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anniekin

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Posts: 105
Reply with quote  #1 
What is everyone doing about holidays? It is such a challenge. I really would love to hear from anyone, even if all you do is stay home and feel sorry for yourself!

I have a big noisy bunch of in-laws and a big noisy bunch of friends all unwilling or incapable of being quiet, nor do I want to ask that of them since they are loud because they are having fun together. I don't want to deal with the sound assault of either of those options. For Thanksgiving one thing I have done is host a very small potluck with a couple of people I would not typically see on Thanksgiving. We bring leftovers to eat and relax together, do puzzles, have a fire, etc. I invite only people who are familiar with my problem with noise and can keep things at low volume. I can't always find people to attend but I hope this will work again this year. I don't know what I will do the actual day of Thanksgiving though. 

I don't know what I am doing for Xmas. I have rarely felt like what I was doing for Xmas was quite meeting my needs, even before my ears got injured and hyperacusis became such a huge limiting factor. I have no family anywhere near where I live. I have only many loud in-laws. Most of my friends go hang out with their nearby families, or go out of town, and even if I was invited to their get togethers I wouldn't be able to tolerate the noise levels. I don't like to travel during holiday times, and being with my far away elderly parents who are seriously hearing impaired is really hard on me because I have to shout at the top of my lungs of them to hear me when we try to converse.

I am at a loss about what to do to keep from feeling bummed out. People I know who are alone do for the holidays do things are not an option for me either-- I can't go volunteer at a large noisy kitchen handing out meals to the homeless, for example. Even going to a movie is out. The wet winter climate where I live makes doing an outdoor adventure unlikely. 

I have tried telling myself to pretend it is just another day of the week, with no success, I am just not able to ignore my real feelings of being sad to be shut out of what "everyone else" is doing. Just can't do it. I know some people can, but not me.

I would love to hear any brainstorm solutions anyone has had about how to deal with this time of year.

Thanks!!
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bananacupcakes

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Reply with quote  #2 
I have no plans. I don't feel like I have any reason to celebrate.

No wait, that sounds horrible. I do have blessings, and I am grateful for them, but I'm still very bitter about the pain from H that I don't want to celebrate anything. But I'll probably try to meet up with people one at a time or in pairs for dinner or coffee. I'll avoid all large gatherings, though.
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anniekin

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Reply with quote  #3 

Update on the holidays:
I'm feeling much better about this.
Half my in-laws went out of town, so I was able to attend a Thanksgiving meal with only 6 people, it was in a house with carpeting etc that absorbs sound, and after eating we just did quiet things like jigsaw puzzles and quiet conversation in small groups. I only had to ask people to pipe down a couple times, which is pretty good for this group, and I am encouraged that they are more able to keep my condition in mind. I was able to be there for 4 hours which is a very long time.

I also now have a couple other December events with people who know about my loudness sensitivity and will attempt to be quiet to the best of their ability, so I feel much more relaxed about the whole thing. A friend is having a small bday party and is willing to eat at home and have take-out food so I don't have to try to tolerate a restaurant.

I will go to 2 acoustic music shows this month, and wear my Bose earbuds to keep the volume tolerable, both the music and the people (applause, conversation before and after the show). These events are in familiar small venues so I know what I am getting into.

What have you come up with? How are you doing?

I do completely understand your feeling that nothing is going to make you happy. I do know that I have not felt that totally carefree feeling of happiness since I got H, but I have had some peace and some good laughs. It is a process of grief and adaptation that takes a fair amount of time, and you have to do a lot of educating of people around you. My first year of dealing with this, the social difficulties of how to get people to understand even a little bit of what I was experiencing, and figuring out who was going to be willing tor able to bother to try to be a little quieter for me and who wasn't, what I was comfortable asking of people and what I wasn't. That was actually a very big part of it for me. The last couple of years since that time have been easier only because I got that initial stage more or less sorted out with people close to me. For me the isolation of this is the worst. 

