Suicidal

[Killer]

This is summarized really well (can't believe I left out Hough in mine)! I will upvote your succinct summaries everytime I see them.

FYI though, Audion did release their results but only vaguely. They mentioned 30% improvement in hearing parameters (which parameters?) and are reportedly working with their partners to tweak the drug for further study. Their method has a lot of issues compared to say Frequency because it depletes supports cells and makes a hair cell like cell that may be closer to a vestibular cell than a cochlear hair cell. But the fact that even then, they got some hearing improvement is a good sign. Frequency does not deplete support cells and makes phenotypic hair cells.

I was trying to find the parameters for Audion's results but had no luck. It's great that it showed as much efficiency as they did, given they aren't the most natural hair cells. Gives me even more hope that FX-322 will heal a lot of our hearing problems and tinnitus when their results are released.

Is it okay with you if I translate this and share in a local Facebook group? If yes, how would you like to be cited?

Yes, and you don't need to cite me.

 

[dan]

Autifony has some ideas for this too. Also pre-clinical. But I need to find out more info.

Autifony already failed miserably and all of Tinnitus Talk was hopeful.

It was bullshit.

 

[Bartoli]

https://www.kpwashingtonresearch.or...kpwhri-3-heal-grants-totaling-over-15-million

15 million went to CBT (in this case), only 1 million went to WinSanTor a company focused on reversing peripheral neuropathy.

In this particular case it's about chronic pain treatment and in an attempt to lower opioid dependency. I can imagine the need for an alternative that is available now, so I understand the bias towards CBT. It seems US doctors are happy to prescribe these kinds of drugs that are obviously not a long term solution, create dependency and come with a host of side effects and problems. I don't know if CBT had been previously researched in this field, so I'm not familiar with the context. Once the efficacy (or not) is established it's reasonable to not go further down the same route and investing more money into researching CBT.

Opioids for chronic pain (or in a sort of analogy, benzos for tinnitus) never really came across for me as a long-term solution. They may have their use, but you don't have to browse this forum for long to find plenty of reasons not to take them. For me, it's covering up and immediate problem with a delayed problem, essentially making you have to deal with both tinnitus and benzo withdrawal at some point in the future.

While not in proportion, the money going into researching peripheral neuropathy isn't going to yield results anytime soon so it makes sense the majority of money was put where it was needed, as in, a more accessible solution for now...

Still, none of this is about tinnitus really. I still stand by my point and to my knowledge there is no major study into CBT for tinnitus ongoing at the moment. It has been researched, and the data at least suggests it's effective, as opposed to shining a laser in your ear. It's not the solution we dream of, but we also need real treatments now.

Personally I find the money that was put into the research of CBT for tinnitus was more useful than some study about coffee and tinnitus...
The thing with studies is: until you research something, there's no way of knowing what the results will be, and even ascertaining that something is not effective will ultimately lead us closer to a cure... in hindsight some studies may seem stupid, but at least someone made sure it doesn't work. No researcher ever deliberately wants his research to lead to a dead end, but these outnumber the useful studies probably by a 100 to 1.

What have we got?

Benzos: instead of 1 problem, you'll soon have 2.

TRT: an expensive solution, for some.

CBT: proven to help with tinnitus annoyance, not the tinnitus itself. Not what we want, but it's what we got now.

Levo/Desyncra/Lenire: see TRT

rTMS: risky business. Let's zap your brain, see what happens.

Trobalt: you can't find any. If you do, better not touch it or your eyes go blue. No, not like Sinatra.

FX-322: can't come soon enough.

Audion: dud.

I'm currently doing CBT/ACT. At least it keeps me occupied while someone, somewhere tinkers on a cure. And you know, maybe it might help. I haven't got high hopes but I don't want to jeopardize it by telling it won't before I got started.

 

[FGG]

Autifony already failed miserably and all of Tinnitus Talk was hopeful.

It was bullshit.

I wasn't. I was probably THE Audion skeptic on Tinnitus Talk. Their method produces hair cells that are more like vestibular hair cells while also depleting support cells. Frequency produces the real deal.

