I Was Right

This TRI was pretty impressive. I thank him for his great efforts in keeping us updated. So during his time, we got to see great researchers show up and talk about repairing hidden hearing loss and hearing loss. Even though Susan Shore couldn't show up, her students did and gave an in depth discussion on the research they've accomplished. Unfortunately, the dinosaurs of the tinnitus world (CBT/TRT charlatans) decided to rise up from the ground and pay us a little visit.

Pawel Jastreboff, the great sheister himself, got front row seats. I imagined he was probably hoping that we were nowhere near a treatment so he could continue to shill people out of their cash for doing nothing of value, but apparently he didn't like what he saw. According to Steve: "Pawel Jastreboff said in discussions on Friday that the patient needs to let go of the cure in order to progress with treatment."

Wow really gets your noggin' joggin' huh? Wow imagine my surprise. The guy who benefits off tinnitus having no treatments... Doesn't want research for a treatment to progress! I've heard people saying he was a guy who just wanted to help all over the site. "Oh but threefirefour, he's just trying to help people who are suffering right now!" No, he's trying to hold us back. He's nothing but the greedy man I painted him out to be. Every bad thing that I said about him that people disagreed, all the wrath I inquired in the "I hate TRT" thread, all the arguments against Michael Leigh, I was right about it all. There it is in his own words.

I'm officially the most redeemed person on the site.

 

Okay. I understand now why you feel what you have been expressing.

No you are not!

 

Thanks for pointing out that typo. My crapple butchered it to hell. How to you get "Vilified" out of "redeemed"? I honestly don't understand.

 

@threefirefour Only 20% of those with tinnitus suffer enough from it to seek treatment and maybe TRT would help. Less than 10%, maybe as low as 4% with persistent severe tinnitus will be unable to habituate because it begins in the central auditory system and has response to peripheral physical injury. See line 3 in link. As @Michael Leigh has said these people can't turn on their computer to post. Baths, and gentle massage for comfort for those very persistent severe tinnitus. I am at the 4% from peripheral injuries. I don't think that I can post anymore. If I was you I get on with my life.
https://clinicaltrials.gov/ct2/show/NCT01480193

 

Huh, interesting. I gave TRT a try because I have no better idea right now, but if things are actually progressing on the cure front, that's fucking amazing!

 

Absolutely. I can say with 75% confidence that there will be a treatment for many sufferers by 2020. in fact, I bet my life on it!

I would always recommend that people suffering tinnitus should under no circumstances ever go do TRT. The reason for this is because for it's price, there's something either cheaper, or better.

 

Eh, I managed to get TRT for a very low price and it actually helped a lot with my hyperacusis (even though I didn't believe it would, I went from having to wear earplugs literally everywhere outside to managing daily life without any hearing protection, which is nice) *and* I got a nice trip to London out of it, so I'm not too mad, lul. It did absolutely nothing for the tinnitus though, which I expected so uh... Susan Shore pls

Not sure what you mean by "there's something either cheaper or better" though? Is there?

 

Yes. For cheaper, you could get CBT, which is about equally as effective but it doesn't do anything for tinnitus, like TRT. For hyperacusis, you could get WNGs, or you could do ametuer pink noise therapy for free. For better improving tinnitus, ACRN has proven to be effective (although tinnitus professionals aren't 100% supporting it) in reducing the volume of tinnitus. It costs about 5k professionally done, or you could do it online for free.

 

Ah, fair enough! I thought I missed something. I'm not convinced about ACRN though - you mean the generalfuzz site, right? I tried it for my ~12KHz tone but it's so high pitched that the ACRN beeps themselves hurt my ears, lol. Couldn't do it for more than a few seconds.

What do you think about rTMS? I've been meaning to make a post about it (the general "just be positive and everything will be fiiiiiiiine!" mentality of TinnitusTalk gets to me sometimes so I haven't yet) but the research is... well. Promising but unconvincing and I'm scared shitless it'll make things worse.

 

Yeah I hate that crappy mentality too. Anyways, most of the papers done on ACRN suggest that it's effective, but not for everyone. Maybe you listened to it too loudly? You're supposed to have it slightly lower (in volume) then your tinnitus. The pitch needs to be as close as possible. I was able to pin my hissing to 5573 hz.

I forgot to mention rTMS. It works by slowing down the active tinnitus-causing neuroclusters by using a slow, powerful magnetic pulse. I saw a post that said it's effective in reducing tinnitus in 50% of people that undergo rTMS. I don't know what the price is, there has to be a lot of sessions (almost 20), and there has been a case where it made a persons tinnitus MUCH louder. It's much better than that TRT crap, but if I'm nonna do it, I want to exhaust my other dB reduction methods first.

 

@threefirefour

My friend you are a good person and one of my favourite posters and never ever forget that.

 

Thanks you're definitely one of the best users here too.

 

Tbh I have zero idea how to set anything "lower" in volume than my tinnitus as nothing masks it, it just climbs on top of everything... I'll try again on a lower volume I guess. If you could link me to some reliable info on it I'd be super grateful (especially on exactly how it should be done) - I've googled around but a lot of what I found was pure speculation.

Yeah, that's the outcome I'm afraid of. I've found a place here that does it, but it's only 10 sessions? The price is... unpleasant but affordable and I'm willing to splurge on it. I'm suicidal as fuck so I've already spent my life savings on PC hardware anyway lol, it's not like I'm saving up for the future. This is the study, right?

https://www.ncbi.nlm.nih.gov/pubmed/28428769

edit: whoops sorry for hijacking your thread by the way

 

Okay. I don't know how to really help with unmaskable tinnitus, so set it to a volume that you can clearly hear each beep, but it's comfortable.

