Lenire Tinnitus Treatment

[Joe Smith]

Have you tried using a noise app on your phone?

I use an iPhone app called White Noise, which is great because it allows a fine selection of white noise, so I can really target the specific frequencies of my ear ringing.

For me the very thin band of "violet" white noise is right where my T sits, and if my ears are bothering me I can just place the iphone on my desk (or sofa or wherever I'm seated) and dial it just enough to cover the ringing. Because it's such a thin targeted noise I hear everything else and it's like the ringing on my ears just stops. It can be great to just relax the mind for a while if you become too fixated on the ringing.

Yeah, violet noise is pretty close to my frequency/masks pretty well. I'm mostly using at night, I use my older iPhone SE for this and just keep it by my bedside.

 

[ns156]

I haven't read this thread, but Lenire has pretty bad reception in the wider tinnitus community - the studies they used did not do any proper controls for placebo whatsoever, so they cannot be relied upon.

The actual proven to work device (with controls done to rule out placebo) is the so called 'Susan Shore' device. It should be receiving FDA submission within this year or so.

According to the studies they did, over a 6 week period, over half of the subjects noticed a 50-75% reduction in their perceptive volume of the tinnitus, and these results lasted up to a 24 week follow-up period.

 

[ns156]

I know that’s supposed to be the case and clearly it is the case for some. So it varies per individual case.

For me the best foam earplugs combined with ear muffs (the ones used in construction) were not enough: the MRI had terrible effects on my Tinnitus and hyperacusis. That’s been the experience of quite a number of people with those conditions, and why MRIs are a source of consternation in the Tinnitus hyperacusis community.

Honestly, this is probably more psychological than anything. An MRI machine is usually around 100-120dB, peaking at 130dB. Earplugs + earmuffs (tops out at 36 NRR) will absolutely bring the volume levels down to safe ones for any short term MRI scans that don't last hours.

 

[Salt]

Before discussing or announcing any new treatment please (re)read this ...

 

[ns156]

Cochrane overview treatment of tinnitus (Mirtazapin from above also mentioned):

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6464745/

2017, doesn't deal with the susan shore device which has proper controlled studies done. Irrelevant to what I was posting.

The short of it is that *nothing* is proven to do anything to tinnitus (TMD and physical issues excepted) except cognitive behavioural therapy and this shore device.

 

[Salt]

We will see in the future (what Susan will give to science) ... my personal view on it: there was no and there will be no omnibus for every single kind of tinnitus.
Or the other way: learn to live with (means: ignore). Friend of mine is HNO (hear nose throat) and told me, everyone has ear noises, so why bother?
I can cope with.

 

[MattHooper]

Honestly, this is probably more psychological than anything. An MRI machine is usually around 100-120dB, peaking at 130dB. Earplugs + earmuffs (tops out at 36 NRR) will absolutely bring the volume levels down to safe ones for any short term MRI scans that don't last hours.

Individual threshholds for tinnitus and hyperacusis are different.

I can say I have had my hyperacusis and Tinnitus boosted to very high levels in being exposed to sound quieter than those levels. 90dB continuous would be VERY hard on my ears.

 

[ns156]

Individual threshholds for tinnitus and hyperacusis are different.

Which are psychological. The actual physical damaging mechanisms are pretty well understood, and if you're well below them, then that's not what is happening.

One problem with hyperacusis is people tend to retreat into silence to avoid triggering it, which ends up making it worse.

 

[ns156]

We will see in the future (what Susan will give to science) ... my personal view on it: there was no and there will be no omnibus for every single kind of tinnitus.
Or the other way: learn to live with (means: ignore). Friend of mine is HNO (hear nose throat) and told me, everyone has ear noises, so why bother?
I can cope with.

That is true. The Susan Shore device was focused mainly on somatic types of tinnitus (aka, you can change the pitch/tone/volume of it with physical movements of your body). It was extremely effective at treating this type of tinnitus.

Fortunately, somatic tinnitus IIRC makes up around 75% or so of all tinnitus cases, IIRC.

