Hyperacusis, As I See It

@Blue28
I hear you Blue28 and fully understand. Try not to be too hard on the doctors and I will explain. They are Ear, Nose and Throat physicians and can treat the ear medically or surgically. However, the majority of them have never experienced loud intrusive tinnitus. Therefore, they know nothing about it and in my opinion, doesn't qualify them as tinnitus experts which calls for a different set of skills.

I regard Hearing Therapists and Audiologists that treat tinnitus patients in the form of counselling etc as the tinnitus experts. Most of these people you will find have tinnitus. Therefore, there is a degree of understanding and empathy they will have towards tinnitus patients, that most ENT doctors don't.

If you haven't read my article on tinnitus then I advise you give it a try when you have the time. The link is below.
All the best
Michael
ttps://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/

 

I agree with you @Michael Leigh that many ENT doctors don't have the slightest clue about how to treat T & H, one even told me it was all in my head. I can't tell you how frustrated and angry those kind of comments make me feel. I will take a look at your post when I get a chance, thanks

 

I hope you get the time to read my article @Blue28. It is quite long. If you are able to print it so much the better. On the first page, you will see I make reference to a video tape that I watched some years ago, about an ENT doctor who is supposed to be a tinnitus expert and has written books on it. I won't spoil it for you but I think you'll agree, nothing could be further from the truth.

Take care and all the best
Michael

 

@Michael Leigh
As I’ve said, my hyperacusis was so severe conversation with someone caused immense pain at times.

Was this pain ceasing just after exposure or was lasting some more time?

 

It lasted for over 1 year and was completely cured using white noise generators.

 

Michael, between these two alternatives...

1. Attending a loud concert
2. Sitting in a quiet library

...which one is the more likely to cause tinnitus and possibly hyperacusis? Try not to think too hard about it, and when you have found the (right) answer, it should be self-evident that an underuse of earplugs is more likely to contribute to a worsening of tinnitus/hyperacusis then an overuse is. This shouldn't really be rocket science for the common rabble.

You should take note of the following article which features some of the real experts on the subject (incl. the president of Hyperacusis Research, Bryan Pollard):

https://well.blogs.nytimes.com/2014/12/01/when-everyday-noise-is-unbearable

Excerpt:

It seems to me that you are regurgitating the typical kind of 1970's audiology theories on how the auditory system works. I should mention to you, however, that things have evolved since then. Try to keep up - it doesn't hurt to learn a thing or two once in a while. And while we are it, your countless pieces of advice on how to not overprotect the ears, may actually have contributed to members of this board having their condition worsened.

On a slight side-note, how do you reconcile your advice of not using headphones (even at low volumes), when you at the same time advocate the use of WNGs (the ear type ones)? Isn't that a case of double standards? Or, should we assume that white noise/pink noise is not dangerous, but that all other forms of noise is???

 

@foryourinfo
This will be the last time I will be replying to your comments. I am here to help people not to argue or to try and score cheap points. As you have another agenda, please go ahead but I won't be taking part in it.
Goodbye

 

Ohhh.......... so someone gives Michael a little push back on his knowledge and now suddenly you don't know how to defend yourself and your mindless self-constructed theories.

I guess it didn't take much to bring down your house of cards.

 

I think he had great points, too bad you can't answer any of them. It's seems sketchy when you to have so many opinions, yet when someone challenges you, you can't in the slightest way back what you preach. In the real world people like that are considered to be full of shit, and no one takes them seriously. Is that why you come to the online world?

 

@Michael Leigh has stepped outside his safe space, aka forums and groups heavily censored by Jesus Camping Sound Therapists.

 

I like your brand of humour @japongus, and this occasion it has made me smile. Your language has improved considerably which is also nice to see.
All the best
Michael

 

Unfortunately it's evident from your own story that you improved idiopathically and in a placebo manner, not from TRT. The reason being your tinnitus went away. TRT hustlers always claim to habituate not to make the tinnitus go away. This is a problem that happens so often in TRT miracle cure stories like yours, you all jump all over the place, you are all radically unspecific, you're all more optimistic than Alice in Wonderland 1970s porn edition. This guy hops on TRT and says nonsense as grandstanding as ''I helped many friends who have come to me for help with this. My old boss had really bad tinnitus for 30 years and I spent a slow day at work telling him about how TRT works. He called me the next day and told me he had not slept so good in years. Last time I saw him I asked him how he was feels and he said he never thinks about it. He said he got his life back.'' Which is a contradiction from the statements from TRT hustlers that TRT works long-term, not to mention an absurd mise-en-scene all on its own. 30 years of T and the boss is now cured because he has a white noise box at night. Also, had your ''tinnitus'' remained the same while the ''hyperacusis'' disappeared at least we could try to make a case for ''sensitivity'' and ''tolerance'', but as it is, it seems that simply the injury disappeared. Even if it wasn't placebo, it wouldn't merely be ''as how you see it'', it would be for your own type of ''hyperacusis'', which is a symptom, not a diagnosis.

