Suicidal

[FGG]

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.

I believe Hough put their pill treatment at less than the cost of hearing aids. Not sure about Frequency but they could easily charge similar and make a fortune. It's not a rare problem, like Leiber's Congenital Amaurosis where Spark Therapeutics has to charge close to a million dollars for both eyes to recoup their costs.

 

[serendipity1996]

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.

The ear pain could be pain hyperacusis aka 'noxacusis'.

 

[serendipity1996]

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.

I don't see it being cheap but tbh Frequency have consistently emphasised the size of the market they are targeting - hearing loss affects something like 500m people worldwide and from Frequency's presentations I get the impression they will price it accordingly. I can imagine it will be something in the thousands like hearing aids are but doubt they would charge six figures.

 

[Sevv]

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.

When I'm not thinking of anything I still seem to get earworms in the background (I don't give them any thought like tinnitus). It's like my brain has an increased minimum level of activity due to tinnitus. And when I'm not doing anything, it just starts playing earworms.

 

[Harley]

I believe Hough put their pill treatment at less than the cost of hearing aids. Not sure about Frequency but they could easily charge similar and make a fortune. It's not a rare problem, like Leiber's Congenital Amaurosis where Spark Therapeutics has to charge close to a million dollars for both eyes to recoup their costs.

I hope you are right, but one has to also consider the politics at play.

Putting their prices on par with hearing aids manufacturers would place them on a direct collision/confrontation course with a very powerful and influencial multi-billion dollar hearing aid industry, which would stand to lose everything virtually overnight.
This could be a dangerous place to be for the creators of any regenerative treatment.

By placing the prices well above any of that, they would be able to avoid all kinds of headaches and road blocks.

Just my own opinion of course.

 

[FGG]

I hope you are right, but one has to also consider the politics at play.

Putting their prices on par with hearing aids manufacturers would place them on a direct collision/confrontation course with a very powerful and influencial multi-billion dollar hearing aid industry, which would stand to lose everything virtually overnight.
This could be a dangerous place to be for the creators of any regenerative treatment.

By placing the prices well above any of that, they would be able to avoid all kinds of headaches and road blocks.

Just my own opinion of course.

At least in the US, things like CareCredit exist to help pay for otherwise unaffordable medical and dental treatments (for instance people who suddenly need 10k for extensive dental work). I'm sure there are limits (e.g.. they very likely wouldn't fork over a million dollars for Sparks' LCA treatment) and it's super predatory and high interest. However, I would rather deal with a high interest loan while having my life back.

 

[PeteJ]

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.

What about pain from noise? I have had pain come on suddenly after a noise and in which I would bet was due to a certain noise and not TMJ.

 

[PeteJ]

My tinnitus is just screaming in volume. I don't know how to describe it. Is it the usual or due to an ambulance siren? It's hard to tell.

I so fucking hate life.

 

[Lucifer]

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

Omg I have this as well. Sometimes when I hear something my brain would just randomly think I heard a song and then it will loop and loop in my mind. I wonder why this happens.

 

[FGG]

What about pain from noise? I have had pain come on suddenly after a noise and in which I would bet was due to a certain noise and not TMJ.

If it's true noise injury causing pain originating in the cochlea in response to sound that's known as "noxacusis" --which is different from "loudness hyperacusis."

Noxacusis is believed to be a sensitization of a type of neuron in the cochlea know as the "type 2 affererent neurons." Damage to outer hair cells (from noise) causes the cells to leak ATP onto the neurons and this registers as pain.

Here is a good reference on it:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4664349/

Ion channels drugs IMO, seem to be very promising for this type of damage because the now discontinued drug Trobolt seemed to have an effect (it was pulled because it had a lot of dangerous side effects). There are multiple ion channel drugs being studied that effect KCNQ-type potassium channels (check out the Dr. Tzounopoulous thread in the research section) and Nav 1.x channels for blockage of sensitized pain neurons in general. It may just be as simple as regenerating OHCs though.

 

[Lucifer]

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.

I would do the same as well. It's a fucking shit condition that no one takes seriously and think it's a fucking joke. I just hope one day there will be someone famous who advocates about hearing issues because the current advocates have done fuck all.

 

[Lucifer]

At least in the US, things like CareCredit exist to help pay for otherwise unaffordable medical and dental treatments (for instance people who suddenly need 10k for extensive dental work). I'm sure there are limits (e.g.. they very likely wouldn't fork over a million dollars for Sparks' LCA treatment) and it's super predatory and high interest. However, I would rather deal with a high interest loan while having my life back.

So true FGG. I just want my life back. Everyday I am depressed.

 

[Greg Sacramento]

@PeteJ I have not read if you had mentioned the amount of hearing loss that you have. I have read that you once worked in a factory and that you have since been exposed to uncomfortable noise events. This could account for your tinnitus, but your tinnitus could be bullied even more from what I question in paragraph below.

Your ear pain, seems to have different severity levels. You told me that you have high blood pressure and the question is why. Would it be from long term stress, tinnitus stress and stress from physical tension. All this could associate to ear pain - cause or receiver and trigger jaw stress as well. More so if you have noticed that you place your teeth together in any type of movement while sleeping. All of this in this paragraph could also be adding an edge to noise exposure tinnitus.