Treatment wise I just have been doing TRT all this time, and basically waiting to see if I got any better, and I am slightly better but nowhere near where I want to be and probably nowhere near where my audiologist might wish I would be.

The whole thing is an unthinkable struggle, there is NO doubt about that, but I can still have some sort of peace in my life and I hope you can get to that too.

xoxo
A


 



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EDogg

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Posts: 174
Reply with quote  #4 
Hi Anniekin,

Really encouraging to read your note. So great that your friends are understanding and accommodating! That’s one of my biggest fears.. being out in the world where I have no control over sound exposure. And some people talk so loudly and blare music. Oh how I wish I could go back in time where I wouldn’t think twice about it.

What earplugs are you using specifically for concerts? Are they the Bose noise cancelling ones? I used to go to lots of local acoustic shows here in PDX but haven’t since the H hit me. I truly miss it. I hope you are able to enjoy your time and enjoy the music as something pleasant to hear,

My holidays have been in complete isolation. I cannot tolerate all the talking, kids crying and yelling, etc. it’s a very hard time. You are right how isolating this illness is.

How long have you been doing TRT? I just started about a month ago. The devices, even at the lowest sound setting, are too loud, uncomfortable and cause my ears to feel full, ring loudly for a couple days and get ear pain. I’m discussing with audiologist about what we can do to possibly tweak the sound spectrum and make it more pleasant. Otherwise.. I just can’t wear them. Apparently they are set to the original Jastreboff protocol spectrum. but that obviously isn’t right for me. For enrichment, I’m Using nature sounds at night while I sleep, and trying to tolerate ventilation noise and other ambient sound at work without earplugs as much as possible. Someone once told me that healing from hyperacusis is measured in months and years, not days. That continually provides hope!

Take care,
E
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anniekin

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Posts: 105
Reply with quote  #5 
Hello EDogg,

I used Bose Noise Cancelling Earbuds. The noise cancelling headphones work better but they are more conspicuous and uncomfortable, so for everything but air travel I use the earbuds. They cost the same as the headphones. I have tried every kind of earplug there is, including custom musician's earplugs, and for my purposes the Bose earbuds are the best and most comfortable by far. I am still looking for a wireless version of active noise cancelling earbuds and have tried a few products, but none have worked for me, I think they may work well for people with no hearing damage, but not us.

I consider myself lucky to have friends and some relatives who are willing to talk more quietly. I think it is essential that they understand that there is no other option, that if there was some sort of hearing aid or device that I could wear to "turn them down" I would be using it so that no one would have to change what they are doing. I think some people feel like it's your problem, why should I change what I am doing? but when they fully get it that what is going on with you is a disability and there isn't much you can do, their attitude changes.

If they are argumentative and hard to convince, you can always say, if I had to use a wheelchair, would you make me crawl up your front steps? 

Having said that, there are always people in the world who don't want to be inconvenienced or affected by anyone with a disability or disease who can't just easily do everything they do. To those people, I think to myself, just wait til something happens to you and THEN you will finally develop some compassion and empathy. Weird conditions scare people and they avoid you for fear of doing something wrong or you not being able to do anything fun with them anymore. And people don't like seeing evidence right in front of them that bad stuff happens to people. And they may think someone else is spending time with you or giving you support. You may have to admit you have nobody right now and ask someone over or whatever.

I started TRT 5 months after my injury and have been using them since, that would be 2.5 years ago. I've always used them at the lowest volume I could hear and did not have any negative side effects from using them. On the other hand I am not at all convinced they are doing anything. My audiologist never asked me to raise the volume, she said always to keep it at a comfortable level. This sounds different from how other audiologists do the TRT protocol. I try to listen to music at home at a slightly challenging level as another way to challenge any sound phobia I might have. I find I am willing to listen to music at a higher volume than any other type of sound.At concerts the sound of the audience talking and applauding is harder on my ears than the music. 

