False Hope and Reality

[Dr. Ancill]

I have been a member of the forum for some years and noticed that by most frequent reason to reply is in response to whatever 'new' breakthrough are so-called treatment is being discussed. Ironically, most medical doctors are criticized on this Forum for not knowing what to do or for saying there is nothing that can be done. While in some ways, this is correct, I have also pointed out in many postings that anxiety, depression and sleep disturbance will all tend to 'amplify' the perception of the volume and intrusiveness of tinnitus. I also get particularly angered by the volume of 'fake science' and outrageous claims made by those that have a financial interest in so-called investigations and treatments of tinnitus. We have no proven pathology for the cause of tinnitus and therefore, it is not surprising, that we have no effective treatment.

Another reason that precipitates a posting from me is the belief that almost any medication will frequently cause disabling tinnitus whereas, in fact, this is clearly not the case. while there are some medications that have a high degree of ototoxicity, these are relatively few in number. For example, antidepressants are frequently accused of causing tinnitus on this forum and that is simply not the case. However, these postings will tend to frighten off tinnitus sufferers who might otherwise benefit but have become too fearful that they will only make their tinnitus worse.

 

[Autumnly]

Is the first part of your post in regards to Neuromod's new device?

Ironically, most medical doctors are criticized on this Forum for not knowing what to do or for saying there is nothing that can be done.

Most people don't seem to criticize the doctors themselves but the fact that there's no medical treatment for chronic tinnitus. However, with a condition as common as chronic tinnitus, it would be nice if ENTs could offer more support and advice other than "you have to learn to live with it" or at least word it differently.

I have also pointed out in many postings that anxiety, depression and sleep disturbance will all tend to 'amplify' the perception of the volume and intrusiveness of tinnitus.

Completely agree as long as it's not being used to say that people who can't habituate are simply anxious or stressed.

 

[hans799]

made by those that have a financial interest in so-called investigations and treatments of tinnitus. We have no proven pathology for the cause of tinnitus and therefore, it is not surprising, that we have no effective treatment.

And if studies are not performed, we never will. And if there's no financial interest, the studies won't be performed. What exactly are you proposing here? That researchers work for free, or that we shut up and don't discuss what's being released until the "experts" on Mount Olympus decide that we may?

I am doing my very best to be very polite here, Doctor, but based on my experiences with the healthcare system (which ranged from "learn to live with it" to actively harmful), I would sooner put my ears' health into the first random quack on this forum than into the vaunted medical establishment's.

 

[JohnAdams]

I have been a member of the forum for some years and noticed that by most frequent reason to reply is in response to whatever 'new' breakthrough are so-called treatment is being discussed. Ironically, most medical doctors are criticized on this Forum for not knowing what to do or for saying there is nothing that can be done. While in some ways, this is correct, I have also pointed out in many postings that anxiety, depression and sleep disturbance will all tend to 'amplify' the perception of the volume and intrusiveness of tinnitus. I also get particularly angered by the volume of 'fake science' and outrageous claims made by those that have a financial interest in so-called investigations and treatments of tinnitus. We have no proven pathology for the cause of tinnitus and therefore, it is not surprising, that we have no effective treatment.

Another reason that precipitates a posting from me is the belief that almost any medication will frequently cause disabling tinnitus whereas, in fact, this is clearly not the case. while there are some medications that have a high degree of ototoxicity, these are relatively few in number. For example, antidepressants are frequently accused of causing tinnitus on this forum and that is simply not the case. However, these postings will tend to frighten off tinnitus sufferers who might otherwise benefit but have become too fearful that they will only make their tinnitus worse.

You have no idea what you're talking about. I have received an effective treatment. Just because you don't know about it or haven't researched it doesn't mean it doesn't exist. Nay-saying know it all "doctors" like you are the problem.

 

[Snake]

I know what you're trying to say, I don't like alternative medicine either, same as a lot of the shady treatments discussed here where I think the only thing happening is the placebo effect.

BUT, here on Tinnitus Talk most of us are discussing normal real medicine and scientific approach, with proper clinical trials and with scientific evidence that this (potential treatment) could help. And all of this performed by actual professors and doctors.

I know that without one approved pathology of tinnitus it's a little like a wild-goose chase, but in real medicine there is a lot of things that we don't know how they work but they actually do work. Maybe one treatment does finally work (Susan Shore, Neuromod? Who knows) in some way and it will bring us closer to finding and establishing one approved pathology. Today we have theories and researchers try at least to work with those they believe are true. That vicious cycle must be put to an end finally, and doing actual research is the only way to achieve that.

