Suicidal

[valeri]

@FGG and @Autumnly are The Governesses of Tinnitus Talk...

 

[dan]

Traditional, yes. Phase 3 tends to be a large study comparing a new drug to existing treatments. I have a hunch this is one reason Frequency emphasizes repeatedly that hearing aids help with loudness only and their drug will help with clarity. It seems like they may be trying to even get it labelled for clarity (though it can be used off label once released).

So this drug does not restore hearing loss and hence cure tinnitus? It's only as a hearing aid enhancement if I understood correct?
If so, what's all the hype about?

 

[high frequencies]

So this drug does not restore hearing loss and hence cure tinnitus? It's only as a hearing aid enhancement if I understood correct?
If so, what's all the hype about?

On the contrary, this drug restores hearing loss and theoretically helps with noise.

 

[serendipity1996]

And on the sets of new troubles and symptoms - earworms. I just can't shake these stupid songs from my head. Affecting my concentration, sleep and what not.
It's like my brain latches on these things and I obsess and obsess and obsess.

Omg I have the exact same things - snippets of songs will just loop and loop in my mind.

 

[FGG]

So this drug does not restore hearing loss and hence cure tinnitus? It's only as a hearing aid enhancement if I understood correct?
If so, what's all the hype about?

No. You misunderstood. The drug restores hearing.

 

[Peter61]

Reading the comments above, I must say I feel your pain and can relate to your suffering very well. My biggest frustration is that this debilitating nerve-wrecking affliction is not given the attention that it deserves, by scientists, biotech and big pharma. There's money in abundance, but they set the wrong priorities. Take for example the Bill & Melinda Gates Foundation. They have huge financial power, but have they EVER talked about tinnitus, let alone funded any tinnitus-research or drug-developing project? Nope. All you hear Bill talk about now is vaccines for Corona, obviously that has suddenly become his main priority. Why is there so much laziness when it comes to collecting funds to sponsor scientific research to find a cure and to find it f.. FAST? Why the lethargy, why the apathy, where's the energy, the aggressiveness to finally get things done and provide people FINALLY with a cure?

 

[Sevv]

Omg I have the exact same things - snippets of songs will just loop and loop in my mind.

I had it too, but it stopped when my anxiety of hearing my tone stopped. I still have thoughts going on nearly constantly (distracts me from hearing my tinnitus) but these thoughts are just a distraction. I just accept them and don't give them further thought.

 

[martin81]

Can't. Too hard. Got worse.

I'm 3 months in buzzing in my head with reactive tinnitus.

 

[RishRamsey]

Omg I have the exact same things - snippets of songs will just loop and loop in my mind.

So I don't get these often. But since tinnitus and hyperacusis, I worry and obsess about things too easily.
So it started 48 hours ago when I was going to bed and I freaked out that what if it doesn't stop. So I went to sleep and it was the first thing I checked when i woke up that has it stopped.
And I came right after. Because I checked.
And I just can't get it out. Tinnitus/hyperacusis fucked my brain.

 

[ASilverLight]

I'm nearing the 4 month mark and I've hardly had any real improvement. One ear is feeling really clogged again, I'm still dealing with a cold or congestion for whatever reason. I'm so tired of not making any progress and not healing. I know I need to be patient but it's really hard to be positive when nothing is improving.

 

[Capstan]

So I don't get these often. But since tinnitus and hyperacusis, I worry and obsess about things too easily.
So it started 48 hours ago when I was going to bed and I freaked out that what if it doesn't stop. So I went to sleep and it was the first thing I checked when i woke up that has it stopped.
And I came right after. Because I checked.
And I just can't get it out. Tinnitus/hyperacusis fucked my brain.

Are you thinking about the song - stuck in your head - or are you hearing it replay inside your tinnitus / ears?

 

[RishRamsey]

I had it too, but it stopped when my anxiety of hearing my tone stopped. I still have thoughts going on nearly constantly (distracts me from hearing my tinnitus) but these thoughts are just a distraction. I just accept them and don't give them further thought.

Yess. So when my tinnitus started, I obsessed over it 24x7 for a year, even when i not heard it I would check for it, and my anxiety was always there. Then my hyperacusis got to severe levels and my tinnitus kind of took the back seat. It was like I wasn't anxious about it anymore. It wasn't the first thing I checked for when I woke up.
I basically had to distract myself all day so I wouldn't try to hear it. And I couldn't relax mentally for a minute. But with hyperacusis I did relax mentally, not physically because of the pain.

Now it looks like I am back to square one due to these earworms. I need to distract myself from video games, TV shows all day to ignore those songs in my head and I can't fucking relax anymore and everytime I don't hear them in my head and I am like that's nice they come right back.

Do you have any tips as to how to stop them, or the process of stopping that happened in your case?