I try to listen to radio TV or music as much as possible at home to keep my ears/brain in a recovery process. I have had some improvement, for example, when I would sit in my own house, which is not echoey, having a conversation with one person, at first I would have to ask them to speak in a "library voice" for me to be comfortable. Many people just could not do this for any length of time or could never remember and forced me to remind them over and over, which I hated. Fortunately I have improved to the point where I can now sit in a non echoey room and talk with most people speaking at their normal volume and I'm OK.

It gets dicey if they get excited and louder or have a big laugh, but for now I try to just tolerate it and think of it as more sound therapy. I still have trouble if I am talking to one group of people and another group in the background is talking more loudly, I can't hear the people near me. So it seems like people only think they have to talk more quietly when they are right in front of me, but that awareness goes away when they are on the other side of the room. There is no end to the frustration of ways even well-meaning people don't get it and have to be reminded over and over and over. I make sure to ask and get someone's permission to remind them or ask them to be quieter, then I can feel more OK about it if I have to remind them a lot. It does affect your relationships because all the things you used to do like go to movies and restaurants and concerts etc are off the menu. You have to be creative to think of quiet things to do that are fun.

Have you used Bose and do you know if you would be able to handle hearing music or being around a group event like a holiday thing?
Do you have anyone in your life who is kind enough to modify their volume to accommodate you, or someone who would understand that you are isolated and lonely and visit you, at least? What is your work? It must be something fairly quiet if you can still work.

Everyone is different with this problem. You are very early on in the TRT process, and hopefully you will be able to find a way to tolerate the therapy. It seems to be the only thing there is to do, therapy-wise, so that's why I chose to do it. At this point I don't know if it was TRT or just the passage of time that has caused my small improvement but if I know if I had not done TRT I would probably be thinking I should have. 

Anniekin





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EDogg

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Posts: 174
Reply with quote  #6 
Thanks for the reply and details on your Bose earplugs. That sounds like something I should look into.

To answer your questions, I do have several sympathetic people in my life who understand (or are trying to), with whom I can share my experience with. I am looking into CBT but already have so much on the plate right now.

I developed hyperacusis acutely immediately following mold remediation at my home. Never had any hearing issues previously. Loved listening to music, playing guitar, mandolin, banjo, etc. Audiologist says my pattern of injury is consistent with what she sees with patients who have environmental chemical exposure or other toxin exposure. I personally think it was biotoxic exposure to mold or bacterial/algae. We unknowingly lived in a home with bad water damage for a considerable period of time. It’s been about 5 months now since it began and started treatment about a month ago. I also am getting care from a naturopath (for an outside the box perspective). My wife also has severe hyperacusis (she developed more gradually onset years ago) in addition to severe muscle weakness and neurological problems. She is bed ridden, completed disabled (SSDI) and I care for her. I think we were exposed to the same stuff, just in different ways. We’ve lost our home and pretty much all our possessions this year. it’s been brutal. Currently, we are in a temporary rental until we can find a safe place to live. Very hard in PDX these days. My wife has been so supportive, though, as she is/has gone through very similar struggles. Her hyperacusis has slowly improved with time and without specific treatment.

So, in regard to work, I have no choice but to push through the pain and discomfort and earn income to support us. I work in hospital, which is noisy, and has been a considerable struggle. I have to say, though, that I have had some minor improvements at work. My coworkers are unaware of my problems and I am reticent to share much, as word travels quickly and could (although it shouldn’t) affect my future employment opportunities. I use earplugs in unpredictable areas, like garages, or coffee stand. Try to keep them off as much as I can in my office. I do wear them when interacting with colleagues, as some like to talk loudly or blare music.

I am stubborn, by nature, and refuse to let this hyperacusis ruin my life. Hence, why I sought audiologist care, am trying TRT, am seeking care and ideas from multiple medical perspectives. I want my life back.
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anniekin

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Posts: 105
Reply with quote  #7 
That is a great move on your part to put your stubbornness to good use! I'm glad you have support.