 

[Salt]

2017

Nails the point where nothing significant was to be reported, and as nothing afterwards was reported there was nothing significant to be reported (sounds bit like Cohen but it's not Suzanne)

 

[MattHooper]

Which are psychological. The actual physical damaging mechanisms are pretty well understood, and if you're well below them, then that's not what is happening.

One problem with hyperacusis is people tend to retreat into silence to avoid triggering it, which ends up making it worse.

Yes I'm familiar with the different views and studies on T and Hyperacusis, and treatment concepts.

A sound doesn't need to produce more actual damage in order to trigger either T or H spikes, nor does it mean it's all "psychological" as in derived merely from a psychological attitude. The problem for instance with H is several, including that the brain may have "turned up the volume" on sounds around areas of new or old cell damage, but also that the brain has been re-wired to see sound (or certain frequencies) as a threat, and hence it can literally change the character of sound including making it
painful. It's a deep brain thing, not just a psychological attitude, and so you can't just make it go away simply by chilling out or ignoring it.

When my H was bad, sound was terribly distorted, my hearing was unbalanced between my ears, e.g. one ear would hear sound like the highs were cranked way up, the other like they were more dull, and even chewing food created a crazy white noise static sound. It took two years of treatment before I was better.

I'm very used to employing the attitude of not over protecting my ears when I get a spike in H or T, so I know that this can help get through a spike vs obsessing over it. But it is far from in control on the level of just being psychological.

 

[ns156]

Yes I'm familiar with the different views and studies on T and Hyperacusis, and treatment concepts.

A sound doesn't need to produce more actual damage in order to trigger either T or H spikes, nor does it mean it's all "psychological" as in derived merely from a psychological attitude. The problem for instance with H is several, including that the brain may have "turned up the volume" on sounds around areas of new or old cell damage, but also that the brain has been re-wired to see sound (or certain frequencies) as a threat, and hence it can literally change the character of sound including making it
painful. It's a deep brain thing, not just a psychological attitude, and so you can't just make it go away simply by chilling out or ignoring it.

When my H was bad, sound was terribly distorted, my hearing was unbalanced between my ears, e.g. one ear would hear sound like the highs were cranked way up, the other like they were more dull, and even chewing food created a crazy white noise static sound. It took two years of treatment before I was better.

I'm very used to employing the attitude of not over protecting my ears when I get a spike in H or T, so I know that this can help get through a spike vs obsessing over it. But it is far from in control on the level of just being psychological.

What you just described 'brain re-wired to see sound as a threat' is literally what you are describing as psychological.

There is a reason why CBT is pretty much the only known (apart from the potential Susan shore device) method to work in alleviating tinnitus, but it is a massive undertaking for people who cannot help but obsess over their T and H. You don't deal with it by 'chilling out or ignoring it', you do the opposite. You engage with the T, you listen to the tone it makes, you get very used to hearing it and changing your attitude from a negative to a more positive one: that is how you get over the hurdle that allows your brain to stop seeing these sounds as a threat and learning to quite literally ignore them and reduce them in volume. It sounds like voodoo magic, but it actually works. Trying to drown them out or ignore them doesn't actually help at all in the long run.

I will admit that there can be cases of severe acoustic trauma that completely mess up the inner structures of the ear (such as say explosions), but there are far more rare compared to the majority of cases.

Note: This method can have setbacks if your T changes for whatever reason (such as illness), but you simply start re-training over again.

 

[Andysu]

So the question comes down to is ridding yourself of tinnitus worth about $5k? I wonder if the system is resellable.

Martin

$5k , for tinnitus it only cost me 79p at ABC 1 the result was battlestar galactica sensurround at 120db some rumours 130dB , 1979 and hissss sound is all i often hear on most days , both sides , or left or maybe right side ,
odd since jan 2024 on heart medication , i noticed more than over week , not noticed much , i didn't think for moment it had cleared , its back ! been noticing past week or more march , hisss and again tonight , hissss
hard say what frequency ? i think its more like around 8khz or 9khz 10khz narrow band sounding like pink or white noise at very tight narrow Q bandwidth that seems appears to flow up and down maybe due to blood pressure , i have no idea , , ? ? i just have to deal with it

