I'm Sorry, Everyone. I'm Not Weak and This Isn't Suicide, There Was No Other Way to Hear Silence.

[Bill Bauer]

What potential treatments are possibly coming this month?

First, read
https://www.tinnitustalk.com/members/kelpiemsp.30530/#profile-post-13948

It is my understanding that he is a participant in a trial of a similar device (Frequency Theraputic?) to the one that might be released this month.

The device is Neuromod (MuteButton). There are also other treatments in the pipeline. Check them out below.

Hearing Regeneration Trials

Spoiler

• Frequency Therapeutics - FX-322
  • in Phase 1.5 (Results: December 2018)
  • Phase 2 (begin 2019)
• Audion / Regain Trial
  • Phase 1/2 ongoing in the UK
• Genvec / Novartis - CGF166
  • Phase 1/2 ongoing

Trials to begin in 2019 / Things to look out for in 2019

Spoiler

• Neuromod (MuteButton)
  • launching their new device in January 2019 starting in Ireland, then Europe, then the US
  • results of their latest trial: 1H2019
• Xenon Pharma - XEN-1101
  • Phase 2, expected to wrap up in 2nd quarter 2020
• Frequency Therapeutics
  • Phase 2
• Otonomy
  • 1H19: OTO-313 (reduce tinnitus) Phase 1/2
  • 1H19: OTO-413 (repairing synaptic damage) Phase 1/2
  • OTO-6XX (hair cell regeneration)
    • 2H18: candidate selection
    • 2019: Phase 1/2
• University of Minnesota (device for tinnitus)
  • Phase 3 ?
• University of Michigan (device for tinnitus)
  • perhaps updates on their currently ongoing trial
  • Estimated Primary Completion Date: September 2022
  • Estimated Study Completion Date: January 2023

 

[Bill Bauer]

If I knew real treatment for H (T too but especially H) were coming in the near future my suicidalness would drop quite a bit.

H tends to go away, so wait a year or two and it will likely be gone.

 

[hans799]

If I knew real treatment for H (T too but especially H) were coming in the near future my suicidalness would drop quite a bit.

In addition to @Bill Bauer 's objective lists, two subjective items to give you hope: two of our members (kelpiemsp and Clare B) have taken part in bimodal device clinical trials (kelpie was in the University of Minnesota's trial, while Clare B was in Neuromod's) and their tinnitus has reduced to the point of silence.

Anecdotal evidence, yes, but reading the testimony of an actual human being is a lot more powerful than reading that 80% of Neuromod's 500 patients have shown improvement in their study. If you're interested, check out the Neuromod thread where Clare B has posted extensively, starting with this post.

The cavalry is almost here, my friend. Duke it out for a few more months, it would be pointless to give up now.

 

[Julien87]

Not wearing a seatbelt does not mean you will die in a car accident.

Since you apparently like analogies, it's not because someone not wearing a belt dies in a car accident that you will die too if you don't buckle your seatbelt.
What you said is simply not true. Worsening is NOT the only possible outcome, as TLion outlined. Even for people who don't play it safe - I do recommend to play it safe though, at least when it comes to avoiding very loud venues, because some behaviours will have no impact for one person but will have disastrous consequences for another person.

I also know several people who prove you wrong. We are all different, the risks are not the same for everyone. Some of us will even crash while wearing the seatbelt. But even in a case of crash, there is hope for a better tomorrow, I believe.

 

[Rojo]

In addition to @Bill Bauer 's objective lists, two subjective items to give you hope: two of our members (kelpiemsp and Clare B) have taken part in bimodal device clinical trials (kelpie was in the University of Minnesota's trial, while Clare B was in Neuromod's) and their tinnitus has reduced to the point of silence.

Anecdotal evidence, yes, but reading the testimony of an actual human being is a lot more powerful than reading that 80% of Neuromod's 500 patients have shown improvement in their study. If you're interested, check out the Neuromod thread where Clare B has posted extensively, starting with this post.

The cavalry is almost here, my friend. Duke it out for a few more months, it would be pointless to give up now.

Hyperacusis is the reason my life is over and I want to kill myself. This doesn't sound like an hyperacusis cure.

 

[Bill Bauer]

Since you apparently like analogies, it's not because someone not wearing a belt dies in a car accident that you will die too if you don't buckle your seatbelt.

I don't understand your analogy, and how it disproves what he was trying to say. His point was that doing certain things (not wearing a seat belt, "living your life" and not playing it safe when one has T) changes the probability of a bad outcome, while not guaranteeing a bad outcome.

Worsening is NOT the only possible outcome, as TLion outlined.

When you don't wear your seatbelt, a car crush is not the only possible outcome. Another possible outcome is that over the next year you always arrive at your destination safe, while feeling invincible and cool. What had changed are the probabilities of those outcomes.

Hyperacusis is the reason my life is over and I want to kill myself.

