Tinnitus Classification for the General Public

The aim here should be "I have tinnitus and I DEMAND treatment/cure"!!!!

This is not a f....g competition in who lives a better or more fulfilling life!

Is anyone still unsure why we are not taken seriously and why there's no urgency to find treatment?
 
Because you have been incredibly arrogant and demeaning to me when I tried to tell you how much I suffered myself.

If an apology is owed it will be forthcoming.
But could you please refer me to my crime.
Accusations need to be substantiated my friend.
 
I'd say volume wise, I'm "moderate" yet telling someone that I have "moderate tinnitus" probably won't do me any justice and will just make them think "okay it's just a small problem"

Totally understandable and the exact reason the habituation myth exists

Let me explain...... If my T dropped to a lesser level, I would wait several months before even mentioning it here..... But in the real world I would never ever utter it to a soul because I know how callous this monster is and the next day I could be back to severe or worse and people would completely lose faith in my mental state. 'Oh him and his T one minute he's fine the next he wants to die. It's all in his head!'

This I believe is the reason people stick to the 'habituation' story. Telling people you actually got better or the volume lessened is too much of a risk. Better to say, 'oh it's bad as ever but I'm getting used to it.'

That is habituation debunked in a nutshell and even though they won't admit it, will strike a chord with all of the 'Ive beaten loud T' brigade.
 
@Ed209 it sounds like you are on good terms with your tinnitus these days. Is it severe tinnitus? I think our ability to cope and past anxiety, trauma, and likeliness to develop depression or have depression regardless of tinnitus plays a role in habituation as well. My tonal tinnitus can be canceled out at 45 decibels though I do sometimes here the tonal in the car.
My reactive winding up tinnitus I can hear in an airplane.

It's so subjective that I don't know, but based on other people's descriptions here, I'd say it's severe. However, my reaction is now mild to non-existent. This doesn't mean I'll always feel this way though.

I can hear my tinnitus 24/7 and can clearly hear it over motorway noise, a crowded bar, and other noisy situations. I have many sounds all stacked together and this includes a piercing dentist drill noise that fills my head; a high pure tone in my right ear; a low drone in my left ear with intermittent mid tones, and various hissing and static sounds underneath it all. This also includes an electrical zapping sensation around my brain (although this is less frequent now).

I first got tinnitus that I could hear outside of my bedroom when I was 19. I attribute this to attending too many gigs and clubs, and also the fact that I was playing a lot of loud guitar. It became what it is today around 3 and a half years ago.
 
As @Ed209 has correctly pointed out we indeed all are on the same ship.
I hope nobody minds too much if I offer another analogy:

The ship is slowly sinking and some of us are trying to figure out a way to send an SOS message to be rescued.

But some don't like this approach, because they claim that it could panic people and this could drive them to jump overboard.
This is why they prefer to have the house band to keep playing till the very last minute instead, while pretending that everything is just great.

I have a feeling that this had already happened to another boat once upon a time...the results were not that good.
 
I highly doubt anything anyone reads on the internet is going to kill them or not kill them. Tinnitus on the other hand coupled with doctors playing down its effects with the classic, 'ignore it and get on with your life,' very nearly did kill me and has killed many others who committed suicide right after their cosy habituation chat with a doctor.

Even newbies trust their fellow sufferers more than their doctors. They know their doctors can't give them a cure or even proper treatment and said doctors usually don't have tinnitus or hyperacusis. This is true of even other support groups outside of TT.

I highly doubt anything anyone reads on the internet is going to kill them or not kill them.

Are we frequenting the same internet? Are we talking about the internet where people of any age get cyber bullied, stalked, harassed, get told they should kill themselves, get doxxed, swatted, become mass targeted by an entire community of people through mob mentality? Are we talking about anxiety inducing healthcare sites like webmd, while true, cause phobia and paranoia?

There is a generalization that one needs thick skin to peruse the internet. It's easier for other people to use that as an excuse instead of treating people on the internet like actual people.

