Lecture ("Tinnitus: Ear or Brain") by Dirk De Ridder in Belgium on April 22, 2019

Discussion in 'Research News' started by Pero1234, Mar 27, 2019.

    1. Pero1234

      Pero1234 Member

      Tinnitus Since:
      02/2018
      Cause of Tinnitus:
      home theatre system + high pressure washer
      A colleague forwarded me an announcement for a lecture on tinnitus in Ghent, Belgium.

      Tinnitus: ear or brain.

      Presenter is Dirk De Ridder.

      I plan to go.

      Anything I should know about him? Or ask him, if I get the chance?

      D1231AB0-6605-4BEB-9E50-40ACECC6273D.jpeg
       
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    2. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      He has been around for a long time in tinnitus research.

      I would ask him what latest discovery in the last few years changed things he thought were true before.

      I am a bit afraid he is one of the old timers that cannot let go of his own ideas. Maybe they will be true, but I rather learn what the future brings than repetition of the past insights.

      So also ask maybe what research is he following and is most interested in and thinks is closest to reaching the goal of a cure.
       
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    3. Codaz

      Codaz Member

      Dr. Dirk De Ridder is very much into Deanxit + Rivotril. I visited him last month. Now he does consultations every 2 months at Brai3n in Ghent for tinnitus.

      I would ask him what his opinion is on the work of Dr. Tzounopoulos, the SF0034 compound of Retigabine.
       
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    4. Codaz

      Codaz Member

      Unfortunately I cannot afford to go back to Ghent and ask him about the drugs that are being developed.

      However, since Sven Vanneste is also in the research advisory board of Neuromod I'm hoping that they will bring Lenire to Belgium.
       
    5. Badger19

      Badger19 Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Unknown
      Seems very interesting. I'll probably be going.
       
    6. brokensoul

      brokensoul Member

      Location:
      Belgium
      Tinnitus Since:
      02/05/2019
      Cause of Tinnitus:
      unknown:medication,cannabis,stress,sleep deprivation
      I’ve been to the Brai3n clinic several times now and Dr. De Ridder and his colleague confirmed that they would be offering Lenire sometime in 2020.

      As you (may) know, Neuromod will offer Lenire to the Benelux countries now (after Germany being the second country), so it should be available in the coming months @Brai3n.

      I also tried to figure out to what extent they knew it helped or not, but they only confirmed they were in talks with Neuromod and did not want to state anything in terms of efficacy.
       
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    7. Bartoli

      Bartoli Member

      Tinnitus Since:
      2009,worsened 2019
      Cause of Tinnitus:
      Noise
      Are you located in the Flemish part of Belgium?
       
    8. Badger19

      Badger19 Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Unknown
      I am.
       
    9. MRItechssuck
      Disappointed

      MRItechssuck Member

      Location:
      USA
      Tinnitus Since:
      Mild 2000-2018 sev 10/17/2019
      Cause of Tinnitus:
      Loud noise, MRI
      I personally hope that with the University of Minnesota person involved this comes to the US soon. I’m sure I missed a mention, but does Lenire need a separate approval process to come to the US?

      Thx
       
    10. Bartoli

      Bartoli Member

      Tinnitus Since:
      2009,worsened 2019
      Cause of Tinnitus:
      Noise
      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?
       
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    11. Samir
      Obedient

      Samir Manager Staff Benefactor Ambassador Advocate

      Location:
      Sweden
      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Accoustic trauma
      Yes, it will have to be approved by the FDA.
       
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    12. brokensoul

      brokensoul Member

      Location:
      Belgium
      Tinnitus Since:
      02/05/2019
      Cause of Tinnitus:
      unknown:medication,cannabis,stress,sleep deprivation
      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.

      I’m quite sure even then they will not make any guarantees to customers and that it’ll be like “you have to try it and see if it works”.
       
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    13. Badger19

      Badger19 Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Unknown
      Neither my tinnitus nor hyperacusis are of such a level that I'd consider experimental treatment.
       
    14. Joeseph Stope

      Joeseph Stope Member

      Tinnitus Since:
      1992
      Cause of Tinnitus:
      noise? infection? negative stress? other?
      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.
       
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    15. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      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.
       
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    16. brokensoul

      brokensoul Member

      Location:
      Belgium
      Tinnitus Since:
      02/05/2019
      Cause of Tinnitus:
      unknown:medication,cannabis,stress,sleep deprivation
      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.
       
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    17. HootOwl

      HootOwl Member Podcast Patron Benefactor Advocate

      Location:
      California
      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Explanation in About You
      I mean Pipeline includes “Tinnitus Treatment” in their patent for 505. That’s a pretty substantial statement in and of itself.
       
