Botox for Hyperacusis

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

 

@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.

 

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...

 

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.

 

@Briann @japongus and others

That's the explanation why TTTS creates pain

 

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

 

@Mithrandir
@PaulBe

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

 

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

 

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/

 

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

 

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.

 

@PaulBe @japongus

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

 

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...

 

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

 

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

 

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"

 

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.

 

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.