Tinnitus Research and Pornography ...

Discussion in 'Support' started by Dr. Nagler, May 22, 2015.

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    1. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      The year was 1964. In commenting on the landmark First Amendment case Jacobellis v. Ohio, US Supreme Court Justice Potter Stewart said that he was unable to precisely define hard-core pornography, but “I know it when I see it.”

      The year is now 2015. And in reading through the many threads on various Internet tinnitus boards in which participants are rightfully frustrated by the fact that today we still do not have a true cure for tinnitus (or for that matter anything that can predictably and lastingly decrease tinnitus loudness in the absence of a true cure), a thought has come to me. We are so ready to cast the blame on the overall lack of funding, on possible conflict of interest issues with big pharma or with hearing aid manufacturers, on the American Tinnitus Association (talk about paranoia!), or even on the fact that thanks to habituation many individuals with tinnitus seem to do reasonably well over time on their own … that we might be overlooking the obvious. Dating back to 1980 entities such as the American Tinnitus Association, the British Tinnitus Association, the National Institutes of Health, the National Center for Rehabilitative Auditory Research, the Tinnitus Research Consortium, and the Tinnitus Research Initiative have been funding or sponsoring research towards curing tinnitus, a condition that affects 20% of the population of the industrialized world. Yet in all this time the research community has failed to agree on a uniform, practical, and (most importantly) scientifically precise definition of tinnitus, the very condition that they propose to cure! So while we are pointing fingers, I am not so sure that the tinnitus researchers themselves deserve a free pass. “I know it when I see it” might have worked fifty years ago for Justice Stewart in defining hard-core pornography, but in terms of meaningful scientific research towards curing tinnitus in 2015, I personally find the “I know it when I hear it” approach to be incredibly unfortunate and short‑sighted.

      And not only are researchers unable to agree on a scientifically precise definition of tinnitus, they have yet to agree on exactly what it is that might constitute a cure! Indeed a number of them seem to be doing research for the sake of doing research instead of for the impact that their research might actually have on mankind … on us.

      Now to its credit several years ago the American Tinnitus Association developed a rather elegant Roadmap to a Cure. The organization will not fund any tinnitus research projects that do not have a place along that roadmap. But in all my 66 years, I confess that I never saw a map that purported to take me from a place called “Where I Think I Am” to a place called “Where I Think I’d Like to Go,” at least not a map I’d pay for! In short, without a well-defined starting point and a well-defined ending point, as I see it, even ATA’s Roadmap to a Cure has limited value.

      I fully realize that these views might seem overly simplistic and harsh, but perhaps it’s time for the research community to catch its collective breaths and get back to the basics: What is tinnitus, and what are they talking about when they refer to a cure?
       
    2. Nucleo

      Nucleo Member Benefactor

      Tinnitus Since:
      02/2011
      It seems there are research in all 4 of the paths proposed by the roadmap. As far as I know Path A isn't even solved yet... It seems everyone is doing their own things how they see fit. I feel that very little reasearch in the tinnitus field converges together.

      New scientific knowledge needs to be built on top of established knowledge. It doesn't seem to me that the foundation of tinnitus knowledge is very solid. Pretty much everything is still matter for debate.
       
    3. Kathi
      Balanced

      Kathi Member Benefactor

      Location:
      NJ/USA
      Tinnitus Since:
      10/30/2013
      Cause of Tinnitus:
      HFHL and stress
      Hi @Dr. Nagler --I agree with you. I've done a fair amount of research (as a lay person) and mostly find that scientists cannot even agree on what mechanisms are involved in tinnitus. Some think it is an auditory malfunction confined to the hair cells in the cochlea--while others think it is much more neurologically involved with the auditory cortex. Some even think now that it involves many parts of the brain. Some think it's neuron's hyperactivity and others think the tinnitus sound 'imprints' upon our memories and keeps going like an unwanted rerun. No one can really say what causes tinnitus. All the research papers I read on Google Scholar are as you say--research for the sake of research. I really don't think there will be a cure in my lifetime for all forms of tinnitus--there are too many subgroups--so I do my best to live the best I can and not give up all the things I like based upon anecdotal evidence. I really feel for the young people on this board and hope there is a cure in their lifetime. I am older--not quite as old as you but almost. :)
       
