I Think It's a Mistake to Bank on a Cure

[Zuben]

By that I mean even if there was a viable new treatment that appeared to be effective, you are talking years of trials, animal then human, before that treatment became accessible. So any given thing you hear, keep in mind that even if it did pan out it's likely a decade off.

I'm not trying to be pessimistic, I'm just saying that you shouldn't put off doing the work to achieve habituation in the hopes that a cure is coming down the pipe soon because realistically, it's not. Instead, realize that maybe your tinnitus won't be forever, but you can habituate until then and your efforts at habituation are within your control.

Solidarity.

 

[Daniel Lion]

By that I mean even if there was a viable new treatment that appeared to be effective, you are talking years of trials, animal then human, before that treatment became accessible. So any given thing you hear, keep in mind that even if it did pan out it's likely a decade off.

I'm not trying to be pessimistic, I'm just saying that you shouldn't put off doing the work to achieve habituation in the hopes that a cure is coming down the pipe soon because realistically, it's not. Instead, realize that maybe your tinnitus won't be forever, but you can habituate until then and your efforts at habituation are within your control.

Solidarity.

You are correct Zuben.

 

[Bill Bauer]

you are talking years of trials, animal then human, before that treatment became accessible.

Hasn't this been done for Lenire? Aren't the other products (University of Michigan's device, University of Minnesota's device, etc) well on their way to completing this process?

 

[Autumnly]

you can habituate until then and your efforts at habituation are within your control.

Not everyone can habituate.

• The potential role of auditory prediction error in decompensated tinnitus: An auditory mismatch negativity study
• Toward An Exploration of Habituating to Tinnitus: Perspectives on Sensory Gating

There are millions of people worldwide that, unfortunately, are dependent on medical treatments to be able to resume their lives.

Obviously, everyone should try as much as they can to still live their life but the extent to which this is possible can vary greatly between tinnitus sufferers.

 

[Michael Leigh]

By that I mean even if there was a viable new treatment that appeared to be effective, you are talking years of trials, animal then human, before that treatment became accessible. So any given thing you hear, keep in mind that even if it did pan out it's likely a decade off.

I'm not trying to be pessimistic, I'm just saying that you shouldn't put off doing the work to achieve habituation in the hopes that a cure is coming down the pipe soon because realistically, it's not. Instead, realize that maybe your tinnitus won't be forever, but you can habituate until then and your efforts at habituation are within your control.

Solidarity.

Well said @Zuben

Tinnitus is just one of many medical conditions for which there is no cure at present. This does not mean that research into finding one should not be sought. To the contrary, I welcome such endeavours but as you rightly say, one should focus on habituation and if possible seek whatever help is available in order to achieve this.

Tinnitus is a very common condition that comes in many forms and intensities and two people experience the same. However, in many cases people are able to habituate and carry on to live a fulfilling life doing everything that they want to. There is no doubt this condition has a dark and sinister side to it that some people do not like to talk about. When it reaches severe levels and this is sustained, it can seriously affect a person's mental and emotional wellbeing. If one should find themselves slipping into such a predicament, I implore them not to disregard taking medication. Properly managed these can be quite beneficial in helping to keep one's mind on an even keel. Admiral as it may seem to some that prefer to tough it out and not take medication, tinnitus has the propensity to bring even the most strongest amongst us to their knees. Please believe me I know whereof I speak.

Michael

 

[Daniel Lion]

Not everyone can habituate.

• The potential role of auditory prediction error in decompensated tinnitus: An auditory mismatch negativity study
• Toward An Exploration of Habituating to Tinnitus: Perspectives on Sensory Gating

There are millions of people worldwide that, unfortunately, are dependent on medical treatments to be able to resume their lives.

Obviously, everyone should try as much as they can to still live their life but the extent to which this is possible can vary greatly between tinnitus sufferers.

Autumnly I agree.

I leave it at that and defer to your smarts and eloquence. Thank you for your hard work and contributions.

 

[Fabrikat]

but you can habituate until then and your efforts at habituation are within your control.

If you have habituated to tinnitus, then you are fortunate.

Some people's tinnitus is so loud, that they cannot habituate.

Without the benefit of objective measurement, it is futile entering into a pissing contest over how loud one's tinnitus is.

For some people, holding onto the hope that a treatment can perhaps mildly relieve or even totally cure, is all they have.

Not everyone can habituate to tinnitus.

 

[Star64]

Well said @Zuben

Tinnitus is just one of many medical conditions for which there is no cure at present. This does not mean that research into finding one should not be sought. To the contrary, I welcome such endeavours but as you rightly say, one should focus on habituation and if possible seek whatever help is available in order to achieve this.