What do you think?

 

[PeteJ]

@PeteJ I have not read if you had mentioned the amount of hearing loss that you have. I have read that you once worked in a factory and that you have since been exposed to uncomfortable noise events. This could account for your tinnitus, but your tinnitus could be bullied even more from what I question in paragraph below.

Your ear pain, seems to have different severity levels. You told me that you have high blood pressure and the question is why. Would it be from long term stress, tinnitus stress and stress from physical tension. All this could associate to ear pain - cause or receiver and trigger jaw stress as well. More so if you have noticed that you place your teeth together in any type of movement while sleeping. All of this in this paragraph could also be adding an edge to noise exposure tinnitus.

What do you think?

Yes. I have hearing loss. I guess it's moderate as no hearing clinic told me to get a hearing aid. I didn't have this ear pain until after the acoustic trauma although I had physical trauma to one ear about a month before the acoustic trauma. I have ear pain with both ears though. That's why I think it's mostly noise pain but I am guessing.

 

[PeteJ]

If it's true noise injury causing pain originating in the cochlea in response to sound that's known as "noxacusis" --which is different from "loudness hyperacusis."

Noxacusis is believed to be a sensitization of a type of neuron in the cochlea know as the "type 2 affererent neurons." Damage to outer hair cells (from noise) causes the cells to leak ATP onto the neurons and this registers as pain.

Here is a good reference on it:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4664349/

Ion channels drugs IMO, seem to be very promising for this type of damage because the now discontinued drug Trobolt seemed to have an effect (it was pulled because it had a lot of dangerous side effects). There are multiple ion channel drugs being studied that effect KCNQ-type potassium channels (check out the Dr. Tzounopoulous thread in the research section) and Nav 1.x channels for blockage of sensitized pain neurons in general. It may just be as simple as regenerating OHCs though.

How long will it take for these to be available? I need it now.

Normal people can listen to ambulance sirens and normal noise like garbage chutes etc. I can't tell if my current tinnitus volume is a spike or just usual loudness. It's fucking brutal either way. I wish I bought an exit bag. Maybe I should before I am out of money. I fucking hate this.

 

[Lucifer]

How long will it take for these to be available? I need it now.

Normal people can listen to ambulance sirens and normal noise like garbage chutes etc. I can't tell if my current tinnitus volume is a spike or just usual loudness. It's fucking brutal either way. I wish I bought an exit bag. Maybe I should before I am out of money. I fucking hate this.

Frequency Therapeutics and Audion Therapeutics may come out in a couple of years time if their clinical trials allow them to skip phases. Audion has already finished Phase 2 so maybe they could release the drug since there are no alternatives. If that's the case it will be good cause if sufferers are desperate at least there will be Audion Therapeutics which will give them relief. The Audion anecdote has given me hope that it will work with hyperacusis and tinnitus.

 

[Greg Sacramento]

@PeteJ I had discussions with several by PM - over 3000 messages. Most have seen their tinnitus fade. Some had physical problems and ear pain as well. Some still have some physical problems.

 

[FGG]

How long will it take for these to be available? I need it now.

Normal people can listen to ambulance sirens and normal noise like garbage chutes etc. I can't tell if my current tinnitus volume is a spike or just usual loudness. It's fucking brutal either way. I wish I bought an exit bag. Maybe I should before I am out of money. I fucking hate this.

No one knows for sure but 2-5 years are the best estimates imo for when these drugs come out. It could be sooner if the drug companies allow for compassionate/expanded use while their drugs are on trial. Companies that regularly allow compassionate use (for instance: off the top of my head, PTC Therapeutics which doesn't make inner ear drugs) typically have the manufacturing capabilities to do that. It's hard to predict which companies at which stage will reach that point.

What country do you live in? Is it possible for you to get in a clinical trial?

 

[PeteJ]

@PeteJ I had discussions with several by PM - over 3000 messages. Most have seen their tinnitus fade. Some had physical problems and ear pain as well. Some still have some physical problems.

I don't think you read what I last posted?

How many discussions included tinnitus sufferers with the worst kind of tinnitus, unbearably loud with little or only rare fluctuations?

I don't buy the success section here at all. It's mostly mild and some moderate tinnitus people who got used to their tinnitus but it doesn't apply to the loudest cases.

 

[PeteJ]

No one knows for sure but 2-5 years are the best estimates imo for when these drugs come out. It could be sooner if the drug companies allow for compassionate/expanded use while their drugs are on trial. Companies that regularly allow compassionate use (for instance: off the top of my head, PTC Therapeutics which doesn't make inner ear drugs) typically have the manufacturing capabilities to do that. It's hard to predict which companies at which stage will reach that point.

What country do you live in? Is it possible for you to get in a clinical trial?

Canada.

 

[PeteJ]

I think the fucking ambulance caused a spike or whatever this is. I cried out loud last night and it is the same today. I thought it 'went down' somewhat when I woke up but it's back. I don't know how to describe it except as a spike. It's more intrusive and intense if that makes sense. More crazy tones. Worse somehow.