 

[RishRamsey]

Are you thinking about the song - stuck in your head - or are you hearing it replay inside your tinnitus / ears?

In my head. Thinking. Playing. Continously aaaaaghhh it's mentally draining.

 

[Orions Pain]

Do you guys think it's worse to live in a poor country and be in poverty conditions, or live an "average" life in a 1st world country but have a disorder which limits you from pretty much every activity people in society enjoy and constantly be taunted by it all?

 

[Sevv]

Yess. So when my tinnitus started, I obsessed over it 24x7 for a year, even when i not heard it I would check for it, and my anxiety was always there. Then my hyperacusis got to severe levels and my tinnitus kind of took the back seat. It was like I wasn't anxious about it anymore. It wasn't the first thing I checked for when I woke up.
I basically had to distract myself all day so I wouldn't try to hear it. And I couldn't relax mentally for a minute. But with hyperacusis I did relax mentally, not physically because of the pain.

Now it looks like I am back to square one due to these earworms. I need to distract myself from video games, TV shows all day to ignore those songs in my head and I can't fucking relax anymore and everytime I don't hear them in my head and I am like that's nice they come right back.

Do you have any tips as to how to stop them, or the process of stopping that happened in your case?

I got to the point where I thought that listening to my tinnitus would be less taxing than listening to those earworms. But I believe that distraction is necessary to really get used to tinnitus that isn't readily masked by everyday sounds.
But I have to be clear, our situations seem very different. I barely have hyperacusis and my tinnitus is far from the worst out there (mild-moderate) and I'm going well on the track of habituation. If I had severe hyperacusis my anxiety would probably be uncontrollable leading to anxiety-induced symptoms, of which the earworms might be part of.

 

[RishRamsey]

I got to the point where I thought that listening to my tinnitus would be less taxing than listening to those earworms. But I believe that distraction is necessary to really get used to tinnitus that isn't readily masked by everyday sounds.
But I have to be clear, our situations seem very different. I barely have hyperacusis and my tinnitus is far from the worst out there (mild-moderate) and I'm going well on the track of habituation. If I had severe hyperacusis my anxiety would probably be uncontrollable leading to anxiety-induced symptoms, of which the earworms might be part of.

So I am used to hearing my tinnitus, and really don't get anxiety over my tinnitus now (most, if not all of the time). And I really don't mind hearing my tinnitus over earworms. But I don't know how to do that.

How to hear my tinnitus over those shitty songs.

My anxiety is not uncontrollable for my ear symptoms - It just that I remembered a song, and then got anxiety that what if it doesn't stop. Because it was a new experience. And I checked if it had stopped or not the next day I woke up and bang. So basically I am not able to forget about it.

 

[PeteJ]

2-5 years seems to be what most people think and I don't see any reason to disagree with that. Possibly on the shorter end of that especially depending on if the FDA will allow skipped phases.

I predict Frequency, for example, will definitely have a phase 2b but the FDA might allow skipping phase 3 because there is no "standard of care" to compare the drug to and they are treating something with high morbidity. And if they ramp up manufacturing before release, it's also possible they would allow expanded/compassionate use even earlier.

I don't know much about the European approval process, so it's possible Audion could come out first, but their method results in retrofitted support cells becoming "hair cell like" cells and I am not sold on their method vs. Frequency's personally (but would love to be proven wrong here) which produces equivalent hair cells.

Synaptopathy drugs also seem to be in the same time frame.

What does that mean? Will it help with loud tinnitus?

 

[PeteJ]

Do you guys think it's worse to live in a poor country and be in poverty conditions, or live an "average" life in a 1st world country but have a disorder which limits you from pretty much every activity people in society enjoy and constantly be taunted by it all?

I would rather live with no ear problems meaning no loud tinnitus or hyperacusis - life conditions and poverty would still be bad but as long as there's no tinnitus, then I would take anything. That's how loud it is.

 

[PeteJ]

@Peter61

Because those are evil people you're talking about. I am serious.

 

[PeteJ]

No. You misunderstood. The drug restores hearing.

What else? If it doesn't affect or reduce tinnitus, then any hype should only be for people with normal ears - i.e. those without tinnitus.

 

[Kriszti]

What else? If it doesn't affect or reduce tinnitus, then any hype should only be for people with normal ears - i.e. those without tinnitus.

If I don't misunderstand, the basic idea of regenerative medicine and tinnitus is that FX-322 and the the other drugs primarily aim to restore hearing by regenerating hair cells (if the supporting cells are not dead), but because then the brain will get input on the lost frequencies as well, hopefully it will stop synchronizing the phantom sounds. It should help people whose tinnitus originated from damaged hair cells.

 

[FGG]

What else? If it doesn't affect or reduce tinnitus, then any hype should only be for people with normal ears - i.e. those without tinnitus.

