Botox for Hyperacusis

[japongus]

If there's an admin reading here, can you change the title to ''Botox for at least a certain type of hyperacusis'' cheers

 

[lapidus]

@japongus

Would you say that you think you have "conductive hyperacusis"?
http://hyperacusisresearch.org/hyperacusis-research-supports-new-erg-grant/

 

[japongus]

@japongus

Would you say that you think you have "conductive hyperacusis"?
http://hyperacusisresearch.org/hyperacusis-research-supports-new-erg-grant/

Not in the sense that he describes it as a a result of dehiscence. My autophony isn't really autophony because the vibratory reaction to the corporal sound is so similar to that of external sound. However I haven't had a ct scan and the mri was many years ago didn't show anything but might have been a shitty mri.

If he means dehiscence just as an example and that there are other types of conductive hyperacusis, then yeah absolutely I have it as there's no way my ear-centered thumps echoes and movements to non-ear sounds are sensorineural if confirmed patulous or MEM sufferers had such similar symptoms. Sensorineural hyperacusis and misophonia don't just get to sit on a tree on their own with Jastreboff lecturing them.

 

[japongus]

An example:

A patient at Hyperacusis Sufferers

''Hi all. I suffer with patulous eustachian tube disorder and have recently had bioplastique injected into my left eustachian tube to help with the symptoms. When I woke from the operation I had a sensitivity to low frequency noises in my right ear that has carried on for 13 days. It doesnt hurt, it is just very intrusive and it's like I "feel" the sounds. It happens when doors get closed, cars pass my house, people close car doors outside, closing the bin lid, turning on and off the tap, the rumble from a boiling kettle, pretty much anything that bangs, rumbles, scrapes, thuds, bass, etc, causes me an issue. Having seen my ent specialist today he believes that I have hyperacusis. Does anyone else have anything similar to what I have? Also, has anyone tried any treatments that have made life easier? Things like in ear plugs that fire white noise etc?''

So similar to my sound sensitivities. And yet who is gonna research the eustachian tube as cause of hyperacusis...

 

[japongus]

This thread turned out to be some lunatic over at benzobuddies who claimed her hyperacusis was visible on MRI which is nonsense, and clearly lied about the houseclinic doing botox ''up the nose'' or some such nonsense, which they denied on repeated phone calls I had to make to them. Couldn't name the doctor because the doctor would then uncover her status as patient, as if anyone gives a shit who she is. Wasted my time and others and made me open a thread here and at h sufferers about nothing. Maybe it's a scam of sorts being carried out over there, why someone would extensively lie about this is mind boggling.

At best though, maybe she had something else like neuropathic pain or microvascular compression or TMJ in the face or something and is now suffering so much from benzo withdrawal and tinnitus she can't think straight. But that wouldn't explain why she's still dicing out advice to tinnitus sufferers as if hyperacusis never existed. Weirdest much ado about nothing most time consuming bs I've experienced in a long time.

Also in my research I found botox has been used for migraines and many complain of worsened tinnitus from that. But I assume this is different.

So I think it's still an interesting angle but another dead end for now.

 

[Mithrandir]

@Briann @japongus and others

That's the explanation why TTTS creates pain

6.5 La douleur dans le syndrome tonique du muscle tenseur du tympan

L'hypothèse d'une douleur introduite par une inflammation neurogène induite par des contractions toniques du MTT pourrait être une piste prometteuse. En effet, Yamazaki et Sato (2014) ont montré la pré- sence de fibres nerveuses immunoréactifs au CGRP et à la substance P autour des vaisseaux sanguins situés à la surface de l'os du marteau, près de la membrane tym- panique et proche des muscles tenseurs du tympan et tenseurs du voile du palais. Ces deux types de fibres sont aussi présents dans la surface interne de la mem- brane tympanique, au niveau de l'insertion du MTT au marteau, sur le ventre des muscles tenseurs du tympan et du muscle tenseur du voile du palais et, enfin, au niveau de la connexion entre ces deux muscles. L'étude a été réalisée par immunohistochimie sur des tissus à partir de 13 cadavres humains japonais sujets, (âgés de 46 à 90 ans). La présence de ces fibres peut donc reflé- ter des propriétés musculaires impliquées dans la dou- leur ou dans l'inflammation de l'oreille moyenne. En effet, suite à une lésion ou un traumatisme, ces fibres peuvent déclencher un mécanisme appelé « réflexe d'axone » ou « inflammation neurogène ». Il correspond à la libération en périphérie de neuropeptides algogènes (substance P, CGRP et neurokinine A) présents dans le ganglion. Ils sont libérés au niveau du site lésionnel ainsi qu'à la périphérie de la lésion initiale et vont inté-resser progressivement tous les tissus sains adjacents. Ces substances P, CGRP, et neurokinine entraînent une vasodilatation, une extravasation et une dégranulation des mastocytes, elle-même à l'origine d'une libération localisée d'histamine (Dallel, Radhouane, Villanueva, Luis, Woda, Alain, et al., 2003).