Apples to oranges. I have been saying that from day one to the Audion cheerleaders.

Edit: sorry. Can't read obviously. I thought you said Audion. Nevermind!

I talked to a researcher from Autifony and she said it worked but not well enough. "We need a more selective drug" is what she said. Apparently, they ran into the Trobalt problem (without the side effects) but are re-formulating now.

 

[dan]

I wasn't. I was probably THE Audion skeptic on Tinnitus Talk. Their method produces hair cells that are more like vestibular hair cells while also depleting support cells. Frequency produces the real deal.

Apples to oranges. I have been saying that from day one to the Audion cheerleaders.

Edit: sorry. Can't read obviously. I thought you said Audion. Nevermind!

I talked to a researcher from Autifony and she said it worked but not well enough. "We need a more selective drug" is what she said. Apparently, they ran into the Trobalt problem (without the side effects) but are re-formulating now.

So would you bet a million dollars (if you had it), that in 20 years when I'm 60 years old, that we will have a cure?

 

[dan]

Hi @Chinmoku. My tinnitus started four years and five months ago. It has been intrusive since day one. Unmaskable. Loud. First year took me through the darkest and toughest passages a human being could go through. I felt like throwing the towel every single day. Then, little by little, I started to recover segments from my pre-tinnitus life. I reconnected with lots of aspects of myself which were completely abandoned. I have to admit that I sometimes fell back in the pit but my average day to day was pretty decent despite having that loud hiss/shrill/drill sound in my head. I habituated. I got tired of feeling bad about it or something. Don't know how the magic worked but I felt alive again. It takes time.

Now I am back to square one after a permanent worsening which started out of the blue almost two months ago. I am going through a lot of suffering and mental pain at the moment and I feel completely desperate ironically missing my old sweet LOUD & intrusive tinnitus. Don't want to tell how this crap sounds now... Just imagine it.

Hello El Buzz,
Nice to meet you on the forum.
Very sorry to read about your worsening.

Could you please describe as best you can your old tinnitus and your current tinnitus.
Reason I'm asking is because I'm trying to see what makes a tinnitus habituable...

Are you making progress do you think looking back at the way you made progress the first time...

Anything you can say is helpful.
Gracias Señor!

 

[Contrast]

While not in proportion, the money going into researching peripheral neuropathy isn't going to yield results anytime soon so it makes sense the majority of money was put where it was needed, as in, a more accessible solution for now...

Biology was a neglected science. They should be ashamed for neglecting biology. I find it weird how a small bio-company in California is making serious progress on reversing neuropathy and the NIH doesn't give it priority.
https://winsantor.com/peripheral-neuropathy-and-our-drug/

Opioids for chronic pain (or in a sort of analogy, benzos for tinnitus)

This is a flowchart, patients are flowcharted to the same generic options.


I will never apologize for saying western medicine is in it's infancy. The deep biological sciences didn't even exist 20 years ago. Anything that has to do with reversing disease/regeneration is a totally new science that is evolving, that relates to the technicalities of cellular biology. We are observing a weird part of human history where the grass roots are taking place but we were born TOO EARLY to benefit from it.

Tinnitus sufferers are left with psychologist who are literally left overs from the 20th century. However chronic pain, diabetes and Alzheimers sufferers do have to deal with greedy pharmaceutical companies. Tinnitus does not have the big pharma problem like some diseases do. You guys just have stupid Jastreboff. Ecommerce scammers are not whistling in the wind when they say diabetes and Alzheimers are being monopolized by greedy pharmaceutical companies.

It is true ENT's do want to sell wearable hearing aids with TRT, but in comparison other health problems have the opoid epidemic and controversial highly conflicting research about coconut oil and Alzheimers that just screams pharmaceuticals are greedy.

 

[FGG]

So would you bet a million dollars (if you had it), that in 20 years when I'm 60 years old, that we will have a cure?

Absolutely.

Hey you are around my age...

 

[dan]

Absolutely.

Hey you are around my age...

Yip.

