The Addictive Nature of Tinnitus Talk...

[Jazzer]

What is the attraction of this website?
Really good news is pretty well non-existent.
There is little to actually cheer us up.
Real strides in research? No....not yet.
So why do we come here at all?

Our families and friends would like nothing more than to 'make us better.'
Wouldn't they absolutely love that.
No longer any need to worry about us.
But both we, and they, know they can't.
Even our doctors can't make us better.
We are left with the hope of better management, and hopefully, less anxiety.
Talking to outsiders, normal people, is so very frustrating because, to a man, they are all totally ignorant of what the experience of Tinnitus is, and what we go through on a daily basis.
If we complain about a certain noise, they will often say "but this noise isn't even loud."
No, not to normal healthy ears it isn't, but to ears with a damaged cochlea, it may be excruciating.
They simply can not know what our experience is.

I come on here to talk to other sufferers, who are knowledgeable, who understand, and who naturally remove the necessity for me to explain my self, and my predicament.
I come on here for companionship and support.
I am very glad this website exists.
It is very important not to live here,
but tidbits of help and advice are often very comforting.
Well that's quite enough rambling for today.
Jazzer x

 

[Bill Bauer]

The addictive nature of Tinnitus Talk

I certainly got addicted.

 

[Lost life]

Me too... because I'm addicted to the idea of being cured 24/7 and I feel like something in here can make that happen, I keep coming back as if I missed something.

I know that sounds sick but what else do I have? In my real world I barely exist any more.

 

[Red]

Loved ones cannot understand, doctors cannot understand...
Even those who try to imagine what it is like to be in our shoes do not.
You have to be right here and already in those shoes. That is the only way and while there are many of us out there we are lost in a sea of billions of people.

It simply is not productive to complain to loved ones anyway. They get tired of it. The only real place to talk and not feel alone is here.

 

[DebInAustralia]

and make sure you do keep coming back to vent when you need to..

there's always someone here who will listen and understand what you're going through..

 

[Jazzer]

Me too... because I'm addicted to the idea of being cured 24/7 and I feel like something in here can make that happen, I keep coming back as if I missed something.

I know that sounds sick but what else do I have? In my real world I barely exist any more.

Hi @Lost life - @Red - @DebInAustralia - @Bill Bauer - this place is a godsend - we all suffer like hell, yet we all come on here to keep each other company, to encourage each other, to do our best to try to pick each other up, despite our own suffering.
A place where we are not looked down on or criticised - but where we are recognised and accepted.
Love to everybody,

Jazzer xx

 

[TheDanishGirl]

Me too... because I'm addicted to the idea of being cured 24/7 and I feel like something in here can make that happen, I keep coming back as if I missed something.

I know that sounds sick but what else do I have? In my real world I barely exist any more.

Same here! I come here almost every day mainly to check the research forum, and hoping a member will soon update with a breakthrough.

I'm clinging on to a hope of being cured one day. I still can't face the fact of having to deal with T for the rest of my life.

 

[Contrast]

Me too... because I'm addicted to the idea of being cured 24/7 and I feel like something in here can make that happen, I keep coming back as if I missed something.

I know that sounds sick but what else do I have? In my real world I barely exist any more.

Same I'm cure driven in hopes of scientific research giving me a second chance at hearing and silence.
In the mean time my life is going to be super miserable.

 

[John_415]

What is the attraction of this website?
Really good news is pretty well non-existent.
There is little to actually cheer us up.
Real strides in research? No....not yet.
So why do we come here at all?

Our families and friends would like nothing more than to 'make us better.'
Wouldn't they absolutely love that.
No longer any need to worry about us.
But both we, and they, know they can't.
Even our doctors can't make us better.
We are left with the hope of better management, and hopefully, less anxiety.
Talking to outsiders, normal people, is so very frustrating because, to a man, they are all totally ignorant of what the experience of Tinnitus is, and what we go through on a daily basis.
If we complain about a certain noise, they will often say "but this noise isn't even loud."
No, not to normal healthy ears it isn't, but to ears with a damaged cochlea, it may be excruciating.
They simply can not know what our experience is.

I come on here to talk to other sufferers, who are knowledgeable, who understand, and who naturally remove the necessity for me to explain my self, and my predicament.
I come on here for companionship and support.
I am very glad this website exists.
It is very important not to live here,
but tidbits of help and advice are often very comforting.
Well that's quite enough rambling for today.
Jazzer x

I like that this site has no ads, you don't have to wade trough tons of them. You can also objectively look at what works and what does not. These things in itself are quite rare on a website.

 

[Jack Sparrow]

Well Susan Shore news gave me lots of hope

I come here because no one, not even my bastard ENT, or loser family doctor, understands.

