Suicidal

[Juan]

It's about people who deny progress literally as it's happening right in front of them. "Nothing ever changes" looks ridiculous when things are changing. Why would so many medical institutions be involved in artificially propping up FTX?

When these treatments are at hand and available for anyone, and it is verified that they fix hyperacusis, then I will believe in them

Because, you know, there are "experts" or "researchers", and I can give names, like David Baguley, who do not know anything about hyperacusis. But hey, these are "experts"!

 

[FGG]

When these treatments are at hand and available for anyone, and it is verified that they fix hyperacusis, then I will believe in them

Because, you know, there are "experts" or "researchers", and I can give names, like David Baguley, who do not know anything about hyperacusis. But hey, these are "experts"!

Well the good news is later this year, Frequency will publish their results on tinnitus. These will be clinical results matched against placebo, not "expert opinion."

Unfortunately, it's not being tested specifically on hyperacusis at this time, though.

 

[El BUZZ]

Well the good news is later this year, Frequency will publish their results on tinnitus. These will be clinical results matched against placebo, not "expert opinion."

Unfortunately, it's not being tested specifically on hyperacusis at this time, though.

When do you think those drugs (Frequency/Hough) could be avaliable for the general public?

 

[FGG]

When do you think those drugs (Frequency/Hough) could be avaliable for the general public?

Frequency: that depends heavily on what the FDA wants to do with phase 2 results.

Hough: I honestly have no idea.

 

[dan]

Because it's relevant to people who night not be aware that these drugs that could help them are in clinical trials. It's kept me from suicide so I thought it could help others.

I understand... do you know about AUT00063??? It was a drug in phase 3 specifically for tinnitus, and it FAILED.

 

[dan]

Well said. You can probably get to live with loud tinnitus (after a few years), but if it spikes each time you are outside (because of hyperacusis), and you can't do basic things like eat a packet of chips, wash cutlery or watch TV on moderate volume, or work in a proper office where people make noise, then you are basically fucked. With hyperacusis, your hair cells are continuing to die because of no sound dampening, and instead of masking tinnitus, it spikes it. Hence, tinnitus + hyperacusis = life fucked!!!!

PeteJ doesn't have hyperacusis as far as I know. He has ear pain.

 

[dan]

View attachment 36242

Did you draw that? Lol
Museum of TRT hahahaha

 

[FGG]

I understand... do you know about AUT00063??? It was a drug in phase 3 specifically for tinnitus, and it FAILED.

Yep, fully aware. I am corresponding with one of the researchers in fact and she said they are reformulating their ion channel compound to be more selective. In the meantime, they have a drug in trial for hearing disorders associated with fragile X. No one at Autonomy is giving up on tinnitus and other hearing disorders but... regardless:

Previously all the tested tinnitus drugs attempted to suppress the signal in the brainstem (or the cochlea by blocking the glutamate surge--for acute cases only). Until now, no one has attempted to actually repair the underlying causal pathology.

You may not realize this but this is an apples and oranges comparison.

Put in another way with a different disease: previously all you had to treat Duchenne Muscular Dystrophy was steroids. Other drug companies tried newer anti inflammatory meds and failed because none addressed the underlying pathology. Then, very recently, a drug came along that actually addressed the underlying problem (premature stop codon in dystrophin) with an exon skipping drug and that drug actually worked (Eteplirsen). You can't say "since anti inflammatories didn't work for DMD, nothing will" but people do that with tinnitus.

 

[threefirefour]

Did you draw that? Lol
Museum of TRT hahahaha

I'm a modern day Picasso meets Ben Garrison

 

[Contrast]

I'm a modern day Picasso meets Ben Garrison

 

[threefirefour]

View attachment 36277

Based Ben at it again

 

[Bill Bauer]

I told myself that I have to live life for others

What a waste of time!

 

[Daniel Lion]

I believe you but I think I hate life more than you.

I also hate people too.