 

[Andysu]

I think the ringing is produced by the brain, not by the ear nerves.

well the mind is like a computer for REW to receive the pink noise from microphone which is like sort of like the ear , ( we all know that isn't so )
so the mind , my mind gets 120/130dB of battlestar galactica sensurround for 120mins and i notice this noise since 1979 and i not been near any other sound system i can think of , other than sensurround , , so my mind was subjected to the high spl levels ? its got to be the ears inner ear that was damaged and if damaged then so , it can't be really fixed , i say we have to deal with it , sure it can drive one to being angry ,

when we sleep that's when we don't notice it , same if you get drunk intoxicated and doze off at a party and you don't notice the tinnitus and certainly not the rest of loud party until come conscious
when i blacked out , not had episode where i blacked out for many months now , but once i noticed my iris closing to pitch darkness and tinnitus faded and i was unconscious for period of around 3 to 5 hard say how many seconds bu felt like i died in the seat , then the blood flow must have started again , i have no idea , expect it was scary

 

[ns156]

well the mind is like a computer for REW to receive the pink noise from microphone which is like sort of like the ear , ( we all know that isn't so )
so the mind , my mind gets 120/130dB of battlestar galactica sensurround for 120mins and i notice this noise since 1979 and i not been near any other sound system i can think of , other than sensurround , , so my mind was subjected to the high spl levels ? its got to be the ears inner ear that was damaged and if damaged then so , it can't be really fixed , i say we have to deal with it , sure it can drive one to being angry ,

when we sleep that's when we don't notice it , same if you get drunk intoxicated and doze off at a party and you don't notice the tinnitus and certainly not the rest of loud party until come conscious
when i blacked out , not had episode where i blacked out for many months now , but once i noticed my iris closing to pitch darkness and tinnitus faded and i was unconscious for period of around 3 to 5 hard say how many seconds bu felt like i died in the seat , then the blood flow must have started again , i have no idea , expect it was scary

A much newer paper (from last year) speculates that the actual cause of tinnitus is from the dorsal cochlear nucleus due to misfiring potassium channels - essentially some kind of trauma causes them to close. In most people they would reopen after a period of time; in patients with tinnitus, they don't.

Essentially, it's like epilepsy but in the auditory region of the brain. This would also explain why anti-epileptic medicines that utilised the potassium channels appeared to have beneficial effects on tinnitus for those who took them... the problem was the side effects were horrendous and unsustainable. I believe some companies are also trying to isolate that mechanism and use it for tinnitus drugs, but research on that is still very much early.

FWIW, the Susan Shore device applies electrode stimulation directly to the groups of nerves that feed to the dorsal cochlear nucleus (two electrodes, one on the cheek and one on the back of the neck. I have no idea what the hell the purpose of an electrode on your tongue is for) and is probably why it has a measured beneficial effect in studies.

 

[Martin]

$5k , for tinnitus it only cost me 79p at ABC 1 the result was battlestar galactica sensurround at 120db some rumours 130dB , 1979 and hissss sound is all i often hear on most days , both sides , or left or maybe right side ,
odd since jan 2024 on heart medication , i noticed more than over week , not noticed much , i didn't think for moment it had cleared , its back ! been noticing past week or more march , hisss and again tonight , hissss
hard say what frequency ? i think its more like around 8khz or 9khz 10khz narrow band sounding like pink or white noise at very tight narrow Q bandwidth that seems appears to flow up and down maybe due to blood pressure , i have no idea , , ? ? i just have to deal with it

Your description of your tinnitus is remarkably similar to my own. Mine is also a hiss, a high pitched frequency which, through experimentation, I have determined to be approximately 8,800Hz. It is sometimes more noticeable than others but remains a fairly constant companion.

Martin

 

[Andysu]

Your description of your tinnitus is remarkably similar to my own. Mine is also a hiss, a high pitched frequency which, through experimentation, I have determined to be approximately 8,800Hz. It is sometimes more noticeable than others but remains a fairly constant companion.

