"I Would Not Believe Anyone Who Says That a Cure Is Just Around the Corner"

[attheedgeofscience]

Hey, sorry where is that place where they do such audiograms up to 16 kHz? Is it in Leipzig? That would be really nice to know! Thanks...

• The CHARITÉ hospital does not have the equipment for 0 - 16 kHz (surprisingly).
• Acquaklinik = 0 - 8 kHz (non sound proofed booth).
• University Hospital Leipzig = 0 - 8 kHz (but can perform 0 - 10 kHz; excellent sound proofed facilities).
• Kopfzentrum Leipzig, Landsbergerstr. 4 = 0 - 8 kHz (but can upon request perform 0 - 12,5 kHz; non sound proofed booth).
• Dr. Wilden, Regensburg (now re-located to Ibiza) = 0 - 12,5 kHz (sound proofed booth while located in Germany).

 

[Danny Boy]

I have mild tinnitus like 1-2/10 but i very shitty. I sleep very good i don't have problem like depression or other illness. But i want have 0/10 tinnitus...

We'd all like that, but the way you're wording that will annoy some of the more serious cases of tinnitus, as yours isn't so bad and some people are on the verge of death. So just remember how lucky you are.

 

[attheedgeofscience]

We'd all like that, but the way you're wording that will annoy some of the more serious cases of tinnitus, as yours isn't so bad and some people are on the verge of death. So just remember how lucky you are.

I wonder if there is any particular reason you comment on the same post twice. I realize Trobalt causes amnesia, but still...

 

[Fretux]

• The CHARITÉ hospital does not have the equipment for 0 - 16 kHz (surprisingly).

• Acquaklinik = 0 - 8 kHz (non sound proofed booth).

• University Hospital Leipzig = 0 - 8 kHz (but can perform 0 - 10 kHz; excellent sound proofed facilities).

• Kopfzentrum Leipzig, Landsbergerstr. 4 = 0 - 8 kHz (but can upon request perform 0 - 12,5 kHz; non sound proofed booth).

• Dr. Wilden, Regensburg (now re-located to Ibiza) = 0 - 12,5 kHz (sound proofed booth while located in Germany).

Hey thank you, good information! Looks like they would rather pull a rabbit out of the hat than check if there is some hearing loss around 14 kHz I am pretty new to this forum so I don`t know what was discussed already: is it so hard to get equipment for such a test or are they just not too much interested in checking things like that?

 

[Danny Boy]

I wonder if there is any particular reason you comment on the same post twice. I realize Trobalt causes amnesia, but still...

View attachment 6632

I forgot I commented on that. My bad! And yeah, trobalt does make me very forgetful. I was even forgetting some famous people's names. Very embarrassing.

 

[attheedgeofscience]

is it so hard to get equipment for such a test or are they just not too much interested in checking things like that?

It's for "historical" reasons: audiology is influenced by standards developed since the 1970s, and those standards involve(d) testing only the speech frequency range, 0 - 8 kHz.

 

[Fretux]

It's for "historical" reasons: audiology is influenced by standards developed since the 1970s, and those standards involve(d) testing only the speech frequency range, 0 - 8 kHz.

I see, ok, flower shirts disappeared, standards still here So you were also looking for an audiogram (o-16 kHz) and could not find a place where they do something like that?

 

[Street Spirit]

Word! It is the worst there is. No other ailment gives you 24/7 hell with the prospect of years to come.

That's simply not true.

 

[Nucleo]

is it so hard to get equipment for such a test or are they just not too much interested in checking things like that?

I think they probably aren't interested in that. Hearing aids can be beneficial for hearing loss between 0 to 8000 hz. I'm not aware of any hearing aids technology that can amplify frequencies above 10 khz very well so for of any hearing loss you could have above 8 khz, there is very little they can do about it so the test is essentially meaningless for them.

 

[Fretux]

I think they probably aren't interested in that. Hearing aids can be beneficial for hearing loss between 0 to 8000 hz. I'm not aware of any hearing aids technology that can amplify frequencies above 10 khz very well so for of any hearing loss you could have above 8 khz, there is very little they can do about it so the test is essentially meaningless for them.

thanks, my t makes awful sounds around 14 kHz, that means I propably won`t find out if this is caused by hearing loss in that frequency range...

