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New York Post Article on Hyperacusis

lymebite

lymebite

Member
Author
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Nov 14, 2015
740
United States
Tinnitus Since
2013
Cause of Tinnitus
Unknown
#1
#2
We all get treated pretty badly as a rule with this, but you Americans seem to have awful, almost cruel Medical systems.
 
#3
I found a mistake in the article, it says H is a "rare" condition. We all know it's not - just widely misunderstood and under-researched. Maybe we should try and get in touch with her, since she already has an article out there, she might be able help raise awareness.
 
#4
Cal18 said:
Maybe we should try and get in touch with her, since she already has an article out there, she might be able help raise awareness.
Click to expand...

The author of the New York Post article personally suffers from severe hyperacusis and has published a number of articles on H and T over the last several years. She and her husband were interviewed in a segment on ABC News 20/20.

 
#6
#7
Great articles...

This one by Joyce Cohen was good too : https://www.buzzfeed.com/joycecohen...ecomes-torture?utm_term=.ox0QRZadY#.sdM5BkeVJ

Cal18 said:
I found a mistake in the article, it says H is a "rare" condition. We all know it's not - just widely misunderstood and under-researched. Maybe we should try and get in touch with her, since she already has an article out there, she might be able help raise awareness.
Click to expand...
I'm not sure it's a mistake. It's rare : do you often meet people with hyperacusis in everyday life ? Me, never.

Lots of people have it worldwide but it's still a tiny part of the population... Unknown, misunderstood, under-researched and probably growing, that's for sure.

Joyce Cohen explains that well : one of the hardest thing we have to deal with is to make people realize it's even possible... It's always very painful when someone tells you : "It's in your head, if you want it to go, it will".

It's been here for 12 years along with tinnitus, my biggest dream was made impossible by this condition, do you really think I don't want it to go ? People :nailbiting:
 
#8
Foncky said:
Lots of people have it worldwide but it's still a tiny part of the population... Unknown, misunderstood, under-researched and probably growing, that's for sure.
Click to expand...
Yet its nature probably causes it to be hidden.
 
#11
Foncky said:
Joyce Cohen explains that well : one of the hardest thing we have to deal with is to make people realize it's even possible... It's always very painful when someone tells you : "It's in your head, if you want it to go, it will".
Click to expand...

As someone who has suffered from anxiety and depression, I can say that even if it's all in my head, I can't really make it go away. People told me to not to be sad, not to be scared. I always wanted to say, "Wow, I haven't thought of that! You're a bloody genius with that unique insight!"

Do they tell cancer patients not to be sick? I don't think so.

Getting T and H is just the shitty cherry on top. Because of my history of mental issues, people who know me are quick to assume that my T and H are symptoms of anxiety and depression. I'm sick of defending myself.

T and H are both ear issues. Something happened to our ears and our brains are just responding in the way they know how. I wish people would understand this!
 
#12
To me, it's more common than people think because I see all the people on this forum suffering. If there are this many here, there are probably 10x as many who haven't signed up.

@Lex Your story sounds exactly like mine. I have a history of both so for sure "I'm overreacting and panicking again". No one has actually really said that to me and my family and friends are supportive but I know they're all thinking it or have at some point. Once again this proves the theory that those with anxiety and depression are more prone.
 
#13
Lex said:
I'm sick of defending myself.
Click to expand...
That's the thing. Must we ? I always feel I have to defend myself. But what's the point really ?

When you defend yourself, people will say you want to stay the way you are and refuse to get rid of your condition.

Actually for one person saying this, I know 10 people who encourage and understand me. But the one person ruins it all. Especially when this person is an ENT doctor...
 
#14
This may raise awareness, but it just shows what a ridiculous concept hyperacusis is. Those sxs are most probably tonic tensor tympani syndrome or veli palatini muscle fibers or eustachian tube dysfunction. Not a missing link between cochlear hearing loss and ''hyperacusis'' based on some half-assed discovery of a couple of nerve fibers inside the cochlea. It's preposterous to think a hit to the jaw would miss all those muscles and fibers from the jaw to the oval window and land inside the cochlea.
 