Martin

its possible this is also DNA , not that you are my separated twin , no but the DNA gene cells , building blocks , maybe i'm going a bit too far with that ? i don't know ? it must all have some sort of common connection ? but if it is DNA then it can not be reached or cured ? i have DNA damage to my cells with exposure to the sun , psoriasis which has sprung up - flared up since heart issue started around december 2023 , its been like this on and off for decades and if i had to trade with , psoriasis or tinnitus ? i trade the psoriasis as that is everywhere , mentally and psychologically deeply depressing , it could clear up and fade down at anytime ? but the damage is already been done , exposure to the sun, ( psoriasis sunburn badly to the face , port of , la havre , france 1983 ) , ( tinnitus bournemouth , ABC screen 1 battllestar galactia sensurround 1979 )

i trade the psoriasis as i have lived with tinnitus since 1979 and it didn't in the earlier days have me climbing the walls as much as psoriasis

so i think DNA but how is it possible that high levels of sound SPL dB can damage , well ear has , hair cells ? hence been attacked with too much overload of SPL , just as if one forgets to use sun-filter on a telescope can damage the eye's ( iris ) if its many seconds , short less 1 second may , ( it has i forgot and pulled away instantly felt direct heat on my left eye and resulted in 8 1/2 mins blind black darkness )

so i have
tinnitus
psoriasis
head injury (doctors still like to check on it )
heart issue

i think the above is , okay i like to trade heart issue , rest i can deal with , psoriasis can have lotions of cream treatment been there before for it 1990's ,
tinnitus can fade and be absent for week or so sometimes but always it comes back to haunt me ( sigh )
head injury lucky it could be worse ? if that JBL HF compression horn not fell 50ilbs on my head !
heart issue that is serious with head injury and no the bump on the head didn't cure the tinnitus lol , you'd thought it would ?

i feel , yes knackered and exhausted , i shall get some sleep and that is when i'm not self aware , of my issues , least my heart issue and lungs filling up with fluid , i didn't get anywhere like 8 hrs sleep , more like 1hr , rest staying awake


the other thing that bothers me , do or does any doctors personally have tinnitus themselves ? as they would know what it feels like ?
otherwise point is we can be more doctors of the condition to explore it to finding a possible , solution resolution cure

anyway i rambled enough , thanks

 

[Erici]

PBS has an interesting article about the Lenire treatment for tinitus that involves a device to tickle the tongue. Seems to work on 84% of the people tested.
https://www.npr.org/sections/health...01055/tinnitus-hearing-loss-ringing-ear-noise

 

[nanook]

You engage with the T, you listen to the tone it makes, you get very used to hearing it and changing your attitude from a negative to a more positive one: that is how you get over the hurdle that allows your brain to stop seeing these sounds as a threat and learning to quite literally ignore them and reduce them in volume.

This is finally my experience - and recommendation.

I'm having T since the age of 18. Sudden hearing loss after jogging -+ swimming on both ears ; right recovered soon, left took longer and left a high pitched T.
T was ok. for many years, but got just horrible after on night on a hard matrass (slept on the belly too long and obviously blocked the blood flow) - my left ear and everything around felt numb for the next days.
My T kept me from sleeping, I was lying in bed with my heart beating heavily. It was as if someone was yelling into my left ear.
Quality of life was essentially gone.

I underwent blood thinners, pressiorized O2 treatment, etc. No effect.

What finally helped, was a side comment of a therapist who trained us in some flavour of active relaxation.
She said "Don't look at your T as an enemy, think of it as a friend who warns you and reminds you to take more care of yourself."

This was back then almost 30 years ago. My T flames up from time to time (usually triggered by dehydration, grinding teeth, or too much stress in general leading to tension in the neck muscles. Otherwise I'm usually not aware of it unless it's very quiet or I"m reminded of it.

The volume was once measured at around 65dB SPL at ca. 10 kHz - a bit above my hearing for the left eat.

This way the observation of Amir is fully consistent with my experience - once you focus on it, it gets louder.

 

[nanook]

Some more info on "Susan's device" :

Dr. Susan Shore Answers Your Questions

Learn about Dr. Shore's bimodal stimulation device to treat tinnitus.

www.tinnitushub.com