 

[Cymro41]

I think that the "cure" that people speak of will be preventative . That is for those who have not as yet contracted T. Or perhaps for those who have just had it. People like me who have had it for years are probably stuck with it for the rest of our lives.

 

[Nucleo]

I think that the "cure" that people speak of will be preventative . That is for those who have not as yet contracted T. Or perhaps for those who have just had it. People like me who have had it for years are probably stuck with it for the rest of our lives.

It seems to be what Auris Medical and Otonomy are aiming their efforts at. If it proves effective, then this could be the treatment of choice for tinnitus. Once the rest of us with chronic tinnitus die off, tinnitus will be a non-issue.

 

[Xorthian]

This is like most depressing thread on the board for me. Every time I see this title it feels like I'm going 5 steps backward in my way to being okay with increased T volume I have now.

But as someone mentioned - if this thread is about the cure which means "treatment you do once or couple of times and T is permanently gone no matter acute or chronic" - then yes it probably is very true.

All I really hope for and want in next maybe 5 years is to get any reasonable way to lower T volume with minimal side effects. I can and will habituate to it. I already start to forget about it for hours at times and I dont have strong negative reaction I had even 2 weeks ago.

I do believe in experience of people that took trobalt and that one positive report we got about aut063.

 

[linearb]

That's simply not true.

Yeah... find the worst T sufferer on the planet, then have them go ask someone with CRPS if they want to trade places...

 

[dan]

Yeah... find the worst T sufferer on the planet, then have them go ask someone with CRPS if they want to trade places...

I'd take CRPS anyday....what some chronic pain in my foot? Just chop it off and ur golden.

 

[NiNyu]

@linearb, you only say this cos you don't have killer reactive T. On the one hand, you claim to have enough empathy to understand complex regional pain syndrome patients but at the same time you lack that very empathy when it comes to killer reactive T patients/sufferers.

How come?

It's sad people here make the fallacy not to differentiate. That explains the typical outcry and excuse, 'other issues than T' as soon as some with severe T ends it all. What they don't get is that this **other issues** are merely symptoms of T.

 

[Danny Boy]

@linearb, you only say this cos you don't have killer reactive T. On the one hand, you claim to have enough empathy to understand complex regional pain syndrome patients but at the same time you lack that very empathy when it comes to killer reactive T patients/sufferers.

How come?

It's sad people here make the fallacy not to differentiate. That explains the typical outcry and excuse, 'other issues than T' as soon as some with severe T ends it all. What they don't get is that this **other issues** are merely symptoms of T.

Listen. There are things around the corner and things at the moment. Keppra can get rid of reactive tinnitus, trobalt for tinnitus.

 

[jdjd09]

For a start, let's be specific about what pathology the term "cure" is applied to: hearing loss or tinnitus?

Secondly, let's try to be specific about what is meant by a "cure": does it mean a total reversal of all tinnitus symptoms and full restoration of hearing loss? Remember, most things in medicine are not perfect. As an example, if someone has a broken knee, then, post knee surgery, the condition of the patient will usually not return to 100%. So we shouldn't apply the same standards of perfection to hearing loss and tinnitus, either.

As for when there will be a "cure" - either partial or full - for hearing loss and tinnitus, this could realistically be within the 3-4 years (best case) or within the next 10 years (worst case). Agreed these cures will not be 100% and may not work in all cases, but there will be something available to the "mass market" in the next decade. There is a lot going on in the field of otology; I have previously posted the market analysis information found in the attachment (there are at least 8-9 initiatives at the moment).

As for myself, I have already managed to reverse sensorineural hearing loss of up to 25db, and another stem cell pioneer with more hearing loss than me restored up to 35db of hearing loss. And that's with today's technology. So it all depends how you look at it.

Full restoration of hearing threshold will probably not be available until many years from now. Agreed. But there will be inner ear therapies available in the next decade (to the mass market). The researchers of Stanford are a typical example of the elitist pure researcher; they have no clue what is going on in the real (business) world around them. Just look the attachment below - and I am usually someone who errs on the side of caution.

So, attheedgeofscience (or anyone else knowledgable on this), you seemed very knowledgable on this subject. I have slight hearing loss (40dbs to hear 8khz, I think 6khz was 30dbs, and rest were 20dbs and up). I worry about this big time, being in my 20s I shouldn't be experiencing this.

However, I read your post and got some hope. Seeing you posted this about 2 years ago, do you feel there are any updates or changes in the time frame? Do you feel that a "cure" will still be about 10 years away?


