I'm Phonophobic

[Ed209]

Phonophobia is a common problem on Tinnitus Talk but it is rarely discussed in a serious manner and it never seems to be taken seriously. This seems like quite an anomaly considering how devastating and life-limiting it can be. Striveon reached out for help but all I see is a lot of arguing and what appears to be a complete lack of understanding of the condition.

Phonophobia can take over one's life to the point that a person can barely function. Sound, in general, becomes a significant problem for sufferers and this is where a distinction has to be made. We are not talking about going to concerts and other dangerously loud environments. A sufferer will often resort to wearing earplugs and/or muffs around the house (sometimes both) because they are terrified of sound. This has huge implications on one's life and it can cause incredible distress and depression; not to mention worsening tinnitus and hyperacusis symptoms.

In private, I see the full devastation this has on people's lives and this is rarely reflected on the forum. I feel some are afraid to be honest in full view of everyone, but nobody should be terrified to live their lives without the use of earplugs and/or muffs, 24/7. Some of the stuff I've heard over the last two years is enough to shock even the most hardened individuals. Again, we are not talking about protecting our ears during noisy activities and/or behaving sensibly around loud noise. That is not phonophobia.

There is a problem here that I feel needs addressing. Some members often post things that are just too extreme, and this not only exacerbates the problem for sufferers (who shouldn't be reading this stuff in the first place), but it shows that those posters are most likely phonophobic themselves. For example, I saw Bill Bauer tell someone not to hoover whilst using ear protection as it provides a false sense of security, and then went on to advise them that they should get others to hoover for them. Hoovering with ear protection is not dangerous and nobody on here should be saying stuff like that. This is a type of classical conditioning and the end result is not a good one. Unfortunately, because of the demographic that is present here, it becomes a bit of an echo chamber and this doesn't help anyone.

If you do some research you'll better understand what phonophobia is and how detrimental it can be.

Here's an interesting case study:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3216140/

I also found this study quite interesting:

https://www.ncbi.nlm.nih.gov/m/pubmed/31184510/?i=7&from=phonophobia

It implicates that those who were brought up by mentally ill parents may have a more difficult time dealing with tinnitus and/or hyperacusis. I immediately thought of you, @Jazzer. Maybe your past is a contributing factor in how you deal with it? My mom has the same problems with OCD and depression and she also had a terrible childhood. We know that genes can get turned off and on during our early development depending upon our environment and how we are nurtured. This often has ramifications in how we learn to cope with stuff in later life.

I know we are all totally unique and walk our own journey with tinnitus, hyperacusis, and phonophobia, but the only way forward is to be supportive of each other and to help with the fight towards a cure.

 

[Jazzer]

My understanding is that treatment for phonophobia will always have to incorporate exposure or exposure therapy.

One can experiment - cautiously and sensibly.

Personally I will never take anybody else's advice on what is a safe or a dangerous volume of noise for me to experience.
Nobody has my ears, my condition, my level of discomfort or pain.

Nobody knows what I experience when loud dogs continue to bark, when I hoover for one or two hours, when I stand next to a hand dryer for two minutes.
Does that represent fear - of course not.
What it represents is physical discomfort.

No specialist can advise me on these moments.
I always leave the house with plugs in my pocket.
I hardly ever use them.

I - Hardly - Ever - Use - Them.

If I feel real discomfort I will put them in.
Problem solved.

I do not fear sounds - but I am ready for them.
I will not use psychoactive drugs ever.

When I was assessed for CBT by Guildford general hospital the specialist said that my understanding together with my level of meditation meant that he had nothing extra to offer me.

I believe that to be true.

But as everything else in life - we all take a view.

 

[Candy]

A forum becomes an echo chamber with its own language and beliefs, totally agree @Ed209. Some ideas are propagated without any backing.

Some glib comments can be costly...

 

[just1morething]

Can I put me feet up now then Eric?

(You have to stand up for
what you stand up for !)

Damn right!!

 

[JohnAdams]

I am a proud phonophobe.