False hope is bad, but the lack of hope is bad too. Maybe let's say that the odds are not good right now, but not that it's impossible to have a treatment one day, and I mean in our lifetime (I'm 21 and have had tinnitus for 8 years now, I'm tired and wan't to have a life one day) instead of some abstract date.

The possibility of a treatment / cure is what drives me to live and endure this torture. Because this is a torture, nothing less.

 

[Allan1967]

You have no idea what you're talking about. I have received an effective treatment. Just because you don't know about it or haven't researched it doesn't mean it doesn't exist. Nay-saying know it all "doctors" like you are the problem.

What was your effective treatment please John?

 

[Allan1967]

I have been a member of the forum for some years and noticed that by most frequent reason to reply is in response to whatever 'new' breakthrough are so-called treatment is being discussed. Ironically, most medical doctors are criticized on this Forum for not knowing what to do or for saying there is nothing that can be done. While in some ways, this is correct, I have also pointed out in many postings that anxiety, depression and sleep disturbance will all tend to 'amplify' the perception of the volume and intrusiveness of tinnitus. I also get particularly angered by the volume of 'fake science' and outrageous claims made by those that have a financial interest in so-called investigations and treatments of tinnitus. We have no proven pathology for the cause of tinnitus and therefore, it is not surprising, that we have no effective treatment.

Another reason that precipitates a posting from me is the belief that almost any medication will frequently cause disabling tinnitus whereas, in fact, this is clearly not the case. while there are some medications that have a high degree of ototoxicity, these are relatively few in number. For example, antidepressants are frequently accused of causing tinnitus on this forum and that is simply not the case. However, these postings will tend to frighten off tinnitus sufferers who might otherwise benefit but have become too fearful that they will only make their tinnitus worse.

That is reassuring to know @Dr. Ancill but what you have to remember is most of us a laymen and women when it comes to anti-depressants and in our darkest days and hours those of us who suffer badly are often looking for that little chink of light that we can control which will hopefully lead to some respite for us.

I for one appreciate your comments to me yesterday and I think its useful if the forum has a person on board who is prepared to offer advice. Often getting hold of a Doctor to discuss these small concerns and issues with is very difficult here in the UK.

 

[Dr. Ancill]

You are most welcome. As a fellow sufferer, I understand where you are coming from but I also want to make sure the information you get is accurate and that expectations are reasonable.

Unfortunately, tinnitus science is like so-called Climate Science for some in that they will only accept what they already believe in and see other results as some sport of conspiracy - a form of 'tinnitus science denial' !!

 

[JohnAdams]

What was your effective treatment please John?

PRP and bone marrow injections into my eardrums. Two weeks worth totally 72 injections.

 

[Lane]

For example, antidepressants are frequently accused of causing tinnitus on this forum and that is simply not the case.

The post below would seem to completely refute your assertion that antidepressants don't cause (or worsen) tinnitus (from THIS POST).

I could tolerate the tinnitus then but a few years later a Doctor prescribe me Prozac for anxiety as well, and she knew I had tinnitus and being a Dr she should be familiar with the Physicians Desk Reference that says that Prozac causes tinnitus and/or makes worse....within 2 months of taking Prozac my tinnitus shoot through the roof - I was on Prozac for 12 months before I took myself off it. That was in 2015, and the increase of tinnitus never subsided after coming off Prozac. -- I pray that I could go back to the tinnitus level before Prozac 2014 - that level was manageable.

You seem to be making the point that tinnitus and possible tinnitus treatments need to be looked at almost entirely from a scientific perspective. Since so little is known about many facets of tinnitus, depending solely on science would seem to unnecessarily restrict our options from the narrow perspective of that available science. I don't understand why anyone would want to do that.

I agree with you that there's a lot of information on this forum we should take with a giant grain of salt, but there's also a lot of information that can be extremely valuable to many tinnitus and hyperacusis sufferers. The internet--and this forum--allows us to share a lot of insights and experiences by many people in similar situations, which I find to be far more valuable than what the science surrounding tinnitus has to offer us at this point.

 

[Dr. Ancill]

I don't disagree with you that there is both helpful and unhelpful information on this forum but, at the end, the most important interventions will be based on medical science.

 

[JohnAdams]

I don't disagree with you that there is both helpful and unhelpful information on this forum but, at the end, the most important interventions will be based on medical science.

There are interventions and they are based on science.

 

[Dr. Ancill]

Is the first part of your post in regards to Neuromod's new device?

Most people don't seem to criticize the doctors themselves but the fact that there's no medical treatment for chronic tinnitus. However, with a condition as common as chronic tinnitus, it would be nice if ENTs could offer more support and advice other than "you have to learn to live with it" or at least word it differently.