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    18. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      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.

      I think cutting the nerve does not allow for widespread tinnitus because you haven't allowed the glutamate surge in the cochlea to contribute to the maladaptive neuroplasticity (which is necessary for hearing damage to contribute to tinnitus and why drug companies are trying to find a way to block this receptor in acute cases). You cut the nerve before it had a chance to do this, while also taking away a way to fix the problem with the pre-existing tinnitus.

      As you have said, virtually everyone with tinnitus has hearing damage but not vice versa. I think individual differences in Neuro inflammation and Gaba/Glutamate balance is a factor. To use another example: most everyone is exposed to oxidative stress on the retina due to not protecting eyes from the sun but not everyone gets macular degeneration. The ones that do tend to respond to this stress with more inflammation. There is a gene associated with age related macular degeneration that has nothing directly to do with the eye and instead has to do with complement (part of the immune system) activation and the relative lack of an "off switch."

      I think there is a tendency to react with more neuro inflammation post cochlear damage in some individuals. But that doesn't mean neuroplasticity is "stuck" in these individuals. The brain doesn't have those kind of preferences.

      Regenerative medicine is brand new. Scientists aren't going to make announcements before the trial is over but if it makes you feel better, PIPE-505 is actually patented for synaptopathy *and* tinnitus (edit: @HootOwl beat me to it).; Justin from Hough Ear Institute has said their cochlear drug successfully treated tinnitus and Frequency Therapeutics has added it to their experimental arm (I'm sure not just for the fun of it).

      But you could also reduce neuro plasticity by tweaking with the maladaptive plasticity with bimodal stimulation, too. There was a user here who treated both VS and tinnitus with the Minnesota device so this approach might be the best for you to tackle both but in the meantime, i see the right cochlear drug (either hair cells or synapses or both depending on the individual and what is damaged) helping most tinnitus (unless due to less common causes like TM), including yours.
       
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    19. HootOwl

      HootOwl Member Podcast Patron Benefactor Advocate

      Location:
      California
      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Explanation in About You
      I think it’s worth noting too that when researchers induced inflammation directly into the auditory cortex they could only produce a very mild tinnitus signal, as opposed to the much greater tinnitus signal generated from inflammation due to cochlear insult.

      I know you’re scared but I also think you’re wrong (and I mean that in the best possible way). You will get helped and so will many many others.

      Huge shoutout to @FGG for always breaking down the science. I don’t know what these forums would do without her.
       
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    20. jimH
      Caffeine

      jimH Member Benefactor

      Tinnitus Since:
      30 years+
      Cause of Tinnitus:
      Acoustic trauma
      Maybe both?

      Sometimes I doze off in a quiet room at home while reading a book. My Tinnitus is at a moderate level and then I'll wake up, maybe 25 -30 minute later and one side will still be moderate but the other has spiked to a loud level. Usually remaining that way for the remainder of the day.

      That said, the noise level in the room did not change during that time. The only thing that changed were my brain waves. Right? So what conclusion should I draw from that?

      Or is there more going on than I am aware of?
       
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    21. LukeYoung
      Mooooody

      LukeYoung Member Benefactor

      Location:
      Toowoomba, Queensland, Australia
      Tinnitus Since:
      06/16
      Cause of Tinnitus:
      A loud Concert - Noise Exposure
      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...
       
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    22. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      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 don't think the GABA benzo effect is necessarily in the brain (but could be a or the factor, hard to say). There are GABA receptors in the cochlea, too. That's why at first benzos help many people but then, if you get tolerance, you can get sometimes severe spikes as the GABA receptors are less sensitive to stimulation over time (or why improper withdrawal can worsen tinnitus, too).

      Agree that phantom limbs is a good analogy.
       
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    23. Joeseph Stope

      Joeseph Stope Member

      Tinnitus Since:
      1992
      Cause of Tinnitus:
      noise? infection? negative stress? other?
      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.
       
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    24. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      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?
       
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    25. Mila9828

      Mila9828 Member

      Tinnitus Since:
      08/01/2019
      Cause of Tinnitus:
      Accident/Screaming?
      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.
       
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    26. HootOwl

      HootOwl Member Podcast Patron Benefactor Advocate

      Location:
      California
      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Explanation in About You
      Hearing regeneration actually does not suffer from a lack of funding. Look at how much money Decibel, Frequency, and even Pipeline were able to attract in a very, very short time. Pipeline just announced they locked down another 30 million.

      There is major money to be had in the hearing space because there is constant turnover. You’re never going to run out of people who lose their hearing or get tinnitus, and people who damage their cochlea once are more likely to damage it again the future. If you can compete with hearing aid companies you’re in the clear to make billions.

