My Posting Place

[JohnAdams]

Duh.

My dad ran off when I was only 1 to do his own thing and my mom wasn't ready for how savage the world as a single mother was. The school system coerced her into putting my on Ritalin which ruined my childhood, and my dad married a real witch that was a cult leader and they tried to brainwash me into new age magic-y nonsense. All I can do is try and be a good husband and father to my son now and make sure he doesn't turn out like me.

Basically, if you run off on your family/children you are big reason that the world is so screwed up. I am a testament to that.

Damn, my proofreading skills are abysmal.

 

[JohnAdams]

John will you promise to continue hosting the scam archives long after Im gone?

Sure.

 

[Matty1996]

Are you saying that a volume level that would never allow you to stop caring, no matter how long you wait, doesn't exist?

I'm saying that in my personal experience, my tinnitus, even at its worst (hearing it over the shower, conversations, music etc) has been something I've been able to cope with and adjust to and that is all. My point was that a person's understanding of and experience with tinnitus should not be assumed simply because that person does not express distress, like our resident know-it-all so condescendingly did with me.

You keep missing the point. If someone says that they have been able to habituate, then that by itself provides us with information about how loud they perceive their tinnitus to be.

Or perhaps they can simply cope better. If we accept that tinnitus can vary in loudness and annoyance in different people, the same is true of peoples ability to cope, habituate, tolerate pain etc. For instance, I'm sure there were countless WWI and WWII veterans that suffered truly debilitating tinnitus and never complained about it as the science simply wasn't there to help them and life had to go on. While there are others, no doubt, with less intrusive or more manageable cases of tinnitus that find it a major struggle. I'm not saying they are wrong for doing so either or that they should just man up or something. People just have different thresholds for dealing with this shit.

This conversation was greatly derailed anyhow, the initial point was that you don't need CBT to habituate and suggesting it as a treatment is somewhat of an insult to the most severely afflicted. Habituation is alright, but its still not a cure/treatment for tinnitus, which should be the main goal for the patient community as a whole, habituated or not.

 

[linearb]

Why are you not nameing names?

he doesn't want me to feel bad

it's okay, @Ed209 -- you can tell them all about how every account here besides yours and mine, is actually just one of my sockpupptet accounts -- all these other people already know it, because they're me

srsly there are some things that there's no real good reason to name specific names or point specific fingers on

Or perhaps they can simply cope better. If we accept that tinnitus can vary in loudness and annoyance in different people, the same is true of peoples ability to cope, habituate, tolerate pain etc.

well, this is the age old debate on here, and ultimately it's sort of an unanswerable question because we can't ever actually experience someone else's.... experience of the world. Your umwelt is yours alone.

From the perspective of what's equivocal neurological fact, tinnitus loudness and tinnitus distress have different neurological correlates, which are related but which exhibit wide variance between individuals. There are a number of published imaging studies on this. More or less, in general louder and especially higher frequency tinnitus is associated with more distress -- but for any given frequency and loudness as measured by objective volume matching (minus hearing loss at that frequency, of course), some individuals will exhibit a high distress score, even for quiet, low-frequency tinnitus, and some individuals will exhibit a low degree of distress even for loud, high-frequency tinnitus.

The thing is, even is we accept all that (which I certainly do) -- none of this establishes how possible it is for a "high distress" person to become a "low distress" person through sheer force of will.

My experiences so far with meditation and related practices have led me to believe that change is possible to a degree -- but we're all constrained by the physical reality of our bodies.

Fundamentally, @Matty1996 -- Bill said

If someone says that they have been able to habituate, then that by itself provides us with information about how loud they perceive their tinnitus to be.

Some people believe this strongly; I would say it does not actually provide us with any information other than "this is a person who says they have been able to habituate".

 

[linearb]

I've never heard of anyone doing ACT for tinnitus.

CBT is the prevalent one.

There are two very, very, VERY different things you find on the internet when you search "CBT", depending on your safesearch settings.

Both have been somewhat effective in taking my mind off tinnitus, one is much more effective than the other but has some painful downsides

 

[Barbara777]

VERY different things you find on the internet when you search "CBT", depending on your safesearch settings.

Gee I wish you hadn't told me to look...!

 

[linearb]

Gee I wish you hadn't told me to look...!

one of my favorite things to do when friends start conversations about CBT is to participate fully in the conversation but assuming that we're actually talking about Cock & Ball Torture.

At some point the conversation stops making sense to the other person and runs totally off the rails.

Yes, I have multiple (2-3) friends that have spontaneously started conversations about CBT. I guess I know too many psy / neuro / meditation nerds.

