Suicidal

[Jazzer]

The thing I'm the most worried about is being unable to not see myself as a victim.

Please try reading Tolle......x

 

[PeteJ]

I don't see the point of suffering without the possibility of recovering. I find it stupid. I just wanted to start classes and have a normal life. I don't suffer.

Too much BS here. The people posting that a regeneration treatment is 2 years away should prove it with facts and sources. Too many of these lately.

When I first joined, there were endless posts about how Lenire/Neuromod was going to 'cure' people and it hasn't done shit. It is the biggest POS BS hoax I have read on here.

Fuck false hope and BS.

 

[PeteJ]

Agreed. Also meant in general. You realize how easy it is to get sick and how scary the depression that follows can be. There are literally thousands of life ruining diseases that can appear out of nowhere, even if you're careful. You can just get unlucky.

Nothing this bad.

 

[PeteJ]

I like to watch movies/documentaries about chronic illnesses/rare disorders. It helps me cope in a strange way. Takes away that "why Me" component from all this stuff, knowing I'm not the only person in the world who is struggling even though at times it feels like it (outside of forums).

On Snapchat today there was a story of a woman who is allergic to the sun or any UV rays. Not just a mild rash allergic but she literally gets little melanomas (cancerous) all over her body if exposed. She's had most of her nose surgically removed. Her lower lip. It's so sad.

That's even more rare than tinnitus. Severe cases of tinnitus and hyperacusis is also rare.

Mild tinnitus is not rare. Since tinnitus in itself is not rare, the government and the Scientific and Health Research community should address it. It's still tinnitus.

Society is partly to blame or depending on perspective, is largely to blame. Whether it's a loud environment, promoting loud music or entertainment, people are exposed to loud noise and sounds. People had their life ruined because loud environments and situations are promoted. Even work environments. The government should take some responsibility.

Mental health is not the problem. It is only a symptom along the way as it's a physical problem to do with the ear and brain*.
*presuming the brain plays some part when the ear is damaged.

 

[PeteJ]

My tinnitus is through the fucking roof right now. Some people use the description, "it's screaming. " 11/10 severity and volume.

Why?!? What is different? What happened? I also have ear pain. But, it's the loud tinnitus that makes me want to shoot myself in the head.

So research is ongoing right now that can treat this shit???!???

I want my life back. I fail to see how some revolutionary treatment that regenerates the inner ear, repairs the cochlea and any other damage will be available in 2 - 5 years! If it comes with restored hearing, that's a bonus but I could settle with repaired ears and a tinnitus 'cure' (either gone preferably or no worse than mild that people live and cope with).

 

[acute]

Too much BS here. The people posting that a regeneration treatment is 2 years away should prove it with facts and sources. Too many of these lately.

When I first joined, there were endless posts about how Lenire/Neuromod was going to 'cure' people and it hasn't done shit. It is the biggest POS BS hoax I have read on here.

Fuck false hope and BS.

Yeah, false hope is everywhere. I can't with that shit. I naively believed that kind of speech myself in the past, but nothing worked. I believed in Lenire.

How can Frequency Therapeutics help individuals without hearing loss? How can Frequency Therapeutics have an effect on tinnitus? @FGG I tag you because it's seems that you are so well informed about this topic and also you are a very smart woman IMO.

 

[acute]

This is not life.

This is not me.

Not anymore.

 

[Lucifer]

Too much BS here. The people posting that a regeneration treatment is 2 years away should prove it with facts and sources. Too many of these lately.

When I first joined, there were endless posts about how Lenire/Neuromod was going to 'cure' people and it hasn't done shit. It is the biggest POS BS hoax I have read on here.

Fuck false hope and BS.

I think 2 years is possible. Audion and Frequency Therapeutics are so close. Audion has finished Phase 2 clinical trials and Frequency Therapeutics is currently in Phase 2a with the potential of being able to skip Phase 2b and release the drug in the market.

 

[acute]

They told me that I should wait 6 months. Then they told me I should wait 1 year. They said that everything would improve, that I would get used to it. Nothing of that has happened. Now that a year has passed they want me to wait an eternity. Didn't going to happen. They want me to "live" this way.

I lost all my hope. I lost all my fucking hope. Months ago I had a little hope of recovering... but the months have passed and that has not happened. Nothing good has happened to me. Only suffering and more torture. Like I have died in April 2019. I really did.

