have in mind last a couple of hours - the resulting cost could last a lifetime.

 

[dayma]

I don't disagree. T already interrupts your life HARD for some though. My opinion is to just be smart and not stopping to live your life if possible. I would never judge anothers suffering/pain or tell them how to live. Listen to your doctors and your own body and it will set you in the right direction....

 

[TuneOut]

Listen to your doctors

Why? They have ZERO understanding of what we are going through. The vast majority of them know NOTHING about tinnitus and its effects on our lives.

 

[Samantha R]

I think it's easy when we have mild tinnitus to get used to it, and we therefore "forget" about it and become complacent.
I sometimes get horrid tinnitus at night if I am woken out of a sleep cycle. Fortunately when I get back to sleep and wake in the morning it has settled, but it's enough to remind me that I don't want that to be my "forever tinnitus" and things could be a lot worse for me than my current level of noise.
I don't see not going to noisy places as me not living my life. There are plenty of things I can do whilst not exposing myself unnecessarily to excessive noise.

 

[dpdx]

because T can increase to levels you cant even imagine in your wildest dreams. I had a misfortune of going through very mild, mild, moderate, severe, and extreme tinnitus.

I rank them on this scale
10-Extreme TInnitus -loud as hell can hear it over mostly everything even traffic noise, sounds like a jet engine in your head. You cant type, concentrate, do anything really...it is truly terrifying. I hope no HUMAN on this planet EVER experiences this. I had it for three weeks back in January
10: extreme tinnitus
7-9: severe tinnitus
4-6 moderate tinnitus
1-3: mild t

 

[daiso]

I think it's easy when we have mild tinnitus to get used to it, and we therefore "forget" about it and become complacent.

People also get complacent if continuing headphone use, concerts going even with plugs, exposing to loud noises, do not worsen their T. Guess what? T is cumulative and one day it will just take this one more loud event to push it to the point of no return.

 

[Autumnly]

I am basically home bound due to tinnitus and I know that most people would say that's impossible. Most people would say that tinnitus can't be debilitatig, that it's just your mindset that is stopping you. But I'd say if your condition is worse enough, like chronic pain, it definitely can be life limiting.

My tinnitus is already so bad that I can't work anymore, I went from two mild tones to nine that I can hear over everything within four years. Sometimes I have days where I can't understand people talking to me even though I only have mild hearing loss. Then I developed severe hyperacusis on top of it.

If your tinnitus is stable, go and live your life. But for me it really isn't worth making my tinnitus even worse because I'm already at a point where I can barely function. For most people it's worth it - but most people's tinnitus also isn't that bad, honestly. The people who talk about not caring if their tinnitus was to get worse have usually not experienced their tinnitus getting worse over and over and over again, especially not within a short timespan.

 

[threefirefour]

If I had tinnitus more than mildly I would still like I am currently try to live the best life I could.

No you wouldn't trust me. Tinnitus suffering is exponential with volume. Someone with twice the tinnitus volume suffers around 3-5 times more. Keep your earplugs in.

 

[dpdx]

People also get complacent if continuing headphone use, concerts going even with plugs, exposing to loud noises, do not worsen their T. Guess what? T is cumulative and one day it will just take this one more loud event to push it to the point of no return.

What are loud noises? I dont go to concerts, clubs, cinema, etc.
I think it can get worse just by a siren passing by.

No you wouldn't trust me. Tinnitus suffering is exponential with volume. Someone with twice the tinnitus volume suffers around 3-5 times more. Keep your earplugs in.

so true..i suffer so much..

 

[Samantha R]

@daiso
Yes absolutely agree with you. I don't do any of those things, but then again I'm 40, and had my fair share of my nightclubbing days when I was younger.... most probably contributed to my tinnitus.... if only I knew then what I know now....

 

[dpdx]

@daiso
Yes absolutely agree with you. I don't do any of those things, but then again I'm 40, and had my fair share of my nightclubbing days when I was younger.... most probably contributed to my tinnitus.... if only I knew then what I know now....

WELL we need to educate people on this condition. I never knew what this curse was until I got it.
Its truly terrifying.

 

[yonkapin]

I became sort of a shut in when I had hyperacusis but realized I couldn't live that way for the rest of my life.

Had to push myself and not over protect my hearing using ear plugs all the time, avoiding loud areas, etc. Once I pushed myself my hyperacusis improved (over a long period of time though) and my obsession with my tinnitus lessened substantially. I don't get crazy spikes now and I don't freak out over little things that used to make me panic back when things were bad.

I think some members on this board and other sites take protecting their hearing to an unhealthy extent that negatively impacts on their lives, but at the same time I respect anyone going through this misery and trying to make sense of it.