Coincidence--I am also a mando and guitar and banjo player. Mostly banjo, mostly old time music. I have pretty much lost my former music life in the process of getting H., and that has been a real blow. My fellow musicians have been among the least supportive  and reliable people in my life, I'm sorry to say. Have you been able to continue to play or doing anything musical at all? I would go nuts if I couldn't at least listen to music, it is my main pleasure and escape in my life.

I do know how noisy hospitals are, that is tough. It is a real drag that you feel you have to keep your condition a secret at work. It is hard either way, though, in that when people DO know, they still don't necessarily do anything to help you.

To have your wife ill also is hard. My husband got diagnosed with Parkinson's a year before I had my ear injury. Right at retirement age. Our retirement life plans have been really trashed. When you are both facing illness, you understand each other's pains and moods and frustrations, on the other hand, you are always surrounded by troubles. His hearing is pretty normal and he has been able to adapt most of his noisier things to my tolerances and we support each other in our ailments. It is great that your wife's H did get better on her own, and it is pretty amazing that you happen to be married to someone who has experienced this rare condition that you now need support around. 

AS far as the Bose products go, the only downside is it is a real drag that they are so expensive, but I feel I would not be able to live a life in public without using them at certain times. I know some people on this forum feel that using those and other earplugs is the opposite of what you need to do to heal, and therefore you should NEVER use them. In theory that is true, but I believe in a more nuanced approach. I think it depends on the seriousness or level of your H, if yours is mild then don't use any hearing protection except in situations that would be dangerous to anyone's hearing. In my case mine is severe so I am going to give myself a break and use them when I need to. Any other approach disregards the importance of quality of life and having anything resembling normal contact with people, which lowers stress levels, and in that way promotes healing. I just won't take as iron clad a stand on that issue. When you are sick you need things that are good of the soul. I do challenge myself as much as I can to be in regular noise and tolerate it, but I have a line I won't push across. 

You are in Portland OR? The housing market IS horrible here, I'm sorry you have to deal with that on top of everything else. Fingers crossed that you can find a good place, and a healthy place.

One thing that has helped me in keeping my nervous system in a mellower condition overall is that I take a very relaxing easy yoga class in a small studio in SW. It is a quiet environment almost all the time there, and I find it is helpful when I need to turn down my own body and brain's reactiveness. 

Keep me informed of your progress. It seems like we are facing some similar challenges and could learn more from each other as we go along. In the past I have made efforts to find a support group for H people in our area. Nothing is going on. Just a meeting for people with tinnitus that no H people seem to go to. Of course they don't, it's a big group, we avoid those! But I think it might be valuable to meet if we can find a few of us.

Anniekin







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EDogg

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Posts: 174
Reply with quote  #8 
Wow.. we do have much in common! How wonderful that you are into the old timey music. I listened and played a lot of bluegrass and old timey music with friends until this hit. I can’t stand to listen to any music now.. it really is heart wrenching. Do you play claw hammer style? I was just learning the bum diddy right hand when H hit. I have since traded both my mandolins, as they are just too much for my auditory system.. and will buy myself a brand new Martin HD28 acoustic. I can’t play much.. but just to hold it and lightly tickle the strings will give me a lot of joy for now. Maybe I can integrate it into my treatment protocol.

Glad to hear you have a supportive partner as well, yet sorry to hear how your illnesses have altered your life’s trajectory. You are definitely not alone in that. I think we have to maybe create new “normals”for ourselves and accept our situations for what they are.. to move forward. Easier said than done! Hah.

Glad you are getting benefit from Yoga. I have been looking into craniosacral tx but haven’t yet committed to trying it for this. Seems like it couldn’t hurt to try.

Yes, let’s stay in touch. Surely there can’t be too many more of us hyperacusics in Portland besides you, me and my wife.. statistically speaking?
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anniekin

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Posts: 105
Reply with quote  #9 
Who knows, we may have already met at some music jam!