I would appreciate thoughts on this.

 

[Nick Pyzik]

So, attheedgeofscience (or anyone else knowledgable on this), you seemed very knowledgable on this subject. I have slight hearing loss (40dbs to hear 8khz, I think 6khz was 30dbs, and rest were 20dbs and up). I worry about this big time, being in my 20s I shouldn't be experiencing this.

However, I read your post and got some hope. Seeing you posted this about 2 years ago, do you feel there are any updates or changes in the time frame? Do you feel that a "cure" will still be about 10 years away?


I would appreciate thoughts on this.

Now you never really can set a date for new medical treatments with science but all I can say is that there is progress being made with curing hearing loss/tinnitus issues. There are many pharmaceutical type companies working on a cure and display pipelines for the drugs they are working on. I can say that I did talk to a hearing company who is making some good progress with hair cell restoration. I can't give the name of who it is but I did some emailing back and forth with them about 3 months ago and said they not only were developing a tinnitus product that should be out on the market hopefully in 2 years but also were developing a hair cell regenerating drug that would be given right in their office when available in hopefully 4-5 years.

So there are companies out there producing results so that they can be used on humans but the question will always be when will it arrive in it's finest form?

I would have to say there will be drugs available for tinnitus soon but who knows how well they will work. Hair cell regenerating therapies will take much longer. I'm think very close to a decade until they are in a form available for everyone. Stem Cells could take even longer or about a decade. But who knows, I'm just estimating. You just never know when things will change.

 

[jdjd09]

I can't give the name of who it is but I did some emailing back and forth with them about 3 months ago and said they not only were developing a tinnitus product that should be out on the market hopefully in 2 years but also were developing a hair cell regenerating drug that would be given right in their office when available in hopefully 4-5 years.

Thanks for your response. You don't have to give the name of the company, but when they said hair cell regeneration would be possible in possibly 4-5 years. Did they mean they planned on releasing the drug at that time to the public? Or that they would begin trials for the drug then?

Also, the regeneration, did they say it would lead to MOST hearing returned to normal? Did they say it had to be acute hearing loss or it could be hearing loss from over a year old?

Just curious is all. Again, obviously time frames are never set in stone. But I would love to get an idea of what they said so I can at least have some hope and a reason to hopefully keep living knowing there is a chance in the next 10 years my problems will be somewhat solved.

 

[Nick Pyzik]

Thanks for your response. You don't have to give the name of the company, but when they said hair cell regeneration would be possible in possibly 4-5 years. Did they mean they planned on releasing the drug at that time to the public? Or that they would begin trials for the drug then?

Also, the regeneration, did they say it would lead to MOST hearing returned to normal? Did they say it had to be acute hearing loss or it could be hearing loss from over a year old?

Just curious is all. Again, obviously time frames are never set in stone. But I would love to get an idea of what they said so I can at least have some hope and a reason to hopefully keep living knowing there is a chance in the next 10 years my problems will be somewhat solved.

You know, I was hoping that they were at least being truthful with what they were telling me. It seemed to be an assistant talking to me through the email because at one point I started asking detailed questions and they said they needed to speak to the scientists themselves conducting these hair cell treatments to see if they could answer my question but I never ended up getting any response back then. I believe they said it should be available for the public to pay for and partake in as a procedure in their facility. They even gave me a price for what it would cost but ended up taking the price back because they just gave a rough estimate and were not exactly sure how much it would cost.

I think I did ask them how much hearing would a person get back with the procedure and they did not know how much since this was not one of the leading researchers talking to me. The time frame of the hearing loss doesn't matter. All that matters is if you're missing certain hair cell frequencies and if so then you're viable for the procedure.

Could you explain your hearing issues to me a bit? I'd just like to hear about it and maybe give my opinion to what could be going on. Thanks.

 

[jdjd09]

Could you explain your hearing issues to me a bit? I'd just like to hear about it and maybe give my opinion to what could be going on. Thanks.

I have hearing loss in one ear and not the other. its 8khz (40dbs to hear it). 30 dbs from 6-7khz if I remember right. And then the rest is 20dbs and less. The other ear is fine.

I just want my hearing back :/. I dont know what to do.