Hyperacusis goes away on its own given time a lot more often than tinnitus. There is no need for a cure - you just need to give it time (a lot of it).

 

[Rojo]

Hyperacusis goes away on its own given time a lot more often than tinnitus. There is no need for a cure - you just need to give it time (a lot of it).

I feel like I have a lot of possible compounding/underlying factors, have suffered a lot of setbacks, and just continually get worse. After four months of that, it's hard to see the trend turning around. In the meantime the suffering grows. I'm trying to hang in there. But hope feels at a premium and I am so totally disabled without ability to live in any way, it's hard not to just feel like it's time.

I really wonder if maybe I should be pushing myself instead, or when I should start doing that. Just say fuck it, plug my ears, and go out. Go to the gym and get exercise. Go out and join a class, yoga or tai chi or something. Just stop thinking that I MUST just sit here in as close to silence as I can perpetually. Maybe I really do need more noise, and not to hide from it. Maybe doing that will stimulate my mind and body to actually adapt.

Guess it's something to try if I ever feel I'm at rock bottom and going to kill myself. I should also try just fucking cutting my TTTS muscle. I feel like it's contributing more to the ear pain and discomfort than anything; I can almost always feel it down into my throat when it's pulling and getting uncomfortable, it spasms audibly constantly, and the pain I feel in the ear canal and in my face is consistent with "trigeminal irritation from TTTS". Do you think if I could find an ENT willing to try botoxing or just cutting it, a bunch of my symptoms might stop?

 

[Bill Bauer]

After four months of that, it's hard to see the trend turning around.

Four months is a relatively short time, as far as ears healing is concerned. Normally, one would be barely able to notice a small difference after waiting for months.

I really wonder if maybe I should be pushing myself instead, or when I should start doing that. Just say fuck it, plug my ears, and go out. Go to the gym and get exercise. Go out and join a class, yoga or tai chi or something. Just stop thinking that I MUST just sit here in as close to silence as I can perpetually. Maybe I really do need more noise, and not to hide from it. Maybe doing that will stimulate my mind and body to actually adapt.

If you do the above, I hope you will do it gradually. Try going out for half an hour and then slowly increase the time of exposure.

Guess it's something to try if I ever feel I'm at rock bottom and going to kill myself.

Makes sense.

Do you think if I could find an ENT willing to try botoxing or just cutting it, a bunch of my symptoms might stop?

I don't have any medical background (what I know about T is a result of me reading this forum over the past 23 months, and I don't recall ever reading about anyone doing the above). It doesn't sound like too many US or European doctors will be willing to do this procedure. If one of them refuses, you might ask them about the possible complications/negative side effects/risks of such a procedure. If you find those to be acceptable, you could then try to find a doctor in Mexico or India to carry out the procedure...

 

[Julien87]

I don't understand your analogy, and how it disproves what he was trying to say. His point was that doing certain things (not wearing a seat belt, "living your life" and not playing it safe when one has T) changes the probability of a bad outcome, while not guaranteeing a bad outcome.

He said "It can only get worse. There's your answer. Whichever path you choose you will get fucked anyway.". It is not true. And the analogy is as follows: it's not because a car accident happens to someone in specific circumstances that it will happen to you too if you are in the same circumstances (i.e. you don't have 100% chances of having an accident, even when your behaviour is the same). There are several possible outcomes whether you buckle the seatbelt or not, not one.

Of course it's better to take less risks if possible, we'll all agree on that. The key is to identify what is risky for oneself and what is not.
Saying that it can only get worse is ignorance.

 

[3ri0w]

Jemina: how are you doing?

 

[Bill Bauer]

He said "It can only get worse. There's your answer. Whichever path you choose you will get fucked anyway.". It is not true.

I agree with you.

 

[Agrajag364]

@Jemina, how are you now?

 

[jasonbourne]

I agree with you.

Serious question; the hair cells in the cochlea cannot heal, so tinnitus cannot physically get better, it can only vary within certain parameters (ignoring physical damage) depending on stress and anxiety, we agree at this point right?

So explain to me how tinnitus isn't a progressive condition when no healing is happening and we are constantly bombarded with loud sounds slowly damaging our hearing. It's like walking on a broken leg that cannot heal.

I mean, if you sat at home all day with a broken leg then it wont get worse, but what kind of a life is that? I guess you could still go outside hopping on one leg using crutches, but nothing is stopping random events from deteriorating the damaged leg.

The best result ignoring a cure is static tinnitus with extreme careful behavior, however I advised in my other post that balance is key for the sake of sanity, but with balance the price is that it still does indeed progress.

Also I'm sick and tired of people posting their "friends as proof" that tinnitus can get better. Anyone can lie on the internet and probably do to give others hope.