Completely agree as long as it's not being used to say that people who can't habituate are simply anxious or stressed.

My post is in regards to Neromod's old and new device and anyone else's.

With regards to habituation, who best can do this and why is not known.

 

[PeteJ]

Another reason that precipitates a posting from me is the belief that almost any medication will frequently cause disabling tinnitus whereas, in fact, this is clearly not the case. while there are some medications that have a high degree of ototoxicity, these are relatively few in number. For example, antidepressants are frequently accused of causing tinnitus on this forum and that is simply not the case. However, these postings will tend to frighten off tinnitus sufferers who might otherwise benefit but have become too fearful that they will only make their tinnitus worse.

Define 'few in number?'

https://www.soundrelief.com/list-of-ototoxic-medications/

Other sources list several antidepressants as being ototoxic. People who are depressed, perhaps, don't want to risk any chance of their tinnitus becoming worse. Whether that is a reasonable decision based on scientific data or not is not the point.

They just don't want to risk anything that could possibly make it worse.

Doctors who are not aware or do not take any effort to be enlightened regarding the various 'forms' of tinnitus and experiences of tinnitus patients are the ones who are not complimented here?

Unfortunately, it seems to cover many doctors?

As for treatments and/or cures, everyone is desperate and hopeful for one. When companies and/or treatments stop looking as promising, it's human nature to become cynical, bitter or to feel betrayed or devastated.

 

[Kste Adams]

I would hesitate to make any blanket statements about what any medication will or will not do, especially in relation to as heterogeneous a condition as tinnitus. There are always outliers. One of my main peeves with a good deal of the medical establishment is that when confronted with patients' experiences that don't conform to established theory, they insist that the experiences are wrong. No. Data is what it is. If it doesn't agree with the theory, then the theory is wrong, or at best incomplete. At some point, much of what we think we know about anything will turn out to be wrong. All scientists, including those in medical fields, would do well to keep this in mind.

 

[Dr. Ancill]

I would hesitate to make any blanket statements about what any medication will or will not do, especially in relation to as heterogeneous a condition as tinnitus. There are always outliers. One of my main peeves with a good deal of the medical establishment is that when confronted with patients' experiences that don't conform to established theory, they insist that the experiences are wrong. No. Data is what it is. If it doesn't agree with the theory, then the theory is wrong, or at best incomplete. At some point, much of what we think we know about anything will turn out to be wrong. All scientists, including those in medical fields, would do well to keep this in mind.

It is my job to make such statements and I do so based on the best and most up-to-date data I can find. I think your comments about 'the medical establishment' are misplaced as they are incorrect. If it wasn't for the medical establishment, we would not have vaccines, insulin, immunotherapy, etc. and, yes, we are well aware of the Karl Popper view of theory and experimentation. Unfortunately, the brain remains a Black Box and we understand very little about the pathology of psychiatric and neurological disorders, including tinnitus. It is not the fault of caring practicing physicians that technology and medical science has so far failed to break into this Black Box but it is not for want of trying. Our theories to date have been wrong.

The idea that I and my medical colleagues are part of a some establishment conspiracy that strives to ignore what patients describe and the suffering they experience is ludicrous. Are there bad doctors - yes, of course. However, just as few patients do not speak for all, please do not judge all doctors because some are asses.

 

[Dr. Ancill]

Define 'few in number?'

https://www.soundrelief.com/list-of-ototoxic-medications/

Other sources list several antidepressants as being ototoxic. People who are depressed, perhaps, don't want to risk any chance of their tinnitus becoming worse. Whether that is a reasonable decision based on scientific data or not is not the point.

They just don't want to risk anything that could possibly make it worse.

Doctors who are not aware or do not take any effort to be enlightened regarding the various 'forms' of tinnitus and experiences of tinnitus patients are the ones who are not complimented here?

Unfortunately, it seems to cover many doctors?

As for treatments and/or cures, everyone is desperate and hopeful for one. When companies and/or treatments stop looking as promising, it's human nature to become cynical, bitter or to feel betrayed or devastated.

With regards to the list of ototoxic medications you cite with your Google search, the fact it is a Google search tells you all you need to know. The issue for any treating physician, such as myself, is not the absolute risk of ototoxicity (which in the majority of drugs listed is extremely small), the issue is balancing the risk-benefit conundrum. For example, will the prescribing of an antidepressant for a depressed and suicidal tinnitus patient improve or worsen the tinnitus and what if I do nothing?

With all respect, no Google search will answer that question. It takes years of training and experience of seeing and treating thousands of patients that, hopefully, makes living with that decision somewhat easier, although it is never easy.

