2016 ARO Hyperacusis Seminar Summary

Discussion in 'Support' started by lymebite, May 28, 2016.

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    1. lymebite
      Breezy

      lymebite Member Benefactor Team Research

      Location:
      United States
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
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    2. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      @japongus You might find this piece from the article interesting:

      "(COMMENT: There are two middle-ear muscles that control the impact of intense sound: the tensor tympani and the stapedius. Could spasms of these muscles be a source of pain in hyperacusis? Not likely: Tensor tympani spasm—myoclonus—results in pulsing tinnitus; and since stapedius contracts during speech, we’d expect that if it was a source of pain, we’d notice it when talking. Nonetheless, some hyperacusics say they can feel tender tightness in muscles underneath their outer ear—behind the jaw—or in the chewing muscles, when exposed to certain sounds. Perhaps this specific type of pain arises from some of the many muscles controlling the jaw and temporomandibular joint)."
       
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    3. japongus

      japongus Member

      Tinnitus Since:
      1998

      They're wrong in that there is no involvement, but it's entirely possible that the inner ear provokes the middle one, or that the middle ear provokes the inner one. The involvement of the middle ear is very likely, as those who went to Silverstein or Sismanis show, as does the literature on myoclonus that is full of references to ''hyperacusis'' or ''subjective hyperacusis''. In one paper, they were so amazed that a middle ear muscle could cause a continuous sound they asked biologists and were told that it was possible, that if a muscle started vibrating so fast it could make a continuous sound. But I can't remember where I read that and sure hope I didn't imagine it. Maybe @PaulBe read the same paper as I did and remembers.

      At best they're finding another etiology. For instance, I don't have prolonged pain after sound, all I have are sound differential induced vibrations. And if they weren't there all the time because sound is so present in nature, then maybe we could classify it as exercise, not pain. But as it is, a vibration can mean pain if its there all the time. I do notice the vibration when I start to talk, or when I close my eyes, and there comes a point where pure loudness makes it ''painful''. So there are many subtleties to take into account.
       
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    4. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      I did read it but can't find it just now. There's a few papers around though suggesting Myoclonus of the middle-ear muscles is a primary generator of some forms of tinnitus and much hyperacusis. Muscles can certainly fasciculate/spasm at very high speeds, particularly small ones like the stapaedius. There's also an interesting relationship described in a few places between middle ear muscle hyperactivity and intensity of Menierre's symptoms. I think the middle ear is where a lot of the action is, and where no-one but the fringe cares to look.

      I think there's also an issue with the way pain is defined in many cases, and you can see that with the way that hyperacusis is (unsatisfactorily) broken down for explanatory purposes into different categories, none of which really explains anything well. Those who seek to define these things rely on us to give them the information they need, and even we don't always have the best words to express what we are experiencing, such is the weird nature of these conditions. Its very hard to put subjective physical sensations into words that can adequately convey the experience to someone who isn't feeling it themselves. That's why they all think we're nuts and want us out of the surgery ASAP.
       
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    5. japongus

      japongus Member

      Tinnitus Since:
      1998
      All of these writers are also dealing with the big elephant in the room whose name is Jastreboff, who spoke as if he already knew how the middle ear worked when if you looked closely you realised he was an emperor with few clothes. He has a huge influence because that's where all the patients are being redirected to, to his audiological community, which was a comment Silverstein made in his seminar, that none were coming to neurotologists. So a great majority of patients aren't being examined with the detail and nuance this subject requires, and we get comments like in the above researcher's link that have clearly not read the literature and are desperately looking for central gain theory. I'll see if I can find that article about the tonic muscle to make sure, and I'm not surprised because the subject is complicated af and the researchers already have enough as it is. The link above is good, it just might not have read those articles on myoclonus that's all, and instead of the vibrations that in other circumstances might qualify as exercise but if you have them all the time would realise they're deadly disabling, they may be onto something when it comes to those who suffer from hyperacusis pain after sound, or maybe even a different kind of hyperacusis etiology, the one Astrid had and why she failed her op, though maybe if she'd gone to Silverstein we'd know better by now.
       