 

[serendipity1996]

Biology was a neglected science. They should be ashamed for neglecting biology. I find it weird how a small bio-company in California is making serious progress on reversing neuropathy and the NIH doesn't give it priority.
https://winsantor.com/peripheral-neuropathy-and-our-drug/

This is a flowchart, patients are flowcharted to the same generic options.

I will never apologize for saying western medicine is in it's infancy. The deep biological sciences didn't even exist 20 years ago. Anything that has to do with reversing disease/regeneration is a totally new science that is evolving, that relates to the technicalities of cellular biology. We are observing a weird part of human history where the grass roots are taking place but we were born TOO EARLY to benefit from it.

Tinnitus sufferers are left with psychologist who are literally left overs from the 20th century. However chronic pain, diabetes and Alzheimers sufferers do have to deal with greedy pharmaceutical companies. Tinnitus does not have the big pharma problem like some diseases do. You guys just have stupid Jastreboff. Ecommerce scammers are not whistling in the wind when they say diabetes and Alzheimers are being monopolized by greedy pharmaceutical companies.

It is true ENT's do want to sell wearable hearing aids with TRT, but in comparison other health problems have the opoid epidemic and controversial highly conflicting research about coconut oil and Alzheimers that just screams pharmaceuticals are greedy.

Along with Winsantor, there's also Regenacy Pharmaceuticals. https://regenacy.com/

 

[PeteJ]

Do you have any hard numbers on the truckloads of money reportedly going towards CBT? I think there's very little ongoing research still focussing on CBT.

No money needs to go towards CBT.

 

[PeteJ]

In this particular case it's about chronic pain treatment and in an attempt to lower opioid dependency. I can imagine the need for an alternative that is available now, so I understand the bias towards CBT. It seems US doctors are happy to prescribe these kinds of drugs that are obviously not a long term solution, create dependency and come with a host of side effects and problems. I don't know if CBT had been previously researched in this field, so I'm not familiar with the context. Once the efficacy (or not) is established it's reasonable to not go further down the same route and investing more money into researching CBT.

Opioids for chronic pain (or in a sort of analogy, benzos for tinnitus) never really came across for me as a long-term solution. They may have their use, but you don't have to browse this forum for long to find plenty of reasons not to take them. For me, it's covering up and immediate problem with a delayed problem, essentially making you have to deal with both tinnitus and benzo withdrawal at some point in the future.

While not in proportion, the money going into researching peripheral neuropathy isn't going to yield results anytime soon so it makes sense the majority of money was put where it was needed, as in, a more accessible solution for now...

Still, none of this is about tinnitus really. I still stand by my point and to my knowledge there is no major study into CBT for tinnitus ongoing at the moment. It has been researched, and the data at least suggests it's effective, as opposed to shining a laser in your ear. It's not the solution we dream of, but we also need real treatments now.

Personally I find the money that was put into the research of CBT for tinnitus was more useful than some study about coffee and tinnitus...
The thing with studies is: until you research something, there's no way of knowing what the results will be, and even ascertaining that something is not effective will ultimately lead us closer to a cure... in hindsight some studies may seem stupid, but at least someone made sure it doesn't work. No researcher ever deliberately wants his research to lead to a dead end, but these outnumber the useful studies probably by a 100 to 1.

What have we got?

Benzos: instead of 1 problem, you'll soon have 2.

TRT: an expensive solution, for some.

CBT: proven to help with tinnitus annoyance, not the tinnitus itself. Not what we want, but it's what we got now.

Levo/Desyncra/Lenire: see TRT

rTMS: risky business. Let's zap your brain, see what happens.

Trobalt: you can't find any. If you do, better not touch it or your eyes go blue. No, not like Sinatra.

FX-322: can't come soon enough.

Audion: dud.

I'm currently doing CBT/ACT. At least it keeps me occupied while someone, somewhere tinkers on a cure. And you know, maybe it might help. I haven't got high hopes but I don't want to jeopardize it by telling it won't before I got started.

Blah, blah, blah.