 

[Contrast]

if you run off on your family/children you are big reason that the world is so screwed up. I am a testament to that.

The amount of parental disconnect I had since a teenager was unreal.

I am convinced rich people with right wing views want poor families to be uneducated and disciplined to obey their system as well as putting them under the illusion that they are on the same team. Poor people supporting republicans show that pretendism as if the rich give a fuck about them.

 

[Manny]

Well - up and down like we all are I guess.
It seems to me that there are two major problems with severe Tinnitus.

*Coping with the eternal noise.
*Coping with the disappointment over what this wretched thing has done to the course of what were clearly beautiful lives.

When one doesn't get you - the other one does.

How about you Manny?
Have you been involved with Lenire yet?

Indeed, Dave. Well said.
No - not yet.

 

[Bill Bauer]

Or perhaps they can simply cope better.

Yes, of course everyone is different. Some people turn on the radio when they work or study. Others can't concentrate with the radio on. The latter group will not be able to cope with tinnitus as well as the former group. It is likely genetic. This is the reason the actual volume of tinnitus is not informative, what matters is the distress that it causes. Some people can't handle whisper-like tinnitus. Others don't mind 70-dB tinnitus. I believe that every person has a volume level that will prevent that person from functioning no matter how long that person tries to habituate, and make their body uninhabitable. For some people that volume level is low, for most it is high. Viewed in this light, what do you have against Michael's point that those who boast about habituating are not suffering from loud tinnitus? Here "loud tinnitus" is defined as the tinnitus above that threshold that differs from person to person.

 

[Kain]

 

[Contrast]

guys please talk to me elsewhere i am too mentally ill to continue using the forum.

 

[Contrast]

i am half way done with my work. I've been working like a busy beaver compiling the evidence.

 

[incelitus]

MAI WAIFUU

 

[Contrast]

guys i need support so i can complete my final mission and watch Daniel and Ryan burn.

 

[Star64]

Your use of the English language is colourful and exuberant as usual @JohnAdams even though I dislike reading it.

Michael

Many studies have concluded that the use of colourful and exuberant language such as profanity has health benefits. I know you believe that tinnitus is 90% mental and that stress plays a big part in ones ability to cope so why would you not recognise that for some people this may actually be beneficial for their health. I attended a pain management seminar years ago and this was actually discussed.

I know you do not swear Michael and that is fine, but you should not judge people for using colorful language as I can tell you one day somebody that swears might just save your life.

Yes Michael, some of the best and respected surgeons I have worked alongside had outbursts of profanity

 

[JohnAdams]

Many studies have concluded that the use of colourful and exuberant language such as profanity has health benefits. I know you believe that tinnitus is 90% mental and that stress plays a big part in ones ability to cope so why would you not recognise that for some people this may actually be beneficial for their health. I attended a pain management seminar years ago and this was actually discussed.

I know you do not swear Michael and that is fine, but you should not judge people for using colorful language as I can tell you one day somebody that swears might just save your life.

Yes Michael, some of the best and respected surgeons I have worked alongside had outbursts of profanity

We are still being judged for our potty mouths/keyboards? Lol

 

[Michael Leigh]

@Star64

You are entitled to your opinions and have made them quite clear. I am entitled to mine and will continue to air them whenever I feel the need to, particularly when in correspondence with someone, verbally or in writing. In this case I was reading a reply to my post from JohnAdams. I believe the use of profanity in certain circumstances is appropriate, especially when one is irked and frustrated or just plain angry about a situation, that normally they wouldn't find themselves in. I understand this entirely, we are human and life is problematic. I think most people would find it very difficult to be minding their Ps and Qs 24/7.

However, in a relaxed environment and writing correspondence on a computer screen, I don't believe it's necessary to using expletives. I believe it says a lot about a person's character, the way they were brought up and the people they associate with. Does this make them a good or bad person? Before making such a judgement I would have to observe them more closely and over a period of time. I certainly do not go out of my way, to associate or socialise with people that continuously use profanity as part of their normal everyday conversation.

By the way, my comments to JohnAdams were purely to make observation, I was not offended by the language used in his post. On the contrary, if I was I wouldn't have replied.

As I have previously mentioned on this thread, I have worked with people that use swear words in every second sentence to the point where they don't realise they are doing it. I have ignored it and carry on as if nothing has happened. Surprisingly, they stop once they realise I don't reply using similar words. I have been asked more than once why I don't swear. I simply say my parents brought me up not to. They are no longer with me, and I never used bad language in front of them; even at those times when we had our disagreements - respect was always maintained.

