Suicidal

[Clare Johnson]

Let me know if you want me to not end it all.

If you care.

All it's gotten is worse over 3 months. It's now severe.

I want to live if enough people tell me they need me.

 

[ajc]

Let me know if you want me to not end it all.

If you care.

All it's gotten is worse over 3 months. It's now severe.

I want to live if enough people tell me they need me.

Struggle is real, keep living.

 

[Tweedleman]

Let me know if you want me to not end it all.

If you care.

All it's gotten is worse over 3 months. It's now severe.

I want to live if enough people tell me they need me.

We are here for you, suffering in misery as well. Shoot me a message if you need to vent.

 

[dan]

Let me know if you want me to not end it all.

If you care.

All it's gotten is worse over 3 months. It's now severe.

I want to live if enough people tell me they need me.

How do you know it's severe?

 

[Clare Johnson]

@dan on my own personal rating scale I would say it is .

 

[Juan]

Are you trolling? Some of these hearing regeneration treatments are in clinical trials at the moment.

Obviously they are not in major hospitals yet because they're being trialed on humans.

That's the same story we have been hearing for like 30 years... come on...

 

[MrCrybaby]

That's the same story we have been hearing for like 30 years... come on...

That's not the same story. These treatments are being trialled on humans and WORKING. It's no longer a matter of "a cure is coming in 5-10 years" it's a matter of "[specific drug] is in phase 2 and could make it to market in 3-5 years". Read the research section, cool stuff.

 

[dan]

That's not the same story. These treatments are being trialled on humans and WORKING. It's no longer a matter of "a cure is coming in 5-10 years" it's a matter of "[specific drug] is in phase 2 and could make it to market in 3-5 years". Read the research section, cool stuff.

Autifony Therapeutics reached phase 3 and was never heard of again...

 

[PeteJ]

I wish I could smash my head in or something. The ringing and buzzing is way worse than 10/10 severity.

I feel like I will try hanging or jumping off a building some time.

I guess I have to try to join a suicide site again. I can't stand this.

 

[xyz]

That's not the same story. These treatments are being trialled on humans and WORKING. It's no longer a matter of "a cure is coming in 5-10 years" it's a matter of "[specific drug] is in phase 2 and could make it to market in 3-5 years". Read the research section, cool stuff.

These hearing regeneration drugs are primarily targeted at hearing loss and they could also benefit tinnitus. This FX-322 has shown T improvement in a small trial as I understood. But other drugs have done the same and failed later. So certainly there is no certainty. But as the Bimodal stimulation approach has gone down the river (lets wait for official figures in April), this will be our next best bet.

 

[FGG]

These hearing regeneration drugs are primarily targeted at hearing loss and they could also benefit tinnitus. This FX-322 has shown T improvement in a small trial as I understood. But other drugs have done the same and failed later. So certainly there is no certainty. But as the Bimodal stimulation approach has gone down the river (lets wait for official figures in April), this will be our next best bet.

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.

 

[dan]

I wish I could smash my head in or something. The ringing and buzzing is way worse than 10/10 severity.

I feel like I will try hanging or jumping off a building some time.

I guess I have to try to join a suicide site again. I can't stand this.

Do you hear it loudly outside?

 

[PeteJ]

Do you hear it loudly outside?

Yes, I do. It's so loud, it seems like an outside or external noise (ringing and buzzing sound is the only way I can describe it). I don't know if that makes sense but that's what it seems like to me. I used to describe it as 'similar to hearing cicadas outside. '

 

[dan]

Yes, I do. It's so loud, it seems like an outside or external noise (ringing and buzzing sound is the only way I can describe it). I don't know if that makes sense but that's what it seems like to me. I used to describe it as 'similar to hearing cicadas outside. '

Can you try externalize it then... tell your mind it's not coming from your head... and it will be easier to habituate. Imagine you live on a field with crickets and cicada trees...
Once your mind stops perceiving this noise as a threat, it will begin to ignore it...
Work on your reaction first... then, your perception will follow.
This is basically a TRT method.

Right now, you are in fight or flight mode. Since you cannot fight and win, and you cannot escape either, your mind has no solution to the problem.

If, you convince your mind, the noise is a background noise, it will then put it in the background as well.

 

[threefirefour]

That's the same story we have been hearing for like 30 years... come on...

 

[Sevv]

Can you try externalize it then... tell your mind it's not coming from your head... and it will be easier to habituate. Imagine you live on a field with crickets and cicada trees...
Once your mind stops perceiving this noise as a threat, it will begin to ignore it...
Work on your reaction first... then, your perception will follow.
This is basically a TRT method.

Right now, you are in fight or flight mode. Since you cannot fight and win, and you cannot escape either, your mind has no solution to the problem.

