My Posting Place

[Bam]

I apologize for getting everyone's hopes up for today about Neuromod. I thought we would be able to access the information some way.

Been looking forward to today for a while, but now I feel shitty.

While our old friend Jastreboff sups on another free beer and chortles away to himself, his scam empire still intact. Motherf***er.

 

[Bam]

We shouldnt be mad. We should just be aware of the truth and act accordingly.

Does anyone else here feel like your family and friends are inadvertently part of Jastro's evil empire? As in they've been brainwashed with his 'coping' mentality on T without even realising it.

 

[Manny]

Does anyone else here feel like your family and friends are inadvertently part of Jastro's evil empire? As in they've been brainwashed with his 'coping' mentality on T without even realising it.

Agree, but more like Jastreboff fed off and strengthened the unfortunate natural social human response to invisible illness (and one in the brain at that).

 

[Bam]

Agree, but more like Jastreboff fed off and strengthened the unfortunate natural social human response to invisible illness (and one in the brain at that).

I see what you did there. You flipped that shit. And you are quite correct.

Jastro saw the innate lack of empathy for invisible suffering and whilst sitting in his lounge chair stroking his cat he cooked up his insidious masterplan.

 

[JohnAdams]

Does anyone else here feel like your family and friends are inadvertently part of Jastro's evil empire? As in they've been brainwashed with his 'coping' mentality on T without even realising it.

No dude. It is just the human condition. We are suffering immensley. Tinnitus is a very very difficult thing to live with. People just dont understand how profoundly horrible this is. It's like trying to explain an LSD trip to someone that has never tried drugs. They just cannot understand. Really we just need research towards a cure for this very complecated problem we face. The real derps are the ones that have positions of advocacy and authority in the subject and dont work towards an actual cure OR GET ON TV AND WHEN ASKED ABOUT A CURE SAY ABSOLUTELY NOTHING ABOUT CURRENT EMERGING TECHNOLOGY AND DEFER TO TALKING ABOUT MANAGEMENT STRATEGIES. AAAAAAAHHHHHHGG!

 

[Manny]

Jastro saw the innate lack of empathy for invisible suffering and whilst sitting in his lounge chair stroking his cat he cooked up his insidious masterplan.

Agree. Literally. I mean TRT as a proper therapy (to be "developed" and funded) is pretty clearly absurd, therefore I think he literally planned it as a money- and fame- maker. Purposely capitalizing on social instinct and lack of tinnitus treatments.
Conjecture, of course, but seems quite likely to me actually.

 

[Bam]

No dude. It is just the human condition. We are suffering immensley. Tinnitus is a very very difficult thing to live with. People just dont understand how profoundly horrible this is. It's like trying to explain an LSD trip to someone that has never tried drugs. They just cannot understand. Really we just need research towards a cure for this very complecated problem we face. The real derps are the ones that have positions of advocacy and authority in the subject and dont work towards an actual cure or OR GET ON TV AND WHEN ASKED ABOUT A CURE SAY ABSOLUTELY NOTHING ABOUT CURRENT EMERGING TECHNOLOGY AND DEFER TO MANAGEMENT STRATEGIES. AAAAAAAHHHHHHGG!

Don't even start me on that massive cop out we witnessed from the BTA boss. I mean if that guy had been a business CEO he would have been fired especially as the mission statement of the charity is 'to see a world where nobody suffers from tinnitus.' ......Not, 'to see a world where people lessen the symptoms of tinnitus by using coping strategies.'

He should be gone and replaced by a hardcore cure advocate immediately.

 

[Bam]

Agree. Literally. I mean TRT as a proper therapy (to be "developed" and funded) is pretty clearly absurd, therefore I think he literally planned it as a money- and fame- maker. Purposely capitalizing on social instinct and lack of tinnitus treatments.
Conjecture, of course, but seems quite likely to me actually.

Highly likely my friend. The void left behind by having no cure has been a veritable goldrush for cowboys and profiteers for decades. If there's one disease you really don't want on multiple levels it's chronic T. Tortured, vulnerable, and preyed upon is not a good look.

 

[IAmCalifornia]

"Oh - come on IAC.
Let's have it straight mate,
Say what you mean for god'sake !!!"

What I mean? I have this horrible illness and people like Jastreboff make money off of me. I'm living in the twilight zone. I want to die. I can't wait to die. My life has amounted to nothing.

 

[Bam]

What I mean? I have this horrible illness and people like Jastreboff make money off of me. I'm living in the twilight zone. I want to die. I can't wait to die. My life has amounted to nothing.

We have all found ourselves in a really tight squeeze to say the f***ing least. Today I told a well meaning person about it and she laughed in stunned horror and said, 'oh my God! I would rather have AIDS.'