Having said all that, I do understand that many tinnitus sufferers cannot find the help and support they need and I hope this forum will help to reduce that scourge.

 

[Dr. Ancill]

You have no idea what you're talking about. I have received an effective treatment. Just because you don't know about it or haven't researched it doesn't mean it doesn't exist. Nay-saying know it all "doctors" like you are the problem.

You are very fortunate but if this was a universal treatment then there would be no need for this forum.

 

[Agatha]

You are very fortunate but if this was a universal treatment then there would be no need for this forum.

Would you recommend to your own patient the treatment @JohnAdams had done, Dr. Ancill?

 

[Lane]

It is my job to make such statements....

Are you willing to change (or amend) your statement(s) about antidepressants not causing tinnitus? I noticed you conspicuously didn't respond to the persuasive testimonial by the woman who had a terrible exacerbation of her tinnitus from taking Prozac. Wouldn't you consider it part of your "job" to correct any false or misleading statements or assertions you make that you say are based on science?

 

[Dr. Ancill]

There is always a risk of ototoxicity from any medication but a testimonial is not science. I would not doubt that this happened to this woman but treating doctors cannot function with absolute risk or they would end up doing nothing.
I do not believe I made a false statement but, yes, I would correct any such error. However, in this case, I did not state that antidepressants could not cause tinnitus. I wrote that they would not frequently cause tinnitus and I stand by that.

 

[Dr. Ancill]

And if studies are not performed, we never will. And if there's no financial interest, the studies won't be performed. What exactly are you proposing here? That researchers work for free, or that we shut up and don't discuss what's being released until the "experts" on Mount Olympus decide that we may?

I am doing my very best to be very polite here, Doctor, but based on my experiences with the healthcare system (which ranged from "learn to live with it" to actively harmful), I would sooner put my ears' health into the first random quack on this forum than into the vaunted medical establishment's.

You make some great points. It is the competitive marketplace that should result in effective treatments but absent a clear understanding of what really causes tinnitus, all the current 'treatments' are oversold and overhyped. The 'experts' on Mount Olympus have not been any better so, as a tinnitus sufferer myself, I understand and share your frustration and irritation. However, I also get pissed off at the charlatans that try to profit from our suffering.

 

[JohnFox]

it would be nice if ENTs could offer more support and advice other than "you have to learn to live with it" or at least word it differently.

I wholeheartedly agree. Typical ENT doc..."Eh,.. it's your new reality. You just need to learn to live with it." "Oh, thanks doc. Can you at least tell me where there's a really high bridge?" The thing is, I have indeed gotten a lot of help with this thing including discovering this website. But any real help I have received, so far has had nothing to do with my doctor. It's all come from my own efforts born out of desperation.

 

[Kste Adams]

The idea that I and my medical colleagues are part of a some establishment conspiracy that strives to ignore what patients describe and the suffering they experience is ludicrous. Are there bad doctors - yes, of course. However, just as few patients do not speak for all, please do not judge all doctors because some are asses.

I don't think anyone is claiming there is a conspiracy. What I'm hearing from tinnitus sufferers is frustration with a certain... blindness... to things that fall outside one's expectations. That's not a criticism of the medical profession specifically - it's the human condition. And I'm absolutely not saying we should ignore science: it's the foundation of civilization and it's just freakin' cool to boot.

But I don't think it's realistic to expect tinnitus sufferers not to get excited about any possible bit of good news, even if things such as the Neuromod device don't perform as well as people hope. It's all about hope. It's all we've got right now. We eat, drink, breathe, sleep Hope. Of course we expect disappointments. Lord, do we know about disappointments. But any bit of progress gives us reasons to get up in the morning, put one foot in front of the other, and keep on keepin' on in the expectation that we may be able to resume lives that were derailed by this awful condition. For some desperate souls, it may even mean that suicide begins to look less likely.

So I'm all for hope. As long as the shiny new thing isn't a scam - and folks around here are pretty good at spotting scams - I say let's celebrate such progress as is occurring. It probably won't get us where we want to be - yet - but it will get us to a place where we can actually begin to imagine a positive outcome for ourselves.

 

[Dr. Ancill]

Would you recommend to your own patient the treatment @JohnAdams had done, Dr. Ancill?

No, not until there is reputable published evidence with the pathology, risks and benefits well-described. Stem-cell and PRP (platelet-rich plasma) injections have been recommended for a wide range of conditions, mainly for the pain from osteoarthritis - but with unclear results. I am a bit surprised that it is being offered for a neurological condition like tinnitus, for which there is little Phase I or II data, but I can understand why someone would accept this treatment.

 

[Tanni]

My post is in regards to Neromod's old and new device and anyone else's.

