Why Is There No Cure for Tinnitus?

[Hazel]

do you have links to your previous publications

Here are our two most recent publications that we co-authored:

https://www.tinnitustalk.com/thread...mall-contribution-to-defining-subtypes.35452/

https://www.tinnitustalk.com/threads/somatic-tinnitus-and-treatment-⁠—-new-evidence.36003/

Let's talk further via PM how you can contribute!

 

[JaysterT]

We've successfully gathered quite large volumes of data in the past, see for instance this survey to which we got over 5,000 responses, or this one, which got over 6,000 responses.

These have already led to some academic publications, but there's more data analysis to be done on our existing datasets, even before we collect new data.

We do want to collect more data too. We currently use SurveyMonkey for this, but ideally we'd like to build our own data collection portal.


I agree, we need well-structured data, in large volumes.

May I ask what your skills are? You can also PM me and @Markku to discuss further.

This might sound like a dumb idea to some but we need to use large platforms to either gather data or get more awareness. Instagram for one comes to mind.

 

[all to gain]

I'm a university professor/researcher in psychology and cognitive/affective neuroscience. I've never studied tinnitus, the ear, or the auditory cortex before; but I'm well-trained in a) survey development, study design, data collection, and statistics, b) cognitive/emotional processing, the limbic system, EEG/MRI/neurostimulation, and c) the scientific publication process. I see Markku just started a PM with me - I'll follow up further there.

Please start researching tinnitus! You obviously have a background in related subjects.

We need to find a way to get MASSES of funding for this.

 

[MattS]

Please start researching tinnitus! You obviously have a background in related subjects.

We need to find a way to get MASSES of funding for this.

Yes, well, that would be the next step, is to get funding for the research. But if the Tinnitus Talk community is willing to help out, contribute answers, participate in the research, there may be quite a bit that can be done on the cheap.

 

[JohnAdams]

 

[all to gain]

In addition it's possible link to visual disturbances and dementia.

My vision went blurred at almost the same time as getting tinnitus.

 

[CricketEars]

Got a reply and they are interested in knowing more about the idea.

Trying to think what could be included:

That's an awesome idea!

• I think talking about how there's so much more to hearing issues than people think (they think we just hear quieter and need more volume, when in reality, there's distortion, reverberation, hyperacusis, etc). Also people think hearing aids just fix everything, but unfortunately they do not
• That habituation and coping (while necessary) are not cures or acceptable as an answer
• The stuff you see on TV or in read about on articles doesn't work
• The "5–10 year cure" has been promised for decades
• Those of us with hearing problems have a higher rate of developing dementia later on

Just my thoughts. Also if the documentary needs a video editor, let me know.

 

[all to gain]

That's an awesome idea!

• I think talking about how there's so much more to hearing issues than people think (they think we just hear quieter and need more volume, when in reality, there's distortion, reverberation, hyperacusis, etc). Also people think hearing aids just fix everything, but unfortunately they do not
• That habituation and coping (while necessary) are not cures or acceptable as an answer
• The stuff you see on TV or in read about on articles doesn't work
• The "5–10 year cure" has been promised for decades
• Those of us with hearing problems have a higher rate of developing dementia later on

Just my thoughts. Also if the documentary needs a video editor, let me know.

It might not get anywhere, will have to see if they like the idea. There's no guarantee. The documentary filmmaker I know makes them for both US and UK TV.

 

[Hazel]

It might not get anywhere, will have to see if they like the idea. There's no guarantee. The documentary filmmaker I know makes them for both US and UK TV.

Let us know if you get anywhere! We've had multiple members over the years, even semi-professional film producers, promise to create an awareness raising documentary, but so far no one has pulled it off

If you do manage however, we'd love to publish it as a Tinnitus Hub video - you can find our video channel here on YouTube or here on Vimeo.

 

[all to gain]

Let us know if you get anywhere! We've had multiple members over the years, even semi-professional film producers, promise to create an awareness raising documentary, but so far no one has pulled it off

If you do manage however, we'd love to publish it as a Tinnitus Hub video - you can find our video channel here on YouTube or here on Vimeo.

Let's see what happens. What seems like a good idea to us, doesn't necessarily sound like a good idea to commercial filmmakers. And they would have to make money from it, so it wouldn't necessarily be a documentary that we would like.

 

[KMc24]

My vision went blurred at almost the same time as getting tinnitus.

I've developed more floaters, and now have visual snow and increased sensitivity to light.

 

[JohnAdams]

My vision went blurred at almost the same time as getting tinnitus.

wow, now that's an insight. Do you have any idea why?

 

[Piney]

Concerning movies and documentaries I thought Lady Gaga was going to do some kind of outreach or speech after the success of her movie. I tried to write a letter and send it out but couldn't figure out where to send it. Figured while her movie was buzzing maybe Hollywood would jump up on a benefit to add to their list. At least a small mention or small benefit.

 

[jeff W]

I've emailed a documentary filmmaker I loosely know to see if he is interested in making a film/series. May so no, but no harm in trying.

