Hyperacusis on 20/20 TV In US

H can lead to phonophobia if you avoid instead of therapy. No therapy/no avoidance is better than avoidance, IMO. I don't doubt they have H, but they aren't doing any favors to themselves by avoiding.

 

Hope this doesn't add drama, but I've been told I have misquoted Joyce, and if I have, I will say I am terribly sorry if I have done so. It was not my intent. Please disregard anything I have said that isn't directly related to my own condition or what has been viewed in the video.

I thought it was appropriate to respond here, since it will be seen, and it was here that I made the comments.

Joyce, I apologize.

carry on!

 

I pretty much never use hearing protection and I usually have background noise on 24/7. I'm tempted to use a pink noise flac file with headphones on my computer for a certain amount of time each day, but to be honest, I never know what volume to have them at.

Same. I neither have the money for TRT nor for sound generators.

Except the problem I have with the buzzfeed article is that it's extremely negative. If someone thinks they have hyperacusis and reads that it's very possible they'll come away thinking, they do in fact have hyperacusis, nothing can be done about it, and never leaving their home is in their future.

 

Agreed. I didn't because I read many things, that only being one, and I don't scare easily. I do know some others were scared after reading, however.

re: pink noise. I stumbled upon this site...
http://www.tmsoft.com/white-noise-player/
(they also play different types of noise)

I can play it in my office, just keeping the window open.

 

Hi, where I can see the complete video about ABC NEWS 20/20 Segment on Hyperacusis.

Is this the first video about our disease? Im sure will be very useful.

Thanks

 

@Ornitoring
I believe the link on the first page is the entire segment that was aired. Someone correct me if I'm wrong.

reposting link:
http://abcnews.go.com/2020/video/everyday-noises-pain-wife-husband-living-ny-22421602

 

Ok, I though this video was more long but 9 minuts is sufficient

thanks.

 

That video scares me...wow!

 

Don't be scared. You have a lot of people here that can help.

 

I appreciated that that video brings h to people's attention, but I feel like the main two subjects are doing exactly what doctors counsel not to do... mainly in terms of over-protection leading to ongoing or increasing sensitivity.

Also, their rationale for living in a loud city is spurious at best.

 

oddly enough, Joyce's husband, Ben, followed counselling by doctors (don't wear ear plugs in normal environments, it's okay to go to concerts with ear plugs, etc.) for many years until doing so lead to him worsening significantly.

there is a whole lot more to their stories than what was aired on this 8 minute ABC segment, and if i were you guys i'd reserve judgement until hearing all of it.

 

Unfortunately, as with all things in life, we must make judgements based on the information presented. We can adjust these judgements as we are presented with new information, but reserving judgment for an indefinite period of time because all facts may not have been given makes little sense.

 

I can't imagine Big Brother with hyperacusis people

 

Kenji, not only didn’t ABC mention a cure in the near future, they mentioned nothing about treatment in the present. This is very unfortunate because treatment exists and works for a lot of people.

SueR, as you say, people with hyperacusis can develop phonophobia if they believe they must avoid sound and make a habit of doing so. Hyperacusis can lead to phonophobia. I am very glad you got some good advice about not overprotecting. You mentioned that the woman in the ABC show is not typical. It also sounds like you have interacted with her. To me, her reaction might be typical of people who are afraid and who have made decisions based on fear instead of doing their homework. Maybe when she admonished you for not doing your homework, that was her fear talking?

NeoM, using a FLAC file of pink noise with headphones is a good idea. Set the volume so you can hear people around you. If the volume is loud enough to mask sound around you, it would be a good idea to lower it. As you say, something can be done to treat hyperacusis. I liked what you wrote about ear damage and how if hyperacusis was related to ear damage, then counseling and sound therapy would not work. Obviously, they do work.

Lynnette, the video may be less scary if you think of it as presenting a married couple’s point of view and their beliefs about sound. That is all it is. Nothing more than that. Just a point of view and beliefs. The man seemed devoted to his wife, but their views seemed to reinforce each other, like two people living in an echo chamber. Unfortunately, the producers did not talk to someone with clinical experience who has treated people with hyperacusis. They interviewed the Director of the Eaton-Peabody Laboratories, an intelligent man who is Professor of Otology and Laryngology at Harvard Medical School, but who has never treated a single soul with hyperacusis.

alibee, I liked reading what you wrote. Overprotecting can lead a person with tinnitus to become more aware of tinnitus and it can lead a person with hyperacusis to become more sensitive to sound. You're right.