With regards to habituation, who best can do this and why is not known.

You make some great points. It is the competitive marketplace that should result in effective treatments but absent a clear understanding of what really causes tinnitus, all the current 'treatments' are oversold and overhyped. The 'experts' on Mount Olympus have not been any better so, as a tinnitus sufferer myself, I understand and share your frustration and irritation. However, I also get pissed off at the charlatans that try to profit from our suffering.

Thank you for taking the time to answer questions here. I see that you are a psychiatrist, so I imagine treatment wise you will be mostly focused on the obvious relationship between mental health and tinnitus.

However, don't you think the trial results of Neuromod's new device seem promising? I believe their recent trial has been submitted for peer review, so they must have some faith that it's based on medical science?

And as tinnitus is a symptom and not a condition in itself, couldn't it be the case that there are multiple causes of tinnitus and some treatments should only be expected to work for certain people anyway?

 

[Dr. Ancill]

Thank you for your kind comments. I am a neuropsychiatrist so I hope to manage more than the mental health aspects. In fact, I agree with all those who have posted here expressing their frustration with those who only look at the mental health issues. I also agree that tinnitus is likely a symptom of many different disorders and therefore simply trying to treat the symptom is not likely to help the many with tinnitus.

 

[Bill Bauer]

I have been a member of the forum for some years and noticed that by most frequent reason to reply is in response to whatever 'new' breakthrough are so-called treatment is being discussed. Ironically, most medical doctors are criticized on this Forum for not knowing what to do or for saying there is nothing that can be done. While in some ways, this is correct, I have also pointed out in many postings that anxiety, depression and sleep disturbance will all tend to 'amplify' the perception of the volume and intrusiveness of tinnitus. I also get particularly angered by the volume of 'fake science' and outrageous claims made by those that have a financial interest in so-called investigations and treatments of tinnitus. We have no proven pathology for the cause of tinnitus and therefore, it is not surprising, that we have no effective treatment.

Another reason that precipitates a posting from me is the belief that almost any medication will frequently cause disabling tinnitus whereas, in fact, this is clearly not the case. while there are some medications that have a high degree of ototoxicity, these are relatively few in number. For example, antidepressants are frequently accused of causing tinnitus on this forum and that is simply not the case. However, these postings will tend to frighten off tinnitus sufferers who might otherwise benefit but have become too fearful that they will only make their tinnitus worse.

Are you saying that most drugs listed on
http://hlaa-sbc.org/wp-content/uploads/2013/11/Ototoxic_Brochure.pdf
are not actually ototoxic?

What do you think of

Hearing Regeneration Trials

Spoiler

Frequency Therapeutics - FX-322
in Phase 1.5 (Results: December 2018)
Phase 2 (begin 2019)
Audion / Regain Trial
Phase 1/2 ongoing in the UK
Genvec / Novartis - CGF166
Phase 1/2 ongoing

Trials to begin in 2019 / Things to look out for in 2019

Spoiler

Neuromod (MuteButton)
launching their new device in January 2019 starting in Ireland, then Europe, then the US
results of their latest trial: 1H2019
Xenon Pharma - XEN-1101
Phase 2, expected to wrap up in 2nd quarter 2020
Frequency Therapeutics
Phase 2
Otonomy
1H19: OTO-313 (reduce tinnitus) Phase 1/2
1H19: OTO-413 (repairing synaptic damage) Phase 1/2
OTO-6XX (hair cell regeneration)
2H18: candidate selection
2019: Phase 1/2
University of Minnesota (device for tinnitus)
Phase 3 ?
University of Michigan (device for tinnitus)
perhaps updates on their currently ongoing trial
Estimated Primary Completion Date: September 2022
Estimated Study Completion Date: January 2023

 

[Greg Sacramento]

I also agree that tinnitus is likely a symptom of many different disorders and therefore simply trying to treat the symptom is not likely to help the many with tinnitus.

Agree. If the disorder is physical or in part responsible then that needs to be treated by medical treatment or life style changes if possible.

 

[Dr. Ancill]

Are you saying that most drugs listed on
http://hlaa-sbc.org/wp-content/uploads/2013/11/Ototoxic_Brochure.pdf
are not actually ototoxic?

What do you think of

No. What I am saying that such a list is so extensive, that almost everything can be ototoxic (although it is never clear how a medication gets on the list) so the list is impractical and unhelpful for the treating physician and unduly stressful for the patient. However, I don't mind when a patient brings such a list as it is my job to help them make the best decision for them but the list does not make them a therapeutic equal. I have to explain the risk-benefit balance and to do that, I have to have the necessary knowledge and experience.