Ces données permettent donc d'élaborer un scénario hypothétique de l'origine des otalgies dans le cas de l'hyperacousie (Fig11) :
- la douleur aiguë dans l'oreille pourrait être une hype- ralgésie primaire due à l'inflammation neurogène in- duite par une contraction tonique anormale du MTT sur le tympan et sur l'enthèse. Dans ce cas, les contractions anormales du MTT induiraient donc un réflexe d'axone sur les terminaisons sensorielles des fibres nociceptives à l'origine d'une inflammation neurogénique.

- les douleurs sourdes dans l'oreille, la joue, la région ATM, le cou et les sensations de brûlure autour de l'oreille seraient des hyperalgésies secondaires en con- séquence de la diffusion de cette inflammation sur les terminaisons nerveuses nociceptives des tissus environ- nants.

Une inflammation chronique du MTT semble avoir des répercussions pathologiques possibles sur les fibres musculaires. En effet, les effets d'otites chroniques sur le MTT ont été décrits par Abdelhamid et al., (1990) ; ce sont des conditions physiopathologiques qui peuvent être similaires à une hypothétique inflammation induite par le syndrome tonique du muscle tenseur du tympan. Les auteurs ont montré, qu'en condition d'inflammation, le muscle dégénère plus rapidement et accroît la quantité de graisses infiltrées. On observe aussi une augmentation du diamètre du tendon et du muscle bien supérieur qu'à la normale. Cette inflamma- tion peut entraîner une hyperacontraction des fibres du muscle et peut expliquer les spasmes ou les contractions toniques observées en clinique dans les otites (Duncan, 1982). Cet effet pourrait donc être retrouvé dans l'hyperacousie douloureuse et le choc acoustique.

Un autre effet pathologique pourrait être envisagé : si l'hyperacousie induit un état de contraction tonique du MTT alors un nouvel événement comme un choc acous- tique ou une anticipation forte à un bruit pourrait entraî- ner une hypercontraction du muscle déjà préalablement contracté. Cette action musculaire peut s'apparenter à une contraction dite excentrique. Dessem et Lovering (2011) ont montré sur le muscle de la mandibule que ce type de contraction peut altérer la capacité de régénéra- tion du muscle (accumulation de lésions tissulaires et de fibrose). Il est peut-être possible que ce même méca- nisme puisse toucher le MTT et contribuer à une dou- leur musculaire chronique, mais cela n'a pas été prouvé. Le MTT est donc un muscle à vieillissement rapide particulièrement dans un état d'inflammation chronique. Cette propriété pourrait ouvrir des pistes pour com- prendre les rechutes et/ou la chronicité des troubles chez les patients les plus sévèrement atteints.

 

[PaulBe]

Which suggests a place for high-dose steroids in the initial stages, and maybe even later. Great find Mithrandir.

 

[lapidus]

@Mithrandir
@PaulBe

I don't understand french. Could you summarise what it says in english?

 

[PaulBe]

I ran it through Google translate. It translates very well.

 

[PaulBe]

It seems to focus on nerves becoming chronically inflamed but in the middle ear as a reaction to ongoing muscle spasm. It seems to support some theories I've personally held about hyperacusis (in some forms at least) as being a related but different disease entity to tinnitus and requiring of a separate diagnostic and treatment model.

 

[lapidus]

It seems to focus on nerves becoming chronically inflamed but in the middle ear as a reaction to ongoing muscle spasm. It seems to support some theories I've personally held about hyperacusis (in some forms at least) as being a related but different disease entity to tinnitus and requiring of a separate diagnostic and treatment model.

Thanks!

LLLT claims to reduce inflammation so maybe that's a way to go. I saw that you discussed the subject with Bryan Pollard in the comments of this patient story: http://hyperacusisresearch.org/low-level-laser-therapy/

 

[japongus]

@Mithrandir
@PaulBe

I don't understand french. Could you summarise what it says in english?