 

[Ed209]

The advice is not to abstain from normal everyday sounds. The advice is: "if normal everyday sounds have been causing serious spikes for you, listen to the signals given to you by your own body and act accordingly"

This isn't always the case and is far too simplistic a way of looking at things. There are people out there who are so phonophobic that they get new tones and a spike at the faintest of sounds, and this is whilst unnecessarily using earplugs and/or muffs. This can escalate to the point that they isolate themselves in their homes whilst using double protection. The problem in these cases is the protection itself and the negatively conditioned beliefs of the sufferer.

This should never be confused with people using protection for the right reasons. To me, some of the comments here show a lack of understanding of what phonophobia actually is. When someone with this problem looks at your advice, Bill, it is the absolute worst thing they could be reading. It simply reaffirms a faulty belief which is completely toxic for someone with this condition.

To anyone reading who suffers with phonophobia my advice is to stay off all online forums and to get some help. There are ways of improving your situation.

Nobody knows what I experience when loud dogs continue to bark, when I hoover for one or two hours, when I stand next to a hand dryer for two minutes.
Does that represent fear - of course not.
What it represents is physical discomfort.

Your comment above doesn't really help Striveon or others who suffer as it's not really related to phonophobia, per se. I'm looking more towards people who can no longer function in life, at all, regardless of protection because everything they hear is a big problem whether it's objectively loud or not. Some of the stuff I've been told privately is absolutely heartbreaking and when I look at the responses here it's clear to me that many of you don't truly understand it.

 

[Bill Bauer]

There are people out there who are so phonophobic that they get new tones and a spike at the faintest of sounds

If the new tone is permanent, then it isn't due to their mind, but due to their ears being messed up, and so they would be right to try to minimize those exposures.

The problem in these cases is the protection itself and the negatively conditioned beliefs of the sufferer.

Riiiight...

This can escalate to the point that they isolate themselves in their homes whilst using double protection.

I agree that on very rare occasions it can get debilitating. But as with anything, just because there are people who might be overdoing it (e.g., ear protection, eating ice cream, eating healthy foods, drinking alcohol, etc.), doesn't mean that it isn't a good idea to do it.

 

[fishbone]

just because there are people who might be overdoing it (e.g., eating ice cream, eating healthy foods.), doesn't mean that it isn't a good idea to do it.

I'm addicted to ice cream, Bill please don't encourage me to have another bowl.....

 

[Ed209]

Riiiight...

You have no idea the damage you've done to some people. I was pulled back here out of compassion for others via email notifications and can clearly see that nothing has changed at all.

Phonophobic people should not be looking at online forums. The stuff that gets posted often causes more harm than good and your responses clearly show that you have no understanding of what you're talking about.

How is it a good thing that people are suicidal and scared to leave their house? Scared to talk to other people even with earplugs and muffs? Getting spikes at relaxation spas whilst wearing earplugs? Scared to open a window in their house whilst protected? Paralysed by unrelating fear, 24/7, only to read your sage advice that they should listen to their body and the warnings they are being given? This has been mentioned to you numerous times and yet you're still saying these things on a thread about phonophobia, of all things. It makes me feel physically sick as I know what your comments can do to some who may be reading.

For these individuals, it's clearly an anxiety driven problem and yet you have pushed them over the edge with your comments, and some are now so damaged that they no longer know which way is up. Some of you may think this is trivial but I can assure you it's not.

I don't care about petty internet arguments, I care about the welfare of others who may be affected.

 

[GlennS]

I am a proud phonophobe.

I would say that's justified if something as seemingly harmless as a family member kissing your ear caused your expensive and painful korean treatment to undo itself.

 

[fishbone]

You have no idea the damage you've done to some people. I was pulled back here out of compassion for others via email notifications and can clearly see that nothing has changed at all.

Phonophobic people should not be looking at online forums. The stuff that gets posted often causes more harm than good and your responses clearly show that you have no understanding of what you're talking about.

How is it a good thing that people are suicidal and scared to leave their house? Scared to talk to other people even with earplugs and muffs? Getting spikes at relaxation spas whilst wearing earplugs? Scared to open a window in their house whilst protected? Paralysed by unrelating fear, 24/7, only to read your sage advice that they should listen to their body and the warnings they are being given? This has been mentioned to you numerous times and yet you're still saying these things on a thread about phonophobia, of all things. It makes me feel physically sick as I know what your comments can do to some who may be reading.