I found her attitude rather refreshing especially when you get some of the folk round here even living under some delusional spell that T is not that bad and we should be careful about wording our suffering too strongly.

F*%% OFF! We have a disease that's worse than F*%#*$ AIDS! ......Sorry had to get that off my chest.

 

[Manny]

We have all found ourselves in a really tight squeeze to say the f***ing least. Today I told a well meaning person about it and she laughed in stunned horror and said, 'oh my God! I would rather have AIDS.'

I found her attitude rather refreshing especially when you get some of the folk round here even living under some delusional spell that T is not that bad and we should be careful about wording our suffering too strongly.

F*%% OFF! We have a disease that's worse than F*%#*$ AIDS! ......Sorry had to get that off my chest.

I would 1000 times rather have AIDS or amputation or cancer (without resulting HL) than T and HL. Music is my soul.
There are very few conditions that I can think of that I would hesitate to trade for my T and HL (and maybe I would still do it).

 

[PDodge]

Yes its absolutely ridiculous. I posted this as my status, but we had an alarm go off from a panel here at work. It was a constant 4000hz tone. It went on for 3 hours-my co-oworkers- including myself were going pretty nutty. Now add fuzz, static, chirping into the mix and they'll have an idea. I'm fucking done. I'm gonna spend the 30g's on stem cells and if that doesn't work then Im DONE.

 

[Bam]

I would 1000 times rather have AIDS or amputation or cancer (without resulting HL) than T and HL. Music is my soul.
There are very few conditions that I can think of that I would hesitate to trade for my T and HL (and maybe I would still do it).

Dude I'm sooo with you. The only thing that comes close to this in my book would be an acid attack where you lose half your face and both eyes.

 

[Bam]

Yes its absolutely ridiculous. I posted this as my status, but we had an alarm go off from a panel here at work. It was a constant 4000hz tone. It went on for 3 hours-my co-oworkers- including myself were going pretty nutty. Now add fuzz, static, chirping into the mix and they'll have an idea. I'm fucking done. I'm gonna spend the 30g's on stem cells and if that doesn't work then Im DONE.

Go big and if that doesn't work don't go home. I feel ya.

 

[Manny]

Dude I'm sooo with you. The only thing that comes close to this in my book would be an acid attack where you lose half your face and both eyes.

Well then when tinnitus is cured you'll have nothing more to worry about, cause I heard PJ's developing cutting-edge Acid Attack Retraining Therapy.

 

[Jazzer]

What I mean? I have this horrible illness and people like Jastreboff make money off of me. I'm living in the twilight zone. I want to die. I can't wait to die. My life has amounted to nothing.

I know IAC - my life has been shipwrecked by this absolute "brown stuff" - (I'm being very circumspect here, because 'they' seriously don't appreciate it if we swear or use graphic language, though god knows we've got every reason to.)

With no treatment and no cure, all we have is our own 'personal coping methods' it seems to me.

Four years ago when my severe acoustic trauma occurred I went up to the Ear Nose and Throat Hospital in London.
I was desperate, looked it, and sounded it.

The charming /caring / sincere clinician who was interviewing me asked me how I coped.
I said "All I've got is stoical acceptance."
I sobbed.

She said "please don't worry - we would never leave you there.
Just wait till we tell you all about the Jastewboff model, and show you the scientific findings
- this man is a genius - ahead of his field.
I could tell she revered him.
She quite clearly had no Tinnitus herself.

Fast forward to now, and I have no further options other than coping.
I read up on the Jastreboff model, and it sounded like 'hogwash' to me.
It seemed like somebody had
"dreamt up a concept,
drawn a few diagrams,
devised some high-flown strategies,
and sold the idea on to the medical profession,
who were probably blinded by 'psuedo' science."

The only fly in the ointment seems to be that the sufferers "us," quickly discovered that it simply didn't work.
The reason being that:
- we still had Tinnitus,
- and it still ravaged us.
There was absolutely no change.

I had no intention of trivialising your statement IAC - I was really admiring your
'turn of phrase.'
Best wishes
Dave x

 

[Bam]

Well then when tinnitus is cured you'll have nothing more to worry about, cause I heard PJ's developing cutting-edge Acid Attack Retraining Therapy.

At least I won't have to see the sweaty little bastard while he's trying to convince me my melted face and lack of eyes are really no problemo.

 

[Manny]

Dude I'm sooo with you. The only thing that comes close to this in my book would be an acid attack where you lose half your face and both eyes.

Yeah. Serious and permanent facial disfigurement is on the very, very short list of things which I might trade for my T and HL. (Most things I would definitely trade for my T and HL.)
And no, I am not exaggerating.