 

[tomytl]

Now you never really can set a date for new medical treatments with science but all I can say is that there is progress being made with curing hearing loss/tinnitus issues. There are many pharmaceutical type companies working on a cure and display pipelines for the drugs they are working on. I can say that I did talk to a hearing company who is making some good progress with hair cell restoration. I can't give the name of who it is but I did some emailing back and forth with them about 3 months ago and said they not only were developing a tinnitus product that should be out on the market hopefully in 2 years but also were developing a hair cell regenerating drug that would be given right in their office when available in hopefully 4-5 years.

So there are companies out there producing results so that they can be used on humans but the question will always be when will it arrive in it's finest form?

I would have to say there will be drugs available for tinnitus soon but who knows how well they will work. Hair cell regenerating therapies will take much longer. I'm think very close to a decade until they are in a form available for everyone. Stem Cells could take even longer or about a decade. But who knows, I'm just estimating. You just never know when things will change.

Hi,
I have mail exchange with a top notch hearing lab for about 10 years.
They are really working very hard and target driven to achieve a therapy for hair cell regeneration.
It's really amazing how much progress they made, one of the biggest obstacles is triggering hair cell regeneration in adult cochlea and the delivery to the inner ear.
They are very excited from latest results and are now translating their findings to a clinical application.
A very positive indicator of developments is the start of decibeltx (Decibel Therapeutics)
This company is founded by long known, very leading researchers in the field.
But yes, if someone says, it's just arround the corner, that's too optimistic, I guess also 10 years is probably optimistic. The good thing, any inner ear medication would be a companies blockbuster, so there will be big interest from the big pharmas.

 

[c0ldsun]

All the research is nice, but there is nothing specific on the way that can help us with our chronic T. That means we will have definitely nothing within the next 10 years that helps. With Autifony a lot of hope is gone.

 

[Nucleo]

The original post still stands. A cure is most definitely not around the corner.

 

[wishingluck]

It hardly matters what anybody says. The answer is: none of them know. Dr. Heller doesn't know what every other researchers and scientiest are doing or will do. I think a cure might be found anytime from 15 to 150 years.

 

[wishingluck]

The original post still stands. A cure is most definitely not around the corner.

People said the same thing about going into space. Or about flying. I am not delusional, I am just saying that to presume that a cure is 'most definitely not around the corner', is just as meaningless as presuming the contrary. For the simple reason that there's no reason to believe either scenario. Simply, no one can tell.

As for the lack of money in research, I think that the real problem is not just a lack of money, but the right people to discover what they need to discover. Great discoveries were made by brilliant minds, not just lots of money. Let's just say that we are all just stuck between a hard and a though place...

 

[tomytl]

People said the same thing about going into space. Or about flying. I am not delusional, I am just saying that to presume that a cure is 'most definitely not around the corner', is just as meaningless as presuming the contrary. For the simple reason that there's no reason to believe either scenario. Simply, no one can tell.

As for the lack of money in research, I think that the real problem is not just a lack of money, but the right people to discover what they need to discover. Great discoveries were made by brilliant minds, not just lots of money. Let's just say that we are all just stuck between a hard and a though place...

yes, right, nobody knows and it's not predictable. But in the best case, if they would find the solution today
and the drug isn't already tested by FDA, it would be at least 5 years...
A blockbuster drug would alone need a long time until the prices and treatment would be set.
Imagine what money a hearing loss drug would produce...

 

[Nick Pyzik]

All the research is nice, but there is nothing specific on the way that can help us with our chronic T. That means we will have definitely nothing within the next 10 years that helps. With Autifony a lot of hope is gone.

I think before a "treatment" for Tinnitus can really be put forth, there needs to be an incredibly precise study on what causes it, the mechanisms behind it, and what it causes the brain to do. We have a few of those questions answered through a ton of separate studies but if we really knew what went on behind the scenes and what damage caused the brain to create a never ending sine like tone then we would have a much better chance at coming up with treatments for this phenomenon. I don't think muscles create this sound, I don't think grey or white matter create this sound, I don't think any other part of the body causes this sound besides what makes up the brain. Neurons.

 

[meeruf]

There was a guy that said the same year humanity flew for the first time, that flying would not happen for atleast 10.000 years.

The only correct answer is that no one knows. A cure could come next week, or never. Sometimes people just stumble upon an answer.

Prepare for the worst, hope for the best.

The best thing we can do is to support science in all ways.

And get social "science" out of universities, they don't do shit. All that wasted resources that could be spent on real science instead.