Why It's Not Helpful to Tell People "You're Lucky Your Tinnitus/Hyperacusis Isn't Worse."

[Gman]

Hey, don't say that! Surely there's more things that could be tried?

Nah. I'm actually moving away to a quiet place to get away from it all. Not topping myself. But I do give up on society - I don't care. Happier to being with my family and myself.

Getting back to your thread topic, couple weeks ago my H did get worse for a week or so because of unexpected noise from idiots. A metal security shutter at a drs office was opened suddenly with a horrible metal crunching sound. I happened to be standing mere metres away and by the time I managed to block my ears, it was half way up.
I didn't get a spike that day, but next days it got worse and, to my dismay, my H got worse too (after recovering a lot in the past few months). So since it happened I've been making sure to take nac and others.

This week I've been back to baseline for T and H is ok. Lastnight was the lowest T since I can recall. Now, today some schmo at work was slamming cupboards in the bathroom as I was about to walk in. It was like gunshots. Despite not even being through the partially open door i got a spike quite soon after, some ear fullness and pain too. Felt my ETs clicking as they swelled up. So sick of being around idiots who keep impacting my recovery.

 

[Emperor-Drax]

Oh don't you just hate it when you're sitting in a public loo, and someone bursts in, sounding like they're busting, slams the door with the force of an African stampede, and it reverberates throughout the entire room. You feel like knocking on the next cubicle and go "far out, ya right mate?"

 

[Bill Bauer]

In case you missed it, please read the post below, @Ed209 , @Michael Leigh, @Tinker Bell

I strongly feel like the advice on these forums ruined my life.

I was always a passive person so when I read veterans posting things like "it gets better and don't over protect" I listened because I didn't have the guts to listen to my own intuition. That's what a passive person does....they don't have enough confidence in themselves to trust themselves. They seek external advice/opinions for everything. My tinnitus was no exception. I trusted the opinions of others more than my own.

My mild T turned into reactive tinnitus from hell, H, visual snow, and palipnosia. All from acoustic traumas. I don't have Lyme, I don't have MS, and I don't have cancer.

I'm only 23.

I agree it's crucical to not over protect your ears but I feel like that information was irresponsibly misconstrued on these sites. If your ears are damaged you should not follow the normal noise guidelines people with healthy ears follow. Genetically speaking as well, your ears are probably also not as strong as others and should have followed a lower decibel guideline to begin with.


I don't advocate living like a hermit either. Or living in fear. But it's irresponsible the way some of you claim "X noise levels can't hurt you". Everyone is different.


BALANCE is key. LISTEN to your body.


P.S. I will add that you can always improve too. But not becoming complacent to noise is key (in my opinion).

 

[Bill Bauer]

Oh don't you just hate it when you're sitting in a public loo, and someone bursts in, sounding like they're busting, slams the door with the force of an African stampede, and it reverberates throughout the entire room. You feel like knocking on the next cubicle and go "far out, ya right mate?"

Public washrooms are not safe places to be. Doors slam, hand dryers and flushing toilets can be unbelievably loud. I wear earplugs or muffs when I am in one.

 

[Michael Leigh]

In case you missed it, please read the post below

What is your point of alerting me to this members post @Bill Bauer?

 

[Jack Straw]

In case you missed it, please read the post below, @Ed209 , @Michael Leigh, @Tinker Bell

What is your point of alerting me to this members post @Bill Bauer?

Before we all jump the gun here let's wait to find out what kind of noise she was exposing herself to.

 

[Bill Bauer]

What is your point of alerting me to this members post @Bill Bauer?

You are likely one of the people whose posts had that tremendously negative impact on Layla. You advise people to "not overprotect." As you can see, it is not always a good advice. I hope you will start telling people that making sure to not underprotect is a lot more important than making sure to not overprotect.

 

[Tinker Bell]

In case you missed it, please read the post below, @Ed209 , @Michael Leigh, @Tinker Bell

And? There are members who say they are worse due to anxiety from this site. Members who say they overprotected based on forum advice and saw their hyperacusis and/or tinnitus worsen.