For these individuals, it's clearly an anxiety driven problem and yet you have pushed them over the edge with your comments, and some are now so damaged that they no longer know which way is up. Some of you may think this is trivial but I can assure you it's not.

I don't care about petty internet arguments, I care about the welfare of others who may be affected.

I have always said from day 1, that people need to speak to a real person and deal with their fears and anxiety. I recall how I was dealing with some health issues and forums only made me more obsessive. This forum is wonderful but people need to seek therapy if needed with a real person as well...

Your words are spot on bro!

 

[Bill Bauer]

You have no idea the damage you've done to some people.

You are right, this is the difference between you and I. I have to rely on reports of some mysterious messages that you say you got. In contrast, you can read about the damage you've done in messages all over this forum. Here are two examples that I happened to save:

Oh go you'll be fine they said. Wear earplugs they said.

So I went to the event with ear plugs. Was there for only a few minutes. Big mistake. Gave me low drone/hum that's worst than the high pitch hiss/eeeee, tea kettle sounds. Never went away. sigh
3 1/2 years ago.

Everyone is different. Every situation is different.
You have to make a decision and live with it.

I can't take it anymore. I don't want to die but at this stage the urge to stop suffering is stronger. Ps. To all members in this forum advising against so called "overprotection". I never exposed myself to sounds even remotely considered as being potentially harmful to healthy people but because of your advice I was exposed to sounds uncomfortable for me which eventually proved to be damaging.

At initial stages i was very weary about sound levels around me and used protection everytime I felt uncomfortable.

Only by reading TRT literature or some posts here I started to expose my self to sounds loud but never louder than 75-80 dB.

Whenever I was feeling like something is not right I was stupid enough to believe you these changes were part of "the natural process of healing".

Is this your healing? Every time you feel like giving this sort of advice have my case in mind.

I advise you to re-read the last sentence of the post above. In fact, please re-read it every time you feel like trying to "save" people from "phonophobia".

How is it a good thing that people are suicidal and scared to leave their house?

If they were to get louder tinnitus, they would be a lot more suicidal. It is ok to be scared of the things that can seriously harm you.

Scared to talk to other people even with earplugs and muffs? Getting spikes at relaxation spas whilst wearing earplugs? Scared to open a window in their house whilst protected?

Yes, all of that describes people who are overdoing it. This doesn't imply that it isn't a good idea to protect against the sounds that you learn the hard way can harm you. By the way above "talking to other people" is actually socializing at a loud restaurant or with small children who are prone to screaming. The other two you must have just made up - I don't recall anyone describing anything like that.

 

[Ed209]

You are right, this is the difference between you and I. I have to rely on reports of some mysterious messages that you say you got. In contrast, you can read about the damage you've done in messages all over this forum. Here are two examples that I happened to save:


I advise you to re-read the last sentence of the post above. In fact, please re-read it every time you feel like trying to "save" people from "phonophobia".

If they were to get louder tinnitus, they would be a lot more suicidal. It is ok to be scared of the things that can seriously harm you.

Yes, all of that describes people who are overdoing it. This doesn't imply that it isn't a good idea to protect against the sounds that you learn the hard way can harm you. By the way above "talking to other people" is actually socializing at a loud restaurant or with small children who are prone to screaming. The other two you must have just made up - I don't recall anyone describing anything like that.

I'm lost for words. See you later, Bill.

 

[Bill Bauer]

I'm lost for words. See you later, Bill.

How convenient and wise - now you don't have to provide any evidence/arguments to justify your statement. You are onto something.

 

[JohnAdams]

@Bill Bauer
Quadriplegics that refuse to play in the waves on the beach are just cowards. Just let them live their lives and stop plaguing their minds with fear.

 

[Greg Sacramento]

Little or no volume is bad and too high of a volume control setting is also bad.

Two numbers are often used for medical condition comparing, such as pulses, blood, chemistry, heart, cholesterol and input/output of fluids.

So with this topic of volume, we don't know where the middle ground may be for a particular person. We don't know about their complete medical history and nothing about their genes, brain wave patterns and such, nor their physical ears.