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    6. bill 112
      Studious

      bill 112 Member

      Location:
      Republic Of Ireland
      Tinnitus Since:
      02/2012
      Cause of Tinnitus:
      Noise exposure
      Why can't they approach this in another manner and look at this as a peripharel neuropathy.If they did Im sure there would be much more answers than questions.

      If we look at just some of the symptoms of common peripharel neuropathy and compare them to our situation the resemblance is scarily similar,below are just some symptoms of neuropathy and how they relate to us

      :Muscle spasms-TTTS

      :Exaggerated signals-Tinnitus-Hyperacusis

      :Burning/Tingling/Stinging pain and or numbness-Hyperacusis/Noxacusis

      :Nerve sensitivity-Hyperacusis

      :Anxiety/Depression-Basically every new T and H sufferer ever

      :Lack of limb function-Hearing loss

      : Poorly transmitted nerve impulses and or false signals unclear nerve impulses-Distortion/Dysacusis

      :Trigeminal neuralgia-Rare enough but quite a common accurance alongside Hyperacusis.

      And these are just what springs to mind,I have two pages of neuropathy symptoms and their corresponding symptom in our situation and ALL of them match up,ALL of them!When I get more time I'll post them all here and you'll be amazed by just how much they all add up,it explains to me at least everything about these conditions.
       
    7. japongus

      japongus Member

      Tinnitus Since:
      1998
      Also those cochlear neuropathic neurons may be influencing the middle, and I'll leave it at that otherwise I'll just keep re-editing what I write. So the research is good, it just needs an extra push.
       
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    8. japongus

      japongus Member

      Tinnitus Since:
      1998
      Yeah, hopefully you didn't read me saying it otherwise I may have implanted a false memory in you... I could have sworn it was an extended piece from the Brazilians who treated a woman in 1996 but then I went on to look for it and couldn't find it anywhere. I'll look for it this week.
       
    9. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Well in my case, TTS fluttering and distortion when exposed to "louder" certain sounds were the first symptoms of my hyperacusis that started some time in 2012-2013. But then again, I think I've had some sort of sound sensititvity (to actually loud sound) for a long time, probably ever since I got T as a kid in 99. So what is causing what? Does my H cause my TTS or the other way around? I like reading your posts @japongus , both on here and on the H network. But I can't say I'm getting any smarter reading them, just even more confused :p
       
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    10. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      I think you're right Japongus, I think it was that one. I recall a similar story from Japan as well.
      The deeper you go the murkier it all gets.
       
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    11. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      I wonder if Jastreboff is still as wedded to his theories as he was ten-twenty years ago? Its unfortunate (and perhaps grossly negligent) that mainstream research in this field has been railroaded into the sound therapy model almost exclusively because it creates lucrative professional turf to be protected (see: audiology) and gives ENT an easy buck without having to learn anything new, and worse, it impedes the growth of Oto-neurology as a discipline which results in a failure to develop proper diagnostic and treatment models (see: Astrid). No one ever said Medicine was about altruism.
       
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    12. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      I like Japongus's epic battles on HN, especially against the sound engineer who thinks he's an audiologist.
       
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    13. japongus

      japongus Member

      Tinnitus Since:
      1998
      The Japanese study wasn't continuous, but it did have a summary of all the other cases of myoclonus in the literature, and some are reported to be continuous, or low buzzing sound, or static. I'm not well organized so can't recall exactly right now where but I certainly have found many references to tinnitus and hyperacusis in the middle ear, much more so than you'd expect from all the talk by sound therapists. This week I looked for the study that specifically references the otoneurologist surprised by a blended continuous tinnitus in a stapedial muscle and its very possible it was the brazilian study but right now I only seem to have an undetailed half a page summary, whereas I possibly read that in a more detailed version somewhere.
       