I sort of have just accepted it all. My tinnitus might get worse, it might get better. Hyperacusis could come back too. I just need to be sensible when it comes to my hearing but continue to live my life to the fullest. Everyone has some cross to bear or some trauma they experience in their life and this is mine.

I have some friends and family who also have tinnitus, some more severe than me but they definitely aren't as neurotic as I am and I found that these guys just found a way to move on with their lives and basically ignore the tinnitus. I'll ask them about it and they'll be like "oh yeah, no bigger. i can hear it all the time though, like right now" and back in my darker days I couldn't comprehend it but now I sort of get it.

Anyway, I could rant for ages about this topic. There's no perfect answer, tinnitus affects everyone differently and how they deal with it differs tremendously. I find everything has improved for me since I stopped being so obsessed with it and over protecting my ears. Hopefully things continue to improve.

 

[Samantha R]

@dpdx
Absolutely, and that's what I do when I can and if people are willing to listen.
I gave my nephew some money for his birthday back in April, he turned 8.
I was horrified when my sister told me he had bought a pair of headphones!
The most concerning part is, my sister has tinnitus too, she's had it for 6 or so years now.
I didn't know this until I told her I had tinnitus 2 years ago....
She doesn't have the same view on ear protection as I do, and thinks I over-react. This comes from someone who was very bothered by her tinnitus at the start, though she seems to have habituated to a degree now.
Same with my dad. He is not concerned by loud noises, and it seems like he has moderate to severe tinnitus from the way he describes his sound.
My biggest concern is my children as clearly there is a genetic link for me. My father, younger sister (acquired tinnitus at 24) and myself all have bothersome tinnitus. So I will banging into them to protect their ears. I'd be devastated if any of them had to deal with this rubbish.

 

[Ed209]

I became sort of a shut in when I had hyperacusis but realized I couldn't live that way for the rest of my life.

Had to push myself and not over protect my hearing using ear plugs all the time, avoiding loud areas, etc. Once I pushed myself my hyperacusis improved (over a long period of time though) and my obsession with my tinnitus lessened substantially. I don't get crazy spikes now and I don't freak out over little things that used to make me panic back when things were bad.

I think some members on this board and other sites take protecting their hearing to an unhealthy extent that negatively impacts on their lives, but at the same time I respect anyone going through this misery and trying to make sense of it.

I sort of have just accepted it all. My tinnitus might get worse, it might get better. Hyperacusis could come back too. I just need to be sensible when it comes to my hearing but continue to live my life to the fullest. Everyone has some cross to bear or some trauma they experience in their life and this is mine.

I have some friends and family who also have tinnitus, some more severe than me but they definitely aren't as neurotic as I am and I found that these guys just found a way to move on with their lives and basically ignore the tinnitus. I'll ask them about it and they'll be like "oh yeah, no bigger. i can hear it all the time though, like right now" and back in my darker days I couldn't comprehend it but now I sort of get it.

Anyway, I could rant for ages about this topic. There's no perfect answer, tinnitus affects everyone differently and how they deal with it differs tremendously. I find everything has improved for me since I stopped being so obsessed with it and over protecting my ears. Hopefully things continue to improve.

Well said. Tinnitus can be hell on Earth, but constantly protecting yourself from your environment is not the answer. It creates more problems than it solves.

Unfortunately, advice like this is standard on tinnitus forums and a lot of people regress because of it. No one's got the perfect answer but isolating yourself is definitely not a good idea and neither is using double protection everywhere you go (which is rife on here).

Ultimately, do your own research (away from forums) and don't be conditioned one way or the other. Study the facts and then do what's best for you and your sanity.

 

[Ed209]

I don't see not going to noisy places as me not living my life. There are plenty of things I can do whilst not exposing myself unnecessarily to excessive noise.

I completely agree with this Sam. However, that's not the real problem. There are now so many people on here who are isolating themselves in their houses that it's getting quite concerning. I get endless PMs from people saying they can't leave the house without double protection, and in fact, many are now saying they don't leave their house at all because they don't think double protection is enough.

We're talking about people fearing the sounds of nature such as birds chirping and babbling brooks. Some are using double protection in the shower, and worried if they have a conversation without their earplugs in that they have caused irreparable damage. This is no longer just a few people; there are loads who are finding themselves in this situation and it is heartbreaking. I feel so sorry for every single person who has found themselves to be in this position. This is not healthy and should not be promoted.

It's understandable when someone has severe H, for example, but many of these people don't. They double protect like this because of an extreme fear that they have learnt on here. It's tragic and shouldn't be how people deal with tinnitus.

The recent PMs are getting worse and worse from various people. They are suffering more because of these fears and behaviours.

We must protect our ears for the rest of our lives whenever we find ourselves in a dangerously loud environment. But just don't let it spill over to the rest of your life. You don't need to be protected from everything, so please don't be conditioned to believe that you do.