I have read about more than a few conditions - beyond heart rate and pressure that can associate to tinnitus where the volume needs to be kept at no higher than low medium. These conditions fall under several areas of medical practice and therefore no one specialized doctor is an expert on this subject matter, so how can we be.

 

[Jazzer]

You have no idea the damage you've done to some people.

What a statement to make.
I would not accept this from anybody.

The danger is noise.
Our damage - the result of noise.
Using protection is vital.
By saying that - am I hurting a phono phobic?
Of course I am not.

Bearing in mind that there is no such thing as a Tinnitus guru - an oracle - a specialist who has proved himself to be a Tinnitus messiah with all the answers - we all come at this 'bitch' from our own perspective, and consequently we give the very best advice we are capable of.

I read everybody's advice - I agree with some - I reject others - I am free to pick and choose.

@Bill Bauer does not have all the answers,
nor do I - and nor does @Ed209.

The best possible guide I have access to
is 'my own experience.'

I'm done now.

 

[Michael Leigh]

Quadriplegics that refuse to play in the waves on the beach are just cowards. Just let them live their lives and stop plaguing their minds with fear.

On the contrary. People that play games such as you and your cohorts are time wasters and serve only one purpose here, to be an annoyance.

 

[Jazzer]

On the contrary. People that play games such as you and your cohorts are time wasters and serve only one purpose here, to be an annoyance.

"Hahahahahahaha.....Wonderful !!!"
Sorry Michael - blatant pomposity always makes me laugh my socks off. Hahahahahahaha!
(I'll be alright in a minute - just got to get my breath back.)
Not only am I an acolyte of @Bill Bauer
I have just been promoted as a cohort of @JohnAdams.

This is a forum - right - where in the time honoured fashion, since Roman times, serious matters are considered, debated, agreed on and disagreed on.
We all have just one voice, which has a right to make itself heard.
You may think of that as a time-wasting annoyance, but that observation is purely your own problem.
My old auntie always said,
"Choose your friends wisely."

 

[Michael Leigh]

"Hahahahahahaha.....Wonderful !!!"
Sorry Michael - blatant pomposity always makes me laugh my socks off. Hahahahahahaha!
(I'll be alright in a minute - just got to get my breath back.)
Not only am I an acolyte of @Bill Bauer
I have just been promoted as a cohort of @JohnAdams.

I like this @Jazzer and made me smile....

All the best
Michael

 

[JohnAdams]

I find it amazing that those of us that are simply advocating that people with hearing damage avoid loud venues and protect their ears are taking any flak whatsoever.

 

[Ed209]

It's quite sad to see that nobody has taken this seriously and people are even cracking jokes! This is a support forum; what the hell happened to this place? The original post by Striveon was lost in the abyss almost immediately with little help or support from anybody. This is a serious subject.

There is one person in particular that I'm really worried about as I haven't heard from him in a while and he was diagnosed as being severely phonophobic. He was in a really bad place the last time I spoke with him, so when I see threads like this, I lose all faith in humanity. What I see is a load of people arguing, and for what? To see who can get the last point in? This ain't a game.

Support your fellow sufferers and try to understand that everybody faces a different challenge. You are all looking at this through the lens of your own lives and not from the perspective of those who suffer with this.

 

[JohnAdams]

So now you go out to everywhere except for weddings and concerts? So is a mall okay with you? What kind of restaurants are okay without earplugs?

Many restaurants are way super loud. I recently found an awesome breakfast place that seems to be popular with older people, therefore is quiet, and my wife and I have been making it a habit to go there on the weekend and get pancakes and stuff with our kid.

We also have been going to the mall early right when it opens and walking around and the big open spaces seem to mitigate the loudness. I don't know about your level of comfort but you can certainly test the waters and my best advice is to keep earplugs on you and if you feel for a split second like it's getting too loud, put in your plugs and or evacuate.

 

[Ed209]

I find it amazing that those of us that are simply advocating that people with hearing damage avoid loud venues and protect their ears are taking any flak whatsoever.

But I think you'll find everyone on this site will unanimously agree with that statement. The question is what does that have to do with phonophobia?