Tinnitus for the majority of people (exceptions are for things like TMJ) are cochlear in origin. If you damage the cochlea, tinnitus is like a "phantom limb syndrome" in the brain but with sound. Please read the threads in the research section for more information.

Restoring the cochlea is analogous to what would happen if you were able to regrow a limb in people with "phantom limb pain," which is that the brain would stop the hyperactivity related maladaption to the lost input. We have proof in this concept with mirror therapy for phantom limb pain and per the Hough Ear Institute (and Kopke's Tinnitus Talk Podcast), this concept applies to the ear, too. Justin from Hough has said flat out that they know their synapse restoration drug works for tinnitus from phase 1.

Frequency has also added tinnitus measures to their trial after phase 1 (which is very telling) and agreed to do a podcast with Tinnitus Talk. They have testimonials that we don't. They *clearly* believe their drug works for tinnitus too or the optics of that would look terrible and the concept is neurologically sound when you consider that researchers widely agree that tinnitus is akin to "phantom limb".

It summary, it should definitely treat tinnitus of *cochlear origin* (which is the majority of tinnitus). If you restore input (whether it was lost from hair cell or synapse, etc) and you will restore the signal to the brain and the maladaptive plasticity will start to respond to the correct stimuli (i.e. no tinnitus)

Note: Your individual case may not fit this, @PeteJ. You have a lot of facial pain symptoms that may better fit with TMJ/facial neuralgia etc. I would at least rule that stuff out before looking into cochlear regeneration drugs.

Things like: noise, ototoxins and age are cochlear in origin though.

Things like: otosclerosis, TMJ, neck injury etc are not.

These drugs will not effect the later because they aren't treating the underlying cause but will effect the former. Things like TMJ can be treated now though.

 

[Kriszti]

@FGG
Do you think that any other current research will help tinnitus caused by otosclerosis? Because the pathogenesis is absolutely unclear, it might be caused by inner ear issues. Surgery is not a solution for tinnitus. Or are otosclerosis patients basically even more screwed than other types of tinnitus sufferers?

 

[PeteJ]

Tinnitus for the majority of people (exceptions are for things like TMJ) are cochlear in origin. If you damage the cochlea, tinnitus is like a "phantom limb syndrome" in the brain but with sound. Please read the threads in the research section for more information.

Restoring the cochlea is analogous to what would happen if you were able to regrow a limb in people with "phantom limb pain," which is that the brain would stop the hyperactivity related maladaption to the lost input. We have proof in this concept with mirror therapy for phantom limb pain and per the Hough Ear Institute (and Kopke's Tinnitus Talk Podcast), this concept applies to the ear, too. Justin from Hough has said flat out that they know their synapse restoration drug works for tinnitus from phase 1.

Frequency has also added tinnitus measures to their trial after phase 1 (which is very telling) and agreed to do a podcast with Tinnitus Talk. They have testimonials that we don't. They *clearly* believe their drug works for tinnitus too or the optics of that would look terrible and the concept is neurologically sound when you consider that researchers widely agree that tinnitus is akin to "phantom limb".

It summary, it should definitely treat tinnitus of *cochlear origin* (which is the majority of tinnitus). If you restore input (whether it was lost from hair cell or synapse, etc) and you will restore the signal to the brain and the maladaptive plasticity will start to respond to the correct stimuli (i.e. no tinnitus)

Note: Your individual case may not fit this, @PeteJ. You have a lot of facial pain symptoms that may better fit with TMJ/facial neuralgia etc. I would at least rule that stuff out before looking into cochlear regeneration drugs.

Things like: noise, ototoxins and age are cochlear in origin though.

Things like: otosclerosis, TMJ, neck injury etc are not.

These drugs will not effect the later because they aren't treating the underlying cause but will effect the former. Things like TMJ can be treated now though.

I thought you would say all this but what about all the people here who *claim* they have a normal hearing test i.e. no significant hearing loss but they have tinnitus (unclear to me of their tinnitus volume or level of intrusiveness e.g. one tone, multiple tones, hiss etc.).

 

[PeteJ]

Tinnitus for the majority of people (exceptions are for things like TMJ) are cochlear in origin. If you damage the cochlea, tinnitus is like a "phantom limb syndrome" in the brain but with sound. Please read the threads in the research section for more information.

Restoring the cochlea is analogous to what would happen if you were able to regrow a limb in people with "phantom limb pain," which is that the brain would stop the hyperactivity related maladaption to the lost input. We have proof in this concept with mirror therapy for phantom limb pain and per the Hough Ear Institute (and Kopke's Tinnitus Talk Podcast), this concept applies to the ear, too. Justin from Hough has said flat out that they know their synapse restoration drug works for tinnitus from phase 1.