    4. soundmachine
      Buzzed

      soundmachine Member Benefactor

      Location:
      USA
      Tinnitus Since:
      03/2014
      Cause of Tinnitus:
      Acoustic + Ototoxicity
      Well, T research has come a long way from an "old man's disease" and not too common disease of young'ns. Once young'ns got hearing problems from long wars in the middle east and loud iPads and concerts, all the sudden, more research is happening.
      If it were Alzheimers or some other old person's disease, we would see squat...zip ...nada. Why??? Because old people are not a financial boon to big pharma (most are on medicare). But young folks got jobs...and money...and will pay out the ying yang to get treatment. ....same goes for cancer research. Big pharma is salivating at that bonanza too.

      I think we see a bit of chaos now because the interest and money is now flowing in various companies and all want to protect their IP (share and you lose the edge). Yes, the ATA is a waste of time. They just talk about a vague "cure is coming" to sound optimistic but have no clue of how to vet, support, and comment on various trials in progress. But again, all these big pharmas are keeping the raps on this stuff for obvious reasons.

      But at least the ball is rolling...things are moving. Better hope than what "old grandpa" had 50 years ago. A cure (not a treatment) is coming. It is a more common disease and affects all ages now.
       
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    5. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      I think the big problem might be that in absence of a clear etiology, the tinnitus research community is basically trying to attack a symptom as if it were a disease.

      By which I mean, if my symptom were "lower right quadrant pain", I might have appendicitis, I might have cirrhosis, and I might have pancreatic cancer. How much sense would it make to try to come up with a drug to treat lower right quadrant pain? You'd probably end up giving chemotherapy to people with bad gas.

      I realize that this is a simplification, as there's reason to think that whatever the initial cause of tinnitus, the thalamus plays a role in its perception, and the amygdala in the distress it causes. So, trying to attack those specific structures makes a degree of sense.

      But, that then brings ME back to "what therapies are known to interact with those specific brain structures and only those brain structures", and the list there is very short... Deep brain implants, plus a handful of imaging studies on mediators and yoga practitioners.
       
    6. soundmachine
      Buzzed

      soundmachine Member Benefactor

      Location:
      USA
      Tinnitus Since:
      03/2014
      Cause of Tinnitus:
      Acoustic + Ototoxicity
      Look, if you lose your leg, you will get phantom feelings of a sensation from a nerve connected to nothing. So we could just find a drug to dampen that sensation. We could do a lot of research to find out why the brain still keeps signalling that the leg is still there. Or......we could just save the person's leg and problem with phantom feeling solved.

      T is probably 90% hearing loss related (there is pulsatile etc). So going on about is it in the brain...is it in the amygdala or the hypothalamus or my big toe...is a waste of focus. Fix the hearing loss and I bet you anything your T goes the way of the do-do bird.

      Fix the cochlea...get the signal back to said brain....the brain being very plastic will recover and work again. Problem solved. So the big 1000 lb, pink, gorilla in the room is fixing the cochlea. But if we concentrate on stem and gene therapy and focus research to that area, we will see a cure very soon. A *real* cure...not a treatment. So don't be so negative linearb....you might be an "old" person that can hear a gnat sneeze across the room ....in silence... someday soon :)
       
    7. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      I forgot to mention that before posting it here, I sent my little piece on "Tinnitus Research and Pornography" to the entire ATA staff as well as to every ATA Board member for whom I had an e-mail address. I figure that since I am a former Chairman of the ATA's Board of Directors, perhaps it might generate some discussion there. I hope so, anyway.
       
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    8. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Big pharma wants a pill that they can claim intellectual property rights with. That's were the bonanza lies. Alternative solutions (yes, including surgery or procedural solutions) to them aren't viable/profitable so research will never be taken that direction in a meaningful way, and to hell with what the sufferers may need.
       