Where there are people there is influence. That influence can have a hand in the suicide even if people's reasons for committing suicide are complex and not all one reason.

https://www.nbcnews.com/health/health-news/suicide-rates-are-30-percent-1999-cdc-says-n880926

Doesn't talk about the internet but 1999 is around the time internet culture really began taking off.

https://en.m.wikipedia.org/wiki/Social_media_and_suicide

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3477910/


For me, joining the hyperacusis support forums on Facebook has played very little part in helping me recover. If anything it's given me worse suicidal ideation thanks to giving me the impression I will never lead a normal life again.
 
If I had joined TT today, my fear is that I probably would have killed myself. Pretty much all the support has gone or been driven away.

The positivity thread is the first one you see what are you on about? You willingly come into these threads then cry the victim lmao
 
It's all about perspective.

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Has the situation really improved or is it just bravado?! An attempt at a self fulfilling prophecy.

I stand by what I said. Telling people the noise is still the same but they're 100% better, when it's not actually true, can be very damaging to the mindsets of people who then feel like failures for being unable to achieve the same blissful state of insouciance.

I didn't see this yesterday. If there are people lying about feeling better then I think that's really odd behaviour. I certainly wouldn't bother wasting my time that's for sure.
 
If an apology is owed it will be forthcoming.
But could you please refer me to my crime.
Accusations need to be substantiated my friend.
I told you how much I was struggling and that I wish I had tinnitus I could match at 60 dB and you scoffed and publicly called me untrustworthy. Then you posted multiple demeaning memes/cartoons quoting my conversation with John Adams and calling it bolox.

The earlier part seems to be deleted but as you referenced it in this thread clearly you remember as well.
 
I told you how much I was struggling and that I wish I had tinnitus I could match at 60 dB and you scoffed and publicly called me untrustworthy. Then you posted multiple demeaning memes/cartoons quoting my conversation with John Adams and calling it bolox.

The earlier part seems to be deleted but as you referenced it in this thread clearly you remember as well.

Well it looks like a misunderstanding on both sides.
If I upset you then I am sorry Kelp.
I will try to do better.
Dave x
 
Many debates have been raging here about the lack of awareness (or distinction) between different tinnitus levels amongst the general public, which is only amplified by the ignorance about this condition in the medical field and reinforced by propaganda from various so called tinnitus associations, whom are essentially just the recruiting mills for the coping industry.

I think it is important to have some kind of a unified, simple and comprehensive scale in place, which would set the record straight for the average person "out there".

Here is my proposal:

It is important to understand, that there are 4 main levels of tinnitus.
Let's call them Mild, Moderate, Severe and Catastrophic.
It is equally important to understand, that each level is a huge step upwards from the previous level.

1) MILD LEVEL

If you are in this group, congratulations.
This is by far the largest group and roughly 90% of those affected by tinnitus fall within this group.

It might be a rough go at first, but you should be able to adapt within about 6 months and carry on with your life just as before...

As long as you are careful and don't get exposed to further acoustic trauma, you will probably live out the rest of your life problem free.
Metaphorically speaking, you will see the gate to hell, but you will most likely never find out what is on the other side of it.

2) MODERATE LEVEL

If you are in this group, the way you live will most likely be permanently altered and at this stage, tinnitus has the potential to destroy your life altogether.

This is where your genetic make-up and tolerance levels start becoming really important, since they will make the difference between a miserable life filled with horrid, permanent torture, or a life that is still tolerable.
Coping schemes might make a difference at this level, depending on your personality and the way you are wired.
If I had to use the hell metaphor again, you are now through the hells gate and the flames are licking your feet.

3) SEVERE LEVEL

Now you are in the big leagues.
You are most likely far beyond any coping scheme currently available and every millisecond of the rest of your life will be consumed by trying to suppress extreme anxiety and suicidal thoughts.

You will lose your ability to sleep, relax, focus, read and work and you are now socially dead... just off the top.

The only thing that might still keep you alive at this point is not wanting to cause the undue stress to your family and the hope, that there might be a cure (or at least some form of EFFECTIVE treatment) coming out soon.
Your life is now pure survival and there are no more good days.
You are at the deepest level of hell with nowhere to turn and no help available.