Doctors won't give me opioids or benzos. I would definitely try either and want opioids for my chronic pain. Perhaps, your ear doesn't hurt EVERY DAY. There's nothing that helps so why won't a dr prescribe an opioid for me? Besides severe tinnitus, I have hyperacusis or noxacusis. The ear pain is also often severe. I am tired of applying ice cubes and heated wash cloths that don't help!

CBT is useless! It only helps with mild cases. It's useless and shouldn't be considered a treatment.

 

[PeteJ]

My pain isn't hyperacusis or noxacusis, is it? Don't get me wrong. I think I had or have noxacusis. I think I can link some pain episodes to a noise.

But, most of the time, I have pain just below my ear and I don't know what it is called. Someone suggested trigeminal neuralgia. But, it doesn't sound like that either? It's not a stabbing pain really. It is a constant severe pain. Sometimes it's like I was hit there by some object. If it subsides, it usually takes a long time. Sometimes, it only subsides a bit and is still painful there. I think it's related to my tinnitus and ear problems because I never had this before. It makes me think it's nerve pain but possibly (but less likely?) muscle pain as there is a muscle located there? It's located so close to my ear. Sometimes, the pain extends to the inner ear near the tragus and area. Usually, it would be just the left ear that was in pain but now I experience pain with my right ear too. Usually, not both at the same time but on rare occasions, both at the same time.

As bad as it is, I consider the tinnitus worse because the ringing is so loud and high pitched. When my ear pain is at its worse and the tinnitus is screaming, I think I should buy an exit bag and rope. I should buy them before I run out of money.

I don't think I can wait for these regeneration treatments that are unlikely to work anyway.

 

[Contrast]

Along with Winsantor, there's also Regenacy Pharmaceuticals. https://regenacy.com/

I don't have faith, this part of human history is way to early. I have enormous amount of respect for the deep biological sciences but I realize hope is decades away (if sufferers play it smart).

Once doctors start talking about this stuff you know progress is being made, but right now we are living in a world where lay people care more about regenerative medicine then physicians.

 

[PeteJ]

I don't have faith, this part of human history is way to early. I have enormous amount of respect for the deep biological sciences but I realize hope is decades away (if sufferers play it smart).

Once doctors start talking about this stuff you know progress is being made, but right now we are living in a world where lay people care more about regenerative medicine then physicians.

A counsellor friend explained CBT to me so it's not like I don't know what it is. It shouldn't be considered a treatment for this. Frequency Therapeutics and the others are, at least, doing something that is probably on the right track. But, these government agencies and hearing organizations want to ignore the severe cases and pretend they don't exist. Promoting TRT and CBT is their way of ignoring the problem. It's simultaneously sad and pathetic that they do this when they are supposed to be the primary spokespeople for this condition.

 

[FGG]

My pain isn't hyperacusis or noxacusis, is it? Don't get me wrong. I think I had or have noxacusis. I think I can link some pain episodes to a noise.

But, most of the time, I have pain just below my ear and I don't know what it is called. Someone suggested trigeminal neuralgia. But, it doesn't sound like that either? It's not a stabbing pain really. It is a constant severe pain. Sometimes it's like I was hit there by some object. If it subsides, it usually takes a long time. Sometimes, it only subsides a bit and is still painful there. I think it's related to my tinnitus and ear problems because I never had this before. It makes me think it's nerve pain but possibly (but less likely?) muscle pain as there is a muscle located there? It's located so close to my ear. Sometimes, the pain extends to the inner ear near the tragus and area. Usually, it would be just the left ear that was in pain but now I experience pain with my right ear too. Usually, not both at the same time but on rare occasions, both at the same time.

As bad as it is, I consider the tinnitus worse because the ringing is so loud and high pitched. When my ear pain is at its worse and the tinnitus is screaming, I think I should buy an exit bag and rope. I should buy them before I run out of money.

I don't think I can wait for these regeneration treatments that are unlikely to work anyway.