Louis Theroux?

 

[jeff W]

This is the million dollar question isn't it? The reason many of you are here every day asking for help, venting your frustrations, and bonding over this affliction is that we don't have a cure. And what's worse we don't yet seem close to it either. This article provides a comprehensive overview of all the reasons why. It's co-authored, amongst others, by @David from the BTA.

I'm sure the article won't contain much new information for those of you intimately familiar with tinnitus research, but for the newbies or those who don't have the time or inclinication to spend many hours digging, it's a highly informative summary of a complex and multi-faceted topic.

It's written in quite an accessible manner, so if you have 30 minutes to spare I would say read the whole thing. But if you don't, here's my summary:

There's a wide gap between the treatments that patients want and what's actually available. Overwhelmingly, patients are NOT satisfied with current tinnitus services. They want treatments that truly alleviate the tinnitus itself, rather than help to cope with it. Yet, even though the economic incentives are clear, the amount of tinnitus research done is hugely disproportional to the size of the problem.

The main obstacles to a cure are listed as:

• A dire lack of research funding, compared to other conditions with a similar health/economic burden;
• The interdisciplinary nature of tinnitus research makes it quite fragmented;
• Even the basic facts about tinnitus, like how many people have it, are unclear and disputed;
• The heterogeneity of the condition, and its as yet undefined subtypes, complicate testing of treatments;
• Clinical trials often include or exclude the wrong patient groups;
• Designing a good trial is hard because of the lack of objective outcome measures or biomarkers;
• The basic brain mechanisms underlying tinnitus are still unknown (different theories exist);
• Treatments that work in animal models often fail in human subjects;
• Some drugs may only work for patients who've had tinnitus for shorter/longer;
• There is no agreement on what a "cure" even means — total eradication of the tinnitus might not be realistic;
• There are few precedents for how to get a tinnitus drug to market.

The article does not pose much in terms of solutions, but perhaps that was deliberate. Hopefully, this is just a first step and further discussion and collaboration will follow, which will lead to concrete solutions.

One angle.

 

[all to gain]

wow, now that's an insight. Do you have any idea why?

Pretty sure due to an ototoxic reaction to Prozac and/or Propranolol.

I'm gutted by it.

 

[MattS]

One angle.

There is a certain amount of this, yes. But it's becoming much less pervasive, with both open science movements, and the value of null results, becoming increasingly appreciated. As a scientist, I think it's fair to say that the vast majority of us are doing our very best; intentional misdirection and subversiveness is very rare.

 

[JohnAdams]

It's our damn problem so maybe we should be the ones to solve it?

We already know that most people don't even give two shits about us because they are all normies that don't even like to think about negative stuff. We are the ones with the most incentive here. We should just pull ourselves up by our own bootstraps and take our destiny into our own hands.

 

[Rb86]

What can average Joe's like you and I do to accelerate the process to curing tinnitus and hearing loss?

I find a lot of us on Tinnitus Talk will research and research and research, which will only place a lot of info in that one person's mind - but that one person isn't performing actual lab research themselves. They just become more knowledgeable about current studies, which is not necessarily instrumental in making things happen.

I suggest we "put the aces in their places", and arm scientists with what they need to accelerate truly finding a cure.

So what can we average Joe's do to make a difference? Sure, money helps... but I think awareness, and political involvement will go further - allowing REAL money to be invested.

The fact that so many military veterans suffer from tinnitus, and also the recent 3M earplug lawsuit plays in our favor.

So what's next? How can I organize Tinnitus Talk to effectively get our voices heard from our politicians?

Does signing online petitions help? Does calling your local senator, congressman/woman help?

What should we do? I've never done any of that, but I am inspired that this health ailment is getting more attention than ever before, and I'd like to help us all see a cure.

 

[JohnAdams]

I think there is a cure but we just don't know what it is yet.

 

[Victoria76]

I'm willing to donate some money, but how do I know where to donate it if I don't know which set of research is most likely to produce results? All these different projects ought to be combined on a global scale.

 

[hans01]

Thanks Hazel, indeed very though question

From living with tinnitus since 20 years now, self experimentation and a lot of lecture regarding tinnitus (thanks to this forum) & other health issues (I also have fibromyalgia since a few years & sleep apneas) I think I'm on to something. and if I can trust my own findings I believe it has to do with unbalance of neurotransmitters and down-regulation of some important receptors in the brain. Long time exposure to stress, traumatic events, sad thinking etc. has completely down-regulated my serotonin levels/receptors. I seem to be able to modulate and sometimes stop some of the tinnitus (and also my fibromyalgia and sleep apnea issues) using some supplements (5-htp, melatonine, phosphatidylserine, magnesium, ...), healthier eating habits, sunlight, exercise & more positive social interaction. The hardest part is to find a balance, but I have the impression that it's more stress then hearing related. Sad enough my workload is always way too high (working as freelancer, 3 children and almost no social interaction as I work alone from home) and this seems to be the reason I can't find good balance in my life, but I'm confident that I'm working in the right direction as fluctuations seem to happen more often than in the past.