Anyways, here is an interesting scholarly article on the subject:
- https://content.iospress.com/downlo...torative-neurology-and-neuroscience/rnn110218

 

Sweet! I'll check that out on the way to work. Thanks for all the replies!

 

What the f*ck happened to the prehistoric fauna we posted in this thread?

@threefirefour

 

It went extinct.

 

I don't smell anything

 

That's very selective. Now add the next part of the quote.

This isn't the Daily Mail (lost on you if you aren't British I imagine). Anyone can pull out tiny pieces of text to support their argument and ignore the rest.

What I took away from the conference is that all of the treatments are essentially trying to do the same thing. In their own particular way they are trying to interrupt tinnitus. Be that in an archaic way or a more sophisticated way, this is the main aim.

And any revolutionary treatment is going to be exactly the same. It will interrupt the tinnitus signal.

 

The subtle dig isn't lost.

I'll do better than that. I'll add the rest of the post and explain why it doesn't contradict my post.

Quoted part: "Pawel Jastreboff said in discussions on Friday that the patient needs to let go of the cure in order to progress with treatment".

Remainder: "He is sort of right". (opinion, and irrelevent to his intent).

"However, this is my own interpretation:

You need to understand that there isn't a cure right now, then find the current treatments that work best for you and allow you to get on with your life again. It will be a patch of sorts unless you have a direct cause that once tackled will ameliorate tinnitus. You have tinnitus, you need to do the best that you can with the available tools.

You should never stop lobbying for a cure. You should add your support and your voice and make sure that those who are searching for a cure have our full backing as a community. A cure is the number one priority, but you shouldn't just dismiss everything else in the mean time.

I say the above as a person with loud and intrusive tinnitus, and one who is quite frankly useless at treating myself. I have reached a point of habituation by just bumbling along, zero special techniques or approaches apart from some of my own audio experiments when I get time".

You seem to be pro-cure, and I'm glad you're on our side, but the rest of the post says more about you then it does about Jastreboff.

 

I really do believe that repairing the auditory nerve will reduce tinnitus based on what we see with cochlear implants and what we know about how central gain and how neuro plasticity works.

If a cure comes It would be ideal for TMJ sufferers to have neuro medulation devices, and for hearing loss sufferers to have auditory nerve and cochlear hair cell regeneration. My tinnitus is only 10% of the problem the hearing distortion I have is what is ruining my life.

 

And I will eat some humble pie because I thought I had added to that but I clearly didn't.

Jastreboff also acknowledges that we should be searching for a cure. He isn't in any way anti-cure from my impression of him. The quote was related to how a patient needs to be in order to benefit from treatment. I think he is dogmatic but he isn't completely unbending. It's rare in life that things are totally black and white.

I get the principle. If you hang on only to a cure and you won't accept anything else then it does follow you will suffer. It's only once you are able to acknowledge that there isn't a cure you can really move on with finding treatment that works for you. But like you quoted, nobody should stop hunting for a cure or accept there won't ever be one. We as a community need to be all over that.

And I will caveat for those that don't know, I am not a fan of TRT. However, I do acknowledge that it works for some people.

 

@threefirefour,
I know TRT does not work for everyone and also the treatment is very expensive privately and due to cut backs
it now is not offered free on the NHS in some hospitals including mine .
CBT now is used in all our hospitals free on the NHS and lot of our doctors including mine offer counselling free at their practice.
Paying for TRT would cost so much money and without a definite result given might have been really good in the past for those whom got it free but I'm sure would think twice if had to pay for it now .
So for now we have to rely on what help is available and that can differ around the world until one day a cure is found but I don't think it will be one treatment to fix us all.....love glynis

 

As has been pointed out to you, nearly everyone DOES move on to a ‘normal’ happy life without a ‘magic pill’. The majority don’t even seek formal medical or psychological attention.

However just because you have decided that you are “God’s shitpost” (your words) you want to back that up by implying that everyone will suffer until they find a ‘magic pill”. How are you going to move on if you feel like that about yourself? Will you still feel that way after a magic pill is found?

You ARE scaring newbies to this condition at the most vulnerable time, I’ve read many of the responses to your posts. Maybe it’s time to keep some things to yourself and consider the majority who come on here who WILL move on.

 

You're a funny guy, in a good way haha
I do not think it's a scam, although personally I did not see the point. I tried it for a while but it involved many hours a day of listening to boring music that even made my tinnitus more present. in any case I respect any method that alleviates the condition (placebo or not). What I do not understand is why treatment is so expensive in other countries. that if it bothers me. in my case how health is public can be done for free

 

Don’t give up posting just because of someone else’s opinions. He’s entitled to his opinions, so are we!

Lots of newbies to the condition come on here for support. Why let someone stop that? ;-)

 

@Bassplayer Is your boat on salt water, a lake or maybe a river? My wife's dad sold his sail boat a couple of years ago. He would sleep on it on weekends. It was in an ocean cove. Amazing he's 94 years old. He still goes to an exercise place.

 

Amazing. None of what you just said is relevant. I'm not implying any of that at all, this post is a dig at Jastreboffs questionable character, and the fact people attacked me for being right about him. And being gods shitpost is a joke.

Maybe it's time to keep some things to yourself.

 

Which things do you you think I should keep to myself ?