#16
japongus said:
Not a missing link between cochlear hearing loss and ''hyperacusis'' based on some half-assed discovery of a couple of nerve fibers inside the cochlea.
Click to expand...
What ? Are you kidding ?

My hearing was normal. First acoustic trauma = mild H.

Second acoustic trauma = severe H.

I have TTTS too but I see it as a consequence of my hearing disorders and associated stress. Noise started my H and the explanation is in my damaged cochlea.
 
#17
Foncky said:
What ? Are you kidding ?

My hearing was normal. First acoustic trauma = mild H.

Second acoustic trauma = severe H.

I have TTTS too but I see it as a consequence of my hearing disorders and associated stress. Noise started my H and the explanation is in my damaged cochlea.
Click to expand...

You have no proof of what you say. Acoustic trauma has been linked to straight up myoclonus as well as TTTS as well as ''hyperacusis''. And now in the article we have an even bigger range of symptoms on a TMJ issue, which has long been linked to TTTS a lot more than it's been linked to ''hyperacusis linked to hidden hearing loss we can't prove yet and due to a couple of fibers inside the bone of the cochlea''.
 
#18
All right, my hearing loss (up to 60dB in the "normal" range) + T + H, all caused by acoustic traumas, must be a muscular problem ? Sorry, I don't get your point.

You seem to think that hyperacusis is a bullshit concept and doesn't exist as far as cochlea damage is concerned.

I have no proof, I'm just telling you about my case. What are your proof already ?

By the way : of course various hearing disorders have not been linked to hidden hearing loss a lot yet. Hidden hearing loss has been discovered quite recently and we're still learning about it.
 
#19
Hidden hearing loss is a concept to cure inner ear, not to cure hyperacusis and that's a huge difference...
 
#20
Wrong : http://www.masseyeandear.org/news/p...en-hearing-loss-in-college-age-human-subjects

"Establishing a reliable diagnosis of hidden hearing loss is key to progress in understanding inner ear disease," said Dr. Maison. "Not only may this change the way patients are tested in clinic, but it also opens the door to new research, including understanding the mechanisms underlying a number of hearing impairments such as tinnitus and hyperacusis."
 
#22
There's massive overlap in diagnosis in mainstream otology, there's obviously gonna be even more overlap in an area otologists don't give a rat's ass about. Jastreboff flew in to take advantage of this lack of interest, and now the cochlear damage bunch are doing the same. This site has a post by Dr Bungler saying cochlear nerve cuts for tinnitus make no sense, and yet an apparently well-published now deceased doctor named JL Pulec wrote the complete opposite. Dr Bungler appealed to the authority of peer-reviewed Westcott papers when trying to frantically defend why Jastreboff would see a normal ear where Sismanis wouldn't. Tinnitus.org links patulous dysfunction to cochlear damage, or ''damage'', mind you patulous dysfunction caused by acoustic trauma. Acoustic trauma has been linked directly to patulous dysfunction and straight up myoclonus in the crappy literature we have on the subject. Broken eardrums, tenotomy, grommets and a host of other things going on in the external and middle ear have been linked to H, both making it worse and making it better. Even patching the oval and round window has been linked to it, over at hyperacusis sufferers. I'm not gonna just pack up my bags and go looking for E.T. (the alien not the tube) in his flying spaceship in the mysterious inner ear. The new boys in town going on about the cochlea don't impress me for a minute.
 
#23
You're doing philosophy and low quality investigation : a lot of recent research you don't refer to. We need a cure, let's encourage the few people on earth who are working for us right now.
 
#24
Good that the New York Post is putting these stories out there. These stories are so sad but they need to bee told.
 