You are a case where you may not at all need regenerative medicine. Yours very much could be TMJ or trigeminal neuralgia or a vascular nerve compression. Please get a CT scan. All of those things in addition to causing pain can cause tinnitus. At least get a proper work up!

http://www.tinnitusjournal.com/articles/relationship-between-otological-symptoms-and-tmd-10364.html

 

[InfiniteLoop]

A counsellor friend explained CBT to me so it's not like I don't know what it is. It shouldn't be considered a treatment for this. Frequency Therapeutics and the others are, at least, doing something that is probably on the right track. But, these government agencies and hearing organizations want to ignore the severe cases and pretend they don't exist. Promoting TRT and CBT is their way of ignoring the problem. It's simultaneously sad and pathetic that they do this when they are supposed to be the primary spokespeople for this condition.

Yes, it is true, but there is nothing else, even if they are next to nothing.

 

[Contrast]

A counsellor friend explained CBT to me so it's not like I don't know what it is. It shouldn't be considered a treatment for this. Frequency Therapeutics and the others are, at least, doing something that is probably on the right track. But, these government agencies and hearing organizations want to ignore the severe cases and pretend they don't exist. Promoting TRT and CBT is their way of ignoring the problem. It's simultaneously sad and pathetic that they do this when they are supposed to be the primary spokespeople for this condition.

I have a theory that Jastreboff was a "literal who" until the US military adopted TRT along with Shatner's promotion.

He was one of the obscure characters researching tinnitus at the time. Back in the late 70's there was ZERO research on tinnitus. It just shows how young the biological sciences are, and how anyone can fill their niche.

 

[Contrast]

CBT proponents have a point. There is lot's of evidence that mind can effect body and certain diseases can be caused/worsened at their core from stress, but that's a two way street. Body can also effect mind.


They don't look at the full picture. They don't bother figuring out the technical reasons why, they just act zealous about it.

 

[Bartoli]

Blah, blah, blah.

Doctors won't give me opioids or benzos. I would definitely try either and want opioids for my chronic pain. Perhaps, your ear doesn't hurt EVERY DAY. There's nothing that helps so why won't a dr prescribe an opioid for me? Besides severe tinnitus, I have hyperacusis or noxacusis. The ear pain is also often severe. I am tired of applying ice cubes and heated wash cloths that don't help!

CBT is useless! It only helps with mild cases. It's useless and shouldn't be considered a treatment.

Yeah mate whatever. Seems like you have made up your mind a long time ago. My doctors won't prescribe me any benzos either. They must have gotten a slap on the wrist for prescribing it too often in the past. I'm sure I could get them at some point if I want to. I just need some proof that I pursued alternatives first. Which, frankly, makes sense to me. I could've gotten a benzo 10 years ago easily. Doctors also learn...

 

[Daniel Lion]

I´ve been refered to an ENT surgeon to have my tympanic muscle cut. This as an effort to help with my severe noxakusis.
The reasoning behind it is that it acts up as a startle muscle and irritates the trigemenal nerve that brings on the pain even by every day noise.

Anybody have any knowledge of this?

Never heard of it, sounds super extreme and irreversible. Have you done any research?

 

[Contrast]

Everytime I think about 80's music, martial arts, the first few years out of highschool, nature reserves, fishing or anything to do with a rich quality of life experience I get an impulsive urge to end my life since everything is ruined.

I think people with horrifying health problems know this part of human history is a dark scary time to be alive.

 

[LongWait]

Can I ask your age Contrast?

 

[Bartoli]

I find it weird how a small bio-company in California is making serious progress on reversing neuropathy and the NIH doesn't give it priority.
https://winsantor.com/peripheral-neuropathy-and-our-drug/

I don't know much about this so I can't say. Audion was also making serious progress. Until they weren't. All eggs in one basket is never a good thing. They may have been entitled to more funding. I don't know. It's not about tinnitus.

This is a flowchart, patients are flowcharted to the same generic options.

A flowchart isn't necessarily a bad thing. Just an organisational tool to make sure everyone gets the same care.

Tinnitus sufferers are left with psychologist who are literally left overs from the 20th century.