    14. japongus

      japongus Member

      Tinnitus Since:
      1998
      That was and still is the uncertainty of finding a forum (and a profession filled with sound therapists) with two differing accounts Lib's and Astrid's, coupled with the owners of that site and forum having twisted its history of the forum to be one of sound therapy kool aid. Lib and others are probably living a life too good to care these days, but damn we would be better off now if they'd have had their testimonies written up and interviewed instead of the mess that we have now of mixing borderline autistic kids with misophonia with acoustic pressure/trauma survivors like me. And if the Silverstein thing doesn't turn out to be a dud, I should've been in the facebook hyperacusis sufferers group instead. The problem as I see it is I kept thinking I would disentangle the contradictory reports of Lib's and Astrid's accounts and it just wasn't possible, everything remained as uncertain as the first reading, more so when I visited Sismanis without talking points scribbled down to try to see what he knew I didn't expect him to be that passive, I just went with the flow and he really didn't seem to know much.

      I actually got perm-banned from there for comparing misophonia sufferers to Daily Mail readers that have been cross-bred with sheep from New Zealand. Long story short, I'd been temp-banned previously on fake dodgy af premises, and there was yet another thread with talk of hyperacusis as a limbic orgasm and how a lawyer happened to think we're all nutters, so I thought fuck it. As of this week I am unbanned for some mysterious reason, but it was all clearly a massive waste of time anyways.
       
    15. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      That was me. It was a paper I found from a few years back where some third rate ENT from Sydney had cobbled together a screed for the local Law Society basically saying people with troublesome tinnitus were just that kind of person anyway so the idea of compensation was "problematic at best" (I think he was shilling for business and government insurers to get them out of responsibility for workplace-caused tinnitus by blaming the victims)
       
    16. japongus

      japongus Member

      Tinnitus Since:
      1998
      Found it. It's a continuation in greater detail of the 1996 case of a woman that was treated in Brazil. I don't remember where I found it and I find it very odd that I can't find it online now, but its most probably that its the real article itself I find it highly unlikely that it was tampered with. There is also talk in the literature of a paper in 1998 that was 5 pages long and it was published somewhere but it's not easily findable online, so it's very probable that this is it. Also it is a full objective tinnitus because it was heard from the outside by other people. This is what it says:

      ''Because our patient complained of continuous, highfrequency tinnitus since childhood, and because we had not seen or read about a high-frequency and continuous sound originating from a muscle and lasting for such a long period, we originally did not consider a diagnosis of middle ear myoclonus. However, informal conversations with bioengineers made us aware that these middle ear muscles might have been contracting in a very specific way, making brief and rapid contractions with short intervals between them, simulating an actual continuous sound.''

      So I'm ambivalent about this, because even though it's continuous, it was heard by the doctor and her buddies since she was 14 years old. So it doesn't really help me because mine isn't fully objective. And from asking around it would seem my reflex predominant sound intolerance might be closer to 'hyperacusis' and Silverstein's operation would be closer to home. So on the one hand maybe its the stapes thats out of whack and that's 'hyperacusis' and a matter for Silverstein, and on the other, there are plenty of MEM cases that aren't heard by an external person so we can just combine those cases with this one. However it does fulfill that requirement of making a mockery of the bullshit difference between pulsatile and the sound therapy infested ear-nihilistic 'neuro' tinnitus that has the whooshers crowd trying to pull an inverse Rosa Parks on our asses.

      The paper goes on to talk about a couple of things that might be of interest for those of us with low frequency continuous vibration.

      ''Earlier reports involving this kind of tinnitus suggested a vascular origin, despite the absence of pulsatility. This mechanism was explained by Glanville et al in 1971.12 According to the authors, the vessel's fibers may remain in a prolonged state of stress in a specific region of continuous flow, generating a nonpulsatile tonal sound. This would occur despite the high elasticity of the vessel's walls because such elasticity would be limited by adjacent structures, causing a state of continual stress in the fibers.''

      Both of which make a mockery of ENT and sound therapy practices everywhere, the idea MEM can be continuous, or that tinnitus can be somatosensory, just because this lot looked into it while millions from U.S. army funds are invested into sound therapy from 'experts' that don't know this doesn't really paint an encouraging picture of medicine at large.

      There may also be others I'm not sure. The papers on middle ear myoclonus that add a measly one or two cases are so thin they often include summaries of all previous cases, some talk of things like buzzing and static that may or may not also be continuous.
       
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