Here's a brief description of what phonophobia is, because it seems none of you understand what the topic is:

Misophonia/Phonophobia

Misophonia (dislike of sound) is also an adverse response to sound no matter what volume the sound is. Typically misophonia characterizes an individual who reacts strongly to soft sounds and sometimes is further triggered by seeing the source of the offending sound. Common examples would include but are not limited to: the sound of people eating, smacking their lips, sniffing, the sound of certain consonants like p, s, or t, and repetitive sounds. These individuals do not have a collapsed tolerance to sound which would be evident in a Loudness Discomfort Level (LDL) test.

Phonophobia is considered a subcatagory of misophonia. This is also an adverse emotional response involving fear of sound. Phonophonbia often develops with an individual who has a significant collapsed tolerance to sound. They not only fear the sound of the environment they are experiencing in real time (right now) they worry about the sound that future events of the day or in the near future will produce. It can significantly interfer with a patients recovery as they seek or complete sound therapy. Phonophobia can take over ones life and make one feel they need to isolate themselves to survive. This is a recipe for disaster. It is critical that we keep our ears active to rebuild our tolerances to sound. That is why broadband pink noise is so crucial to bringing us back to the mainstream of life.

There are people on this site that fear sound, regardless of volume. Some of them double-protect around the clock and spike if they encounter a sound they don't like. This is based on faulty logic and is anxiety driven. It's not wise to be telling people with this condition that they have damaged their ears and are damaging their ears. You have to understand that some are having these events constantly, even with protection, and this is happening with sounds that can be no louder than 50 dB in some cases (20 dB with the protection they are using). This over-reliance on protection further reduces one's tolerance to sound and it just creates a downwards spiral.

This is NOT the same as protecting your ears against dangerously loud noise.

 

[fishbone]

You are all looking at this through the lens of your own lives and not from the perspective of those who suffer with this.

My lens are focused on helping people. I don't come here to ask for help and I mostly never post a post asking for help(extremely rare for me to do). I come here out of my kindness to help people avoid the tinnitus that I have right now. I truly get your statements and I'm glad you take such a stance as well

I do take this thread seriously and I hope OP can gain some value from posts that she might find helpful. At the end of the day Ed, it all comes down to the mind/mentality and how we think/perceive things. Having that proper frame of mind is so crucial for tinnitus management and for life in general.

Ty for your stance and your care, we are fully on the same page!

 

[Bill Bauer]

with little help or support from anybody

The support was to tell him that there is usually no such thing as being phonophobic (not for the vast majority of T sufferers, anyway). Being phonophobic is something like

Getting spikes at relaxation spas whilst wearing earplugs? Scared to open a window in their house whilst protected?

which nobody is doing, and specifically which the original poster is NOT doing. He wrote that he doesn't want to behave in a sensible way, and it was pointed out to him that his alternative is risking getting debilitating T.

What I see is a load of people arguing, and for what?

The goal is to educate the newbies. If nobody responds to you, the newbies might get the impression that they should fight the nonexistent "phonophobia".

 

[Jazzer]

Psychotherapists can help you with all phobias.

There is nobody to help us with Tinnitus.

We are on our own.

We are forced to find our own answers, to this,
the loneliest condition in the world.

 

[Candy]

That is true @Jazzer, with so many questions and so little answers it's understandable...

It is a lonely condition, my GP was asking me about it, so was the ENT...hey.

At least they didn't tell me to do relaxation exercises - I always wondered how to do those in the middle of a meeting at work...

 

[Jazzer]

That is true @Jazzer, with so many questions and so little answers it's understandable...

It is a lonely condition, my GP was asking me about it, so was the ENT...hey.

At least they didn't tell me to do relaxation exercises - I always wondered how to do those in the middle of a meeting at work...

Hi Candy
If you can get into a practice of deep meditation it does help.
I know it's okay for me to find half an hour to do it - but for young people with a busy life, a job, a family, obviously not so easy.
Best wishes
Dave x
Jazzer

 

[Ed209]

That is true @Jazzer, with so many questions and so little answers it's understandable...

It is a lonely condition, my GP was asking me about it, so was the ENT...hey.

At least they didn't tell me to do relaxation exercises - I always wondered how to do those in the middle of a meeting at work...

You're an incredibly supportive person and don't deserve any of what you're going through. Give yourself time and you will find your feet again.