Should I start avoiding all noises above 70dB? You see, I tried that early on and it made my hyperacusis and tinnitus worse. I tried to avoid moderate noises and wear ear protection just in case — like you advise. And you know what happened? I got worse! My tinnitus grew louder due to increased auditory gain, my sound tolerance collapsed and my anxiety to sound made it difficult to function.

So I guess our anecdotal experiences cancel each other out.

 

[Tinker Bell]

Before we all jump the gun here let's wait to find out what kind of noise she was exposing herself to.

Exactly. Are we talking 90dB night clubs or a walk in the park?

 

[Bill Bauer]

I guess our anecdotal experiences cancel each other out.

You don't know whether you would have gotten even worse if you were to not protect your ears.

In any case, I guess all of those experiences should be mentioned to newbies, and they should experiment with the approach that sounds right to them.

 

[Michael Leigh]

You are likely one of the people whose posts had that tremendously negative impact on Layla. You advise people to "not overprotect." As you can see, it is not always a good advice. I hope you will start telling people that making sure to not underprotect is a lot more important than making sure to not overprotect.

It is a shame that you have chosen this path to call me out. I know you thrive on arguing and that is something I'm not prepared to engage in but I will mention a few points, for you and readers of this post.

I, like others in this forum have had "noise induced" tinnitus for many years and have experience with it. The advice not to overprotect one's hearing is the right one and to choose not to follow this advice, in favour of wearing earmuffs and earplugs at the slightest hint of being around loud noise, a person risks developing additional problems along with their tinnitus and hyperacusis if they have both.

This brings me to mention two forum members that PM'd me December 2017, complaining about you after following your recommendations about overprotecting the ears using earmuffs and earplugs. They blame you for them developing Phonophobia and Misophonia. They both had tinnitus and hyperacusis and were referred to Hearing Therapists for treatment. They were told, these conditions were brought about due to the overuse of hearing protection. It was for this reason I wrote the post: The Complexities of Tinnitus and Hyperacusis https://www.tinnitustalk.com/threads/the-complexities-of-tinnitus-and-hyperacusis.25733/ At the time, I chose not to mention your name as my reason for writing the post but was tempted.

Layla's situation is unfortunate and I have gone back and read a few of her earlier posts. She says she visited this forum for 6 months and never posted just perused the forum. Whilst there's nothing wrong with this it isn't the best way to get help if one needs it. If she had sent me a PM or posted a question in the forum I would have tried to help. From what I gather, she hasn't been to ENT for tests or been referred to a Hearing Therapist for treatment. Her tinnitus is quite intrusive brought on by exposure to loud noise. Therefore she should seek help as this is what is needed.

I will not be commenting further on this matter.

Michael

 

[Tinker Bell]

You don't know whether you would have gotten even worse if you were to not protect your ears.

In any case, I guess all of those experiences should be mentioned to newbies, and they should experiment with the approach that sounds right to them.

And we do not know if Layla would have gotten worse if she had over protected her ears. She recently posted about a B12 deficiency. Who's to say that did not contribute, too?

Anyone new to tinnitus should consider the advice of this forum, their individual auditory exam results, and their personal circumstances. No one should blindly follow advice without recognizing their own situation may be different.

 

[Red]

We don't know how Layla got worse and she has not posted how, beyond mentioning that it's complicated.

 

[coffee_girl]

Nobody should be taking any life altering advice from a bunch of strangers online, there are opinions but you gotta listen to common sense and don't take risks with your body. Nobody in this subforum is a doctor, but then again even doctor's don't know what theyre talking about. Every situation is different, and every person's T is different...I think this needs to be rule #1

 

[Jack Straw]

Nobody should be taking any life altering advice from a bunch of strangers online, there are opinions but you gotta listen to common sense and don't take risks with your body. Nobody in this subforum is a doctor, but then again even doctor's don't know what theyre talking about. Every situation is different, and every person's T is different...I think this needs to be rule #1

I think that there should be a sticky in the support forum that basically says this.

For her to blame the forum for her situation is a little unfair to everyone on here.

 

[Ed209]

I think that there should be a sticky in the support forum that basically says this.

