- Mar 15, 2018
- 287
- Tinnitus Since
- 02/2018
- Cause of Tinnitus
- home theatre system + high pressure washer
Are you located in the Flemish part of Belgium?Seems very interesting. I'll probably be going.
Me too. Will you try Lenire once Brai3n offers it? I'm still trying to decide. When I asked if they would be providing Lenire they said they most likely would (this was some months ago), but that it was only one of the possible treatments and that a screening would have to be carried out first. Which made me wonder... if Neuromod can't predict whether it'll work for someone, how can they?Are you located in the Flemish part of Belgium?
Yes, it will have to be approved by the FDA.I'm sure I missed a mention, but does Lenire need a separate approval process to come to the US?
Nobody can predict if it'll work, unless the data already shows a pattern, revealing certain parameters for whom it could or should work. I guess they just wanted to look at the data and then decide if it was worth it to offer it.it was only one of the possible treatments and that a screening would have to be carried out first. Which made me wonder... if Neuromod can't predict whether it'll work for someone, how can they?
Neither my tinnitus nor hyperacusis are of such a level that I'd consider experimental treatment.Me too. Will you try Lenire once Brai3n offers it? I'm still trying to decide. When I asked if they would be providing Lenire they said they most likely would (this was some months ago), but that it was only one of the possible treatments and that a screening would have to be carried out first. Which made me wonder... if Neuromod can't predict whether it'll work for someone, how can they?
It's in the ear and the brain is responding to the lack of signal. Further removing the signal wouldn't fix this but restoring it would.Tinnitus --- Ear or Brain?
Ummmm... what was the good professor's opinion when all was said and done?
Now I ain't the sharpest tool in the box. My medical background or knowledge is very sparse, so my expertise on tinnitus is more from "below" as a sufferer/patient than from above as an academic or ENT.
One nugget of knowledge that I gleaned was that tinnitus starts in the inner ear -- at least noise induced tinnitus starts there. But later it is transposed to the brain.
How did the experts arrive at this? Which expert and when?
(No harm in keeping a history of this, but I recall reading some years ago that some researcher -- back in the 50s postulated that it was due to inner or outer hair-cell damage. This became widely accepted... why? Now due to the work of Liberman and what's her name, Jaruselski or some such name it could be due to ribbon ynapses from the hair cells being destroyed... or the stereocilia on the hair cells being destroyed or all three.
One piece of logic that kind of resonated with me was the following:
Back in the 80s or 90s a patient was suffering from such severe tinnitus that he asked that his hearing nerve be surgically severed. Well after the operation of course he was completely deaf -- couldn't hear at all --- except for one thing. You guessed it! Except for his tinnitus.
The fact that this procedure was repeated a few times with the same result on a few patients must excite your sympathy for the poor patients and also bring on your sense of exasperation that the ENTs don't network better.
But to my point: I came across this wonderful piece of logic in a paper from around 2005:
The fact that the above-mentioned patients could hear nothing except their tinnitus leads to the conclusion that the source of the tinnitus must be in their brain... at least not in their cochlea/ inner ear.
So far so good. Wonderful pristine logic. But I know that logic can be seductive.
My little question: Relate this above to the regeneration of hair-cells drive now taking place with Frequency Therapeutics, Hough Ear Institute, Auris Medical and some others.
Tinnitus --- Ear or Brain?
Ummmm... what was the good professor's opinion when all was said and done?
Now I ain't the sharpest tool in the box. My medical background or knowledge is very sparse, so my expertise on tinnitus is more from "below" as a sufferer/patient than from above as an academic or ENT.
One nugget of knowledge that I gleaned was that tinnitus starts in the inner ear -- at least noise induced tinnitus starts there. But later it is transposed to the brain.
How did the experts arrive at this? Which expert and when?
(No harm in keeping a history of this, but I recall reading some years ago that some researcher -- back in the 50s postulated that it was due to inner or outer hair-cell damage. This became widely accepted... why? Now due to the work of Liberman and what's her name, Jaruselski or some such name it could be due to ribbon ynapses from the hair cells being destroyed... or the stereocilia on the hair cells being destroyed or all three.
One piece of logic that kind of resonated with me was the following:
Back in the 80s or 90s a patient was suffering from such severe tinnitus that he asked that his hearing nerve be surgically severed. Well after the operation of course he was completely deaf -- couldn't hear at all --- except for one thing. You guessed it! Except for his tinnitus.