Unfortunately this is what is wrong with society today. No manners and there's no respect. I see it played out in TV soaps and in films. Although fictional they can be very impressionable to young. Who will believe it's perfectly acceptable to behave a certain way in real life, because of what they have seen some actors and celebrities do on screen.

I know you do not swear Michael and that is fine, but you should not judge people for using colorful language as I can tell you one day somebody that swears might just save your life.

Everyone makes judgments and as I have indicated above, I have no qualms when profanity is used in what I consider to be an appropriate setting. In my opinion, this has nothing to do if someone saves my life, for which I would always be thankful. If they swear or not, I do not consider this to mean they are a good or bad person. Anyone that thinks this way does not know much about human nature because it's more complex than that. A person can have many facets to their nature that goes towards making them a complete human being.

Yes Michael, some of the best and respected surgeons I have worked alongside had outbursts of profanity

I believe what you say but be assured of this. If I were in consultation with one of those surgeons, as I have done over the 23 years I have attended hospital as an out-patient for tinnitus. If he or she used profanity in my presence, I would not hesitate to write a letter to the CEO of the hospital as I regard such behaviour as highly unprofessional. Twenty three years ago, when I first got tinnitus with severe hyperacusis. The Hearing Therapist I saw was abrupt and rude on more than one occasion. I thought she was devoid of any understanding of what I was going through.

Not surprisingly she hadn't a clue about tinnitus because she'd never experienced it. I thought her conduct most unprofessional and wrote a letter of complaint to the Head of Audiology. I was referred to another Hearing Therapist, who was born with tinnitus and understood exactly what I was going through. Some weeks had passed and I learned, the Hearing Therapist I had complained about was dismissed from the hospital, as other patients had complained.

I hope this matter can now be put to rest and will not be commenting further.
I wish you well.

Michael

 

[Contrast]

 

[Contrast]

I've never heard of anyone doing ACT for tinnitus.

CBT is the prevalent one.

ACT and opiod based pain killers dominate the chronic pain industry with an iron fist. ACT is a hyper masculinized version of CBT with a special emphasis on getting the fuck over it. It's core belief is to separate pain from suffering. ACT practitioners inform sufferers that having a hidden illness no matter how unforgiving is just part of life and they need to move on and not be a burden to others.

 

[JohnAdams]

Scammers are an annoyance for sure, but there are real villains, like Berthold Langguth with the ESIT, the European School for Interdisciplinary Tinnitus Research.

The ESIT is a garbage research mill that diverts research funding to stuff about personality traits and habituation crap. Also, he has tainted the clinical research behind Lenire by presenting a clear conflict of interest by leading the studies and being an employee of the company making the device. He could have very easily declined a position on Neuromod's scientific advisory board or opted out of being apart of the TENT-2A study.

It is men like this that are part of the problem and basically standing in the way of real, unbiased research.

Why don't you see him working with Audion in the Regain project? This being something that actually may cure tinnitus.

Look at their publications:
https://esit.tinnitusresearch.net/index.php/research-projects/publications-by-esit

Is it just me? Or does it seem like none of this has anything to do with understanding the actual causes of tinnitus?

Even their latest paper titled: Big Five Personality Traits are Associated with Tinnitus Improvement Over Time

You can see that they are guilty of convoluting emotional well being with tinnitus "improvement".

Equating tinnitus with its psychological effects is probably the single greatest hinderance to getting the tinnitus research community to focus on etiology and cures.

 

[Contrast]

im suffering so much guys.

 

[Ed209]

im suffering so much guys.

If I were you, Contrast, I'd take a break from going after scammers and I'd focus on your own wellbeing 100%. Do whatever it takes to make yourself feel better. I don't know what other health issues you're having to deal with but I know how shitty life can get when everything comes down on you all at once. It sucks big time.

I'd try and focus on something you enjoy like animation. Maybe you could do a short tinnitus story that could be used to raise awareness? Or maybe just animate a short that's based on something you enjoy. The best thing you can do for yourself is to keep your brain engaged in positive activities.

In my opinion, Fuck Daniel Toh and Ryan Shelton. They'll just drag your moral down. Think about yourself, buddy. I can tell you aren't yourself and it's clear you're suffering badly which is really sad to see. I wanna see you bounce back strong.

 

[ajc]

Is it just me? Or does it seem like none of this has anything to do with understanding the actual causes of tinnitus?

It's just you. This Berthold guy is also the exec of TRI which was founded by Matteo De Nora who gave it something like 20 million euros. I think you're barking up the wrong tree.