For her to blame the forum for her situation is a little unfair to everyone on here.

There is a disclaimer on the home page already.

"Information published on this site is not intended as a substitute for medical advice. For medical care, consult a medical professional."

 

[Jack Straw]

There is a disclaimer on the home page already.

My bad! Didn't see that!

 

[Bill Bauer]

For her to blame the forum for her situation is a little unfair to everyone on here.

I disagree!

 

[Jack Straw]

I disagree!

We will agree to disagree until she responds. I am curious as to what advice she got and what she exposed herself to.

 

[Ed209]

@Bill Bauer, why you picking on me? What have I done?

Seriously though, we have no clue what has happened with Layla. Sometimes tinnitus fluctuates for no reason at all; it's a bizarre condition at times. The longer you have it the more you realise how random it can be.

I've never told anyone to expose themselves to dangerous levels of noise. Living your life permanently attached to hearing protection is not the answer, unless you want more problems to add to the list. Identifying causation like this opens up a whole world of issues, and we have no idea if it's a spike or something else. Something as simple as a change in mood can make one's perception of tinnitus change, so it's far too complex of a puzzle to say with any conviction that you know why something has happened.

On the other hand, if she had been to a few metal concerts with no ear plugs, and said her tinnitus became worse immediately following one of them, I'd say there's good probable cause to blame the concerts.

Please don't forget there are people on here with crippling phonophobia and it's not fair to constantly bombard them with irrational fears.

 

[Bill Bauer]

It is a shame that you have chosen this path to call me out.

I wasn't calling you out - I was making sure that you are aware of the suffering your advice can cause.

I know you thrive on arguing

I thrive on defending my views.

The advice not to overprotect one's hearing is the right one and to choose not to follow this advice, in favour of wearing earmuffs and earplugs at the slightest hint of being around loud noise, a person risks developing additional problems along with their tinnitus and hyperacusis if they have both.

Wow - this is like a religion to you - you are immune to all of the evidence that contradicts your beliefs.

They blame you for them developing Phonophobia and Misophonia.

It is ok to be afraid of the things that can seriously harm you. I bet Leyla would have chosen phonophobia over what she is experiencing now.

If she had sent me a PM or posted a question in the forum I would have tried to help.

You would have told her to do the things that she ended up doing and that had caused problems for her.

why you picking on me?

Everyone on this forum are "my people." The last thing I want is to pick on the people here. I also don't want to make anyone feel bad. I know that people who are on this forum already feel bad. I just wanted for you to be aware of that post - that is all.

Sometimes tinnitus fluctuates for no reason at all

I can't disagree with that...

I've neved told anyone to expose themselves to dangerous levels of noise.

You have been telling people to stop caring about being exposed to moderate noise.
To quote Layla:

If your ears are damaged you should not follow the normal noise guidelines people with healthy ears follow. Genetically speaking as well, your ears are probably also not as strong as others and should have followed a lower decibel guideline to begin with.


I don't advocate living like a hermit either. Or living in fear. But it's irresponsible the way some of you claim "X noise levels can't hurt you". Everyone is different.

Living your life permanently attached to hearing protection is not the answer, unless you want more problems in your life.

I couldn't disagree more.

Please don't forget there are people on here with crippling phonophobia and it's not fair to constantly bombard them with irrational fears.

Wouldn't you agree that phonophobia is preferable to debilitating T? In any case, multiple posters here (including myself) found out the hard way that those fears are NOT irrational.

 

[coffee_girl]

Bill, you have been on the edge lately. Anything going on? Spit it out!

 

[Michael Leigh]

Wow - this is like a religion to you - you are immune to all of the evidence that contradicts your beliefs.

The post below is one of many comments that I receive from people that thanked me for my help.

From darkness into light.

Tinnitus is not an easy condition to live with when it is severe. So it always pleases me to hear when someone habituates and is able to put the passed behind them and look forwards to a brighter future. A forum member contacted me recently to express just that and has agreed for me to include some of his comments although his name has been changed. Anyone having difficulty habituating I hope they will find this post helpful.