The fact that this procedure was repeated a few times with the same result on a few patients must excite your sympathy for the poor patients and also bring on your sense of exasperation that the ENTs don't network better.
But to my point: I came across this wonderful piece of logic in a paper from around 2005:
The fact that the above-mentioned patients could hear nothing except their tinnitus leads to the conclusion that the source of the tinnitus must be in their brain... at least not in their cochlea/ inner ear.
So far so good. Wonderful pristine logic. But I know that logic can be seductive.
My little question: Relate this above to the regeneration of hair-cells drive now taking place with Frequency Therapeutics, Hough Ear Institute, Auris Medical and some others.
That's obviously the million dollar question.It's in the ear and the brain is responding to the lack of signal. Further removing the signal wouldn't fix this but restoring it would.
I believe this is also why many scientists don't dare to make any hard statements about hearing regeneration resolving tinnitus. They must have doubts as well.
Personally, I think this problem can be tackled by fixing maladaptive plasticity in the brain *or* by fixing the cochlea. There is a user on the hearing aids thread who got her life back with Bi-Cross hearing aids where regular hearing aids did not help. If this was just due to masking, you wouldn't expect a difference between the two. Cochlear implants have also had a huge success in reducing or eliminating tinnitus and I can imagine they would be even more successful if they had extended frequencies.That's obviously the million dollar question.
Is it a hearing disorder or a brain disorder?
Warning: long text trying to arrange my thoughts in regards to that question.
Some people having hearing damage, even profound damage, and do not have tinnitus at all.
This is usually counteracted by people who believe hearing regeneration will help reduce tinnitus, by saying that we had a traumatic cochlear event that generated the tinnitus signal, versus the other group which had a slow natural decline of their hearing which the brain can handle.
I believe however there are just too many cases of people who don't fit that scenario and had significant sudden sensorineural hearing loss and still did not develop tinnitus.
Others have no apparent hearing damage whatsoever and this is then explained by saying that the current hearing tests are archaic and that it must be hidden hearing loss. It is a valid argument. Hidden hearing loss is certainly something that will be clarified in the future.
So, the theory many believe in, is that due to hearing damage you end up having hair cell damage (and/or synapses) and therefore you have trouble with certain frequencies, which consequently leads to maladaptive neuroplasticity at the level of the auditory cortices (tonotopic rearrangement) and so the brain creates a constant auditory phantom perception. This is an often used explanation for tinnitus.
The hope that several people therefore have is that, once the damaged frequencies are restored, that the brain will reverse the maladaptive neuroplasticity and will effectively alleviate the tinnitus sound.
Several scientists however point out that there is likely something additional going on. Sure, there are very valid reasons to accept that hearing loss and tinnitus are linked. I don't doubt that. There is an overwhelming amount of anecdotal evidence of people with noise induced hearing loss or through exposure of ototoxic drugs that shortly after end up having (chronic) tinnitus.
However, when you dig deeper into the neurological level of tinnitus, you will come to see that tinnitus can probably only develop if there is also a brain malfunctioning present. I am referring to the hypothesis that there could be a problem at the level of the thalamus for people with tinnitus. The thalamus receives sensory input and relays that input through the paralimbic system (amygdala, nucleus accumbens) to undergo an evaluation of, in our case, sound. It is used to attribute an emotion to a particular sound (pleasant or danger for example) where there is a mechanism present to inhibit or excite that input signal back to the thalamic reticular nucleus in the thalamus which, depending on the signal being suppressed or not, sends it through to the auditory cortices.
Dr Rauschecker hypothesises that, in people with tinnitus, there is a malfunctioning at this level (Nucleus Accumbens to TRN) and therefore the central gating mechanism at the level of the thalamus in your brain is not working and is sending information to your consciousness that should not pass through. This would likely be due to a neurotransmission malfunctioning at that particular intersection of your brain.
So if there is somehow a tinnitus signal present, it will be sent through, if the filter does not work. If the filter works on the other hand, despite having hearing damage, no tinnitus signal will be sent to your consciousness.
Having said that, Dr Rauschecker did state that it is really rare to have tinnitus without some form of hearing damage. Due to that statement I would suspect that alleviating the hearing damage should have a positive effect on (reducing) tinnitus, even if your filtering mechanism is not working.