Tinnitus is a very common condition that comes in many forms and intensities and two people experience the same. However, in many cases people are able to habituate and carry on to live a fulfilling life doing everything that they want to. There is no doubt this condition has a dark and sinister side to it that some people do not like to talk about. When it reaches severe levels and this is sustained, it can seriously affect a person's mental and emotional wellbeing. If one should find themselves slipping into such a predicament, I implore them not to disregard taking medication. Properly managed these can be quite beneficial in helping to keep one's mind on an even keel. Admiral as it may seem to some that prefer to tough it out and not take medication, tinnitus has the propensity to bring even the most strongest amongst us to their knees. Please believe me I know whereof I speak.

Michael

I was one of the fortunate people that were able to habituate to their tinnitus, from 2001 till 2011 I coped fine with my tinnitus in fact I would even say I had silence. As we all know tinnitus can be unpredictable and in 2011 it came back with vengeance in both ears at first then just a high pitched screech in my left ear. This caused caused me so much distress. I could not mask it, I could not sleep I was in a bad state...

I found myself in that predicament you speak of and I started to take clonezapam .5 nightly for a 7 day period. Yes it gave me relief, I only used it sparingly at first as many days I did not need it... Then I started not sleeping and this drug worked wonders at getting me to sleep so I started taking it more frequently. I wont go into the horror story that happened after this, I am still in it... but my tinnitus is now 100 times worse than what it has ever been in the last 18 year period plus I have many more issues now. This drug may pull you back from the edge temporarily and as it is normal human extinct to want to keep getting relief and this drug may certainly give it to you, it is not sustainable for a vast majority of people. Its not a case of toughing it out, but working out if you want to roll the dice at being in a worse position than you were before, because this class of drug has pushed many over the edge. I am only trying to warn. I just do not want others to suffer.

 

[JohnAdams]

keep in mind that even if it did pan out it's likely a decade off.

nice fear mongering post.

 

[Allan1967]

We shouldn't bank on a cure but that shouldn't stop us...

1.Trying to habituate
2..Donating to research
3...Demanding cures are found
4....Emailing/Tweeting and generally bombarding the sh*t out of anyone who might have any influence at all over getting tinnitus high profile; getting funding... ANYTHING that furthers our cause.

This week alone I've tweeted...

Sylvester Stallone
Gerard Butler
and a few others...

No response, but we either die fighting or we continue to live on our knees...

 

[Michael Leigh]

@Star64

I am sorry to know that your tinnitus returned with a vengeance and the difficulties you experienced with clonazepam which I was prescribed in 2010 and still take. I think your post gives me the opportunity to explain the benefits of taking medication such as an antidepressant or the benzo clonazepam in preference to toughing it out as one risks becoming so down and depressed with the tinnitus they may seek to cause their own demise, as mentioned by a few members in this forum.

I have helped to counsel people with tinnitus, so know the depths this condition can take one to. My own experience with it spanning 23 years and corresponding with people has taught me a lot. Therefore, I disagree with you emphatically that medications hinder a tinnitus patient's recovery. In fact I believe the opposite is often true. When these drugs are properly administered and a patient monitored as in my case, they act as a safety net and can help prevent them sinking into the depths of oblivion, where they capable of doing anthing to escape the turmoil they are going through.

In 2008 my tinnitus increased to insurmountable levels due to a 2nd noise trauma. After 2 years of TRT for the second time, I had some success but not as before in 1996. In 2010 I was prescribed clonazepam as the tinnitus was unrelenting and it helped me.My ENT doctor advised me to only take it when my tinnitus was severe. 2x0.5mg which reduced the tinnitus over 24hrs to a low level or complete silence. I have never had a problem with it in 9 years.

Michael

 

[Zuben]

Well said @Zuben

Tinnitus is just one of many medical conditions for which there is no cure at present. This does not mean that research into finding one should not be sought. To the contrary, I welcome such endeavours but as you rightly say, one should focus on habituation and if possible seek whatever help is available in order to achieve this.

Tinnitus is a very common condition that comes in many forms and intensities and two people experience the same. However, in many cases people are able to habituate and carry on to live a fulfilling life doing everything that they want to. There is no doubt this condition has a dark and sinister side to it that some people do not like to talk about. When it reaches severe levels and this is sustained, it can seriously affect a person's mental and emotional wellbeing. If one should find themselves slipping into such a predicament, I implore them not to disregard taking medication. Properly managed these can be quite beneficial in helping to keep one's mind on an even keel. Admiral as it may seem to some that prefer to tough it out and not take medication, tinnitus has the propensity to bring even the most strongest amongst us to their knees. Please believe me I know whereof I speak.