You all understand.

Tinnitus Talk understand. Now for another night of no sleep.

~Captain Jack

 

[glynis]

@Jack Sparrow ,
Please try not use bad language like bas....d
as the forum is used by young teenagers and lowers the tone of threads.
Love glynis x

 

[Bill Bauer]

Now for another night of no sleep.

Have you tried sound enrichment?

Amitriptyline is non-addictive and it worked for me. It didn't make me feel drowsy the next morning.

 

[Jake007]

I am very glad this website exists.

I am too, it saved me from becoming addicted and becoming dependent from benzo and sleeping pills. I would have it very much worse than I already do if it wasn't for this forum.

 

[Luman]

One thing I do notice is that most members move on, probably because they've habituated. The members who have habituated and come back to help the new people, or those who have been around but still having problems, are very valuable and special.

 

[Starthrower]

forum is used by young teenagers

Even though I do not post much here and come to help out if I can - I have taken notice of how many young people are now posting about tinnitus.

Back when I joined a "forum" in 2002 things were so different. Most people were probably over 25 or so? I never remember any teenagers posting. Maybe once in a while one would post but not stay on the board for long.

What saddens me is how so many are desperate and posting about not being able to live with tinnitus. Do they listen to those of us who are a bit older? Sometimes they seem to link up with others their own ages. Hopefully, they find friendships and ways to talk with each other.

But wow. So much suicidal thinking with the young people. Is that a reflection of the age group in general? And why so many new young tinnitus sufferers? Is it because of the use of computers and earbuds and cell phones and digital sounds?

Have they ever been without a cell phone or computer? I don't mean this to be judgmental at all. Just my observations over the past years.

Back then I was so connected to the tinnitus support via boards. But there were really only two at that time. And there was so much drama and fighting going on. Mostly, because of...the individual who still tries dominate the tinnitus internet world. Which is one reason I left all tinnitus support for years.

That and getting too close and involved and drawn into the drama wars. It still haunts me at times.
Does this still go on? I don't visit the site very often.

For me the problem was and may be - new tinnitus sufferers - are in such a bad place. I remember reading some of the bad treads when I was so new and in pain. It was hard to ignore them back then. But, with time I became close with other posters. And we had and I still have a few - a close friendships.

I really needed the support board back then (2002). But a person was intent on making people feel - guilt - if one had anything to do with another board. And when one is new to this we are so weakened mentally and physically.
The added guilt and drama added to the distress.

Today, I find it hard to go back to that time.

Tinnitus Talk and Tinnitus Hub are going to be very instrumental for the different tinnitus awareness programs going on with organizations. I have been watching now how hard the creators of this have worked and successfully held on during really hard times. They did not give up. They did not abandon the support board or close it down. In fact they are really growing strong! I admire this.

There is way too much back scene judging about Tinnitus Talk. The important factor remains. Are people getting help and information? Is this helping the younger people? I hope so. All tinnitus "boards" have negative stuff - and a lot of positive stuff.

I do not know the facebook board. By personal necessity I am not on any type of social media in any way shape or form. So this keeps me from the facebook, tweeting and other internet media aspects.

 

[Tex]

I can't say it is addictive. I check in to see if there is any new research done toward a cure or useful therapy.

 

[Champ]

Same here! I come here almost every day mainly to check the research forum, and hoping a member will soon update with a breakthrough.

I'm clinging on to a hope of being cured one day. I still can't face the fact of having to deal with T for the rest of my life.

The amount of research in tinnitus is extraordinarily advanced from the past 40 years. I'm not saying it's a slam dunk we'll live to see a cure, but the odds are really high that a real treatment path for chronic and acute tinnitus comes out in the next 10 years.

 

[TheDanishGirl]

The amount of research in tinnitus is extraordinarily advanced from the past 40 years. I'm not saying it's a slam dunk we'll live to see a cure, but the odds are really high that a real treatment path for chronic and acute tinnitus comes out in the next 10 years.

I really do hope you are right

 

[lapidus]

I'm only here for the research sections, something other support forums lack. I like that TinnitusTalk takes pride in being a scientific community unlike other support forums where a lethargic, almost anti-research mindset is the norm.

 

[Contrast]

I'm only here for the research sections, something other support forums lack. I like that TinnitusTalk takes pride in being a scientific community unlike other support forums where a lethargic, almost anti-research mindset is the norm.

I'm not gonna say any names but there were a few people here that actually got a bit aggro when I mentioned science bringing us closer to cure. I don't know why?

 

[lapidus]

I'm not gonna say any names but there were a few people here that actually got a bit aggro when I mentioned science bringing us closer to cure. I don't know why?