Last year Marcus was in a distressed state and convinced he would never see light again at the end of the tunnel. He works as an electrician and while up a ladder one afternoon, suddenly heard a loud ringing coming from a fire alarm that was on a nearby wall. He didn't pay it much attention and wasn't concerned about his hearing as he believed it would soon stop. He continued working but this proved not to be a good idea as the alarm continued for another twenty minutes. When it finally stopped and there was complete silence he then noticed ringing in his ears. Over the following days and weeks it gradually became louder and more intrusive.

I remember his out pouring and condemning himself in this forum as if it were yesterday. He couldn't believe he had done such a thing. Staying in that vicinity with no hearing protection and not coming down off that ladder had resulted in his whole life being turned upside down. With the benefit of hindsight one is often able to see mistakes that could have been easily avoided if they only knew. In his own words life as he once new it was completely over. Married with two young children he enjoyed regularly going out with the family but all that came to an abrupt end. I and other forum members tried to make Marcus look at the positive things in his life and not to give up hope but little of this was having any impact. The walls of negativity that he had built up to surround himself were just too great and it seemed no amount of good advice was able to get through.

His symptoms will be familiar to those that have suffered noise trauma to their auditory system. Intrusive tinnitus with hyperacusis, that can vary considerably especially in the early onset of the conditions. I understood his distress at not being able to enjoy listening to music even as a form of distraction from the noise. Everything sounded distorted to him as if it is coming out of a broken speaker and his ears would hurt when certain sounds were heard. His appointment at ENT was some time away which is often the case when tinnitus is not accompanied by dizziness, balance problems and impaired hearing or continuous pain in the ears.

Contrary to what some believe, the best treatment for tinnitus in the early stages and when there are no additional symptoms, as mentioned above is to leave it alone. The ears and auditory system are very delicate and often right themselves when left alone. Many people habituate to tinnitus within the first six months sometimes a little longer and the condition has been known to go away completely. Marcus had taken time of work, as he just wasn't in a good place and couldn't function properly. One good thing is that he was under the care of his GP and taking medication to help cope with his moods. Tinnitus can be such an emotional roller coaster in the early days so often no two days are the same. An antidepressant often helps a person from becoming too down so acts as a safety net when those low points arrive.

Marcus became a frequent visitor to this forum and I believe it helped him, although his outlook on recovery was quite bleak and negative. Perhaps knowing there were people around him in this virtual world of cyberspace, gave him the support and sanctuary that he needed to vent his frustrations which at times I believe were overwhelming. I hadn't seen him for quite a while but got an acknowledgement from him recently by private messenger. I have omitted my comments.

It changes a lot over time doesn't it. Not just one's perception of it but the tone itself.
For me it ranges from a jet engine noise to hum, I used to hear it all the time but now I only hear it in silence.

Just past the 1 year mark for me. Feeling much better now. It sure does take time.
How's things with you? I really appreciate the help and advice you have offered to me over this time, and the help from other people in the forum.

It's a terrible condition. I did go too see Guns n Roses last weekend at Slane castle. Used professional ear plugs, was a great show and no negative consequences apart from a crazy two day hangover lol

The fact the concert was outdoors made it possible, it still peeked at over 115db at times.
I still haven't been seen at ent yet, did bother chasing up the appointment. No point really. I will take your advice and chase up ent and see if I can get an appointment. Just to do the tests.

Yes, I'm much much better now, I was in a very dark place. It was a terrible time. Things have improved, the distortion in music has gone and things sound normal again. I can even setup an eq system hear the different frequencies, when I first suffered this I couldn't hear bass, everything sounded flat, really was a bad time, I'm surprised I survived it to be honest.

I now have a new appreciation for sound and music. I just wish I understood this before. I still have slight balance issues but mostly I am happy my hearing has improved, It is very difficult too accept when it happens as I am sure you know.
I will always use hearing protection at loud events, concerts etc. The guns n roses concert felt fine with my pro plugs in and I noticed many others using plugs too. Good to see.