But, I plugged my ears with my fingers as the ambulance went by. That's not good enough?!? It seems like it blocks a lot of sound when you do that????!?

The tinnitus state currently is as bad as I have had it. The last time it was like this, I had dental work done. Seems similar but I can't remember how long it lasted but I was worried it got worse.

I 'rate my t' as 10/10 in severity and volume typically so I am saying it's worse right now. I don't understand as I plugged my ears albeit with my fingers but isn't it way better than just trying to walk away from the sound??? I had no time to insert plugs as the ambulance just showed up and I noticed it too late.

I hate that I need to carry muffs around all the time! I haven't been lately unless I go in my car and I have been exposed to various noises but I have used my plugs or my fingers - or the noise didn't cause any further intrusiveness of the tinnitus.

 

[FGG]

Canada.

Do you happen to live within a few hours of Ann Arbor, Michigan? Ie Windsor, Ontario and surrounding area. Maybe you could be in the Susan Shore device trial. Proximity is a requirement, but I'm not sure nationality would matter.

 

[PeteJ]

Do you happen to live within a few hours of Ann Arbor, Michigan? Ie Windsor, Ontario and surrounding area. Maybe you could be in the Susan Shore device trial. Proximity is a requirement, but I'm not sure nationality would matter.

It would be a long drive.

I hope to be dead before then.

 

[FGG]

It would be a long drive.

I hope to be dead before then.

I believe they actually might still be recruiting now. Anyone else know? I'm not sure what the exact distance requirement is though but I know there is one. Might be worth getting in touch with them.

 

[Contrast]

Anyone who goes to several different specialist only to come up empty handed with no answers (but lots of bills) in my opinion is being clowned on.

That is a very common theme in America.


In non-US the same shit happens but it doesn't cost out of pocket.

 

[Contrast]

Some normie that frequents this forum once told me that Insurance discourages people from complaining about tinnitus. So people are encouraged to stop whining and move on.


Well that user is partially right... People are being pressured so they GTFO it. That's why some people here get locked up in mental facilities and disciplined into acceptance and commitment. It's like bootcamp for people who are suffering.

 

[Ed209]

I think the fucking ambulance caused a spike or whatever this is. I cried out loud last night and it is the same today. I thought it 'went down' somewhat when I woke up but it's back. I don't know how to describe it except as a spike. It's more intrusive and intense if that makes sense. More crazy tones. Worse somehow.

But, I plugged my ears with my fingers as the ambulance went by. That's not good enough?!? It seems like it blocks a lot of sound when you do that????!?

The tinnitus state currently is as bad as I have had it. The last time it was like this, I had dental work done. Seems similar but I can't remember how long it lasted but I was worried it got worse.

I 'rate my t' as 10/10 in severity and volume typically so I am saying it's worse right now. I don't understand as I plugged my ears albeit with my fingers but isn't it way better than just trying to walk away from the sound??? I had no time to insert plugs as the ambulance just showed up and I noticed it too late.

I hate that I need to carry muffs around all the time! I haven't been lately unless I go in my car and I have been exposed to various noises but I have used my plugs or my fingers - or the noise didn't cause any further intrusiveness of the tinnitus.

I really hope things turn around for you, Pete. I know how insanely horrible and depressed you must feel right now, but please give yourself more time to process everything that is happening to you. I remember when I had my MRI and it felt like I was going through a form of PTSD. It nearly destroyed me all over again and I'll never forget how shit I felt. The lowest of the low.

Take care of yourself and try not to work yourself up too much. Tinnitus feeds on our emotions.

 

[PeteJ]

I really hope things turn around for you, Pete. I know how insanely horrible and depressed you must feel right now, but please give yourself more time to process everything that is happening to you. I remember when I had my MRI and it felt like I was going through a form of PTSD. It nearly destroyed me all over again and I'll never forget how shit I felt. The lowest of the low.

Take care of yourself and try not to work yourself up too much. Tinnitus feeds on our emotions.

I don't think it matters. When my tinnitus permanently worsened, I think it was due to a loud noise beyond my control. Whenever I have a spike or my tinnitus seems to become more intrusive somehow, it's following some loud noise in my vicinity. I can't always avoid that and I can't help my reaction to it either. I'm screwed.

 

[PeteJ]

Do you happen to live within a few hours of Ann Arbor, Michigan? Ie Windsor, Ontario and surrounding area. Maybe you could be in the Susan Shore device trial. Proximity is a requirement, but I'm not sure nationality would matter.

Btw, what good is this trial? Aren't they already at some stage of the trial? There are posts and comments about it here and other sites, going on at least a year so far, at least?

 

[LongWait]

Frequency Therapeutics and Audion Therapeutics may come out in a couple of years time if their clinical trials allow them to skip phases. Audion has already finished Phase 2 so maybe they could release the drug since there are no alternatives. If that's the case it will be good cause if sufferers are desperate at least there will be Audion Therapeutics which will give them relief. The Audion anecdote has given me hope that it will work with hyperacusis and tinnitus.

Is that for chronic or acute tinnitus?

I feel today I ain't gonna last another year, with a head ready to explode.