So, if that hypothesis is correct, it's likely both a hearing disorder and a brain disorder that results in tinnitus, but if the root cause for the initial generation of the tinnitus signal really is the inner ear malfunctioning, then solving either the hearing disorder or the brain disorder should solve tinnitus.
It is clear however that we know a lot more about the inner ear than our most complex organ, the brain, so it's likely that that particular route has the most chance to solve our problem.
Provided this reasoning is correct of course, because maybe not everyone is convinced of that. Perhaps some people suspect that it is possible that it is a pure brain malfunctioning where the brain may be picking up somatic brain sounds, rather than some signal being generated due to an issue with your inner ear. In that case our outlook would not be good at all.
That's where the argument comes in that cutting the auditory nerve did not resolve tinnitus for some people. This is well known, but if the initial reasoning would be correct, shouldn't this also result in maladaptive neuroplasticity and a nightmarish tinnitus that spans all frequencies and is very loud? Since all frequencies are gone and there is no more hearing left at any loudness level. It simply points to our brain being the source of our problem. Unless cutting the nerve does not create any maladaptive neuroplasticity, but I can't wrap my head around it, if that were true.
Our current technology is simply not advanced enough to look into deep detail what is going wrong in our brains. We will probably need 100 years to be able to see the neuronal pathways in such detail that we can reverse engineer the whole brain in nano detail and easily see on which exact level neurons are dead, dysfunctional, out of synch, misfiring or where there are erroneous loops, et cetera. The next step, to intervene and precisely fix the brain, would probably take another 100 years.
So our best hope is that hearing regeneration will indeed help to reduce tinnitus. Nobody knows however, but it does look like we are going to find out in the coming 5, 10 or 20 years when we can repair all elements of the non-neurological hearing system (cochlea,...). I hope it will help us all, but there are no clear signs yet that it will. Perhaps at best, it will mask the tinnitus a little better.
I just don't know at all. Although I'm fascinated by regenerative hearing medicine, I don't dare to bet on it for tinnitus. I believe this is also why many scientists don't dare to make any hard statements about hearing regeneration resolving tinnitus. They must have doubts as well.
I'd love to hear from others how they analyse this problem and if they believe that hearing regeneration will resolve tinnitus.
I've been thinking about this for many months now and it worries me a lot.
Especially when I look at my own condition (having VSS with tinnitus) everything points in the direction that there is a problem in or around the thalamus of my brain. It makes me very sad to think that it might not be a hearing issue. It would mean there is no hope for me and many others. I hope I'm wrong, but deep down inside... it scares me.
Tinnitus --- Ear or Brain?
I think progenitor cell activation and growth factors are way more promising than "stem cell" treatments (and PCA is what FX-322 is doing and stimulating nerve/synapse growth is what others are doing).I also think it's a combination of both... we must look back at phantom pain... in lost limbs...
I think it's basically the same. A part has been removed (died off in the case of tinnitus) and the brain is then trying to compensate for this.
Just like phantom pains. Some days are better than others... some phantom pain is ok some days and other days it's burning and itching and so on. I think it's the same with tinnitus. (Spikes).
I have been interested in cochlear implants. But I haven't read much about it.
I think you could potentially fix the issue at either end if possible. If you could repair the damaged cells in the ear, the brain wouldn't have to compensate for the loss right? But if we can't fix that, maybe we can settle the brain's reaction. The science has proven that the brain is more active in certain parts when you have tinnitus, compared to when you don't. They saw this in tests on rats.
I guess it's just a race... stem cell research is the best hope so far for restoring the cells. But it hasn't come to fruition. So maybe we have to start looking at the brain...
Seems like certain medications (anti seizure and relaxants like Valium) can temporarily reduce or even get rid of the tinnitus.
Probably because they act on those over active parts of the brain...
But yeah I think it's a combination of both... just depends which one we learn to treat first...
I've been to so many therapies that I take your reply with a healthy dose of caution.It's in the ear and the brain is responding to the lack of signal. Further removing the signal wouldn't fix this but restoring it would.
All I can say is there is a huge recent shift in what medicine can actually do. In the past, the best (non surgical) medicine could do for most non infectious illness and not readily treatable cancer was to manage symptoms. But that is rapidly changing. We now are starting to have the knowledge to the address underlying causes.I've been to so many therapies that I take your reply with a healthy dose of caution.