If, you convince your mind, the noise is a background noise, it will then put it in the background as well.

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.

 

[Mathew Gould]

That's not the same story. These treatments are being trialled on humans and WORKING. It's no longer a matter of "a cure is coming in 5-10 years" it's a matter of "[specific drug] is in phase 2 and could make it to market in 3-5 years". Read the research section, cool stuff.

Is this a cure for noise trauma induced tinnitus only or for all kinds of tinnitus?

 

[Juan]

View attachment 36242

I think if you have read any of my posts here, you should know I am not precisely an advocate of TRT, which is just bullshit and not even a treatment, but... sorry, I don't buy cheap sci-fi stories of hair cell regeneration either.

 

[MrCrybaby]

Is this a cure for noise trauma induced tinnitus only or for all kinds of tinnitus?

The most promising drugs (there are multiple) currently in trial regenerate the cells and nerves in the cochlea (inner ear).

As such they seem like they will help with tinnitus that results from inner ear damage, which can come from loud noise and ototoxic medications. Noise induced damage is more understood by science, so that tends to be the population looked at in clinical trials.

 

[Sevv]

I think if you have read any of my posts here, you should know I am not precisely an advocate of TRT, which is just bullshit and not even a treatment, but... sorry, I don't buy cheap sci-fi stories of hair cell regeneration either.

If you need futuristic medications that are already among us, see this here: https://en.wikipedia.org/wiki/Onasemnogene_abeparvovec

 

[FGG]

I think if you have read any of my posts here, you should know I am not precisely an advocate of TRT, which is just bullshit and not even a treatment, but... sorry, I don't buy cheap sci-fi stories of hair cell regeneration either.

So you think Frequency's phase 1 results are fraud then? Because, if so, that would make Lucchino another Elizabeth Holmes and the established testing facility in San Antonio would have to have also been in on the fraud and it is way more plausible the drug actually regrows hair cells, just as it did in the ex-planted human cochlea removed during surgery (on a man who had a tumor nearby).

Ie: they saw the hair cells regrow histologically in an intact human cochlea and they have phase 1 results (even with the small safety dose) that corroborates those findings.

If this is all science fiction, it would actually be the greatest coordinated fraud in medical history.

 

[Juan]

If you need futuristic medications that are already among us, see this here: https://en.wikipedia.org/wiki/Onasemnogene_abeparvovec

It sounds great to be injected something dubious into the spinal canal. I think I would rather be very happy to continue with my hyperacusis haha

 

[FGG]

It sounds great to be injected something dubious into the spinal canal. I think I would rather be very happy to continue with my hyperacusis haha

That's a spinal muscular atrophy drug, not for hyperacusus. And I'm positive if you had SMA, you would get a spinal injection. Millions of people get epidural injections a year.

Correction: looks like this drug is IV, the spinal formulation was put on hold but the IV formulation also works. It also looks like the spinal injection is intrathecal not into epidural space.

 

[Kriszti]

Off topic

Recently, two little baby boys in my country got this drug for SMA with community funding, because it's extremely expensive, and one of them is showing serious improvement. (The other one got the treatment much later, I hope he will do better as well.)

On

 

[dan]

That's a spinal muscular atrophy drug, not for hyperacusus. And I'm positive if you had SMA, you would get a spinal injection. Millions of people get epidural injections a year.

Correction: looks like this drug is IV, the spinal formulation was put on hold but the IV formulation also works. It also looks like the spinal injection is intrathecal not into epidural space.

Why are you talking about future drugs on the Suicidal thread???

 

[dan]

Off topic

Recently, two little baby boys in my country got this drug for SMA with community funding, because it's extremely expensive, and one of them is showing serious improvement. (The other one got the treatment much later, I hope he will do better as well.)

On

Off topic belongs in other thread.

 

[dan]

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.

I totally didn't understand how what you said has any relevance. Since you think Dr. Nagler has severe tinnitus, you are totally deluded and any credibility you think you had is gone to shit.

Just to enlighten you on the severity of his tinnitus, according to his own words, his tinnitus loudness match was 6dbSL. Six (6), not 20, not 30 or 60.

I don't even know how they let him give medical advice on tinnitus on this forum... his latest advice to an individual with severe tinnitus was that it's ok to be in a 90dB environment, as long as you stay under 8 hours - because that's what OSHA said is OK. On the one hand this forum can save lives, yet on the other it can kill somebody.

 

[RishRamsey]

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.

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!!!!

 

[FGG]

Why are you talking about future drugs on the Suicidal thread???

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.

 

[threefirefour]

I think if you have read any of my posts here, you should know I am not precisely an advocate of TRT, which is just bullshit and not even a treatment, but... sorry, I don't buy cheap sci-fi stories of hair cell regeneration either.

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?