Frequency has also added tinnitus measures to their trial after phase 1 (which is very telling) and agreed to do a podcast with Tinnitus Talk. They have testimonials that we don't. They *clearly* believe their drug works for tinnitus too or the optics of that would look terrible and the concept is neurologically sound when you consider that researchers widely agree that tinnitus is akin to "phantom limb".

It summary, it should definitely treat tinnitus of *cochlear origin* (which is the majority of tinnitus). If you restore input (whether it was lost from hair cell or synapse, etc) and you will restore the signal to the brain and the maladaptive plasticity will start to respond to the correct stimuli (i.e. no tinnitus)

Note: Your individual case may not fit this, @PeteJ. You have a lot of facial pain symptoms that may better fit with TMJ/facial neuralgia etc. I would at least rule that stuff out before looking into cochlear regeneration drugs.

Things like: noise, ototoxins and age are cochlear in origin though.

Things like: otosclerosis, TMJ, neck injury etc are not.

These drugs will not effect the later because they aren't treating the underlying cause but will effect the former. Things like TMJ can be treated now though.

My tinnitus "trigger" was noise or acoustic trauma. I don't know why I have ear pain though. I don't think potential tmj is causing the tinnitus but is happening 'after the fact' - my theory. I believe acoustic trauma and possibly physical trauma is the cause. I think I have physical damage but I don't know if it has any significant factor or influence for my tmj-like symptoms.

Also, I don't have facial pain per se. It's the tissue or muscle directly attached to the ear and stops there. The pain is mostly in that area close to the ear.

 

[FGG]

@FGG
Do you think that any other current research will help tinnitus caused by otosclerosis? Because the pathogenesis is absolutely unclear, it might be caused by inner ear issues. Surgery is not a solution for tinnitus. Or are otosclerosis patients basically even more screwed than other types of tinnitus sufferers?

I think bimodal stimulation has the most potential there because you can "trick" the brain into thinking it is getting a psuedo-restored signal analogous to mirror therapy for Phantom Limb.

Lenire was pretty underwhelming, but the concept is there. It's clear Lenire affects tinnitus, they just haven't figured out how to do it in a consistently positive way where Susan Shore, for instance, seems to be much more rigorous.

 

[FGG]

I thought you would say all this but what about all the people here who *claim* they have a normal hearing test i.e. no significant hearing loss but they have tinnitus (unclear to me of their tinnitus volume or level of intrusiveness e.g. one tone, multiple tones, hiss etc.).

A normal standard audiogram is pretty low information. If tinnitus was noise induced, it is from cochlear trauma even if the damage is too high frequency or just in the synapses so you don't perceive the hearing loss yourself.

Noise does not cause brain damage, the damage is cochlear.

Edit: it's also possible to have damage at a "notch". A standard audiogram is not a sweep test, they just pick a few frequencies to test your overall hearing for monitoring of loss with chronic disease and for hearing aid fitting. It is wholly lacking for assessing cochlear pathology but researchers are working on better diagnostics too.

 

[Kriszti]

I thought you would say all this but what about all the people here who *claim* they have a normal hearing test i.e. no significant hearing loss but they have tinnitus (unclear to me of their tinnitus volume or level of intrusiveness e.g. one tone, multiple tones, hiss etc.).

Standard hearing test is limited. It only examines hearing at certain frequencies. You can have a perfect hearing test and still have damage on other frequencies not shown on the audiogram.

 

[Contrast]

The VA would have known this earlier ya think... considering how many vets have tinnitus.

The failure to recognize HHL and noise induced pain shows they don't actually care about vets.

 

[Harley]

If I don't misunderstand, the basic idea of regenerative medicine and tinnitus is that FX-322 and the the other drugs primarily aim to restore hearing by regenerating hair cells (if the supporting cells are not dead), but because then the brain will get input on the lost frequencies as well, hopefully it will stop synchronizing the phantom sounds. It should help people whose tinnitus originated from damaged hair cells.

One of the things which concerns me (and which I never see people talking about) is affordability, if such pill indeed arrives to the market at some point.

I'm thinking, that logically the treatment course will have to be priced several times higher, than the most expensive hearing aids in existence (at the very least), because being able to regenerate one of the main human senses would most likely be one of the biggest events (if not the biggest event) in the modern medical history and the price tag would reflect on this accordingly.
Otherwise their business model wouldn't make much sense.

Being that most severe tinnitus sufferers had been all but destroyed financially, I would hate to see a situation in which only the ultra rich can afford this treatment, as it could easily reach into the 6 figures.
Personally, not being able to afford the cure would be probably feel even worse that not having one available in the first place.
But my gut feeling tells me this could indeed be the case.

Does anyone have any info in regards to the pricing of these drugs?

Here is when some sort of government assistance should be in place, but being that tinnitus is still considered to be only a minor nuisance (thanks to all the decades of lies and misinformation from the pro-habituation crowd), I can't really see anything like that taking place.