      Tinnitus does have a severe lack of funding but I think ultimately we’re in a very peculiar (and lucky) spot where regenerative medicine is being funded to an extreme degree and will most likely end up alleviating tinnitus symptoms for most of us.
       
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    27. serendipity1996

      serendipity1996 Member

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Unknown but suspect noise-induced
      I agree that it's frustrating when you see how hearing loss/research attracts relatively little funding when compared to many other major diseases. However, like HootOwl says, I think there's reason to be optimistic here - it feels like we've reached a critical tipping point with biotech companies springing up as they realise that this would address a massive unmet need and are thus able to attract investors, deals with pharma companies etc. Off the top of my head we've got: Decibel, Frequency, Hough, Otonomy, Pipeline, Spiral, Rinri, the Regain trial. I'm cautiously optimistic about it all... I try not to get hung up on the word 'cure' but I think pharmaceutical interventions will make their mark before too long and hopefully they can bring relief for us.

      Also, as Frequency highlighted in their recent presentation hearing loss is a risk factor for stuff like depression, dementia etc so all the more reason to invest in this space. I just think... it's about time for this to happen.
       
    28. Joeseph Stope

      Joeseph Stope Member

      Tinnitus Since:
      1992
      Cause of Tinnitus:
      noise? infection? negative stress? other?
      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:

      " A breakthrough occurred in the year 198* when the scientific community gave "ringing in the ear" the scientific term of "tinnitus" ". The exact year I don't know. Maybe 197* -- but it shows the lay of the land back then.

      You might smile at this being described as a breakthrough -- But it really was! Just like the discovery of some tropical island in the age of exploration, (colonialism?) to be put on the scientific map like that with its very own name alerted the scientific academic community
      What infusion therapy did I receive? I seem to recall some name such as Trental -- but that might be a German trade name -- Rogaine too, perhaps. The doctors chopped and changed the infusion drip throughout the two weeks that I was in hospital.

      For many years it was a sore point with me that the ENT had not sent me to the hospital immediately. But I recall the first day in the hospital bed they tried the standard "Shtuff" on me in a precautionary allergy test and I failed it. So perhaps I was b*ggered from the start. German medical practice is to try to flush out the inner ear with plenty of some oxygen bearing infusion and to get the hair cells upright again. So to your question: I assume that I got a variety of the different infusion therapies which were fashionable in the 1990s. Trental and perhaps Rogaine... My memory is not all that good. It would not surprise me if they have improved or changed on them. Someone on Tinnitus Talk mentioned getting an intratympanic membrane injection of steroids or some such thing. Maybe that is a safer and more effective therapy than the German one for acute cases.

      Back then I recall how my relation in the medical field was so enthusiastic about the internet and world wide web and wanted to get me enthused about it. He mentioned how back in the 80s and early 90s and before -- if you wanted to access some study or report done by a previous researcher, you had to catch a train or drive to some central archive and wait your turn and then real nicely ask the archivist in the library: "Please would you go down to the cellar and get photocopies of report nr whichever by doctors A and B (196*) and also report nr whatever by doctors C & D (197*) and etc., etc. and after about half an hour if you were lucky they came back up with the information.

      Nowadays researchers have it all in a few mouse clicks -- and so do we if one can understand what it's all about.

      An extreme version of this is the example of the Tinnitus Retraining Therapy. It seems to be getting a lot of stick now but it certainly helped me the most out of all the other therapies and cures doing the rounds.
      The story goes that Pawel Jastreboff wrote his research paper and as with many research papers before it ended up in some archive gathering dust. A chance after-dinner conversation between the secretary of ENT Dr. Jonathan Hazell from London and Jastreboff in the US let to an enormous breakthrough:

      The suggestion came up: "Why not put the theory into practice by testing it"!

      Mild sarcasm alert here.
      Well it helped me back in the 90s but now that my tinnitus is getting worse since 2016 it doesn't seem to work any more. I guess I must have graduated to some additional form of cochlear damage. :depressed:

      On the little matter of money and research. That is real important. And getting the politicians to direct the funding in our direction will accelerate the advent of a cure or therapy enormously. One story related to the Jastreboff/Hazell incident is that Reagan was in power then. He suffered from tinnitus from a gunshot wound. He asked the top medical people in Washington if they could do anything it and they answered that "Sadly Mr President, we can put a man on the moon but we can't cure tinnitus." When Nancy heard this she took the matter in hand and ordered them to go and find something. And that's how Jastreboff and Hazell got the attention and research funding. That's the urban legend anyway. I'm sure it's at least 50% true. (I flipped a coin).

