Tinnitus Classification for the General Public

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.

 

What determines the level? Volume? Emotional response? Does it factor in other contributing conditions such as hearing loss or hyperacusis?

 

Yep. This post was necessary.

 

I would say the level of intrusiveness is or should be the determining factor.
Each of us here instinctively know what level we are at (roughly)

I did not even attempt to cover hyperacusis, because I was trying to keep it as short and to the point as possible.

Before people out there can even grasp the whole concept of further complicating conditions such as hyperacusis, they need to understand tinnitus first.
Baby steps I guess.

 

I’m very interested in how you would determine intrusiveness.

 

Well, for example if you are unable to sleep, relax or focus because of tinnitus, I would say that the intrusiveness is pretty high and go from there.

Some people are not as affected (usually in the milder categories) and some are affected more (usually the more severe cases).

You can use that as a good starting point of assessment.

There are also some tinnitus assessment guides out there..
I had also seen several being presented here...they usually pose bunch of questions with the corresponding point ranking, which gets added up at the end..
Don't have the links but maybe someone could post one.

Of course you can take any part of my post and split hairs, but remember it is supposed to be very general guide to begin with (as I had already stared above).

If the average reader only takes in the fact that there are indeed different levels of tinnitus, it is already a big win.

 

If its audible over TV at a normal level, it's safe to say you will not be able to sleep well. Only thing this means it's not mild.

 

I can hear it alongside the tv, but I generally sleep well. It is not as loud as the tv though but it's still audible.

If I play pink noise from my iPhone on volume level 3 it will mask it.

 

Mine is audible over a TV at normal level. It’s audible over everything, including running water in a shower. I had trouble sleeping at the beginning, but I have no trouble sleeping now.

I have a mild response now, but the actual volume and my hearing loss are not mild. A scale based only on emotional response would fail to convey that to anyone.

 

I'm very happy that you have no problem with this now. Otherwise it sounds horrible.

 

Yes it is indeed very likely, that a scale like that would fail convey your particular situation.

But if we want to convey a message to the average reader on the outside world, considering the average attention span, it needs to be as simple as possible and it is best to stick to bullet points.

The problem is, that right now the tinnitus community is split within itself and the outside is hearing mixed messages at best.

Anything from:
"I can't take it anymore" to "Will be just fine"

If we can all agree on some kind of a unified scale, every side gets to be represented and a comprehensive message can actually get out.

This is vital, if we ever need someone to take us seriously...and we do.
Letting the world know that there actually are different levels is a good, solid start.

 

I get that people can have a moderate-to-severe case and adapt, but I think it's too much of a torture for anyone to have to deal with. And then to be told "well you have to live with it". If my tinnitus had not subsided to how it is now, I don't know if I would have habituated.

 

It’s not just the tinnitus community that is divided like this. Even more bizarrely individual sufferers have some sort of split personality disorder regarding T. One week chest beating and habituation trumpeting about the loud T that no longer bothers them and the next crying about being in hell.

How can these people be so frankly stupid and nieve?!? The damage this confusing mixed message does to the urgency of a cure is huge.

I’m fairly sure that without this ‘im stronger than this noise’ crowing and belittling of other sufferers none of us would be dealing with this now. All these devices and drugs currently being developed would be here already.

 

I only hope that a real treatment is coming. I'm hearing that the US military is also working on a tinnitus cure, since so many veterans have this condition. Tinnitus is just something else....

 

Yes I have also noticed the chest pounding/crying routine with some individuals.
The only somewhat logical explanation would be, that maybe it is some kind of a coping mechanism at play here.

Pounding their chest and telling us how nicely they are handling their situation could be some kind of a make believe outlet along the lines of:

"If I write this down, maybe it will become the truth" kind of attempt at pulling a Jedi mind trick on themselves perhaps?

 

Thank you!

 

Perhaps. But as you and I both know all they’re really doing is propping up the bullshit coping industry who point to their chest beating posts as ‘proof’ T is all in the mind and then dismiss their suicidal posts as ‘oh yeah that guy has a mental problem’.

And we make is so fucking easy for them! That’s the sad thing. Some of us our own worst enemies. Not naming names but one guy on here got in to a full on spat with @Wolfears @Jazzer and me about how he’s conquered his loud T and it no longer bothers him and won’t be a big deal in any of our lives in a few years when ‘other problems’ will massively overshadow it.

Guess what?!? This same guy - who really should know better given his job- is back in hell and suffering horribly.

I don’t want to see this guy suffer...or anyone. I’m not gloating. I just ask that please think twice about the damaging effects of telling people you have ‘conquered’ T and it’s no longer a big deal for you.

I know you think you’re encouraging people but you’re not. Do you think your supposed victory is going to stop so and so from killing themselves?......No.

All you’re doing is sending out completely the wrong message to the world. That T is all in your head, it’s easy to ignore and we don’t need a cure.