4) CATASTROPHIC LEVEL

You are now the walking dead.
Your hope for any cure is gone, since you realize that your demise is a matter of weeks, maybe months...
Too short of a time for anything to materialize.
Any metaphors or hell analogies fail at this point.
If there is a hell, I doubt that they are able to deliver THIS level of torture and cruelty.
Simply put, catastrophic tinnitus is hands down the very worst thing that can happen to a normal human being.
Those affected will now focus on finding the safest and least traumatic ways to kill themselves at the earliest opportunity... assuming the extreme stress and insomnia does not kill them first.


This is of course a very general guide.
There are always exceptions out there and there are many "in between" levels as well.
This is just an attempt to generalize and simplify tinnitus to the point, where your average reader can actually begin to understand it.

Feel free to make any suggestions as how you think this guide should look like.

How would you classify these with regard to volume? Masking is one way to get a handle on it. E.g. would you say - if your tinnitus can only be heard in a quiet room, or is masking by the TV or white noise, it's mild?

Is moderate tinnitus a noise that can be heard over most things but blocked by others?

And severe tinnitus something that can be heard over everything?

Or is that too a generous a definition for severe - many people here, perhaps most, would say they can hear their tinnitus over everything, or perhaps everything except the shower, yet within that group there are probably large variations in volume?
 
Wow!!! You are one seriously messed up dude if you kill yourself based on what some members say on a support forum. Is this a millennial thing?

??

With the state of mind I was in, anything was possible. I would rather read facts about all outcomes; that is all I'm saying. There have been far too many posts recently that have suggested positive outcomes should be hidden because they hinder the cause, and yet at the same time, nobody does a fucking thing to help the cause anyway (bar a tiny minority).

I'm saying everyone has the right to say their personal story whether it's life ending material or positive. People need to stop telling others what is and what isn't acceptable.

And after this Telis, I couldn't care less what you think:

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How would you classify these with regard to volume? Masking is one way to get a handle on it. E.g. would you say - if your tinnitus can only be heard in a quiet room, or is masking by the TV or white noise, it's mild?

Is moderate tinnitus a noise that can be heard over most things but blocked by others?

And severe tinnitus something that can be heard over everything?

Or is that too a generous a definition for severe - many people here, perhaps most, would say they can hear their tinnitus over everything, or perhaps everything except the shower, yet within that group there are probably large variations in volume?

The main thing is the intrusiveness....volume is secondary and it is not that accurate means of assessment from what I'm able to gather.
At the end of the day, what matters the most is how this affects your life.
But this kind of stuff would be way too hard to convey to the average reader out there, whom most likely never even heard of tinnitus.
It really needs to be kept as simple as possible minus all the possible variations.
 
As @Ed209 has correctly pointed out we indeed all are on the same ship.
I hope nobody minds too much if I offer another analogy:

The ship is slowly sinking and some of us are trying to figure out a way to send an SOS message to be rescued.

But some don't like this approach, because they claim that it could panic people and this could drive them to jump overboard.
This is why they prefer to have the house band to keep playing till the very last minute instead, while pretending that everything is just great.

I have a feeling that this had already happened to another boat once upon a time...the results were not that good.

I respect you as a person, but my ship is NEVER sinking. My life has never been as productive and full of purpose as it is right now.....

The ship only sinks, if we stop pushing forward.
 
There are definitely habituation stories that are real. I don't think these stories are being questioned here. There are also people who say they have severe tinnitus and they're still living lives they find worth living. However, I have yet to meet someone with severe, or perhaps I should say catastrophic, tinnitus whose life wasn't permanently altered. I've also seen users on here saying one minute they're not letting tinnitus stop them and then mention things they won't do due to their tinnitus anymore or being utterly exhausted the next minute. This is not addressed at anyone specifically, just a theme I've noticed.

Everyone should be allowed to share their experience, I completely agree with Ed on that. If someone can live well despite having tinnitus, they're allowed to tell their story and to motivate other people. But this regularly turns into 'everyone just needs to change their attitude and their brain will tune out the tinnitus'. I'm not saying this happens every time but it still happens too often.

Also, many people, when they're struggling with recent onset tinnitus or a spike, want to be told that they'll be okay again. We shouldn't lie to these people and tell them that their tinnitus will never bother them again but scaring them doesn't help either. In the beginning, support is essential. If their situation doesn't improve in months or years, then a more honest discussion would be appropriate. This doesn't mean that severe tinnitus should be sugar-coated.