      So cynical me is of the opinion that perhaps one of the main reasons for the increased interest and nr of clinical trials is simply because of the nr of army veterans suffering from hearing damage and the enormous cost burden on the Veterans Medical Funding.

      Curiously, when I think of my own case, back in the nineties I must have taken wheelbarrow loads of blood-thinning tablets and magnesium powder prescribed by my doctor. He knew that they weren't working, the pharma people knew they weren't working, I knew they weren't working, but the elements of the machine were happy to continue to roll. The doctor got his fee, the pharma company got their sale and I happily paid my insurance which I needed anyway. Only thing was that I was suffering from the tinnitus.

      Ups. Maybe I talk a bit too much. End of lecture. I seem to be all over the shop in my reply covering so many different topics and maybe not posted in the right thread. Well copy and paste as you like.
      End of rant.
       
      • Informative Informative x 1
    29. brokensoul

      brokensoul Member

      Location:
      Belgium
      Tinnitus Since:
      02/05/2019
      Cause of Tinnitus:
      unknown:medication,cannabis,stress,sleep deprivation
      In regards to the question ‘brain or ears’:

      Note that saying that tinnitus has a cochlear origin does not take into account its evolution over time: it is possible that it can 'centralise' and still remain after the cochlea has been destroyed or the cochlear nerve has been sectioned! In this way, it is similar to chronic phantom pain.

      Finally, there is a completely different tinnitus category caused by the perception of internal sounds.

      http://www.cochlea.eu/en/pathology/tinnitus

      Tinnitus of cochlear origin:

      Cochlear synaptopathy:

      Two main cochlear pathologies could be at the origin of tinnitus: malfunction of the glutamatergic synapse between the inner hair cell and the auditory nerve, and the disruption of the outer hair cells' active mechanisms.

      => will hopefully be addressed someday by companies like Pipeline Therapeutics (PIPE-505)

      OHC:

      Spontaneous activation of the outer hair cells (OHCs), producing active mechanisms without acoustic stimulation.

      => will hopefully be addressed someday by companies like Frequency Therapeutics (FX-322)

      If you are in the above case, you are likely going to be helped in the coming decade.

      I’ve also read that tinnitus may also be generated due to an issue along the auditory pathway. This may perhaps someday be addressed by bimodal stimulation. Not sure.

      However as I said in my post. Tinnitus can also arise from a non-cochlear origin, as mentioned by this site (referring to my statement “hearing somatic brain sounds”). In that case hearing regeneration will not resolve tinnitus.

      I wonder if there is any way to know if you’re in the latter case, if there are any markers?

      Personally I have the impression that my tinnitus sounds are coming from my ears, but it’s hard to say.

      Does the brain produce high frequency like noises? As far as I know, somatic sounds in the brain are (very) low frequency. Brain waves (alpha, beta, gamma and delta) are low frequencies.

      My qEEG however confirmed brain wave anomalies and my brain does really feel strange.

      Has anyone who is certain to have cochlear damage ever done a qEEG? Did you also have abnormal brain waves. I suspect not?

      I suspect there is a chance that I am not in the tinnitus of cochlear origin category.
       
    30. Tybs

      Tybs Member

      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      Fall from stairs
      Only glancing over this topic, but I notice only hearing loss / the cochlea is mentioned so far.

      There are more ways to get tinnitus than through ear (mal)function. My case for example. Perfect health, but one day I slipped half-way down the stairs, barely managed to grab the support bar and then sled down to the bottom. Boom, I got tinnitus. First one sound, then up to 12 appeared in the months after.

      I did not hit my head or something, it just appeared, without any trauma related to the hearing. The first ENT couldn't help me, but after a few months of searching, the conclusion is that the signals from my neck muscles are being mis-interpreted as sound. Though this diagnosis could not be confirmed by imaging, it did fit my symptoms perfectly (sounds differing with each posture etc.).

      Physiotherapy helped a lot and eliminated six sounds, while reducing the others as well. Still got bad periods (have one right now), but there are stories and research articles online where it is shown that these cases can be fixed completely.

      The only issue is our (lack of) understanding of tinnitus. Yes, the brain is related, but not necessarily the issue. Everyone with tinnitus has hearing loss, but so does every human alive: the fact alone does not tell us much. We all drink water as well, that does not mean it has to be related (although hearing loss makes more sense of course, it is often an issue).

      Tinnitus is nothing other than a symptom, and it needs to be viewed in a broad picture. Determine the symptoms, find the underlying issue (or at least the one making the most sense in the patient's case). Try to fix that if possible.
       
      • Informative Informative x 1

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