Mental wellbeing is of all times. Even when a cure is around, psychologists will still be needed.

It is true ENT's do want to sell wearable hearing aids with TRT

In the hospital, no ENT I've ever seen sells hearing aids or benefits from their sale. Audiologists working in a hearing aid centre make money from selling hearing aids. Which is why I never had my hearing tested outside of a clinic.

 

[dan]

That said, even partial regeneration (eg just hair cells) will likely result in major symptom improvement. It could make waiting for the "full cure" much more bearable.

What about getting FX-322 and washing it down with some RL-81... attack tinnitus from 2 fronts, imagine tinnitus is Hitler and they are the Allies...

 

[grate_biff]

Never heard of it, sounds super extreme and irreversible. Have you done any research?

No, but it sounded reasonable to me this is what causes my problems when he explained it to me. A woman had success with this procedure. I will know more when I get a chance to talk to the surgeon.
I guess it covers at least one theory behind noxacusis.

 

[Bartoli]

CBT proponents have a point. There is lot's of evidence that mind can effect body and certain diseases can be caused/worsened at their core from stress, but that's a two way street. Body can also effect mind.

They don't look at the full picture. They don't bother figuring out the technical reasons why, they just act zealous about it.

Now we're talking sense. The interaction between body and mind is where it's at. I think psychologists on the whole are more aware of the full picture than most biological scientists practicing their little thing in their niche. Psychiatry has spent a long time as the outcast of science and has been ridiculed oftentimes. We cannot deny that body and mind work in tandem, and if anything doesn't work properly, it starts to show. Not in predictable and measurable ways like in biological sciences but it's there nonetheless. That's why mental coaching is a big thing in sports nowadays.

It's good to think of CBT and derived approaches as somewhat proven effective, and of a complimentary approach at the very least.

By that I absolutely don't mean to say that tinnitus arises when something else is wrong in your life. Or that they have to keep on prodding until they find something in your childhood that is the reason why you can't deal with the tinnitus. I'm very much aware that tinnitus in itself as a sole complaint is fully capable of fucking up your mental wellbeing, and not the other way around. For me personally, I've never had any mental issues before tinnitus, and I would never let anyone tell me I had pre-existing problems that cause my tinnitus to be a problem.

 

[ASilverLight]

For me personally, I've never had any mental issues before tinnitus, and I would never let anyone tell me I had pre-existing problems that cause my tinnitus to be a problem.

I've had my fair share of mental issues before. The two years before getting tinnitus I was making pretty great improvements. Life started making more sense, I felt happier, less anxious etc - really, things were looking up for me. 2020 comes, I get tinnitus one week in, and I legit haven't stopped feeling suicidal since. The last time I felt genuinely suicidal before this was when I was 17 or so - so that's 6 years ago.

I refuse to believe that having mental issues or traumatic experiences is the reason people can't cope. Tinnitus itself can be traumatic if bad enough for a person. For me, life was falling into place and I was moving on, so getting this has brought back feelings I haven't felt since I was 14-17. Except that this time, what's causing these feelings probably won't improve, and I can't escape from it.

I'm just deeply sad. I've suffered a lot, I was just starting to be happy and enjoy life and work on myself, but now it feels pointless. I don't know my cause. I genuinely doubt mine lies within hearing loss - perhaps it's my neck, perhaps it's damage from inflammation, I don't know. Either way I don't think my particular case will benefit from any drug they're working on right now, and I don't want to suffer like this for another 60 years.

Still, I also don't want to hurt people by offing myself. I can't do that to my brother, my mother, my best friend. But I also don't want to suffer. I know with time my mindset may improve but knowing how much I have to give up and what I might never get to experience? Man, that sucks.

 

[Contrast]

. I think psychologists on the whole are more aware of the full picture than most biological scientists practicing their little thing in their niche

Biologist (defined as any specialty relating to regenerative medicine) does not have much representation in the clinical world at all.

 

[bobvann]

Exactly that's what I will tell my GP when he scolds me for drinking too much red wine and weight. What is the point of worrying if all I do is exist to suffer...