      • Agree Agree x 1
    9. Nucleo

      Nucleo Member Benefactor

      Tinnitus Since:
      02/2011
      To ''fix the cochlea'' would mean being able to identify the extent and the location of the damage done. Right now the only way to do that with 100% accuracy is by taking the cochlea out of your dead body and imaging it with by electromicroscopy. Now it's obvious that profondly deaf people have quite significant damage to the mechanoreceptors of the organ of corti so regenerating said cells might be beneficial regardless

      We also need to think about the spiral ganglion neurons.

      http://en.wikipedia.org/wiki/Spiral_ganglion

      Are those still functioning properly? Are there enough of them? Do they also die when inner hair cells are damaged? Even with hearing aids, people can now pick up and hear more sounds. This obviously helps them understand speech more. However, listening to and understanding people talking in complex/loud scenes is still a very present challenge. Regrowth of hair cells will do just that. Amplify the missing sounds. But will it also help improve speech disrimination in loud environment? Tough to say, but based on the knowlodge of the auditory system we have to far I'm inclined to say not that much compared to hearing aids.

      And the auditory nerve? Will it still be able to carry out the electrical signals to the brain? If so will the brain interpret the signals the same way? It is said that nerves slowly degenerate with reduced stimulus. Will it still work for people who've had severe hearing loss for decades?

      So yes repairing the cochlea would surely be a good thing, but what it is that we need to repair exactly? Many people with tinnitus have normal hearing senvitity (which kinda indicates there are are lots of healthy hair cells wouldn't you think?). If so, what is there to repair then?

      It's because of all these unanswered questions that I don't think haircell regeneration is the holy grail of a tinnitus cure. The field of otology as a whole is in its infancy still. Hell, we still use the audiogram as the go-to tool to diagnose hearing disorders which was first seen in 1922.
       
    10. soundmachine
      Buzzed

      soundmachine Member Benefactor

      Location:
      USA
      Tinnitus Since:
      03/2014
      Cause of Tinnitus:
      Acoustic + Ototoxicity
      I guess I would disagree with you based on what I am reading in research. I do agree the problem is a complex one so I did not mean to trivialize it (hence the joke of the 1000 lb gorilla). However, we don't need to take the cochlea out of a person to see all the damage. We may only need to repair part of the hair/nerve cells. I don't agree that it will be like a "hearing aid" I can't see why you think that??? Also, people who have T have cell death in that frequency. Hence the notch in a audiogram. They may have a few working but enough have died to make the signal less to the brain. So I don't see your logic there either.
      I do agree that the diagnostic tools are from the stone age. But in any event, it is a complex problem but a solvable one and with regeneration of both nerves and hair cells.
       
    11. Teri
      Artistic

      Teri Member Benefactor

      Tinnitus Since:
      4/2014
      @Dr. Nagler

      Something to consider......

      Since the onset of T, I keep coming upon members in my family and/or extended family who have T as well. I am convinced there is a genetic link....or at the very least, a genetic predisposition to the condition.

      your thoughts?
       
      • Informative Informative x 1
    12. Nucleo

      Nucleo Member Benefactor

      Tinnitus Since:
      02/2011
      How so? CT Scans and MRI do not have a resolution at the cellular level.
       
    13. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      Yeah, I don't think this is true at all.

      Anyone in their 30s will have some hearing loss, most have no tinnitus.

      Several imaging studies of tinnitus sufferers show obvious and consistent differences in specific brain structures, compared to controls. How do you explain that, if it's an ear problem?

      I can hear a gnat sneeze. My hearing is great.
       
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    14. soundmachine
      Buzzed

      soundmachine Member Benefactor

      Location:
      USA
      Tinnitus Since:
      03/2014
      Cause of Tinnitus:
      Acoustic + Ototoxicity
      I think we are off topic on this thread. But to finish this you have the two-photon laser, as was indicated in one article posted in the research thread. You also may not need that detail to detect damage to have some success (a lot of medicine does not have that detail and still has a good statistical chance of success).

      And back to topic, these are something the ATA could help push with researchers and enlighten the public. Not just empty promises of a cure someday but advocate with patients and researchers.
       
    15. Dr. Nagler

      Dr. Nagler Member

      Location:
      Atlanta, Georgia USA
      Tinnitus Since:
      04/1994
      That's a tough one, Teri. Let's start by looking at ovarian cancer. One in 75 females will develop ovarian cancer in her lifetime. So if a number of relatives (especially first-degree relatives) carry that diagnosis, then one might look into the possibility of a genetic link. But the incidence of tinnitus in the population is on the order of 20%. As I see it, it's a lot tougher to establish a genetic link with numbers like that.
       