But I also agree with other users that severe-catastrophic sufferers are often told that a change of heart would turn their debilitating conditions into mere annoyances. I'll never forget reading "They forget that the mental struggle is really what keeps T intrusive and loud" on here by a veteran who says they have severe tinnitus. A resilient mindset helps me to cope but it doesn't negate the impacts of t/h.

Habituation doesn't come with a happy end for everyone. I could call myself habituated but that wouldn't be a success story. But I think most people on here understand tinnitus can be debilitating and that someone's attitude, in that case, can only change how a person reacts to these limitations but not overcome them (completely).
 
There are definitely habituation stories that are real. I don't think these stories are being questioned here. There are also people who say they have severe tinnitus and they're still living lives they find worth living. However, I have yet to meet someone with severe, or perhaps I should say catastrophic, tinnitus whose life wasn't permanently altered. I've also seen users on here saying one minute they're not letting tinnitus stop them and then mention things they won't do due to their tinnitus anymore or being utterly exhausted the next minute. This is not addressed at anyone specifically, just a theme I've noticed.

Everyone should be allowed to share their experience, I completely agree with Ed on that. If someone can live well despite having tinnitus, they're allowed to tell their story and to motivate other people. But this regularly turns into 'everyone just needs to change their attitude and their brain will tune out the tinnitus'. I'm not saying this happens every time but it still happens too often.

Also, many people, when they're struggling with recent onset tinnitus or a spike, want to be told that they'll be okay again. We shouldn't lie to these people and tell them that their tinnitus will never bother them again but scaring them doesn't help either. In the beginning, support is essential. If their situation doesn't improve in months or years, then a more honest discussion would be appropriate. This doesn't mean that severe tinnitus should be sugar-coated.

But I also agree with other users that severe-catastrophic sufferers are often told that a change of heart would turn their debilitating conditions into mere annoyances. I'll never forget reading "They forget that the mental struggle is really what keeps T intrusive and loud" on here by a veteran who says they have severe tinnitus. A resilient mindset helps me to cope but it doesn't negate the impacts of t/h.

Habituation doesn't come with a happy end for everyone. I could call myself habituated but that wouldn't be a success story. But I think most people on here understand tinnitus can be debilitating and that someone's attitude, in that case, can only change how a person reacts to these limitations and not break them (completely).

I agree, Autumnly. I could easily emphasise my losses and mourn them forever, but I chose to reframe my life and look at all the great things I still have. Sounds mega cheesy, but it's true in my case.

For me personally, the more I fought against it, and destested it, the more it ruled over me and messed my head up. This could still be the case one day in the near future; at any point I could be back to square one which is why a cure is needed. It still hangs around my neck as a potential threat even though I don't think about it on a daily basis.
 
Wow!!! You are one seriously messed up dude if you kill yourself based on what some members say on a support forum. Is this a millennial thing?
Maybe true, but when you're in a state of utter desperation, being driven insane by torture and the prospect of your life being totally ruined, it is understandable. Especially if you were already prone to emotional instability. I just try and have understanding. Some people are in fact very weak.
 
The main thing is the intrusiveness....volume is secondary and it is not that accurate means of assessment from what I'm able to gather.
At the end of the day, what matters the most is how this affects your life.
But this kind of stuff would be way too hard to convey to the average reader out there, whom most likely never even heard of tinnitus.
It really needs to be kept as simple as possible minus all the possible variations.
I think for the general public keeping it simple would be describing it in terms of the symptoms rather than the emotion those symptoms elicit. Beyond mental health, what other conditions diagnose severity by emotional reaction? It's easier for the public to clump our experience as a mental health concern if we're using those factors as the only measure.

When I want someone to emphasize with my tinnitus pain, I do not describe my emotional reaction. I describe the symptoms: the volume, the unrelenting noise, and the further complications of hearing loss and hyperacusis. That alone generates sympathy. People recognize those symptoms as awful. People even recognize that the soft ringing they hear only when they plug their ears is not comparable to what I hear all day, every day. That the fleeting tinnitus they might occasionally experience isn't the same as dealing with it every day.