I have not played my mando a lot because the sound is pretty piercing, anything played with a pick is too loud, I find. The banjo is actually quieter, I have an open back banjo with a wood tone rim so it can be played pretty quietly. I play clawhammer style. My problem now is mostly that I don't feel as motivated. I always used to be a very motivated practicer. Now I haven't wanted to practice or learn new tunes very much since I am not playing with other people, and this kind of music is meant to be played with other people. Same with the singing part of things, I love harmony singing but now it gets too loud just hearing your own voice, and where I used to be able to hear my own voice AND someone else's at the same time in some kind of balance, I now hear my own voice too loudly in my own head and can't tell if I am blending with other singers volume wise.

I used to have a very quick ear picking up harmonies and chords but I am slower now, it's like my brain takes longer to process and interpret things that were previously automatic. That is frustrating to me. I understand your feeling that listening to music is too painful. Both physically and emotionally. I have felt like the few opportunities I have had to join other musicians are a mixed bag, it all feels high risk emotionally, like it can be great, but it can also be very hard to experience not just the overall volume, but also all the frustration of my ears not working they way they used to. I also notice that it is mostly only very skilled musicians who can play quietly or see any value in that, and apparently the people I know are not at that level, nor do they want to change a single thing about what they do. Music is tricky socially sometimes, even without a complication like a major hearing problem in the mix. Players in these genres like to let loose and drink and play loud etc. And they don't want anything inhibiting them. I haven't been able to get many of them to get together and play more quietly with me. They don't even send an email saying "miss you, how are you doing" and I feel kind of abandoned, frankly.

So losing music has been painful on the level of the music experience itself, and also socially feeling isolated and not supported. My non-music friends have been much nicer, on the whole and for that I am very grateful. 

Tell me more about what you used to do musically. I hate to see anyone stop playing, but I get that it is really hard to establish a new normal with music. It's good you got an instrument that you can play, even just a little, and yes, I would totally use it for sound therapy, why not if you can tolerate it, and it doesn't' cause any kind of setback, that's all that matters. I think it is really important to keep doing as much of what you used to do as you can, just to feel any sense of normalcy. 

If you don't mind, what is your first name?--now I am really curious if we may have met already. 
Annie

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EDogg

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Posts: 174
Reply with quote  #10 
Hi Annie,

My name is Eric. We may have crossed paths as some point, whether in the music scene or just having lived in this area so long.

Love openback banjos. Love the tone and rhythmic quality of it. I’ll bet yours sounds great. I was nearly at the point of purchasing an open back when the H hit me.. was looking at one of those Ramsey Chanterelles or Pisgahs. I still might pursue it if I make some improvements.

I really feel for you and your sense of loss from the music scene and community. It sounds like it was an important part of you life and really difficult to approach with this condition. Although my musical sphere was relatively small, I have had a hard time sharing my illness with them. It’s like a nightmare for someone who lives and breathes music, so I don’t want to have to discuss it, or explain it, or rationalize it.. I don’t want to be judged as crazy or weird. For me it goes both ways — I’ve been a pretty poor musical companion and haven’t fairly explained why I never show up anymore. I finally decided to confide with one of my best friends/colleague and musical buddy this past week. It felt good, actually, and I think they seemed to (or wanted to ) understand and sympathize. I’d be out there playing in a heart beat if I could tolerate it.. in fact, more than I ever had before after going through this! Like I said before, I want my life back and am fighting with all my stubbornness to get it. I have been properly evaluated, am undergoing treatment, and day by day am learning more about myself and my condition. The slow progress and healing process is really tough for me to accept, as I just want to better now! Get on with it. [wink]

You asked about my music hobby. Played guitar since I was 17. Picked up mandolin in mid 2000s after going to a Chris Thile concert.. opened a whole new world for me. Played probably every once in a while with friends. Didn’t go out into the open jam session scene, I took mandolin lessons for about 6 months or so from a local musician, practiced a couple times with the mandolin orchestra here (wasn’t my thing), then took lessons online with Mike Marshall for about a year. Really got into paying classical and melodic style. I first recognized my hyperacusis as I was playing a Bob Dylan tune on one of my mandos.. “she belongs to me” and my ears hurt and felt like full of fluid and garbled.. and it scared the crap out of me.