 

[Manny]

#MPPinthetrenches tonight

 

[Bam]

#MPPinthetrenches tonight

MPP is a freakin riot.

 

[Manny]

MPP is where there are like-minded people in this tragedy aye aye

 

[Bam]

And it really is that. Like something from a Greek tragedy where bereft parents attempt and fail to drown their baby in a river to spare it the pain of the scream that never ends after consulting the all seeing oracle.

 

[IAmCalifornia]

I know IAC - my life has been shipwrecked by this absolute "brown stuff" - (I'm being very circumspect here, because 'they' seriously don't appreciate it if we swear or use graphic language, though god knows we've got every reason to.)

With no treatment and no cure, all we have is our own 'personal coping methods' it seems to me.

Four years ago when my severe acoustic trauma occurred I went up to the Ear Nose and Throat Hospital in London.
I was desperate, looked it, and sounded it.

The charming /caring / sincere clinician who was interviewing me asked me how I coped.
I said "All I've got is stoical acceptance."
I sobbed.

She said "please don't worry - we would never leave you there.
Just wait till we tell you all about the Jastewboff model, and show you the scientific findings
- this man is a genius - ahead of his field.
I could tell she revered him.
She quite clearly had no Tinnitus herself.

Fast forward to now, and I have no further options other than coping.
I read up on the Jastreboff model, and it sounded like 'hogwash' to me.
It seemed like somebody had
"dreamt up a concept,
drawn a few diagrams,
devised some high-flown strategies,
and sold the idea on to the medical profession,
who were probably blinded by 'psuedo' science."

The only fly in the ointment seems to be that the sufferers "us," quickly discovered that it simply didn't work.
The reason being that:
- we still had Tinnitus,
- and it still ravaged us.
There was absolutely no change.

I had no intention of trivialising your statement IAC - I was really admiring your
'turn of phrase.'
Best wishes
Dave x

It's nothing against you, I'm just not in a good headspace. I appreciate the words and in no way did I interpret your words as trivializing. I get triggered sometimes I guess, nothing personal.

Damn tinnitus.

 

[Jack Straw]

@threefirefour how has your TMJ issues been? My TMJ has been flaring up causing some serious jaw and ear pain. It is also making my sensitivity to sound worse as well.

How did you diagnose it? I know your dad is a dentist, but was there something he was looking for to know you had it? Do you have any advice with how I should approach it?

 

[threefirefour]

@threefirefour how has your TMJ issues been? My TMJ has been flaring up causing some serious jaw and ear pain. It is also making my sensitivity to sound worse as well.

How did you diagnose it? I know your dad is a dentist, but was there something he was looking for to know you had it? Do you have any advice with how I should approach it?

My tinnitus is a lot quieter now. It's been like that for a month because I got a TMD splint. My jaw hurt a bit and my jaw was crooked. Still is but improving for sure.

 

[Jack Straw]

My tinnitus is a lot quieter now. It's been like that for a month because I got a TMD splint. My jaw hurt a bit and my jaw was crooked. Still is but improving for sure.

Nice! how loud is your T? can you hear it all the time or only in quiet rooms?

 

[threefirefour]

Nice! how loud is your T? can you hear it all the time or only in quiet rooms?

I can barely hear it in quiet rooms now it's very nice.

 

[Autumnly]

(I needed to post this somewhere)

Have a look at this Visual Snow Twitter account: https://twitter.com/VisualSnowInit

They are insanely pro cure! They even use the hashtags #CureVS and #CureVisualSnow. No "VS Retraining Therapy", no CBT or mindfulness. They want a cure and they are vocal about it.

They even retweeted a post that said: "#VisualSnow is a devastating brain disorder with no known cause, treatment or cure." When they talk about CBT or mindfulness as ways to cope they always mention that a medical treatment is needed.

They also posted "Can u imagine being caught in a snowstorm 24/7 w/o a way to escape? That's what it's like to live w/ #VisualSnow." and retweeted "hey not that anyone understands or cares, but #visualsnow is a hell of a disorder to live with and theres nothing i or anyone else can do about it". Wished we were allowed to talk so openly about tinnitus.

They openly call it a debilitating condition, a neurological condition, a brain disorder - words you never see when it comes to tinnitus, too scary, too real.

And you don't see people with mild visual snow in the comments saying "this makes me feel bad".

 

[JohnAdams]

No sugar coating it. This is hell on earth. A living nightmare. Exacerbated by worthless advocates that cant do anything tangible to help us.

 

[Manny]

I wonder why a Jastreboff only arose for T and not for visual snow. Not that I'm trying to give anyone ideas...
Also, how in hell did TRT (which seems very evidently idiotic as a proper treatment) get so commonly accepted? I just don't get it.