Michael

I am not advocating for not taking medication, at all. If I came across that way, I did not mean to. My point is more that some people seem to bank more than they should on the idea that they will be free from their tinnitus shortly due to medical intervention. If they put too much faith in this idea, they will likely be disappointed. I think that medications to deal with the stress of tinnitus are, for many people, an important and worthwhile method of dealing with the situation.

 

[Zuben]

For some people, holding onto the hope that a treatment can perhaps mildly relieve or even totally cure, is all they have.

I hope that for myself as well. But that hope needs to be measured against the reality of the situation for it not to be false.

 

[Zuben]

nice fear mongering post.

10 years for a cure is a very optimistic time frame. Stating that plainly is not fear mongering.

 

[GregCA]

This week alone I've tweeted...

Sylvester Stallone
Gerard Butler
and a few others...

No response, but we either die fighting or we continue to live on our knees...

Can you please link to your tweets?

 

[Michael Leigh]

I am not advocating for not taking medication, at all. If I came across that way, I did not mean to. My point is more that some people seem to bank more than they should on the idea that they will be free from their tinnitus shortly due to medical intervention. If they put too much faith in this idea, they will likely be disappointed. I think that medications to deal with the stress of tinnitus are, for many people, an important and worthwhile method of dealing with the situation.

I know you are not advocating medication. What a lot of people do not understand is that when tinnitus is severe, it can become seriously debilitating. Under these circumstances I don't care who it is, it will wear them down to the point where they will want to commit suicide to escape the turmoil they are going through. Unless a person with tinnitus has experienced this, then they do not fully understand what it is capable of doing to a person's mental and emotional wellbeing. Medication, whether antidepressant or benzo such as clonazepam, can bring some relief to help prevent a person becoming too down. I am not saying or advocating a person should stay on these medications long term. However, when tinnitus reaches severe levels there are not a lot of options available to help someone.

Michael

https://www.tinnitustalk.com/threads/acquiring-a-positive-mindset.23969/
https://www.tinnitustalk.com/threads/tinnitus-and-the-negative-mindset.23705/
https://www.tinnitustalk.com/threads/the-habituation-process.20767/
https://www.tinnitustalk.com/threads/is-positivity-important.23150/

 

[Allan1967]

Can you please link to your tweets?

I don't know how to do that [not sure where the Tweet goes after I've sent it]... but I ask them respectfully if they have ever considered being an spokesperson as a fellow tinnitus sufferer because the tinnitus community really need a global figure.

Exact wording:

'Dear Mr Stallone. I sat in awe of you as a 16 yr old boy at the cinema watching First Blood. I know you have Tinnitus. Have you ever considered being a spokesperson for research towards cures please? Our T-community needs a man like you to raise our profile. TY'

To Gerard Butler:

'Dear Mr Butler. Fellow Scotsman here. Have you ever considered being an advocate for a Tinnitus cure? The BTA would love to have a man of your fame onboard. So many returning soldiers are afflicted.'

 

[Zuben]

I know you are not advocating medication.

Again, you are misreading me. I am not advocating NOT taking medication. I think taking medication to deal with tinnitus is fine.

 

[JohnAdams]

10 years for a cure is a very optimistic time frame. Stating that plainly is not fear mongering.

There's Lenire, which is already out, and some people are reporting to be essentially cured. Susan Shore's thing is coming soon. FX-322 entering phase 2, Regain is in phase 2.
You're just pulling numbers out of your ass and not factoring in current treatments into your nonsensical predictions.

 

[Tex]

There is only so much money for medical research to go around. Unfortunately Tinnitus is not even close to the front of the line for the funds.

 

[Zuben]

There's Lenire, which is already out, and some people are reporting to be essentially cured. Susan Shore's thing is coming soon. FX-322 entering phase 2, Regain is in phase 2.
You're just pulling numbers out of your ass and not factoring in current treatments into your nonsensical predictions.

Lenire is not a cure nor being touted as such; it is a treatment that helps curb tinnitus to some extent in some cases. FX-322 is a hearing restoration drug, not a cure for tinnitus; the same is true of Regain. Either may, or may not, help with any given tinnitus case. Suggesting that there is no effective cure for tinnitus in the pipeline is not fear mongering; it's quite accurate. The people making these treatments and drugs would likely agree with that.

 

[GregCA]

I don't know how to do that [not sure where the Tweet goes after I've sent it]... but I ask them respectfully if they have ever considered being an spokesperson as a fellow tinnitus sufferer because the tinnitus community really need a global figure.