Next time, don't just repeat the mantra about how the huge range of injuries and possibilities behind the different processes squirelling under the banner of hyperacusis are all down to ''hypersensitivity'' and ''decreased sound tolerance''. Give us a working theory behind what TRT is actually doing to the ear, and prove to us why hyperacusis is this one thing you speak of. Don't be a reductionist, don't be like Jastreboff. Try to address exactly the symptoms that are addressed by TRT and under what theory in otology Jastreboff is supposed to be making sense. Is he addressing pain? Is he addressing dysacusis? Is he addressing reactivity, distortion, echoes, neuropathic pain? What type of hyperacusis?

One paper titled Strange Chewing Muscle says ''Sustained contraction of these muscles in TMD may alter inner ear perilymphatic and endolymphatic pressure through changes transmitted from the oval window toward the walls of the labyrinth and semicircular canals''. Another one, which Debbie from chat-hyperacusis pointed to in an important post, uses sonography to see if cerebrospinal fluid is causing middle ear muscle contractions. So what is it, the middle ear affecting the inner ear, or the inner vascular system affecting the middle ear? Another paper says there's another theory behind the interaction between the middle and inner ear, the intra-labyrinthine pressure theory. Other papers talk about cochlear damage from sounds, shit like the cochlea blood barrier suffering hypoxia during acoustic trauma, which I don't understand. Another one says it's phantom sounds from microdisruption of the ossicles. So look into explaining whether this and that theory is or isn't part of Jastreboff's theory of TRT and ''decreased sound tolerance'' for ''hyperacusis''. I assume each and every one of these papers come up with their own resulting ''hyperacusises''. As do all the theories out there like what neurotransmitters sit on the tensor tympani, why the failure of muscle relaxants in dealing with TTTS isn't proof this isn't psychogenic. Or maybe look into how a partially open eustachian tube could be difficult to diagnose, or it could be a myth, and would it cause distortion and echo to external sound by allowing it to enter from where it shouldn't. All different types of ''hyperacusis'', as it's a symptom not a diagnosis.

 

@japongus
I am not here to defend TRT to non believers and the same applies for any other treatment. My purpose here is to help and advise people on tinnitus if possible. I have had TRT twice and know it works. I have never said my tinntius went away or was cured. I said my tinnitus reduced to a very low level and my hyperacusis that was once very severe, was cured completely with this treatment wearing white noise generators and has remained that way twenty years on.

In 2008 my tinnitus increased to very severe levels for reasons I’m not quite sure, but believe listening to a symphony late one evening on my HI-FI and turning up the volume caused it. I shall hold Joseph Haydn responsible! I went to bed and awoke with loud intrusive tinnitus that increased in severity over the following days and weeks. It was then I returned to hospital and started TRT for the second time. I have written about this at length. Anyone interested to read more please go to my “started threads” and read my post: My experience with tinnitus.

I wish you well. If we correspond again please try to keep the language as clean as possible.
Michael

 

Except that is what you're doing. You believe in TRT jargon about ''sensitivity''. You believe in unfundamented TRT claims that ''reactive tinnitus'' doesn't exist. It's not the first time believers in sound therapy react viscerally to the term ''reactive tinnitus'', it happened profusely over at chat-hyperacusis. Then it's only natural that me or others like me who go to the source and find nothing but Jastreboff quoting himself and his own jargon, will replicate you to relativize your claims.

 

I thought you had something sensible to say unfortunately you don't. A shame really. I won't be commenting on TRT with you any further. I have had the treatment you haven't .
All the best
Michael

 

@japongus
How do you see Hyperacusis? I've tried last year TRT. I had one counseling therapy. Tried to use the WNG's but they caused inmediately higher volume in my T and I had pain. It felt awfull. Beside that the counselor said that I was looking for sounds... What an amateur. I stopped inmediately with TRT.
I think TRT mild help people with mild t/h. But definately not for severe, defeaning T and severe H.