I hate life in general. I am tired of my head and ears having such loud ringing and buzzing. I don't want to be alive anymore. I need a suicide method that I am certain will be painless and successful. I envy that Allan guy. I want to do that.

RIP Allan. We miss you.

 

[MrCrybaby]

I understand... do you know about AUT00063??? It was a drug in phase 3 specifically for tinnitus, and it FAILED.

Please stop comparing utterly different drugs. Autonomy used an ion channel modulating approach that didn't work. Frequency is regenerating the cells of the cochlea.

Uninformed pessimism is poison to sufferers. Those on the suicide thread need it least of all.

 

[Contrast]

Based Ben at it again

I heard Ben successfully eliminated the TRT death squad that killed @PetitGarsTimide

During the raid Ben had an option of using a hand grenade to blow those bastards to smithereens, he could have easily accomplished the 17 man kill via a grenade. But instead he remembered the research on cochlear-synaptopathy and didn't want to damage his hearing more so Ben stealthily raid their base past mid night and slit each one of their throats without alerting their watch guards who had patrol vehicles and spotlight towers to look out for MPP intruders. Ben killed em all. Ben's ninja tier stealth and rugged manliness is amazing.

Rumor has it Ben doesn't care about tinnitus volume, he could habituate if he wants of course but he doesn't cause he's Ben.

 

[dan]

"Uh oh, looks like I got tinnitus again, better take my hearing regeneration pill" LOL
@threefirefour, thx I needed a laugh today.

Did you know birds cannot get tinnitus? They have the ability to regenerate their hearing cells... why can't we find out how they do it? How hard could it be?!

 

[PeteJ]

Well said. You can probably get to live with loud tinnitus (after a few years), but if it spikes each time you are outside (because of hyperacusis), and you can't do basic things like eat a packet of chips, wash cutlery or watch TV on moderate volume, or work in a proper office where people make noise, then you are basically fucked. With hyperacusis, your hair cells are continuing to die because of no sound dampening, and instead of masking tinnitus, it spikes it. Hence, tinnitus + hyperacusis = life fucked!!!!

I want to kill myself because of loud tinnitus, not the hyperacusis.

 

[PeteJ]

PeteJ doesn't have hyperacusis as far as I know. He has ear pain.

I have ear pain but I also have occasional ear pain as a result of a loud noise or sound. I don't know what that sound will be though. Is that some form of hyperacusis? I had ear pain recently from a noise that I heard as I was going through my parking garage. I had to use my fob so I had to lower my drivers side window. It was a loud snapping sound but I don't know where it came from. About 5 minutes later, my left ear was in a lot of pain especially just below the ear.

I don't know what it means but it seemed to come right after the noise albeit a few minutes of delay. As bad as it is, though, it's the loud tinnitus that is the worst because it's always loud and doesn't fluctuate much and any fluctuations are rare and brief when or if it happens. I want the tinnitus volume lowered, the screaming and intense tones that torture me 24/7.

 

[PeteJ]

Because it's relevant to people who night not be aware that these drugs that could help them are in clinical trials. It's kept me from suicide so I thought it could help others.

Yeah, only have to wait 50 to 100 years.

 

[PeteJ]

PeteJ's problem is the combination of bad tinnitus with hyperacusis.

When you get tinnitus, you need motivation to continue your life. The worse the tinnitus, the more motivation is needed. The biggest motivation for those with severe tinnitus seems to be helping other people (Hazel, Markku, Dr. Nagler, Glynis, Fishbone, Jazzer and everybody I forgot to mention, they all seem to live mainly for others). When I had dark thoughts when I got my initial tinnitus, I told myself that I have to life for others, since I didn't see a reason to life for myself anymore. Maybe this is an evolutionary thing, because we might be realizing somehow that investing in our own lives does little for our tribe, but investing in others would be far more beneficial for the collective good (and thus for survival). So there is a reason/purpose to continue. I know multiple people with loud tinnitus (or moderate but with hearing loss) and they all seem helpful and humble people. Egoism doesn't seem a good reason to stay alive for us or at least not for a long-term problem. This ironically also applies to myself: now that I'm worse again, I'm trying to help as much as possible again (definitely no saint here).