 

[dayma]

Why? They have ZERO understanding of what we are going through. The vast majority of them know NOTHING about tinnitus and its effects on our lives.

Generalizations don't help anyone. I have nothing but empathetic and helpful doctors all around me. It's like saying because my doctor does not have MS that he can't be empathetic or helpful....

 

[Emperor-Drax]

Yeah I too am getting a bit wary of the "bubble boy" mentality I'm seeing in the tinnitus community. I know some people here are self-proclaimed extreme introverts and having tinnitus seems to have reinforced that facet of their personalities. But I just couldn't live like that. I'm more in between introversion and extroversion - I enjoy the company of friends and collegues when I go out, but I value my me-time too.

That said, my H is going away, but if I'm left with this light refrigerator motor sound in my head for a while, then I guess that's that.

By the way, I ain't letting any fear mongering here drive me away from my ASMR videos with headphones. They're relaxing, calming, and I've never had a spike by listening to those vids. Just watch out for YouTube ads though - yikes!

 

[fishbone]

Why do some people limit themselves so much because of tinnitus?

I hear of some people wearing ear plugs everywhere they go and some won't even listen to music at any volume or go to a bar or concert even with protection.

Is your tinnitus that terrible that it doesn't allow you to live a normal life?

If I had tinnitus more than mildly I would still like I am currently try to live the best life I could and try my best to protect myself but not go to such measures that it interrupts your every day life.

I know you could argue that your Tinnitus already does that but you can't basically give up on life because of it you only live one time.

All of us are different. Some have mild tinnitus, some have intrusive (myself). At times it's not even the tinnitus that lets us or STOPS us from doing what we love. It's the anxiety, fear, stress that stops us. Some folks have battled anxiety long before tinnitus came and now it's much more difficult. I have had anxiety on and off in my life and it can be such a negative force to deal with.

There is no "one size fits all" lifestyle for all people, some will over-protect, some will not do it. I think that protection of the ears are a must, but we also need to not become obsessed with this. In my 30 years with tinnitus it was the constant LOUD noises (bars, pubs, concerts, events) that made my tinnitus worst and my hearing worst.

Even if someone does over-protect their ears, it's not 100% guaranteed to not increase their tinnitus. Sure, they might possibly save some hearing/hair cells, but as we know that's not 100% related to developing and avoiding tinnitus...

Bless All...

 

[daiso]

@dpdx
My biggest concern is my children as clearly there is a genetic link for me. My father, younger sister (acquired tinnitus at 24) and myself all have bothersome tinnitus. So I will banging into them to protect their ears. I'd be devastated if any of them had to deal with this rubbish.

That's my biggest fear too! It's just unimaginable. I'd rather be dead than to see my children suffer and I'm dead serious. If I really have to say one positive outcome about my T, it is the impact on me that my son actually sees which makes him more conscious about loud noise. Even then, he cannot fathom the catastrophic effect that headphone/earbuds can cause. There's no avoiding earbuds or headphones for kids or teens growing up these days and we can't just take those away. The next best thing to do is monitoring and education. For parents, please please do that. If your children insist on headphones/earbuds, use a sound meter to make sure they are listening at safe levels, which I did, and it measured around 60dB, even though it still sound loud at times.

 

[Bill Bauer]

I too am getting a bit wary of the "bubble boy" mentality I'm seeing in the tinnitus community. I know some people here are self-proclaimed extreme introverts and having tinnitus seems to have reinforced that facet of their personalities. But I just couldn't live like that.

Could you live with debilitating, screaming tinnitus?

 

[daiso]

If you can go back in time and tell yourself "dont go there" or put on your earplugs, would you listen? If you answer yes, that's exactly the measures we put on today so that tomorrow you wouldn't say "I wish .."

 

[Ed209]

Could you live with debilitating, screaming tinnitus?

I already do, Bill. However, the way you come across on here, sometimes, is enough to scare people forever. I really feel for newcomers who happen to fall upon some of your threads.

In the end I usually end up with an inbox full of PMs asking me if X sound has damaged their ears because of what's said on Y thread and Z thread. The sounds in question are always harmless. Things like the wind, chirping birds (from inside the house), talking, laughing, rain, a running tap (faucet), walking on gravel etc, etc.

If they (correctly) feel that this is what they need to do to promote healing, why are they sending messages to you?! In other words, if they don't think that this can help them heal, they could just not do it (and find out how that works out for them).

When people are vulnerable they will enter the forum and be put into a state of high alert once they read some of the threads on here. Some of the stuff takes no regard for others' sanity and offers up some terrifying advise promoting isolation, avoidance of petty noise (at all costs), and an unhealthy relationship with ear muffs and earplugs. Often both at the same time. I feel for anyone who is stuck at home following these threads, and posts, on a daily basis because it can, and does, condition vulnerable minds and makes them worse.