#25
Foncky said:
You're doing philosophy and low quality investigation : a lot of recent research you don't refer to. We need a cure, let's encourage the few people on earth who are working for us right now.
Click to expand...

Hyperacusis focus mentions the middle ear as a potential mechanism. None of those writers on the cochlea you like so much write about whether the pain fibers they've supposedly discovered could just be pain fibers in the middle ear. Hell, in the TTTS support group on fb we have one that could be thumps aka echoes from a dehiscence not tonic tension. Even patulous dysfunction could be causing echoes and thumps to external sound. Fullness doesn't have sense if you can't do comparative literature, but it's been linked to ETD and fistulas and whatever else, but for those with cochlea nerve beliefs it's just a notion that whizzes past like an F1 motor vehicle in Monaco.

At least one of the patients at chat-h who got a tenotomy and had his sound spasms to external sound aka hyperacusis cured complained of high pitched sound. Had a believer in cochlea nerves or a Jastreboffite seen him he wouldn't have had that diagnosis.

Both on facebook and in academia, there's a much much bigger tradition in the TMJ community to, when it concerns hyperacusis, to talk about the muscles leading from the jaw to the ear, and when reaching the ear obviously to talk about the middle ear not the inner ear. The article is radically wrong to mention the cochlea in an article where hyperacusis started at the jaw, and you guys are barking up the wrong tree.
 
#26
Of course the middle ear can be involved ! Does that mean the inner ear can't ?

You just cured H for every one then ! A good surgeon and you're done.

You're referring to chat-h and FB groups, all reliable pieces of information, as we all know.

I really don't get your hatred for inner ear researchers. Have you read about regeneration work ?

Do you know about recruitment, which is an inner ear problem and very similar to H for people like me with hearing loss ?

I don't care about who is right, this is not a true or false game.

You seem to have strong beliefs about all this. Why ? I don't. I admire people who work for us and I hope a cure will come soon. My survival depends on it. That's it.

If you can cure my H with a scalpel, please, proceed. We'll fix T and hearing loss later. For now, none of the ENT surgeons I saw suggested an operation to me.
 
#27
Foncky said:
Of course the middle ear can be involved ! Does that mean the inner ear can't ?

You just cured H for every one then ! A good surgeon and you're done.

You're referring to chat-h and FB groups, all reliable pieces of information, as we all know.

I really don't get your hatred for inner ear researchers. Have you read about regeneration work ?

Do you know about recruitment, which is an inner ear problem and very similar to H for people like me with hearing loss ?

I don't care about who is right, this is not a true or false game.

You seem to have strong beliefs about all this. Why ? I don't. I admire people who work for us and I hope a cure will come soon. My survival depends on it. That's it.

If you can cure my H with a scalpel, please, proceed. We'll fix T and hearing loss later. For now, none of the ENT surgeons I saw suggested an operation to me.
Click to expand...
To his credit, for whatever reason (likely his own experience) Japongus is very focused on raising awareness of the often overlooked middle ear reasons for hearing symptoms, such as myoclonus, TTTS, etc. I think by now we all know there is no one explanation for everybody's symptoms. However if more research/awareness was known of these lesser talked about conditions, it's possible you would have had diagnosis and surgery suggested if this was applicable to you. As things are now, it's hard to even get a diagnosis for such middle ear conditions, because most ENTs are not even aware of stuff like this, and I think that is why Japongus is focusing on informing people of these other possible causes of T+H (et all).
 
#29
For me I don't really see how the middle ear could cause T...
And the punch could also have damaged or moved the auditory nerve which now create pain when information passes though it.
 
#30
VRZ78 said:
For me I don't really see how the middle ear could cause T...
Click to expand...

It's pretty common however.
Otosclerosis is one of the big culprits, but there are others. When you "fix" the middle ear problem (with a stapedotomy), you often get rid of T.
I can't find the research paper that explains the physics behind it, but there's a very nice explanation for the otosclerosis-induced low frequency tinnitus.
 

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