Don't get me wrong on this. I'm over-awed by the way the entire vocabulary on the inner ear seems to have expanded and I'm "pin to my collar" trying to keep up with the new words and concepts and I'm baffled by the acronyms.
The optimism here is contagious and it really does look like the cavalry are finally on the way. There really have been some game-changers since my onset of tinnitus in the early 90s.
I recall a conversation that I had with a doctor -- way back. Not an audiology specialist but another branch. He said that there are very few things in medicine that can be fixed like turning on a switch -- surgery might be a different matter. But the thing about medicine is that very often you can manage a problem/disease/disability very successfully with the right knowledge and medicines.
So I kind of would put my money on them somehow managing to bring out a pill or injection that would turn down the volume a bit. A more modest hope than making me young again but maybe more realistic. But prove me wrong -- Please!
@broken soul.
If you can divert yourself by delving into the deeper areas of audiology neurology and otology and you are happy about it -- fine. go ahead. It's great to have another fine mind on the forum who can understand all the latest shite -- umm research. But somehow -- this is very cheeky of me-- I get the impression that Hootowl and FGG seem to be able to handle it better. You stand to lose very little if you -- on the side like, -- enroll in yoga or mindfulness or something like that. It will help you get through the long wait until the cavalry finally arrives.
To my own history:
Like ChrisBoyMonkey I served at the front so to speak in trying various outsider therapies... and be under no illusions there are casualties from these trials.
I underwent infusion therapy -- it didn't help. But I met other patients who were allergic to the infusion stuff and suffered quite a bit. What else did I do? I went into a pressure chamber 18 times... with eight other patients. It was like going down in a submarine. I wore a brace in my teeth just like a teenager for five months.
Forty five times I got an injection of Ginkgo Biloba and lay down to have low powered laser trained on my inner-ear while breathing in near pure oxygen or something near.
In the end I really did find something that worked in the sense that it helped me live with it.
I'll tell you later but I have to rush. and the therapy I'm talking about is scorned to the heavens now. But it did help me back then. Somehow it doesn't help any more.
Whatever else, make sure you get a professional to talk to over there in Belgium rather than battling on solo.
Reading all this stuff is making me extremely hopeful but also sad because I'm constantly reminded of the lack of funding that tinnitus (and hearing regeneration) companies have. I wish this could come sooner. I live everyday with fear because of how I hear but there is hope that one day it'll get better.All I can say is there is a huge recent shift in what medicine can actually do. In the past, the best (non surgical) medicine could do for most non infectious illness and not readily treatable cancer was to manage symptoms. But that is rapidly changing. We now are starting to have the knowledge to the address underlying causes.
For instance, they can *cure* sickle cell anemia now. Not just manage, but cure. That was literally impossible a few short years ago.
I don't know that we will hear like 5 year olds again (maybe eventually though...) but functional repair is happening. And I don't think we will only see subtle improvements. Subtle improvements don't double word scores.
What infusion treatment did you have?
Reading all this stuff is making me extremely hopeful but also sad because I'm constantly reminded of the lack of funding that tinnitus (and hearing regeneration) companies have. I wish this could come sooner. I live everyday with fear because of how I hear but there is hope that one day it'll get better.
Reading all this stuff is making me extremely hopeful but also sad because I'm constantly reminded of the lack of funding that tinnitus (and hearing regeneration) companies have. I wish this could come sooner. I live everyday with fear because of how I hear but there is hope that one day it'll get better.
Ah! Good to get back to you. My tinnitus came on so faintly back in 1992 and got gradually louder and louder within the next days and weeks. I had good insurance back then, but my ENT sent me to the hospital somewhat late. You have to understand that at that time I didn't know what was wrong with me. A relation of mine in the medical field phoned me in hospital and told me the name was called tinnitus. He did his research -- he was one of the early ones into the internet --which was hardly known back then and read out something along the sound of the following sentence:All I can say is there is a huge recent shift in what medicine can actually do. In the past, the best (non surgical) medicine could do for most non infectious illness and not readily treatable cancer was to manage symptoms. But that is rapidly changing. We now are starting to have the knowledge to the address underlying causes.
For instance, they can *cure* sickle cell anemia now. Not just manage, but cure. That was literally impossible a few short years ago.
I don't know that we will hear like 5 year olds again (maybe eventually though...) but functional repair is happening. And I don't think we will only see subtle improvements. Subtle improvements don't double word scores.
What infusion treatment did you have? [/