Botox for Hyperacusis

Discussion in 'Support' started by japongus, Sep 2, 2016.

tinnitus forum
    1. japongus

      japongus Member

      Tinnitus Since:
      1998
      A member of a forum in the link below claims his hyperacusis was cured by botox. And that lidocaine is a good trial to see if botox will work. Tried to get him to into more details to no avail for the moment. Apparently they went in through the nose up to the wall across the tensor tympani on the eustachian side and put the botox there. He also says it was permanent that it didn't end after 3 months unlike botox is supposed to do, but I couldn't get him to specify the timeframes. I wouldn't be surprised if this is what happened because as far as I'm concerned TTTS initiates a chain that is felt by the brain, not to other way around. houseclinic dot com in california he says did it

      http://www.benzobuddies.org/forum/index.php?topic=96554.1580
       
      • Informative Informative x 1
    2. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      No matter how I try to review what I think I know, I keep finding myself coming back to this as well. It seems to be the undiagnosed elephant in the room that no-one wants to medically address.
       
      • Agree Agree x 2
    3. Sara_Bond
      Cool

      Sara_Bond Member Benefactor

      Location:
      France
      Tinnitus Since:
      28.10.2015
      Cause of Tinnitus:
      Noise exposure
      I heard of this too. Botox is also used to "heal" people with great TMJD nad facial nevralgias.
      I'm not surprised for hyperacusis.
       
    4. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Try and contact Hyperacusis Research with this info and see if they are willing to do some more investigations.
       
      • Good Question Good Question x 2
    5. Reinier
      Not amused

      Reinier Member Benefactor

      Location:
      Netherlands
      Tinnitus Since:
      06/2015
      Cause of Tinnitus:
      Explosion starting engine
      Very interesting!

      Also the method of getting a drug in the middle ear.
      I have wondered about this before. Why not get drugs in the middle ear through the Eustachian tube?
      I think would like that better than a syringe through my tympanic membrane.
       
    6. canyonero

      canyonero Member

      Location:
      Eastern US
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Acoustic Trauma?
      Ho come nobody on this forum has even tried this?
       
    7. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
    8. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      There is indeed a paucity of quality literature on the subject. It seems to still be up the tin-foil-hat-wearing end of Medicine as far as Mainstream practitioners are concerned, and while TRT rules the roost that's where it'll probably remain.

      It's a largely unexplored area of potentially valuable research that would require a pretty big effort, and no-one much in the field seems to want to invest in it.
       
      • Agree Agree x 1
    9. Ring Ding

      Ring Ding Member

      Tinnitus Since:
      1985
      Cause of Tinnitus:
      Unknown
      Interesting thoughts. In February 2016 my body went into an autoimmune condition like state after getting a vaccine.
      It's mostly had a big impact on my muscles ( weakness and pain ) I was seeing a chiro for a while and he always told me everything seems very tense.( right now the inside of my ears certainly feels that way.) I even get pain in my bones and my fingers. I was actually out to celebrate that my brain fog and dizzy spells stopped happening when I got my hyperacusis. It was a concert and I guess it was a little on the loud side. Would not be surprised if the two things were not related in some way . What it really comes down to is mercury poisoning. It can wreak havok in your body in so many ways I don't even think I could list them all. I belong to a mercury detox group on facebook and a lot of those people describe having some form of hearing sensitivity. Also Autistic children are always tested for hearing issues and sensitivity as well. Mercury is another area of medicine that doctors don't really know anything about. I've literally spoken to a few dozen about it and they knew nothing. So sad really. I'm just going to have to hope that perhaps after another year or two of Mercury detox it will mostly resolve itself. I'm trying to remove the mercury from my brain so I hope that it helps. The botox thing sounds intersting for sure but I doubt i could find anyone to administer it correctly. Might be somethign to look into if things don't improve.
       
    10. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      It would come down to whether your symptoms arise from muscle activity or neurotoxicity. The round-window procedure mentioned in other threads may have application though.
       
    11. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      In the video description to this video about TTTS botox is mentioned.
      "Treatment potentially would include botox injection of the muscle versus simple transection of the abnormal middle ear muscle (Tensor Tympani)."

      Tensor Tympani Spasm


      So why isn't it more common to hear about people getting botox injection?
       
      • Good Question Good Question x 1
    12. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Because there aren't enough practitioners doing it, therefore the papers aren't being written. The question isn't whether or how well it works, but whether the Mainstream of ENT/Otology can be persuaded to accept it. If the literature isn't there they won't do it, and the literature won't be there until they start doing it. Can't win until someone breaks the dam.
       
    13. squeek

      squeek Member

      Location:
      Australia
      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Noise impact/maybe seaborn
      I'm someone who gets botox injections for a different type of sympathetic nervous system disorder (hyperhidrosis). The practitioner injects the botox close to the nerves but not actually into the nerves. After treatment the nerves become less activated by stimuli.