I will name no one, but here is an example of the damage it does (via PM):


To be honest, I was concerned about the noises when I first detected them but before I found Tinnitus Talk, I was not listening to it all day. I just went to Urgent Care because at times I could detect it.

It wasn't until certain members such as Bill Bauer replied to my post (which was written under an anxious state) with some truly worrying advice that I truly heard the noise as "very loud." Though I understand that they meant well, the next few days it was all I could focus on and I felt withdrawn.

I get messages like this all the time. I understand you mean well and I honestly believe in your own mind that you think you're helping, but in my opinion you're damaging people's minds. We are more susceptible to suggestion when we are in a fragile state, so we must be careful what we believe.

I'm suggesting people seek professional help and possibly counselling as well. Try and get friends and family to help you out, and don't spend too long online. It's not good for you in the long run.

 

[Emperor-Drax]

For every William Shatner, there is Gaby Olthuis. Gaby was a woman in Netherlands who got a doctor assisted suicide because she couldn't stand living with her tinnitus.
https://www.tinnitustalk.com/threads/the-story-of-gaby-olthuis.4381/

I feel for the poor woman. She must have been in a terrible place.

But I feel that as long as I have my sense of humour, awareness of this condition to offer to the rest of the world, great friendships and relationships, no tinnitus at any level will stop me. And something's gonna kill us all in the end anyhow, but tinnitus I suppose is perhaps part of the "death by a thousand cuts" thingy.

And Shatner, oh Shatner. The guy's inspired me for years, and I didn't even know he had tinnitus until recently. I watched his documentary on Netflix The Truth is in the Stars over the weekend and thought "if he can continue doing what he does well into his 80s despite the tuning fork in his head, then so can I".

 

[Ed209]

If you can go back in time and tell yourself "dont go there" or put on your earplugs, would you listen? If you answer yes, that's exactly the measures we put on today so that tomorrow you wouldn't say "I wish .."

Problem is, who comes here prior to a bad event? No one.

The primary message has to be prioritised around the importance of protecting our ears around prolonged dangerous noise. That is clear and should be promoted in schools and via other media before the damage is done. Unfortunately, tinnitus awareness is dismally low.

Scaring the shit out of people so that they fear all sound is not the answer. We are supposed to calm our nervous system down, not add a million other burdens and pressures to our lives. If a door slams nearby I no longer react or even think about it. Two years ago I'd have ruminated over it for at least two weeks; stressing and worrying (did I damage my ears?). I was always on edge. Apply the same situation to many poor sufferers here who are following some of the bad advice: they are popping prednisone every time they hear a knock or a bang. It's crazy and really unhealthy.

I feel really strongly about this and feel like something has to be said before half the forum has a nervous breakdown.

 

[Bill Bauer]

I feel that as long as I have my sense of humour, awareness of this condition to offer to the rest of the world, great friendships and relationships, no tinnitus at any level will stop me.

I hope you are right. Personally, I am convinced that there exists a level of T that would make one's body uninhabitable.

Scaring the shit out of people so that they fear all sound is not the answer.

The sound that has the potential of making one's T worse, Should treated accordingly.

We are supposed to calm our nervous system down, not add a million other burdens and pressures to our lives.

Once one adopts a safe lifestyle, there is nothing to be stressed about. An unsafe lifestyle will likely make one's T louder which would then add a pressure to one's life.

 

[Bill Bauer]

Things like the wind, chirping birds (from inside the house), talking, laughing, rain, a running tap (faucet), walking on gravel etc, etc.

Those are all harmless things. The info above is not consistent with what you wrote below:

PMs asking me if X sound has damaged their ears because of what's said on Y thread and Z thread.

Are there any threads on this forum where someone claimed to get a T spike as a result of

Things like the wind, chirping birds (from inside the house), talking, laughing, rain, a running tap (faucet), walking on gravel etc, etc.

 

[RingerBell]

The primary message has to be prioritised around the importance of protecting our ears around prolonged dangerous noise. That is clear and should be promoted in schools and via other media before the damage is done. Unfortunately, tinnitus awareness is dismally low.

I believe there is more and more awareness in general population that prolonged exposure to loud sounds can cause hearing damage and tinnitus. I just don't know how effectively people who don't have T apply this information, because "trial and error" is one of the most efficient methods to learn.

 

[Ed209]

Those are all harmless things. The info above is not consistent with what you wrote below:

Are there any threads on this forum where someone claimed to get a T spike as a result of

Bill, I know you mean well but I give up. It's like talking to a brick wall. I'll let you get on with it because the people who are doing well with intrusive T are never listened to anyway, so I see no point anymore. I'm gonna get back to my life now and I wish you all the best. Take it easy everyone.

PS: Who's up for another fundraiser later in the year? I'm thinking tinnitus research this time round.