A big thanks to you & the whole team for all your hard work, this forum is great!

Peace

 

[Rb86]

I read this inspiring article this morning. It's not about tinnitus, but how a man helped organize to cure his rare disease. A good read to inspire us all to fight the good fight.

https://www.cnn.com/2019/09/14/health/castleman-fajgenbaum-chasing-my-cure-wellness-trnd/index.html

 

[jeff W]

There is a certain amount of this, yes. But it's becoming much less pervasive, with both open science movements, and the value of null results, becoming increasingly appreciated. As a scientist, I think it's fair to say that the vast majority of us are doing our very best; intentional misdirection and subversiveness is very rare.

Organizations such as retractionwatch are having a fantastic effect as they provide a real hazard for those caught misrepresenting data (or lying as I was raised to understand it). The stick seems to have a particular effect on scientists which is good as we are running out of carrots to give them
https://regenexx.com/blog/california-institute-for-regenerative-medicine-fool-me-once/

Then their are those who take it even more seriously
https://www.nature.com/news/stem-cell-pioneer-blamed-media-bashing-in-suicide-note-1.15715

 

[all to gain]

I've emailed a documentary filmmaker I loosely know to see if he is interested in making a film/series. May so no, but no harm in trying.

Unfortunately he said he wasn't interested.

Sometimes though they say that and then 'steal' the idea to use for themselves. Don't think that's the case this time.

 

[UKBloke]

Why is there no cure for tinnitus? The amount of time I've spent pondering that question...

What I do feel these days is that until there's a sea-change of attitude in the medical establishment towards this affliction then we're really not going to see much more than the sticking plaster solutions we've had to date.

I sometimes feel I'm living in an alternate universe when I read some of the so-called official advice on how to cope with tinnitus. Advice like, Get good sleep. Are they fc*king serious? Get good sleep??? Getting good sleep is the one bloody thing that's most difficult with a condition that destroys the very thing necessary for good sleep, i.e. a bit of inner silence. When I read advice like, Get good sleep, I can't help think that we're dealing with morons.

I think another BIG problem with tinnitus is that we don't have the optics that other more visual diseases have. Like for example the effects on a person of advanced cancer or Parkinson's (the Michael J Fox presentation really springs to mind). To the outside world we look "normal", and in that respect I think tinnitus is a very hard disease to sell.

Something else that really hacks me off here in the UK is NICE's (National Institute for Health and Care Excellence) attitude to things like the Bi-modal stimulation stuff. As a circa 30 year tinnitus sufferer I haven't witnessed anything as promising, exciting (or for that matter something that makes as much sense) as bi-modal stimulation. There's heaps of research going on in all corners of the globe and yet when skimming over NICE's current recommendations (I'm referring to some recent linked documentation on Tinnitus Talk) on how primary care provider's should deal with tinnitus patients it would appear they leapfrog over bi-modal stimulation altogether (on account of there being a lack of research) and instead opt for what they've been doing for many years, which is sit the patient down over a nice cup of tea and have a friendly chat about the ringing noises in their ears and head. Excuse the pun, but, how very nice...

When the medical establishment fails patients as miserably as it has been, is it any wonder people go looking for their own cures? I actually think there's probably enough knowledge among the thousands of people in and around Tinnitus Talk that finding a crowd-sourced cure is a real possibility.

Anyhow, my left ear's been ringing like a b*tch these past couple of days. The only thing that ameliorates it is playing a bit of rain noise or taking a shower. Think I'll go and do both. Have a good evening all.

 

[eagerUser]

I think there is a cure but we just don't know what it is yet.

I feel exactly the same thing. There is a cure on the earth, It's like an escape room. A damn complicated escape room, one that no one ever solved while the key is pointing towards our butts.

 

[Greg Sacramento]

There are some treatments that may lower tinnitus for an individual from loud noise exposure, toxic medication use and hearing loss.

There is also some treatments available for specific physical and pulsatile tinnitus causes. Radiological testing, blood work and other tests are always needed. Even if the problem is suspected to be the jaw, neck, sinus or something else, the suspected condition may be secondary as being caused from another problem. A primary problem can be complex. One problem can associate to another problem and one problem can cause/lead to another problem. There will never be one treatment or cure for all with tinnitus.

 

[JasonWong]

Why is there no cure for tinnitus? The amount of time I've spent pondering that question...

From a previous post I would say this is the biggest reason:

The basic brain mechanisms underlying tinnitus are still unknown (different theories exist);

 

[Pawel1]

Why is there no cure for tinnitus? The amount of time I've spent pondering that question...

From a previous post I would say this is the biggest reason:

The basic brain mechanisms underlying tinnitus are still unknown (different theories exist);

I don't think there is Tinnitus, without brain inflammation. Brain inflammation is a result of overactive or incorrectly travelling signal pulses inside the brain.