I'm back at work and able to spend time with my family. Thanks Michael for your advice (even at those times when I didn't believe it)
Marcus

 

[Bill Bauer]

I have no doubt that people found your advice to be helpful@Michael Leigh . But you might want to be more balanced and warn them about the dangers of underprotecting, whenever you talk about the dangers of overprotecting.

 

[Jack Straw]

@Bill Bauer, why you picking on me? What have I done?

Seriously though, we have no clue what has happened with Layla. Sometimes tinnitus fluctuates for no reason at all; it's a bizarre condition at times. The longer you have it the more you realise how random it can be.

I've never told anyone to expose themselves to dangerous levels of noise. Living your life permanently attached to hearing protection is not the answer, unless you want more problems to add to the list. Identifying causation like this opens up a whole world of issues, and we have no idea if it's a spike or something else. Something as simple as a change in mood can make one's perception of tinnitus change, so it's far too complex of a puzzle to say with any conviction that you know why something has happened.

On the other hand, if she had been to a few metal concerts with no ear plugs, and said her tinnitus became worse immediately following one of them, I'd say there's good probable cause to blame the concerts.

Please don't forget there are people on here with crippling phonophobia and it's not fair to constantly bombard them with irrational fears.

Going to a metal concert without ear plugs doesn't seem like advice anyone would give on here. If this is the case, it definitely can't be our fault for her worsening tinnitus.

 

[Ed209]

Wouldn't you agree that phonophobia is preferable to debilitating T? In any case, multiple posters here (including myself) found out the hard way that those fears are NOT irrational.

No!! If you could see my inbox you'd realise what a dangerous line you are walking. I have people who are at their wits' end any time they hear the slightest sound, because they have now been conditioned to believe it is damaging their ears. It's the worst possible thing you can do, to sit monitoring every sound you hear, and then check your tinnitus. It becomes an obsession that takes over one's life. This is certainly not preferable! There are people contemplating suicide over the sound of a conversation for example. If you could see what this obsession (which is likely a form of OCD) does to a person's life you'd be a fool to not reconsider what you are routinely telling people.

I feel so sorry when I see message after message saying, "I've had another incident and I can't eat or sleep, what should I do. I can't take anymore." The incidents can range from birds chirping to walking on gravel, to talking. Most of my PMs and emails, from various people, follow the same trend, they have a huge attack of anxiety, freak out, and then move on to the next sound. I can safely say I've heard about, easily, over a hundred sound incidents from non-threatening sources.

It's really serious. One guy in particular won't leave his house without double protection, no matter what. The last thing they should be doing is reading your posts, but unfortunately, I have no control over what they do. I know they linger on here reading all this crap and it's bringing them down and I know many of them are beyond my help. It's really tragic.

 

[coffee_girl]

Going to a metal concert without ear plugs doesn't seem like advice anyone would give on here. If this is the case, it definitely can't be our fault for her worsening tinnitus.

I know! That doesn't sound like anything Ed or Michael would ever say.

 

[Michael Leigh]

I have no doubt that people found your advice to be helpful@Michael Leigh . But you might want to be more balanced and warn them about the dangers of underprotecting, whenever you talk about the dangers of overprotecting.

I said that I wasn't going to engage in arguing with you because this is what you thrive on. I am willing to learn from anyone for no-one knows it all but I do not need to take instruction from you, please be assured of that. Occasionally you raise some interesting points but quite frankly, a lot of your advice is just plain scaremongering and dangerous. I mean: advising people to wear ear protection when visiting a public convenience due to fear of flushing WC, hand driers etc is just ludicrous. I have more important things to do goodbye.

 

[GregCA]

There is a disclaimer on the home page already.

"Information published on this site is not intended as a substitute for medical advice. For medical care, consult a medical professional."

Wow, I never noticed it.
I don't think it would hurt if it was more prominent (it's quite a fine print) and/or visible next to the prose that may be construed as medical advice (ie the actual content of posts).

 

[Bill Bauer]

I know! That doesn't sound like anything Ed or Michael would ever say.

The above implies that noises a lot milder than that (the kinds of noises that "the veterans" around here claim ought to be ok) are to blame for what had happened to Layla.