      So, for hyperacusis, there could be credibility in curing it with botox if the botox can seep its way close enough to the nerve bundle.

      For tinnitus, I believe it could be technically possible to cure tinnitus with botox in a few decades but you would have to identify which of the nerves in the auditory nerve bundle is responsible for the affected tinnitus frequency. And on top of that, it would be incredibly difficult to navigate the botox needle to the affected nerve. So at present, not yet for tinnitus.
       
    14. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Yeah, and I also think this statement from Ulf Baumgaertner isn't helpful to further explore the tensor tympani's role in H either:

      "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)."

      from: http://hyperacusisresearch.org/an-md-summary-of-the-2016-aro-hyperacusis-symposium/
       
      • Agree Agree x 1
    15. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      This demonstrates very clearly just how far there is still to go, just in establishing baseline knowledge.
       
      • Agree Agree x 1
    16. japongus

      japongus Member

      Tinnitus Since:
      1998
      I emailed Westcott about TTTS and even though she acknowledged tenotomy as a possibility it was as a a last resort and she pointed me to a paper that proved voluntary eardrum movement could be seen on a tympanogram. I answered it wasn't that simple, that if the muscles are constantly tensed up like in Pau's 2005 paper tonic contractions it wouldn't be seen on a tympanogram or eardrum inspection. Then I speculated that voluntary eardrum movement we get when swallowing, yawning or blinking hard wouldn't be the same as the chain reaction set off by a tense tonic ear that would affect the inner ear, like in the austrian doctors who believe tenotomies help in menieres, or the paper on tinnitus org that says patulous eustachian tube causes sensorineural hearing loss.
       
    17. japongus

      japongus Member

      Tinnitus Since:
      1998
      It's either that or the spasms can be just too subtle as ENT Ashford says in youtube or the ENT Harold Kim might have said.

      The feeling would also be different to yawning because of the way the ossicles are involved, something like that.
       
    18. japongus

      japongus Member

      Tinnitus Since:
      1998
      OK, so who lives in West USA and can visit this clinic?
       
    19. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Which I guess means Myriam knows who would do it, at least in Melbourne.
       
    20. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Myriam Westcott seems to be the most knowledgeable person in the world about TTS so hopefully she do know one thing or another about botox treatment and where to do it. The second most knowledgeable person in the world is @japongus and even if that's a compliment, it's a pretty sad thing that us, the patients, have to do all this research.
       
      • Funny Funny x 1
    21. This seems to be a reasonable argument and is the main thing holding me back from completely buying into the TTTS theory. Why is it uncommon for those with H to have pain speaking or swallowing if it is the TT that is causing it? I'm not talking about thumping or tugging, i'm talking about the subtle pain that occurs, for example, after wearing noise gens. If subtle TT movements can cause pain, why don't larger movements from speaking and swallowing cause pain?

      Pain from TTTS does not have a solid foundation right now. It's really just a symptom set and Westcott put forward a theory (one selected from many that were proposed by Ramirez) that the TT is irritating the trigeminal nerve. That's an interesting idea and the best incorporation of trigeminal nerve pain yet, but it doesn't seem to have been established through experiments. Her paper is solely based on patient reported symptoms and not measurements of TT activity. There don't seem to be "Basics" when it comes to TTTS pain. Just guesses.
       
      • Good Question Good Question x 1
    22. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Is it though? My voice cause me extreme pain and violent TTS spasms. Talking, chewing, coughing is all very troublesome for me. I think sounds that comes from "inside me" are more triggering for the TTS than sounds that comes from the outside. And I was of the impression that most people with H found their own voice bothersome. Swallowing doesn't give me pain but since I got H in 2013 the sounds (coming from my e-tubes, I guess) are much more prominent, crackling and popping etc. This also seems to be quite common for people with H.
       
    23. I think there are multiple sources of pain. Some people clearly have TT or TVP issues with flutter, tugging or thumping with pain, and crackle sounds for different triggers. But you rarely hear of flutter causing pain. And I believe most with H don't experience violent TTS spasms with pain (those in this thread do, i know). I get TTTS like pain in both of my ears, but I have a more ominous and disabling type of sound-induced pain in my right ear only. They feel completely different.

      I am not saying TTTS is ruled out, but I do not think it should be used to describe all of H ear pain without further justification. Is TTTS really the source of earpain for those who have no pain speaking or swallowing, no thumping, no flutter? Pain from low level noise really seems to be an interesting tool for triggering pain that there is little explanation for if you rule out anxiety.
       
    24. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      So, is H a whole different CNS thing, but it has an effect that triggers peripheral symptoms of TTTS, or is H a consequence of the distorting of the hearing mechanism that results in hyperacusic sound perception?