Despite all these struggles and sacrifices I’ve had, I want to stay positive and want to work hard at gaining that life back. I want to be a positive story, a success story.. one of those who gets better and never (or maybe rarely) returns to forums because they have their life back. Certainly no offense to anyone on here.. but I’m sure most of you understand that sentiment!
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anniekin

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Posts: 105
Reply with quote  #11 
Hi,
Just the fact that we are talking about music and not doctors and treatments makes me feel better. I like knowing that someone else out there in my town is dealing with the same trials I am.
I will hope for the best possible swift recovery for you. Your wife too. 
I really think you should get some Bose earbuds. Nobody at work or anywhere else will know anything is going on because it just looks like you are listening to tunes like everyone else. And it will make your noisy moments in life much more bearable. And you may be able to even go to a small concert and get some inspiration. Nobody should suffer any more than they absolutely have to!
Annie
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janeygirl

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Posts: 142
Reply with quote  #12 
Having survived Hyperacusis for many years, I totally identify with what you all have posted. All I can say is if you can find a way to empower yourself with doing TRT or doing something that will improve the condition, that will give you hope. Isolation is not good entirely and avoiding sounds entirely is not good. At the very least, if I had to do it over again and believe me I suffered for years, I would have incorporated some light non lyrical music in my life and enriched my environment. Wearing earplugs all the time and spending time avoiding noise won't work either. I did it all, take it from me. There is a fine balance between treating yourself like kid gloves and making sure you take care of yourself.

If it's too soon to be around loud environments, then please don't feel you have to. This is like grief, others may not understand and you have to treat yourself tenderly knowing what your needs are. The world is busier than ever now and some down-time is very nice. Maybe calling your relatives and friends on the phone or sending them a text of greetings, make sure you let them know your care. I haven't found the right answer to "how are you doing yet?" I am way too honest and then sometimes you can't share that with some people, but some people will understand.

Hold this community close to your hearts and know you are all very much loved and Happy Holidays to you from a survivor.



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Jane Parks-McKay
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rodmccain

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Posts: 225
Reply with quote  #13 
Hello everyone,

My oldest daughter and her husband will be coming as usual for Christmas Eve Dinner.  My youngest son and his longtime girlfriend will be also. 

They are pretty good about keeping it down.  My husband is going to ask them to please turn their cell phones OFF.   My son in law sometimes wants to turn the Utube on the cell, which is not going to happen this year.  

My problem is everything actually sounds too loud, even voices.  I get worsened T.  my ears also feel a bit sore and tired afterwards.  I guess the amplification of sound, and the disturbing T signals are what gets me.  

For Thanksgiving we had my daughter and husband. I stuffed cotton balls in my ears, and  they kept their voices down.  We also ate on paper plates.  I may try to set a really pretty china table like I used to this year though....we'll see. 

Best to all,
Kathy M 
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anniekin

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Posts: 105
Reply with quote  #14 
Hello Kathy,
Good luck with whatever you end up doing. I have a lot of trouble with voices. Using Bose earbuds works very well for me, if you can stand having something kind of in your ear. They don't go into your ear canal, they just sit inside the folds of your outer ear, are very comfortable aside from having a cord that you have to put in a pocket or whatever--and they dampen sound much more than regular earplugs, particularly crashing of dishes etc. I use them for loud stores, concert audiences, applause, music, all things that can be very loud for me. You can still hear most conversations with them on.

Something for Santa to bring you if you don't have a set yet!!
Annie
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rodmccain

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Posts: 225
Reply with quote  #15 
Thank you Annie!  I will try them!

Merry Christmas,
K M
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