That mindset probably exists everywhere but TT (especially the research sections) has less of it. Compared to other messageboards, TT is much more proactive in following and discussing current research from a more professional point of view and in activating the T and H community to actually do something. Users like @Aaron123 @attheedgeofscience @lymebite and @japongus are heroes in my book.

 

[Alex F]

As a newbie, the thing I have found most useful about TT is that members here write about different people/organisations who turn out to be frauds and what treatments do or don't help...

knowing who is fraudulent, offering false hope/taking advantage of people's suffering is VERY useful to those new to navigating the world of T.

Or even if someone is not malicious, explaining what works and what doesn't.

Personally I can't fathom scamming those in pain and distress, but then I have conscience... clearly many people don't.

 

[Jcb]

I'm new to T and this site has been so helpful especially for my mental health. I log in most days to check the success forum and science just to see if there is any news on breakthroughs.

I can see why this could get addictive..... it's nice to see people points of views and advice on different issue regarding T which helps me a lot.
I like the thought of having somewhere to go when I'm having a bad day as as much as I love my partner and family etc they don't really get where I'm coming from even though they are so supportive.

On a side note some of the threads can be drama filled and serve a lot of T ( T as in truth) and shade.

 

[Contrast]

Yes it's addictive allright especially when the research threads get updated with something promising!

 

[SeaJay]

What is the attraction of this website?.......

.........I am very glad this website exists.
It is very important not to live here,
but tidbits of help and advice are often very comforting.
Well that's quite enough rambling for today.
Jazzer x

A good topic and posting.

I don't come here too often. Been a member for maybe 2 years and didn't start posting until a few days ago. I'd occasionally just scan the forum for any "tidbits of help" as you say. I think I've tried most everything that had any hope of helping my T&H.

I find my T&H to be quite severe and progressing for the worse as the years pass. What I try to avoid is reading too much about people who are obviously in worse shape than me. I try not to dwell on how things may play out in my future as they have for others. If I remember correctly, the ATA's Tinnitus Today magazine cautioned sufferers not to spend too much time on tinnitus forums as it can be a deterrent to habituation. That isn't meant to disparage the forum as I think it's a great resource.

With that said, I'll probably visit more often in the future for the reasons you mention.

 

[Bill Bauer]

What is the attraction of this website?

I feel passionate about a small number of topics, tinnitus management being one of these topics.

 

[Jazzer]

I feel passionate about a small number of topics, tinnitus management being one of these topics.

I agree @Bill Bauer.
With no real cure prospects, and no actual treatments, management towards eventual habituation has to be the essential way forward.
Yes - of course - we all want a cure, so much.
But in the meantime we need to get through the remainder of today, tomorrow and the day after.
We absolutely must develop strategies to sustain ourselves the best way we can.
I have seen some subscribers, avidly reading the success stories, to weed out the habituators, as if their success is meaningless, and they are therefore imposters.
Habituation definitely represents a success story.
Developing management practices is not defeatist, it is common sense, and crucial.

I also think dwelling on the research pages is a waste of time; a bit like being cast adrift on a raft in the middle of the ocean, and scouring the horizon for a palm tree.
Futile, and unnecessary.
The moment a successful treatment is discovered, it will be plastered all over the news channels.
Well - these are just a few of my rambling thoughts.
Jazzer x

 

[Bill Bauer]

I have seen some subscribers, avidly reading the success stories, to weed out the habituators, as if their success is meaningless, and they are therefore imposters.

What might happen in some instances is that a person new to T sees a new post in the Success forum, and anticipates reading about T spontaneously going away. When they see that the post is about habituation, they feel like they had been let down.

If we were to have a separate "habituation success" forum, OR if people where to add the word "habituation" to the title of their thread in that success forum, we would go a long way towards solving this problem.

Habituation definitely represents a success story.

I agree.

 

[Starthrower]

What might happen in some instances is that a person new to T sees a new post in the Success forum, and anticipates reading about T spontaneously going away. When they see that the post is about habituation, they feel like they had been let down.

I remember way back when...being on a support board for the very first time ever and being so miserable and tired and mentally worn down I would feel pissed off reading about people who "got used to it". I felt like there was something wrong with ME because I could not imagine ever being in that position.

 

[Markku]

I will take on this project. I'll comb through all the 608 success story threads during the next week and mark each thread with a prefix/tag that can be used to filter the threads.

What about threads that have elements of both reduction in loudness and habituation? Should a thread not have the habituation tag at all if there is any kind of reduction in loudness reported?

Ideally the non-habituation threads would have a tag too so that they can be filtered to be visible (in turn habituation threads hidden).

What short phrase would be most descriptive for those?

Thanks for any input.

@Bill Bauer @Starthrower