So loud tinnitus is a condition you can possibly life with or at least stay alive, but if it is complicated by hyperacusis, then many of those options that would motivate you to continue your life are not possible anymore. We need to be able to get feedback from our peers that our live is worthwhile and we are helping them, that it is appreciated. That is - in my opinion - why PeteJ's needs face to face talks with people because it gives a feeling of belonging and purpose. Artificial communication over the internet may not be enough. The only thing I can think of to solve PeteJ's problem is another person who has about the same symptoms, so they can live for each other. I am not proposing a livelong solution, it is to hold out until there's a treatment on the market.

That sounds nice and interesting but doesn't mean much to me. One, I don't know anyone in real life who has severe/loud tinnitus. Two, I think I am only still alive because I am afraid if my attempt fails and I am crippled. I am also afraid of death but it's further torture if the attempt fails. I also care for a dog but the loud tinnitus makes me want to pursue a method every day. I don't want to live anymore. I don't think I have anything to live for. Only my dog. I love my dog but if I knew someone I trusted and loves dogs, I would have this person care for her so I can end my suffering. It's so loud that I can't even concentrate or focus on routine things. I don't know how people who have insanely loud tinnitus commit suicide. If they have multiple screaming tones, I don't know how they do it.

 

[PeteJ]

If the drugs are for acoustic trauma or tinnitus as a result of acoustic damage to the ears, great. I believe that applies to me. How and why does tinnitus worsen? Some loud noise exposure? I try to avoid it. I avoid restaurants and any loud places. My neighborhood or area is loud but I can't avoid it.

I don't know how researchers determine if an ear or ears have damage from noise exposure. Some people are deaf or half deaf but don't have tinnitus. But, loss of hearing is usually common or combined with tinnitus, right? If a drug can somehow reduce my tinnitus significantly, then I wish it was here already. It just sounds like fiction to me.

My ears never feel normal now and this 'feeling' I knew from onset. What about if you had a physical trauma or a noise that caused some kind of damage in the ear? Will the drugs repair any of this? I just don't see how researchers can address all these problems and conditions of the ear. :-(

The other intangible is that the problem or damage in the ear is 'signaled'(?) to the brain and the claim that different parts of the brain are somehow involved or connected. It seems hopeless. I don't want to wait for something that sounds hopeless and probably unachievable. Especially if it's a long time.

 

[Sevv]

"Uh oh, looks like I got tinnitus again, better take my hearing regeneration pill" LOL
@threefirefour, thx I needed a laugh today.

Did you know birds cannot get tinnitus? They have the ability to regenerate their hearing cells... why can't we find out how they do it? How hard could it be?!

Uhm, it's exactly this fact on which hair cell regeneration research is based upon, as far as my knowledge goes. In mammals the regeneration mechanism has stopped for some evolutionary reason but still seems to be intact to a some degree (sort of "dormant").

Good summary: http://www.cochlea.eu/en/research-lines/regeneration

 

[RishRamsey]

I want to kill myself because of loud tinnitus, not the hyperacusis.

And I want to because of hyperacusis. Fuck life!

 

[hans799]

Uhm, it's exactly this fact on which hair cell regeneration research is based upon, as far as my knowledge goes. In mammals the regeneration mechanism has stopped for some evolutionary reason but still seems to be intact to a some degree (sort of "dormant").

Good summary: http://www.cochlea.eu/en/research-lines/regeneration

My understanding is that the "computer code" for regenerating hearing is right there in us mammals, too, it's just never "called". So these hearing regen therapies don't actually perform the hard work of regeneration themselves, they just "call" the functionality that is already there. Still a complex problem but feasible on our current level of biotechnology.

I'd really love to meet our evolutionary ancestor which was first born with the mutation switching hearing regeneration off. Naturally select it right out of the gene pool with some real powerful kicks up its scaly ass.