    16. Nucleo

      Nucleo Member Benefactor

      Tinnitus Since:
      02/2011
      That was for blood vessels if I remember correctly. So I guess it would be possible to assess the damage done to the blood vessels of the inner ear.

      Anyways, I agree. Let's get back on topic. Right back to porn and tinnitus.
       
    17. soundmachine
      Buzzed

      soundmachine Member Benefactor

      Location:
      USA
      Tinnitus Since:
      03/2014
      Cause of Tinnitus:
      Acoustic + Ototoxicity
      It is still hearing loss. They only test up to 8k. But hearing goes up to 20k. Many people have T at higher freq than 8k and is does not show on an audiogram (such as you I guess..good for you).

      "Anyone in their 30s will have some hearing loss, most have no tinnitus"...that does not prove anything. It is the degree of loss and the time the loss occurred. I have hearing loss but did not have tinnitus until I had a major loss after one event very quickly (the brain could not adjust). Then it happened.
      "Several imaging studies of tinnitus sufferers show obvious and consistent differences in specific brain structures, compared to controls. How do you explain that, if it's an ear problem?"

      It is an "ear problem" (cochlea actually) that is the genesis of the tinnitus. How the brain reacts is irrelevant to what I am trying to tell you. If the hearing loss had not occurred in the first place, the brain would be fine.
      So sorry, I guess I don't think I agree with you. And I have read a lot of scientific literature that points to loss as the cause. You might want to do the same.
       
    18. soundmachine
      Buzzed

      soundmachine Member Benefactor

      Location:
      USA
      Tinnitus Since:
      03/2014
      Cause of Tinnitus:
      Acoustic + Ototoxicity
      No, not just blood vessels...1 millimeter of tissue. Read the article.
       
    19. Nucleo

      Nucleo Member Benefactor

      Tinnitus Since:
      02/2011
      http://www.hindawi.com/journals/bmri/2015/154272/

      Is this the article you're referring to?

      Just reading the title tells you it is only for the imaging of vascular components of the cochlea. Not once are stereocilia nor neurons mentionned in the paper.

      Or maybe you're talking about this paper:
      http://authors.library.caltech.edu/41080/1/JBO_18_3_031104.pdf

      Which does image the cochlea directly. After organ of corti extraction in dead mice still.
       
    20. soundmachine
      Buzzed

      soundmachine Member Benefactor

      Location:
      USA
      Tinnitus Since:
      03/2014
      Cause of Tinnitus:
      Acoustic + Ototoxicity
      Two-photon laser scanning fluorescence microscopy was first described by Denk and coworkers [27]. It is a light microscopy technique that allows in vivo imaging up to a depth of one millimeter from the surface of a specimen in some tissues [2830], providing subcellular resolution and good light penetration as well as low phototoxicity [31, 32].

      ...beyond this, absorption of biological molecules is minimal at the frequencies applied, allowing deeper tissue penetration [33]. The application of two simultaneous photons with high frequency and low energy additionally allows a more focused approach with imaging confined to small volumes [34]. Thus, two-photon microscopy may circumvent invasive preparation while enabling volumetric visualization of a specimen.

      and here

      http://www.nature.com/nmeth/journal/v2/n12/abs/nmeth818.html

      Not just blood vessels...though the study used if for that purpose.
       
    21. Nucleo

      Nucleo Member Benefactor

      Tinnitus Since:
      02/2011
      In some tissue. Cochlear hair cells are not part of these ''some tissues'' yet, according to the 3 citations provided in the paper

      If you just read the first four lines of the abstract:

      Impairment of cochlear blood flow has been discussed as factor in the pathophysiology of various inner ear disorders. However, the microscopic study of cochlear microcirculation is limited due to small scale and anatomical constraints. Here, two-photon fluorescence microscopy is applied to visualize cochlear microvessels.
       
    22. soundmachine
      Buzzed

      soundmachine Member Benefactor

      Location:
      USA
      Tinnitus Since:
      03/2014
      Cause of Tinnitus:
      Acoustic + Ototoxicity
      http://www.nature.com/nmeth/journal/v2/n12/abs/nmeth818.html

      well you better check out other articles. I did read the whole article and yes, it is for cochlear blood flow in this example (study of cochlear microcirculation).. Where does it say it is *only* for vascularization? Sorry, I guess we are not reading the same article.
       