Exact wording:

'Dear Mr Stallone. I sat in awe of you as a 16 yr old boy at the cinema watching First Blood. I know you have Tinnitus. Have you ever considered being a spokesperson for research towards cures please? Our T-community needs a man like you to raise our profile. TY'

To Gerard Butler:

'Dear Mr Butler. Fellow Scotsman here. Have you ever considered being an advocate for a Tinnitus cure? The BTA would love to have a man of your fame onboard. So many returning soldiers are afflicted.'

Thanks for the info!
Did you send that as a private message or public?

Many celebrities leave their social management to a firm. The actual celebrity may not have seen your message at all. Someone else is filtering for them (you can imagine they receive hundreds a day, literally).

 

[Allan1967]

Thanks for the info!
Did you send that as a private message or public?

Many celebrities leave their social management to a firm. The actual celebrity may not have seen your message at all. Someone else is filtering for them (you can imagine they receive hundreds a day, literally).

Just by a Tweet.

 

[Luman]

I'd recommend concentrating on habituation first, because we may be in for a long wait for a cure.

 

[Wojtek Kalka]

There will be a cure in hmm 100-250 years when the world falls apart anyway, learn to accept as it is .. and carpe diem

 

[JohnAdams]

The people making these treatments and drugs would likely agree with that.

Actually, Will McLean, one of the inventors of FZ-322, on a Reddit post stated that he thinks restoring hearing will help with tinnitus. So, you're wrong about that. We all already know that these things might not work, you're not educating anyone on anything here and your figure for 10 years is very stupid. You don't know.

 

[BobDigi]

ou are talking years of trials, animal then human, before that treatment became accessible.

Well said. I don't think we'll be seeing a cure in our lifetime. It's sad but I believe true.

 

[fishbone]

learn to accept as it is

 

[Zuben]

Actually, Will McLean, one of the inventors of FZ-322, on a Reddit post stated that he thinks restoring hearing will help with tinnitus. So, you're wrong about that. We all already know that these things might not work, you're not educating anyone on anything here and your figure for 10 years is very stupid. You don't know.

It absolutely could help people with hearing loss related tinnitus and the expectation is that if it works to reduce hearing loss it will help with hearing loss induced tinnitus as well. Help isn't the same as a cure (although for a few people, it might be) and not all tinnitus is related to hearing loss. Will McLean does not think his drug is a cure for tinnitus. In fact, even if all of these products work exactly as expected, none of them are a functional cure for tinnitus. I think we're speaking past each other about what cure means: I don't mean tinnitus treatments don't or won't exist. A cure would entail a treatment or drug that would reliably end tinnitus (not simply reduce the symptom or the anxiety it provokes) for a significant majority of people who experience tinnitus. There are no such drugs or treatments undergoing clinical trials.

I disagree that a ten year time frame is stupid. There are currently no cures undergoing clinical trials. Clinical trials through 3 stages often takes about ten years. So ten years is about as optimistic as we should get at the moment for a cure.

 

[AVIYT]

Well said @Zuben

Tinnitus is just one of many medical conditions for which there is no cure at present. This does not mean that research into finding one should not be sought. To the contrary, I welcome such endeavours but as you rightly say, one should focus on habituation and if possible seek whatever help is available in order to achieve this.

Tinnitus is a very common condition that comes in many forms and intensities and two people experience the same. However, in many cases people are able to habituate and carry on to live a fulfilling life doing everything that they want to. There is no doubt this condition has a dark and sinister side to it that some people do not like to talk about. When it reaches severe levels and this is sustained, it can seriously affect a person's mental and emotional wellbeing. If one should find themselves slipping into such a predicament, I implore them not to disregard taking medication. Properly managed these can be quite beneficial in helping to keep one's mind on an even keel. Admiral as it may seem to some that prefer to tough it out and not take medication, tinnitus has the propensity to bring even the most strongest amongst us to their knees. Please believe me I know whereof I speak.

Michael

Medication doesn't work for all. There are some severe cases like mine where I cannot habituate, have tried very many things, it's only worsened in volume/intensity and medication has made mine worse. Had I not tried SSRIs, I think it might've been a lower volume. I gained a new tone thanks to Zoloft and I took it for only 2 days when I got it, I toughed out 2 weeks but then I didn't see anything to get better.. it was getting worse, and since medication is the reason I'm in this mess, I called quits. Xanax helps a few times in a month, but when I took it for a few days in a row I know withdrawals come into place.

There needs to be a cure for the severe cases where medication can't be used and habituation can't be achieved. Would I love to habituate? Yes, yes, a million times yes. But so far, my financial situation is getting worse and I can't work in quiet or loud environments. I can't read, so I can't study. I can do very little.