 

[xyz]

Drugs in trials for hearing that are believed by their developers to help hearing loss *and* tinnitus of cochlear origin:

FX-322, HPN-07, PIPE-505.

Frequency has said in their Q and A, they saw positive trends and is now testing tinnitus as part of phase 2 (results end of this year or early next)

Pipeline has patented their synaptopathy drug specifically for tinnitus.

And Hough has expressed interest in a larger proof of concept study for tinnitus. Justin, their CEO said on this forum that they saw it help tinnitus in their small phase 1.

Drugs that may help but that fact hasn't been declared by the company yet:

Regain, OTO-413

Drugs being tested specifically for tinnitus and not hearing loss:

OTO-313 (this is likely to work much better very acutely imo)

And Lenire isn't the only bimodal device and, in fact, it is the least scientifically rigorous of the 3 by far. Both the Susan Shore Device and the Minnesota device are way more promising.

As an aside, if you have cochlear damage (from noise, infection or from ototoxins), whether or not you have perceivable "hearing damage" or not, these drugs should help you.

If you have something like TMJ instead, that had treatments and bimodal stimulation should help with that too once better, safer devices are released. I think neck related tinnitus will probably benefit from better bimodal devices, too.

Btw, there haven't been any hearing loss drugs that have tried and failed. No hearing loss drug has ever been in trials before now.

In my opinion this bimodal stimulation approach lies in the same category as low level laser therapy. At least Lenire is now available, the other two seem to hide in the dark. Shore's device has 15 years of research behind it, but there was never a larger trial. So we don't know about its effectiveness.

I am also much more optimistic about these hearing regeneration drugs. If they are really capable of regrowing hair cells and pepping up damaged neurons this is really another league of drug and might give us some quality of life back. Hopefully, in a few years ...

 

[PeteJ]

And I want to because of hyperacusis. Fuck life!

I had worse hyperacusis initially but I guess it improved somewhat. How long have you had it? I have had stretches in which my ear had pain for days and weeks. I think it was due to both hyperacusis and tmj and maybe an unknown cause, too... I dunno for sure.

It's possible your hyperacusis might improve/lessen. Quite a few people here have had their hyperacusis improve.

 

[PeteJ]

In my opinion this bimodal stimulation approach lies in the same category as low level laser therapy. At least Lenire is now available, the other two seem to hide in the dark. Shore's device has 15 years of research behind it, but there was never a larger trial. So we don't know about its effectiveness.

I am also much more optimistic about these hearing regeneration drugs. If they are really capable of regrowing hair cells and pepping up damaged neurons this is really another league of drug and might give us some quality of life back. Hopefully, in a few years ...

Based on what?

Are these treatments going to help tinnitus or something else?

 

[Bobby Sinatra]

From the man himself:

 

[xyz]

Based on what?

Are these treatments going to help tinnitus or something else?

@FGG can answer this probably much more competent, but these drugs are primarily targeted at hearing loss. But a lot of people with hearing loss also have tinnitus and they saw in some trials that these drugs also lowered tinnitus. If this turns out to be the case in some larger trial with above placebo effect results. This would be great.

Ah wait, we have TRT, all research can be stopped. There are only 5 % of whiny little bastards who don't benefit from it.

 

[FGG]

@FGG can answer this probably much more competent, but these drugs are primarily targeted at hearing loss. But a lot of people with hearing loss also have tinnitus and they saw in some trials that these drugs also lowered tinnitus. If this turns out to be the case in some larger trial with above placebo effect results. This would be great.

Ah wait, we have TRT, all research can be stopped. There are only 5 % of whiny little bastards who don't benefit from it.

Briefly, if you have cochlear damage (even if you don't notice your hearing damage), regeneration should help your tinnitus. Causes of cochlear damage: noise, ototoxins, infection.

If you have tinnitus due to another cause (e.g.. TMJ, ossicle damage, etc), the drugs wouldn't help but hopefully things like the Susan Shore device will (I must admit I know less about bimodal stimulation in general).