When we talk only in terms of emotional response, it's easier for others to shrug it off. Maybe because our possible emotional responses — quitting a job, avoiding social situations, feeling despair — are not symptoms isolated to tinnitus sufferers.

But a constant loud noise that never leaves, that permeates everything we do? That seems to invade every recess of our brain? Those painful symptoms are unfortunately ours alone.
 
I think for the general public keeping it simple would be describing it in terms of the symptoms rather than the emotion those symptoms elicit. Beyond mental health, what other conditions diagnose severity by emotional reaction? It's easier for the public to clump our experience as a mental health concern if we're using those factors as the only measure.

When I want someone to emphasize with my tinnitus pain, I do not describe my emotional reaction. I describe the symptoms: the volume, the unrelenting noise, and the further complications of hearing loss and hyperacusis. That alone generates sympathy. People recognize those symptoms as awful. People even recognize that the soft ringing they hear only when they plug their ears is not comparable to what I hear all day, every day. That the fleeting tinnitus they might occasionally experience isn't the same as dealing with it every day.

When we talk only in terms of emotional response, it's easier for others to shrug it off. Maybe because our possible emotional responses — quitting a job, avoiding social situations, feeling despair — are not symptoms isolated to tinnitus sufferers.

But a constant loud noise that never leaves, that permeates everything we do? That seems to invade every recess of our brain? Those painful symptoms are unfortunately ours alone.
If I understand your post correctly, you are suggesting to focus on the symptoms and leave the emotional distress out.
I'm afraid this would only water down and further complicate the message.

You see, your average person out there has no idea what a "little ear ringing" can do to them and how it will impact their day to day life...
If anything, this needs to be highlighted.
Tinnitus is basically a brutal torture by sound, which is used by many agencies over the world to break people.

My scale is meant to inform people about what Tinnitus does, and how they can expect their life to be impacted at different levels (and that there actually are different levels)...
This is what matters the most at the end of the day.
Not to mention that a "symptoms only" scale would most likely trigger another 20 pages of bickering about what symptoms should be assigned to which category..etc

If there is anything I would change in my original post, it would be highlighting the fact, that the sound we hear is as real as the keyboard on which I'm typing this.
That should take care of any "mental illness" speculations.

But feel free to forward your own idea of a scale for a peer review and let's go from there?
 
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Wow!!! You are one seriously messed up dude if you kill yourself based on what some members say on a support forum. Is this a millennial thing?

Please read my post on page 3. But to address this simply:

Suicide rates have increased in all age groups since 1999. Today, in an internet ruled world, more middle aged people are killing themselves.

A person does not just kill themselves because of an internet post. They kill themselves because they have a lot of problems and anguish already going on. The cheap, readily available amount of human interaction on the internet that is more often flavored negative energy, merely bursts that dam.

Millennial thing? That's a rather low effort thing to say. I suppose millennials do have a stereotype of getting offended easily, just like how you were offended very easily when @Ed209 mentioned his dad in that other thread. From the perspective of a non-participant in that thread, you had to have gone through some mental gymnastics to take that personally. It was painfully obvious to me just how irrational your response was. Your grudge against Ed209 is pointless, and if I had to guess, something entirely fueled by the sheer terror of your own tinnitus. Only someone so tortured could possibly say the things you did. I truly am sorry that you suffer so. Just please, don't take it out on other members.
 
Thanks
Well it looks like a misunderstanding on both sides.
If I upset you then I am sorry Kelp.
I will try to do better.
Dave x
Thanks! I will try better as well. Sorry if I offended you
 
Folks - I think we all have to try to keep 'a weather eye' on our tongue.
I know I do.
Sometimes I could rip the bloody thing out!

Our disgruntlement comes I am sure from a feeling of injustice.
There is no question that life has treated us very badly.
This is a truly horrible condition.
Incomparable I would say, to anything else.
I think it is highly commendable that we pretty well all spend most of our time trying to support and help each other.
 
As @Ed209 has correctly pointed out we indeed all are on the same ship.
I hope nobody minds too much if I offer another analogy:

The ship is slowly sinking and some of us are trying to figure out a way to send an SOS message to be rescued.