 

TRT is a treatment that last up to 2 years. You cannot judge a treatment after one session. Furthermore, you need to be with a therapist that knows what they are doing. There is a right way and wrong way to use white noise generators. When the auditory system is sensitive as yours is. Then the white noise generators should be worn for 1hr or 2 then taken off. Slowly build up the wearing time over a few weeks. If you just put them in and set the volume; depending on the person and how sensitive their auditory system is due to hyperacusis. This could cause pain. In this case it's best to build up the wearing time slowly.
Michael

 

Now now Michael where are your manners? I have had the treatment. I was provided with sound generators by scamster sound therapists who made molded sound generators in my ears for a 1.5k euros a decade ago. It did nothing of course, because reactive tinnitus is a real physiological non-limbic thing. Nothing to do with ''sensitivity'', just like it has nothing to do with sensitivity when people acquire reactive tinnitus from mandibular issues like a punch to the mouth or a dentist's appointment. We have a ton of accounts pointing in this non-limbic direction, people who had things in the wrong place in the middle ear and a stapedotomy relieve them of their reactive tinnitus. We have different theories of what's going on in the ear, none of which are addressed by you or Jastreboff, by TRT or sound therapists. Because reactive tinnitus is a real thing, just like pulsatile tinnitus.

 

This is what's known as the combination of the no-true-sound-therapist argument and the bait and switch so common in sound therapy. The reality is, sound therapists ''have such great success'' because they consistently accuse their failed patients of not trying hard enough. Works every time.

 

@Michael Leigh
I can say how professional somebody is after one session, yes I can. This person is an specialist.
I couldn't resist the sound, the counselor knew I had bad H but thought I was exagerating. Like I said before I was not a right canditate for it. And they claim 80% succes rate... A very doubtful claim

 

I think there are broken proprioceptors in all sorts of places of the auditory system or nearby, and that a loud minority of people whose broken proprioceptors are in their limbic system, together with chumps that didn't realize it was placebo, flood the forums with their kool-aid accounts, in so doing drag along many more dubious desperately optimistic folk along for the ride. Result is, unlike in pulsatile tinnitus, no real cause is ever looked for behind reactive tinnitus and any attempts to do so are gaslit with facile self-referential jargon. That's why they say Jastreboff has delayed knowledge by the decades.

 

I thought H was also limbic system related. What is your theory? Why do we have H?

 

Indeed, you are correct. You are perfectly in your rights to pass comment about the "Tinnitus specialist" that you saw. No doubt you were absolutely right in your comments. I was specifically referring to the TRT treatment, in that one cannot make an assessment of a treatment that lasts 2 years after having only one counselling session.
I have had TRT twice and both times with good results. Both of my Hearing Therapists have tinnitus. One acquired it and the other was born with it. I think it's always best if a Hearing Therapist or Audiologist who practices treatments such as: TRT, CBT and counselling to have tinnitus and many of them do. The ones that don't, I do not believe they can have the understanding and be able to empathize and be patient with someone that they are treating with tinnitus.

Michael

 

Yes, I know that you had succes. And that others might try TRT. It was my sister's idea to go for it. She knows the audiologist. Actually on forehand I knew it wasn't my cup of tea. And I was right. When you're desperate you try everything despite it could make things worse because you don't know all these things before hand

 

Hi Michael, do you work for Tinnitus Talk?

 

Tell me what are your symptoms, how is your perception of sound and your physical sensations, and I tell what I think. Also, tell me what have you been doing lately to deal with your audiological problem, not the doctors you consulted, but what you did, for example, reducing your social activity, or using earplugs, that kind of things.

 

I don't think the TRT treatment made your condition worse. I believe it was the person administering the treatment wasn't skilled enough in the counselling and I bet he or she didn't have tinnitus? It is vitally important that someone practicing TRT or CBT knows how to counsel someone with tinnitus.

Many years when I first got tinnitus. The Hearing Therapist that I had was: impatient, didn't show any understanding and was quite abrupt with me at times. This resulted in me making a complaint. I never saw her again. My new Hearing Therapist had tinnitus and a level of understanding that put me immediately at ease. I learned other tinnitus patients had made complaints about the first hearing therapist I saw, and she was asked to leave the hospital. It was no surprise when I learnt she never had tinnitus.
Michael

 

No.

 

There are lots of theories. Damage to the vessels in the cochlea. Middle ear issues. Problems of hydrops and pressure. Cells in the middle ear that aren't at the appropriate tonic tension. etc. We have different types of hyperacusis, mine is far closer to a middle ear muscles issue than so many other types of hyperacusis out there. But at the same time it could perfectly be cochlear damage. In the link above someone named Debbie points to an article saying low nontraumatic frequency sounds can cause hydrops. In another one they look at an MRI and see it's the middle ear that's acting up. If we have different symptoms of H, then that would be key to trying to point to what type of H we have, but sound therapists are all philistines and don't ask these questions from patients, and don't like to theorize about exactly what damage has happened.

 

Exactly what type of hyperacusis do you have?