I now know that I will going to be stuck in this nightmare forever, if I don't do anything to end it.

Nothing is going to magically change after a year with this horrible tinnitus.

 

[Bartoli]

How can Frequency Therapeutics help individuals without hearing loss?

The methods of checking for hearing loss are a joke. If you got tinnitus after noise exposure it's probably safe to assume there's some damage done to the auditory system. Luckily that means regenerative medicine should help.

 

[Kriszti]

Yeah, false hope is everywhere. I can't with that shit. I naively believed that kind of speech myself in the past, but nothing worked. I believed in Lenire.

How can Frequency Therapeutics help individuals without hearing loss? How can Frequency Therapeutics have an effect on tinnitus? @FGG I tag you because it's seems that you are so well informed about this topic and also you are a very smart woman IMO.

Did you have an audiogram over 8000 Hz? You still can have hearing loss even with a perfect standard audiogram.

I think, the idea behind Frequency Therapeutics' drug is that the brain compensates for lost input from the damaged hair cells, so if the hair cells are regenerated the brain won't need to make the phantom sound and hopefully will "adapt back.". I'm sure @FGG can offer a more thorough explanation.

 

[HootOwl]

Did you have an audiogram over 8000 Hz? You still can have hearing loss even with a perfect standard audiogram.

I think, the idea behind Frequency Therapeutics' drug is that the brain compensates for lost input from the damaged hair cells, so if the hair cells are regenerated the brain won't need to make the phantom sound and hopefully will "adapt back.". I'm sure @FGG can offer a more thorough explanation.

It's important to remember too that even an 8 kHz audiogram measures only a handful frequencies (7-8) in order to detect widespread OHC loss. That's 7-8 frequencies out of EIGHT THOUSAND. I have notches at several of my tinnitus tones after doing sweep testing. We are talking very specific, like 840 Hz, 2770 Hz, etc.

But my 8 kHz audiogram shows "no hearing loss" per every ENT I've seen. The damage is there, but it's too specific and too mild to show up.

How audiograms somehow became a standard for detecting minute structural damage I'll never know. They are not designed for that in any way.

 

[Contrast]

Medicine in this era is primitive. There are MANY other diseases that have similar problems.

Remember this is not just a tinnitus/hyperacusis issue, we are just observing a weird part of human history where biological sciences are not that advance. It's weird because technological sciences are lightyears ahead in comparison.

 

[FGG]

Yeah, false hope is everywhere. I can't with that shit. I naively believed that kind of speech myself in the past, but nothing worked. I believed in Lenire.

How can Frequency Therapeutics help individuals without hearing loss? How can Frequency Therapeutics have an effect on tinnitus? @FGG I tag you because it's seems that you are so well informed about this topic and also you are a very smart woman IMO.

Appreciate the vote of confidence. Let's see if I can explain this clearly:

Frequency's phase 1 data, as well as the human explant studies have proven (with histology for the later and that's very very very hard evidence) that cochlear hair cells can be regrown in humans. That's an indisputable fact at this point.

As to whether restoring cochlear input and restoring the brain's normal auditory signal would eliminate tinnitus? In order for that *not* to be the case, tinnitus would have to be the sole example of brain neuroplasticity that gets "stuck" in one direction (unlike say other examples of maladaptive plasticity such as phantom limb). And that really doesn't make sense for the brain to have that preference *only* in regards to tinnitus. The brain doesn't have those kind of preferences period.

And, to add to that, Tinnitus Talk even asked Dr. Kopke from Hough that exact question on a podcast. Kopke is a rare combination of researcher and clinical Otologist who saw patients (so literally the perfect person to ask this), and he affirmed that cochlear implants show that the auditory system is not "stuck" in one direction with maladaptive plasticity.

And keep in mind, many people who get CIs get resolution with tinnitus after use, even in quiet (ie it's not masking). Now imagine if CIs actually reached a much wider and less crude spectrum of frequencies (this may eventually happen with optical vs electrical CIs...)?

Another example:
https://www.sciencedirect.com/science/article/abs/pii/S0196070920301800

And another: if you treat TMJ, tinnitus improves. If it was "stuck in the brain", that wouldn't happen.