 

[JohnAdams]

It's just you. This Berthold guy is also the exec of TRI which was founded by Matteo De Nora who gave it something like 20 million euros. I think you're barking up the wrong tree.

And what exactly have they discovered that has lead to a tangible path forward to a cure? Nothing.

20 million euros wasted by these people.

I also find it interesting that you could care less that these people equate tinnitus improvements with emotional improvements when they two totally different things and is the construct by which tinnitus research funds are diverted to psychological studies which do nothing tangible for our situation. But you still remain all over my nuts when I point out these problems.

 

[ajc]

I also find it interesting that you could care less that these people equate tinnitus improvements with emotional improvements when they two totally different things and is the construct by which tinnitus research funds are diverted to psychological studies which do nothing tangible for our situation. But you still remain all over my nuts when I point out these problems.

I'm pro cure but these two sides are not mutually exclusive. I try to look at the overall picture instead of spitting out ad hominems like you do. Also just to make it obvious... it's utterly delusional to think that if there were no psychological studies done then all that money would be going to biomedical research. It wouldn't.

This written by @Pre55ure was something you should understand but apparently can't. I should probably ignore you because I get frustrated when I read your silly irrational posts and you can't change your stance even when proven wrong.

I understand the frustration behind money going into research like this and NOT towards ACTUAL cures that help. But I think that a lot of you guys are overlooking the fact that studies like this do have value.

Quick example - lets say that Neuromod groups people into 3 distinct "buckets" based on their "Big five" personality traits. One bucket is all the people that according to this study are likely to "clinically improve", another is those likely to stay "clinically neutral", and the last is those likely to "clinically worsen".

If the results of Neuromod's research get published, and the only people who improve while using it are those from the "likely to clinically improve" bucket... Well then we know it's probably worthless. That was the group expected to improve anyway. But if we see improvements in the other two groups, then it's likely that there truly is something there that works. Being able to quantify those things is valuable.

I used to do a lot of statistical modeling and regression analysis, and every piece of data that you can include that might affect the outcome, makes the model more robust and accurate.

The more accurately we are able to interpret the research, the less dead ends we go down and ultimately the less time it takes to develop a real cure.

At least that's my opinion.

 

[Fifth Business]

lol this was saved in my drafts so i guess i have to post it

The Virgin MPPer:
-Virgins: not just metaphysically speaking.
-Can't articulate themselves at all without liberal use of profanity.
-Says things like 'we're doing meme magick', magical thinkers generally.
- Sincerely thinks non-cure oriented treatments, even posts concerning the same, is "holding things back"

The Chad M Leigh:
-Has intimate relationships, though prefers civilized, platonic connections.
-Raised appropriately in Anglo tradition, does not swear
-Patient experience is rooted in utilizing treatment options available. Lives fulfilling life despite chronic condition.
-Has counseled and corresponded with many tinnitus patients
-No need for headphones, does not use even at low volume

 

[Contrast]

If I were you, Contrast, I'd take a break from going after scammers and I'd focus on your own wellbeing 100%. Do whatever it takes to make yourself feel better. I don't know what other health issues you're having to deal with but I know how shitty life can get when everything comes down on you all at once. It sucks big time.

I'd try and focus on something you enjoy like animation. Maybe you could do a short tinnitus story that could be used to raise awareness? Or maybe just animate a short that's based on something you enjoy. The best thing you can do for yourself is to keep your brain engaged in positive activities.

In my opinion, Fuck Daniel Toh and Ryan Shelton. They'll just drag your moral down. Think about yourself, buddy. I can tell you aren't yourself and it's clear you're suffering badly which is really sad to see. I wanna see you bounce back strong.

thank you Ed you have no idea how much physical pain i am in.

I won't be bouncing back unless a miracle happens.

 

[just1morething]

thank you Ed you have no idea how much physical pain i am in.

I won't be bouncing back unless a miracle happens.

I agree with Ed, concentrate on your own well being. Where are you hurting, or is it confidential? I have some other issues besides tinnitus but the noise bothers me by far the most.

 

[Michael Leigh]

The Chad M Leigh:
-Has intimate relationships, though prefers civilized, platonic connections.
-Raised appropriately in Anglo tradition, does not swear
-Patient experience is rooted in utilizing treatment options available. Lives fulfilling life despite chronic condition.
-Has counseled and corresponded with many tinnitus patients
-No need for headphones, does not use even at low volume

@Fifth Business

Once again Fifth, you have made me smile with your eloquent use of words.
Well done and take care

Michael