But some don't like this approach, because they claim that it could panic people and this could drive them to jump overboard.
This is why they prefer to have the house band to keep playing till the very last minute instead, while pretending that everything is just great.

I have a feeling that this had already happened to another boat once upon a time...the results were not that good.

This is a very perceptive analogy @Wolfears of what is happening and is very relevant to the BTA and ATA situation too.

They are both small boats aimlessly floating about in rough seas and occasionally sending out the odd dampened down message about a 'struggling' crew but never actually having the balls to full on launch the lifeboats, fire off all the flares and send out a major SOS night and day for help from every boat and rescue team that will listen.
 
This is a very perceptive analogy @Wolfears of what is happening and is very relevant to the BTA and ATA situation too.

They are both small boats aimlessly floating about in rough seas and occasionally sending out the odd dampened down message about a 'struggling' crew but never actually having the balls to full on launch the lifeboats, fire off all the flares and send out a major SOS night and day for help from every boat and rescue team that will listen.

Thank you for the kind words.
There is also another rather eerie Titanic paralell here...
The willingness to alienate and sacrifice the lower class citizens (in our case the "incessant whiners", whom are not buying into habituation schemes) for their own gains and misguided agendas.
 
Please read my post on page 3. But to address this simply:

Suicide rates have increased in all age groups since 1999. Today, in an internet ruled world, more middle aged people are killing themselves.

A person does not just kill themselves because of an internet post. They kill themselves because they have a lot of problems and anguish already going on. The cheap, readily available amount of human interaction on the internet that is more often flavored negative energy, merely bursts that dam.

Millennial thing? That's a rather low effort thing to say. I suppose millennials do have a stereotype of getting offended easily, just like how you were offended very easily when @Ed209 mentioned his dad in that other thread. From the perspective of a non-participant in that thread, you had to have gone through some mental gymnastics to take that personally. It was painfully obvious to me just how irrational your response was. Your grudge against Ed209 is pointless, and if I had to guess, something entirely fueled by the sheer terror of your own tinnitus. Only someone so tortured could possibly say the things you did. I truly am sorry that you suffer so. Just please, don't take it out on other members.
I don't take it personally, I honestly don't give a shit, he annoys me, and has driven other members out. If you kill yourself after coming online due to not enough support or whatever, you're screwed, you should probably not have access to the internet, mom should put some filters on at the very least.
 
Totally understandable and the exact reason the habituation myth exists

Let me explain...... If my T dropped to a lesser level, I would wait several months before even mentioning it here..... But in the real world I would never ever utter it to a soul because I know how callous this monster is and the next day I could be back to severe or worse and people would completely lose faith in my mental state. 'Oh him and his T one minute he's fine the next he wants to die. It's all in his head!'

This I believe is the reason people stick to the 'habituation' story. Telling people you actually got better or the volume lessened is too much of a risk. Better to say, 'oh it's bad as ever but I'm getting used to it.'

That is habituation debunked in a nutshell and even though they won't admit it, will strike a chord with all of the 'Ive beaten loud T' brigade.
Yes absolutely.
 
I don't take it personally, I honestly don't give a shit, he annoys me, and has driven other members out. If you kill yourself after coming online due to not enough support or whatever, you're screwed, you should probably not have access to the internet, mom should put some filters on at the very least.


Telis, I never take anything personally and I couldn't care less about comments about me, but taking the piss out of my sick father is abhorrent and shows way more about your character than it does mine. And don't give it the "I never saw it nonsense": your entire CIA post was referencing it. Believe me, when I saw that I was about to tear you a new one, but I held back because of what you're going through. However, the word offended doesn't even come into it; what you wrote was just sick.

I've never said anything personal to you in my entire time on here, yet you have always been a dick towards me, so nothing has changed there. I put it down to your suffering which is why I never replied to those posts in the first place; I let it slide. But then you make another asshole comment so I figure that actually, you're probably just an asshhole. At the height of my suffering I still wouldn't make dickhead posts towards others like you do. Maybe it's a millennial thing?

You need to stop whining and being offended when others post about their experiences. You're like a child.

And whatever your reply is, I don't care. I've heard it all before.
 

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