I understand the frustration with Lenire. I never saw them be transparent with their data (as I understand Susan Shore will publish her timings. Why won't Lenire? That's a little off topic though). The larger point is that treatments are not all equal. If you examine past failures, then no technology would have ever worked. We would have never invented a working airplane or electricity or the amazing *restorative* things biotech is now finally doing for the first time in history (the list from the last 5 years is actually astounding).

Anyway, regenerative medicine is independent of Lenire. Even Susan Shore is independent of Lenire (and she is much more rigorous).

As to an estimated time frame, while no one can prove when a drug will come out, historical data on the FDA trial process gives you a pretty good estimate. Personally though, I don't share the opinion that Frequency will skip 2b but I do think it stands a pretty good chance of skipping Phase 3. There is *also* a chance once they scale up manufacturing after phase 2b, they would allow expanded/compassionate use. So 2-5 years is way more realistic than say 10 years. There is data on many biotechs that show how long this process usually takes. It's not some sort of fanciful guess.

Important point; regenerative medicine will (thus far) only work if you have *cochlear* damage (e.g.. noise induced, most commonly). If you have conductive loss, TMJ etc this will not help, but treating the underlying cause and/or better bimodal could in those cases.

Regenerative medicine is addressing the underlying cause in most SNHL. A lot if people do not realize, even if you don't *feel* like you have hearing loss, if your tinnitus was due to noise, you have definitely have hearing loss/cochlear damage. This damage could be in untested frequencies (either in a single notch or above the range of a standard audiogram) or you could have synaptopathy, aka "hidden hearing loss" (the drugs in trial for this are: OTO-413. Hough Pill and PIPE-505 -- and Justin at Hough has confirmed on Tinnitus Talk they saw phase 1 positive results for Tinnitus).

Another aside: I'm less sold on Audion than Frequency. It seems retrofitting a support cell might produce a "hair cell like" cell and not a "hair cell". What that means clinically, I'm not sure yet, but at the very least, they also deplete support cells which worries me. Frequency does not deplete support cells and produces phenotypic hair cells. So even among regeneration tech, all drugs are not created equally that's why you have to look at the data individually.

 

[Kriszti]

Regenerative medicine is addressing the underlying cause in most SNHL. A lot if people do not realize, even if you don't *feel* like you have hearing loss, if your tinnitus was due to noise, you have definitely have hearing loss/cochlear damage. This damage could be in untested frequencies (either in a single notch or above the range of a standard audiogram) or you could have synaptopathy, aka "hidden hearing loss" (the drugs in trial for this are: OTO-413. Hough Pill and PIPE-505 -- and Justin at Hough has confirmed on Tinnitus Talk they saw phase 1 positive results for Tinnitus).

What baffles me a bit is how will they be able to determine whether the damage is definitely due to cochlear problems? As far as I know, right now there is no surefire way to diagnose the origin of tinnitus. Will it be like, if there are no likely horrible side effects, every tinnitus patient who doesn't have an exact underlying cause can try it and see whether it helps?

 

[just1morething]

I'm most concerned about what we can do to manage our head noise in the meantime? Frequency, Audion, etc. will do their thing regardless, and hopefully in a timeframe that isn't too far out. I wish lidocaine was safer to take in some form as that really seems to knock out the noise. Gabapentin plus Clonazepam seems to help me some but is inconsistent.

 

[FGG]

What baffles me a bit is how will they be able to determine whether the damage is definitely due to cochlear problems? As far as I know, right now there is no surefire way to diagnose the origin of tinnitus. Will it be like, if there are no likely horrible side effects, every tinnitus patient who doesn't have an exact underlying cause can try it and see whether it helps?

The diagnostics are truly primitive, but you can rule out a lot of potential causes with a really extensive work up: vascular, nutritional, neck/jaw injury, conductive loss, "third window" syndromes, immune-mediated, neoplastic (tumor), genetic hearing loss, hydrops/Meniere's, etc. Though a lot of those can't be fully ruled out.

But yes, etiology tells you where the damage is. Acoustic trauma, for instance, is always cochlear damage. A lot of times, you might only see damage with an audiogram up to 16000Hz, and even then if you just have a notch, can be difficult.

And even in the cochlea, if you don't have obvious audiogram changes, it's hard to say whether you damaged hair cells at a "notch" or whether synapses might be damaged.