Street Spirit, you also have interacted with the woman in the show. I was struck by how she advised you not to have hope. I disagree with her perspective. Hope is something patients feel when they realize they are on the right track and it is something most people with hyperacusis feel when they start to make progress. As you say, hyperacusis and phonophobia are treated differently. The good news is hyperacusis and phonophobia can be treated for many people.

demi, you wrote that you aren’t sure what to do but you are really scared. One thing you could do is to get your tolerance of sound tested by a doctor who knows how to do this. If you are concerned that you may have hyperacusis, there is a way to find out if you do. A loudness discomfort level test is inexpensive, safe, and very reliable when it is done by an experienced doctor.

here2help

 

Here2help,

Wow, thank you for taking the time to respond to all of us and our concerncs and fears. I take great consolation in that and you seem to understand hyperacusis well. I too, question TRT and it's effectiveness in so many, in terms of hyperacusis being damage...though I am saddenned and aware that not all get better, for whatever reason, but most I have undoubtedly developed some phonophobia, as I have not yet met with a informed/trt clinician and have read the horror stories, but those are their stories and I have hope to overcome this, and learn to adapt to my tinnitus. I think the ttts symptoms are what complicate things for me, and I am working at relaxation now and distraction. Today for the first time in a month, I took a walk outside. It was quiet and I feel that though it was a small step, it was a step forward.

Thanks again

 

i think it makes a lot of sense to remain skeptical and reserve judgement about things you see on TV.

 

As a worst case scenario person, I would like to make you aware of what happened to this lady at work.

ABC 2020 February 7, 2014 Segment about...

 

muffs dont work on me anymore i can wear them and here a noise and set them off.. its crazy how he can still mow his lawn with that big mower..

 

Who can mow his lawn with earmuffs? Not this couple.

 

That's crazy! I would love them to come on tt, just so I could speak to them! And of course recommend them things.

 

I already asked her, she ain't interested.....They both have mild T and severe H and because they simply adapted to living with severe H by wearing earmuffs all day, they are not eager to try out more off label drugs. Until a drug is officially approved for H or T, you will have a hard time convincing doctors and sufferers to take Keppra and Trobalt off label- let alone as a cocktail like you do lol.

PS. She does read TT once in a while, I know.

 

Well, keppra is quite safe to be honest. There' s people on here taking far more dangerous drugs and drugs which can cause tinnius. And to be honest, a drug for hyperausis won't come out for another 50 years, as hyperacuis isn't as prominent as tinnitus. Hopefully Autifony's drugs will come out and will help with hyperacusis and tinnitus. Anyway, it's odd they won't join as they would benefit from talking to other people.

 

As I see it, that is not the best strategy. What we need to do, rather, is objectively assess the quality of the information we receive before making those judgments in the first place. Surely judgments may require modification from time to time based upon new information. But if all of the information we receive is lousy, then all of the judgments based upon that information will be worthless at best ... and counterproductive or out-and-out dangerous at worst.

 

They are a very private couple.
I think if Autifony will alleviate tinnitus, then it will alleviate H as well, they go hand in hand.
No T = No H
Its not common for an H sufferer to not have a even bit of T.

 

Well, we can hope. I'm just glad mine is gone while on these drugs...Let's hope it's a permanent reduction.

 

I wonder if the occlusion effect has made their H severe? They wear muffs all day? Even in their house?

 

thats what i dont get how do they have mild t and really severe H, well is it really that severe the guy was mowing his lawn i doubt muffs would really help out that much with severe H.. ask lynn if shell mow her lawn. i didnt watch the video just skimmed thru it..how does my H react my T and worsens it but theres doesnt is there something else wrong with me other than T and H?

 

I was exaggerating. Their flat is padded, so they wear muffs when out their door or when there is construction on their street.

 

The occlusion effect should be mininal with ear muffs. It is also minimal when ear plugs are properly fitted.

 

They dont have a lawn! They live in a downtown NY condo. Watch the video lol.