      Would it be safer to say that there is a continuum of injury that depends on the nature and intensity of the exposure/injury and the physiology of the sufferer, and the symptoms in any one individual will match with where they sit on this continuum?
       
    25. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Yeah Briann, I'm pretty sure I also have pain that's not coming from the tensor tympani and instead some kinda nerve pain. This pain is very direct upon hearing a sound that's over my limit and impossible to really explain and locate exactly where it is. Sometimes it feels like it's coming from behind my eyes.

      But I also wonder, like PaulBe, if TTS is a consequence of H or if it is the malfunctioning middle ear muscles that's causing H? I wonder this because my first symptoms were TTS and distortion. It wasn't very painful per se when it happened but it was very unpleasant and caused discomfort and distress. Of course, I had no clue what H even was at the time.
       
      • Agree Agree x 1
    26. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      • Informative Informative x 1
    27. Safer but then it is impossible to talk about! There are so many dimensions.

      I'm not sure. I have always assumed that increased loudness cannot occur as a result of middle ear muscles. The ear is tuned for a certain acoustic impedance and I think changes in any direction tend to just make sound transfer worse. It is much more intuitive to me that increased auditory system and high level brain activity alone is required for increased loudness.

      I think pain from the eardrum tends to be from tugging and it really feels like that is what is happening. But that other, nastier form of H pain that is sensitive to high frequencies I don't think can be from the eardrum. At least not without the contribution of the tensor tympani. Pain from sound hitting the eardrum would be more sensitive to low frequencies.
       
    28. japongus

      japongus Member

      Tinnitus Since:
      1998
      Among other things in her generously long response to me, she said:

      ''As the nerves and muscles in and around the ears are complex and interconnected, and we don’t fully understand how they may be contributing to TTTS symptoms, surgical cutting (tenotomy) of the TT muscle is a last resort and in my experience generally only partly effective in symptom reduction. ''

      I didn't ask her about botox through the tubes, ofc I didn't know about it at the time.
       
    29. japongus

      japongus Member

      Tinnitus Since:
      1998
      A few months ago I realized many H patients might not be like me at all, when I talked to Maura at Hyperacusis Sufferers and she said she had no thumping at all. Unlike me, where all the thumps come in tandem with any type of pain, after which they both promptly disappear hand in hand. The thumps are a sort of pain though, mostly because of how all-around us sound is in life. Other ways my sxs are not like so many other H patients is I don't have setbacks, or at least the only worsenings I had were in the two or three acoustic traumas years ago. While I think @Briann is right to suspect that this might not apply to other people's H, I'm certain Baumgartner is speaking wrongly for my etiology. It isn't entirely pulsatile or ''pulsing'' at all, though it's widely believed to be such. It's only pulsatile if you think it thoroughly through, in the sense that the pulses (trashes about, to and fro) come with sound and are often not louder than the external sounds. I also do vibrate in my ears when I talk but talking is like the sound generators sold by therapists, it generally creates a background noise or vibration throughout the body that increases the minimum sound levels, a process that merely makes the theoretical movements of TTTS lest pronounced. And while I don't see typical H patients complain like I do about the sound of coffee cups being placed on tables, the closest testimonies to my sxs I've read were those that went through tenotomies, botox, or even some who also have glaring autophony issues, most probably from patulous dysfunction of the tubes, who complain more about being touched in the ear constantly than of electrical pain. Baumgaertner then goes on to talk about TMJ, which is the typical cliche and little to do with my circumstances of acoustic trauma. The issue with him is that Jastreboff didn't differentiate between misophonia sufferers that apparently feel nothing in their ear, and this sort of Aristides/Harold Kim triangle of the bermudas where myoclonus can't be externally dxed despite all the myths stating the contrary and yet also have complaints about sound that don't follow patterns of pure loudness measurements. Other things that haven't helped in my differential dx; the official H questionnaire doesn't differentiate between TTTS and H as it obsesses about psychological issues; my local spanish expert in sound therapy and author of one of the biggest papers on TTTS together with Westcott in the 2000s died in a motorbike crash, but before that dxed me with a mix of H and misophonia precisely because of the above lack of documentation. And if we take Baumgaertner at face value, those errors will just be repeated in the future.

      One of the things Kim I think said to anxiousjon was that it could be the veli palatini vibrating, in which case a tenotomy is a failure. Either way, while it does cause me doubts all this talk about how a stapedius or tensor contract with speech and yawning, I wouldn't be surprised if the tests used to measure these contractions are really just measuring the opening and closing of the patulous wall.
       
    30. japongus

      japongus Member

      Tinnitus Since:
      1998
      All that's needed is a tiny bit of comparative literature reading. But nobody cares. I have to do it, with my crappy reading comprehension and concentration that makes me take a lot longer time than a doctoral researcher would.
       

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