I am of the opinion that it won't hurt to "trial treat", especially if you are not depleting support cells but that would be a great question for the drug companies.

 

[Bartoli]

It's important to remember too that even an 8 kHz audiogram measures only a handful frequencies (7-8) in order to detect widespread OHC loss. That's 7-8 frequencies out of EIGHT THOUSAND. I have notches at several of my tinnitus tones after doing sweep testing. We are talking very specific, like 840 Hz, 2770 Hz, etc.

But my 8 kHz audiogram shows "no hearing loss" per every ENT I've seen. The damage is there, but it's too specific and too mild to show up.

How audiograms somehow became a standard for detecting minute structural damage I'll never know. They are not designed for that in any way.

I'm interested in this sweep testing. How do you perform it and what happens when a notch is present? Does the sound seem to cut out and reappear or isn't it that drastic?

 

[PeteJ]

The methods of checking for hearing loss are a joke. If you got tinnitus after noise exposure it's probably safe to assume there's some damage done to the auditory system. Luckily that means regenerative medicine should help.

It makes sense but how much will it help (is the question)?

Doesn't everyone have a unique case of tinnitus? Will regenerative medicine help universally with that in mind?

 

[PeteJ]

I think 2 years is possible. Audion and Frequency Therapeutics are so close. Audion has finished Phase 2 clinical trials and Frequency Therapeutics is currently in Phase 2a with the potential of being able to skip Phase 2b and release the drug in the market.

What is it supposed to do to people who have severe/loud tinnitus?

Do any of these treat ear pain as well?

I have three different theories and opinions why I have ear pain and was wondering if any of these treatments will treat my ear pain - is there any chance?

Sometimes, I can make a good guess why I am having ear pain but other times, I have no idea or can only take wild guesses.

Also, the most recent development regarding my ear pain is my right ear has ear pain more often than before. I don't know why. How common is ear pain with the guinea pigs of these studies and trials

I don't think ear pain is very common with many tinnitus patients, at least not chronic ear pain and AS BAD as it is, I still consider severe tinnitus as my worst problem.

 

[Lucifer]

What is it supposed to do to people who have severe/loud tinnitus?

Do any of these treat ear pain as well?

I have three different theories and opinions why I have ear pain and was wondering if any of these treatments will treat my ear pain - is there any chance?

Sometimes, I can make a good guess why I am having ear pain but other times, I have no idea or can only take wild guesses.

Also, the most recent development regarding my ear pain is my right ear has ear pain more often than before. I don't know why. How common is ear pain with the guinea pigs of these studies and trials

I don't think ear pain is very common with many tinnitus patients, at least not chronic ear pain and AS BAD as it is, I still consider severe tinnitus as my worst problem.

It should reduce your tinnitus. The current formula does not go below 6kHz but once the new delivery method is created it should be able to restore all hearing in all the frequencies and reduce tinnitus but also hyperacusis.

I do believe it will make the ear pain go away as well. There was an Audion anecdote stating that they could rejoin the band due to their tinnitus and hyperacusis reducing.

 

[Bartoli]

It makes sense but how much will it help (is the question)?

Doesn't everyone have a unique case of tinnitus? Will regenerative medicine help universally with that in mind?

We'll have to wait and see. That sucks, and I try to tell myself this might not even work, or only a bit.

If it does what it's claiming, it should help regardless of how unique your tinnitus may be. For now, there's a concern about lower frequencies because the drug only gets to the point of the cochlea where the higher frequencies are. If your tinnitus is high pitched then that should work.

At least we don't have to wait too long for phase 2a results...

 

[PeteJ]

We'll have to wait and see. That sucks, and I try to tell myself this might not even work, or only a bit.

If it does what it's claiming, it should help regardless of how unique your tinnitus may be. For now, there's a concern about lower frequencies because the drug only gets to the point of the cochlea where the higher frequencies are. If your tinnitus is high pitched then that should work.

At least we don't have to wait too long for phase 2a results...

I don't know if it would be considered higher pitched. Personally, I think it is.

 

[PeteJ]

It should reduce your tinnitus. The current formula does not go below 6kHz but once the new delivery method is created it should be able to restore all hearing in all the frequencies and reduce tinnitus but also hyperacusis.

I do believe it will make the ear pain go away as well. There was an Audion anecdote stating that they could rejoin the band due to their tinnitus and hyperacusis reducing.