 

Even worse are those who whine incessantly and uselessly and do nothing about it. How can they be so nieve!!?? I'm fairly sure that without this 'I have no control over this noise' crowd we would have a supportive community that would move people from tinnitus sufferer to at least tinnitus 'tolerable'. All of these people would be able to live happy and fruitful lives.

 

I simply do not understand what your point is supposed to be.
Perhaps you could make it clearer?

 

Sure. Bam made a ignorant reference to tinnitus culture and created a faction. Calling out people who have thought they were successful at conquering the noise, only to be knocked the next day. This is a logical fallacy. We know that not all who "conquer Tinnitus in their mind, go on to fail the next day and make us all look worse". This is typically used in a straw man style of debate. He then said this faction of people is actual doing damage to people in his faction (similar style of thinking to people that are inherently racist) If I could draw you a venn diagram it would be easier.

In his illogical fallacy he segmented the population in such a way that it turned the mirror on himself and caused his statement to come off as a naive and hypocritical.

I rephrased my statement by pointing out the inverse of his statement, using most of his words, to mockingly say and do the same thing about another tinnitus population: those people who believe you can weather the tinnitus storm and move from a place of panic and struggle to one where you can move on with your life regardless of the noise and its existence.

With my point being: some people come here looking for help and support. And they want to hear they can control it with their mind. Maybe YOU don't like it. But that sort of self control speaks to me. And who are YOU to tell me what works better and what doesn't?

 

I hope you feel great about your little jab attempt at Bam's message.
It is exactly this kind of ignorance, that reinforces the beliefs that if someone suffers, it must be their fault or that they are just bunch of whiners.

What exactly do you suggest that the "whiners" as you put it do about it?!
They are far too incapacitated to mount any kind of "action"...they are mostly in a very fragile, suicidal mindset and are just trying to survive the day.

Aside from spreading the message of urgently needing help and hoping to get through to someone out there, there is not much that they can do..

But it is still far better than sticking your head in the sand and belittling those who have the audacity to speak up against this idiotic status quo and against the appologist morons, who further reinforce it.

 

@kelpiemsp

Would you mind very much if I dealt with another matter first.
When I mentioned some weeks back that my tinnitus was round about 60 dbs and hateful, you told me that you would regard 60 dbs as a luxuary, as yours was 80 dbs.

Now I read in ‘your story’ post that your Tinnitus is 15 dbs.

So which is it please ???

And why did you respond to me with deliberately spiteful and demeaning tones?

 

Brilliant - Simply Brilliant!

 

I totally understand what you’re saying and agree that medical professionals and the general public need to be aware that there are different intensity levels of tinnitus and that it is a serious condition. However, your guide is drastically simplifying what is an extremely complex condition, and it could never be used professionally.

I really sympathise with your case, Bam, and that of all other sufferers, but you cannot just censor positive stories from existence. That is equally as bad as what you’re suggesting. There exists a middle ground that takes everything into account. If newcomers were told that there’s no hope for them and that most people kill themselves or suffer forever, we would be showing them what tinnitus is like through a very biased lens, rather than an accurate one. This works both ways. If we censored all the worst cases then people would generally look and think “this tinnitus thing ain’t no big deal.”

What we need is the truth. Nothing more, nothing less. There is no need to sensationalise it either way.

I wasn’t going to post this, as last time I replied, I got a ton of abuse calling me a troll and all sorts of other stuff. If we can’t speak openly then what’s the point? It becomes a dictatorship instead.

 

What does any of that twoddle even mean?!

All i happened to say in plain language is please don’t tell the world that T is no big deal because it is a f***ing big deal and if you think you’re helping people by claiming some temporary victory over it, you’re not. All you’re doing is pushing them further in to despair as to why they can’t ‘habituate’ which as we all know is a state that is pure fantasy when it comes to severe or worsening T.

Also it’s worth bearing in mind that many who claim a victory over T or are supposedly living a normal life are on all kinds of sleeping meds, benzos and other poisonous bullshit......That’s not a victory it’s a capitulation.

 

That was before I knew how to measure it properly and before I had my minimum masking level professionally measured.

It was around 85db to mask before I began clinical trials.

Because you have been incredibly arrogant and demeaning to me when I tried to tell you how much I suffered myself.

 

What are people who can't tune the sound out supposed to do then. I mean, yes it's nice to not divide people within this community, but if there are people committing suicide over tinnitus, I doubt it's because of lack of character or something.
IDK, but god help us all if we have severe setbacks with this condition.

 

Well at least you have admitted that you are not that knowledgeable.
Could you please give me an example of my ‘incredible arrogance?’

 

I don’t take any meds.

 

No I don’t. I don’t feel bad for pointing out when someone marginalizes a segment of people. I will call out some one when they marginalize another group. Which is exactly what you yourself are doing. Real sufferers like me need to be told it’s in your head because frankly that is how I interact and interpret my world. So step off.