    23. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      I'm not disagreeing that input loss of some kind is the origin of the problem.

      I am saying that "normal" people experience this loss without tinnitus, and that people who do experience tinnitus, show specific abnormalities in their brains. This is why I say it is a "brain thing". Hearing loss is "normal". Your senses work less and less well as you age.

      So, basically, I do not share your optimism that simply restoring auditory input to a brain which has had time to deeply plasticize the tinnitus signal, will necessarily fix the problem. No one knows.

      Do you not believe that people with tinnitus show predictable differences in brain anatomy than people who do not have tinnitus?

      I am sorry if I am coming across as aggressive. I have a personality problem where it's hard for me to disagree with people. I know that you and I both have the same problem, we both want relief, and I have no quarrel with you. It is also not important that we agree on this.
       
    24. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      This thread topic makes me want to download lesbian porn off of the internet, dub over the audio with tinnitus sounds, and upload it to pornhub.

      The crazy thing is that someone, somewhere, would get off on that.
       
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    25. soundmachine
      Buzzed

      soundmachine Member Benefactor

      Location:
      USA
      Tinnitus Since:
      03/2014
      Cause of Tinnitus:
      Acoustic + Ototoxicity
      "Do you not believe that people with tinnitus show predictable differences in brain anatomy than people who do not have tinnitus?"

      That is entirely possible. The result or reaction of the brain can definitely be manifested in different regions and maybe the loudness and consistency is influenced by stress, and other parts of the brain.

      Where I disagree is that the brain is "hard-wired" to be a sound machine. Researchers have found the brain to be very plastic. Not as hard-coded as we thought. So I guess I am a bit sanguine that if you restore some innervation in the auditory path, the brain will react and adjust down the T since it will have new signals. Is this proven? Nope. No proof so far. Just people reporting that with hearing aids, they have reduced their T (if the nerves are intact). But this is still no proof.

      So I don't want to sound certain on "what ifs". We don't know. But I do think that we are further along than we were and research should be more focused on results based avenues rather than ....isn't it interesting that if you drink coffee and
      tap your head, the hypothalamus makes a noise in a SPECT scan in some people with T. ....I agree with the genesis of this thread that we have a lot of fluff in research and not enough focus.

      "I am sorry if I am coming across as aggressive...."

      No worries...I appreciate the challenge and discussion. That gives me some modicum of relief.
       
    26. soundmachine
      Buzzed

      soundmachine Member Benefactor

      Location:
      USA
      Tinnitus Since:
      03/2014
      Cause of Tinnitus:
      Acoustic + Ototoxicity
      Yea..high pitch hell has almost killed my porn days:(
       
    27. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      Well, speaking personally.. I do have (mild) high frequency notch on the side where my T is worse. If someone ever has a proven and safe means to restore my hearing, sign me up! In the mean time, all I can do is try to attack the brain angle with yoga :)

      Nice avatar by the way.. I feel like professor X would be more zen about his tinnitus than I am at present.
       
    28. soundmachine
      Buzzed

      soundmachine Member Benefactor

      Location:
      USA
      Tinnitus Since:
      03/2014
      Cause of Tinnitus:
      Acoustic + Ototoxicity
      now I'm a mutant...all I can do is help other mutants like me.. and they help me
       
    29. tinnitussufferer
      Angry

      tinnitussufferer Member

      Location:
      UK
      Tinnitus Since:
      1/2004
      Tinnitus is basically an unwanted noise that doesnt arise externally but internally. But it is a sound like any other sound. Beyond that you are asking what is consciousness. These are deep questions. The brain is the least well understood organ as far as I understand. We cant examine it in the same way as any other organ because its too invasive. We dont even have the tools to examine it. Just because you scan the brain and see some electrical activity in some areas of the brain is nowhere near enough to explain how the brain works. We cant recreate a brain even though we can create computers. There is no evidence that we will ever find a cure to tinnitus. There is more incentive to cure cancer and even that is proving to be tough.
       
      • Agree Agree x 1
    30. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      Sorry to here that; sex, porn and laying in bed at night are some of the only times I feel mostly ok.
       

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