Mithrandir is bluffing, it's just another coq au vin avec frogs menu

 

[PaulBe]

Congratulations Japongus on completing Round 35 of the "what exactly is hyperacusis" tournament over at the other forum. I'm still calling a stalemate based on the two of you discussing things from completely different perspectives, and each wondering why the other won't listen. Maybe you need to remind Rob that Hyperacusis is a symptom, not the disease itself, and its still hyperacusis even if the presentation isn't identical to what he had. His approach is like telling someone they don't have Angina Pectoris because the pain doesn't radiate all of the way down the Left arm.

 

[Mithrandir]

@PaulBe @japongus

Have you got the link ? I want to have fun before bed !

 

[japongus]

I think Rob is being deliberately obtuse, that's gotta be it, carrying me along for a ride on what the meaning of discomfort could be in Alice in Wonderland. I was very clear and repetitive and yet he insisted to deny blatant facts I was throwing at him. I don't think I can learn anything from him apart from hey there's a subset for whom it works, but that's also my point anyways, that it's there and it's a lot smaller than he thinks. Mithrandir it's in the new comments over at chat-h, it's 2 pages long if you have the inclination to slog through it...

 

[japongus]

Thanks!

LLLT claims to reduce inflammation so maybe that's a way to go. I saw that you discussed the subject with Bryan Pollard in the comments of this patient story: http://hyperacusisresearch.org/low-level-laser-therapy/

I remember expressing this middle ear thing with a LLLT believer a few months ago but didn't have the energy to argue with him lol

 

[japongus]

Mithrandir got in contact with an author who used theories of kinestheology that I don't understand very much and was saying that tinnitus could arise from the middle ear but that these were phantom perceptions and when Mithrandir mentioned the possibility of tenotomy, the author was like ''hmm interesting...'' something like that

 

[Mithrandir]

Well you can't speak with stupid people who believes hyperacusis is a disease from the devil and Jastreboff is the new messiah... Maybe TRT can help in some case for some situations...


"BUT hyperacusis is a symptom from a disease (like tinnitus)...it could be from noise injury, SCDC, fistulas, autism, head trauma, TMJD, etc etc...it's a non sense to believe sound therapy can cure fistulas...it's like believing in Santa Claus"

 

[Juan]

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.

If your voice resonates inside your ears when you talk, that's authophony, but if when you talk you feel your voice like yelling into your own ears that's hyperacusis. I have experienced both. In the first case, autophony, you can yell someone and you will not be in pain. In the second case, severe hyperacusis, if you try to yell you may get pressure, pain etc

It would probably take a severe case of H to find own's voice bothersome.

 

[RonnieThailand]

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."

I know I'm replying to a really old comment, but just for the sake of building anecdotal data on this... I believe mine may be from TTTS. I have severe hyperacusis, delayed burning pain that lasts for days or weeks at a time. I also have pulsatile tinnitus, which started out as just ringing and it's a buzzy/hissing type of pulsing, the same type described in TTTS studies I've read. It's a high pitched type of pulsatile tinnitus, but I also sometimes get the throbbing heartbeat sound in my right ear for a few seconds, which I believe is the TTTS muscle as it normally doesn't last very long like something vascular normally would.

My tinnitus is very reactive to sounds (raises when sounds are present, lowers quickly when in silence). I do get pain when talking, just like I get pain from any other sounds. The delayed burning type. When I talk or when I'm exposed to sounds, my jaw starts tightening up as well on one side. This side is more seriously affected as far as ear/jaw/temple tension because it's the side I had an earbud in when I was exposed to a loud sound. The burning pain and fullness is equal on both sides, and the tension in the worst ear I see as being something different from the fullness. I've had what feels like a malfunctioning eardrum/tensor tympani on that side ever since. That side feels much more "clogged" like there's an object broken in there just sitting there and it spasms in response to sounds like toilets flushing, crunchy food I'm eating, or light switches.

When I take clonazepam it greatly reduces my pain and tinnitus, which makes me think it's actually the muscle relaxing properties doing this.

However, I started taking orphenadrine citrate recently to test it out and I don't get the same effect from this, but it does cause rumbling to appear in both ears, the type of rumbling described in TTTS. So this tells me these muscles are definitely involved somewhere in this process in my case, if not the entire cause. I wanted to try Flexeril as this has shown more promise in studies for tinnitus, but it's not available here so I had to go with the weaker option and I haven't been taking it that long either and saw in the study it took a few weeks for tinnitus to reduce for most.