Sounds too good to be true. I am not getting my hopes up. I can barely make it through each day let alone wait 2 years for a supposed "miracle" treatment.

I thought the most realistic time frame for a revolutionary treatment was 10 years? In the research section, I thought regeneration and cochlear repair, hair cells etc. was 10 years away? Very confusing. But, for people who might think of waiting, two years is way better than 10.

 

[HootOwl]

I'm interested in this sweep testing. How do you perform it and what happens when a notch is present? Does the sound seem to cut out and reappear or isn't it that drastic?

I use https://www.szynalski.com/tone-generator/

Basically the way I do it is I try to find the area of frequencies where my tinnitus/reactive tinnitus is, and then very slowly increase using the arrow buttons. Sometimes I click manually, one by one as I increase if I really want to catch out a single frequencies' notch.

I usually set the volume at around 10-20% on the generator itself and use one bar on my iPhone - but I sometimes have to go up a bar or two for the really low frequencies or else I might not the catch the difference. If you keep the volume at 100% or do the sweep too quickly you likely will not catch the damage if it's too mild (I've had this happen).

The trick is to notice a dip in volume. For myself there are only a few places where the sound dips out completely, but most of the time it's a small - yet noticeable - decrease.

I've only ever done it in complete silence too. I don't know if I would have noticed it with ambient noise in the background, so maybe go into a quiet bathroom or some place similar.

 

[Lucifer]

Sounds too good to be true. I am not getting my hopes up. I can barely make it through each day let alone wait 2 years for a supposed "miracle" treatment.

I thought the most realistic time frame for a revolutionary treatment was 10 years? In the research section, I thought regeneration and cochlear repair, hair cells etc. was 10 years away? Very confusing. But, for people who might think of waiting, two years is way better than 10.

I know how you are feeling. I also can barely make it through each day. But I feel like having at least some hope is making me get through each day.

 

[FGG]

It should reduce your tinnitus. The current formula does not go below 6kHz but once the new delivery method is created it should be able to restore all hearing in all the frequencies and reduce tinnitus but also hyperacusis.

I do believe it will make the ear pain go away as well. There was an Audion anecdote stating that they could rejoin the band due to their tinnitus and hyperacusis reducing.

The current formula didn't go beyond 6000Hz with their small safety dose. We won't have any idea of the penetrance until after phase 2a.

 

[HootOwl]

Sounds too good to be true. I am not getting my hopes up. I can barely make it through each day let alone wait 2 years for a supposed "miracle" treatment.

I thought the most realistic time frame for a revolutionary treatment was 10 years? In the research section, I thought regeneration and cochlear repair, hair cells etc. was 10 years away? Very confusing. But, for people who might think of waiting, two years is way better than 10.

Have you gotten a CT scan to rule out TMJ or seen a neurologist regarding trigeminal neuralgia? I think you might actually be able to treat your tinnitus now, because based off your symptoms I'm not entirely convinced your tinnitus is cochlear.

If it is, you should see a reduction with regenerative medicine, but if this is a severe case of TMJ then you likely could find relief much more quickly if we can get you a proper diagnosis. A CT scan would be the first step.

 

[Zugzug]

What is it supposed to do to people who have severe/loud tinnitus?

Do any of these treat ear pain as well?

I have three different theories and opinions why I have ear pain and was wondering if any of these treatments will treat my ear pain - is there any chance?

Sometimes, I can make a good guess why I am having ear pain but other times, I have no idea or can only take wild guesses.

Also, the most recent development regarding my ear pain is my right ear has ear pain more often than before. I don't know why. How common is ear pain with the guinea pigs of these studies and trials

I don't think ear pain is very common with many tinnitus patients, at least not chronic ear pain and AS BAD as it is, I still consider severe tinnitus as my worst problem.

Forgive my memory, but what caused your issue in the first place? Your problem doesn't sound like standard tinnitus; I wonder if certain tests could reveal a physical issue.

Have you tried magnesium, Neurontin, B12, Ginkgo Biloba? Do NSAIDs help the pain?

 

[just1morething]

@PeteJ, you could try this stuff. It fizzes when you add to hot water. I use a Kuerig. I had horrible static the last few days and it seemed to help. I also got my clonazepam refill today so not sure what all helped? My body was so stiff and sore also.