Also regarding the MuteButton thing coming out, it may work, but it reminds me of the hyperhydrosis electricity treatment I used to do. Only lasted a little bit with a positive effect that decrease rapidly with time thus the effort simply wasn't worth it. Regarding MuteButton, imagine spending one hour a day listening to beeping and being zapped only for it to return to normal severity while chilling at the pub with mates hours later.

edit* the reason why people with tinnitus are so vulnerable to sound is because we are walking on eggshells. People are allowed to lose a certain amount of hearing without the tinnitus being noticeable throughout their life, but we have fast-tracked to beyond that post.

It's a numbers game really. We don't have that many healthy hair cells left.

Imagine someone going bald with a head of thick hair vs someone going bald who already had wispy thin hair since birth. The latter will look bald much quicker due to having less hairs to begin with to mask the progress.

 

[Bill Bauer]

Serious question; the hair cells in the cochlea cannot heal, so tinnitus cannot physically get better, it can only vary within certain parameters (ignoring physical damage) depending on stress and anxiety, we agree at this point right?

Since people get over tinnitus all of the time, and since people's T fades all of the time, we Disagree at this point. Not everyone who has damage to the inner ear and hearing loss develops tinnitus. Tinnitus is created in the brain, not in the ear. Brain is plastic - it can change, and for some people apparently it can heal as far as T is concerned.

So explain to me how tinnitus isn't a progressive condition when no healing is happening and we are constantly bombarded with loud sounds slowly damaging our hearing. It's like walking on a broken leg that cannot heal.

The above might be true for hearing loss, but again, T is neurons being stuck in a weird feedback loop, and the brain can rewire itself.

I mean, if you sat at home all day with a broken leg then it wont get worse, but what kind of a life is that?

Just because it might not be a good idea to be around loud music (especially live music), doesn't mean that your life has to be that of a prisoner in a cell.

The best result ignoring a cure is static tinnitus with extreme careful behavior

Have you seen the studies linked to in
https://www.tinnitustalk.com/threads/spontaneous-recovery-stats-many-recover-3-studies.21441/
As you can see, many people recover from tinnitus. So the best that can happen is that you get to hear silence again. The second best is that it will fade so that you can hear it only in quiet rooms.

balance is key for the sake of sanity

Just because it might not be a good idea to visit loud restaurants, and movie theaters, doesn't mean that you have to go insane as a result of boredom.

Anyone can lie on the internet and probably do to give others hope.

In addition to the anecdotal evidence, we have peer reviewed studies about the outcomes for T patients.

chilling at the pub with mates hours later.

Yes, if you will value the precious silence you might get so little that you will risk losing it by going to a PUB, then perhaps it is not so precious to you. If T is bothering you, then it wouldn't occur to you to risk getting louder T for the rest of your life as a result of a couple of hours of "fun" (how much fun could it possibly be, if you know that you might have to pay for it for the rest of your life?!) at the pub. If it isn't bothering you, then why do you care about the possible cure. I simply don't understand the logic behind your actions and plans.

People are allowed to lose a certain amount of hearing without the tinnitus being noticeable throughout their life, but we have fast-tracked to beyond that post.

That explanation actually hasn't occurred to me. It makes a lot of sense. Thank you for sharing this.

 

[jasonbourne]

Since people get over tinnitus all of the time, and since people's T fades all of the time, we Disagree at this point. Not everyone who has damage to the inner ear and hearing loss develops tinnitus. Tinnitus is created in the brain, not in the ear. Brain is plastic - it can change, and for some people apparently it can heal as far as T is concerned.

The above might be true for hearing loss, but again, T is neurons being stuck in a weird feedback loop, and the brain can rewire itself.

Just because it might not be a good idea to be around loud music (especially live music), doesn't mean that your life has to be that of a prisoner in a cell.

Have you seen the studies linked to in
https://www.tinnitustalk.com/threads/spontaneous-recovery-stats-many-recover-3-studies.21441/
As you can see, many people recover from tinnitus. So the best that can happen is that you get to hear silence again. The second best is that it will fade so that you can hear it only in quiet rooms.

Just because it might not be a good idea to visit loud restaurants, and movie theaters, doesn't mean that you have to go insane as a result of boredom.

In addition to the anecdotal evidence, we have peer reviewed studies about the outcomes for T patients.

Yes, if you will value the precious silence you might get so little that you will risk losing it by going to a PUB, then perhaps it is not so precious to you. If T is bothering you, then it wouldn't occur to you to risk getting louder T for the rest of your life as a result of a couple of hours of "fun" (how much fun could it possibly be, if you know that you might have to pay for it for the rest of your life?!) at the pub. If it isn't bothering you, then why do you care about the possible cure. I simply don't understand the logic behind your actions and plans.


That explanation actually hasn't occurred to me. It makes a lot of sense. Thank you for sharing this.

You misunderstood a lot of my points and I'll discuss that later, maybe I wrote it badly. I'll check the studies for now.