I End Up Regretting Just About Every Attempt to Socialize Because of Hyperacusis

[dpdx]

I understand you! I have Tinntius (Severe) and Severe Hyperacusis for almost a year and 4 months now. After I did CVEMP and Caloric Test my t went worse, got severe h, and lost good chunk of hearing on both ears 15db on 3khz and 6khz on both ears. I still have H and loud sounds hurt my ears, but dont cause a spike.

 

[vermillion]

Hi Alue,

I see 2 main issues here :
1/ the people around you were not aware of your condition ;
2/ you didn't leave when it started to get uncomfortable.

Can't blame you. I know it all too well and it's not easy.

1/ if you don't talk about your condition, you don't give people a chance to stay quiet. The outcome is basically totally out of your control. I understand the people at your table were not the noisy ones this time, but still.

Even if you talk about it, people forget quickly and easily. Or don't even realize they are still talking too loud, because our own voice is really hard to adjust. So, imagine if they don't know : you don't stand a chance.

Many, many people won't mind. They'll do their best, they don't want to hurt you. But they need to understand the situation.

2/ people not knowing makes it really awkward to leave if you feel like you need to leave. But you can't risk your health just because you're afraid it's rude to leave. Then again, people won't mind if you leave and they understand why. And if they mind, they are not people you will want to see again anyway.

But you, if you stay, you're alone with your pain once at home. It's not fair. You have a right to leave when you need to, so use it.

You try to socialize and it's important to try again and again. But it's not about quantity. It's about not regretting it every time. And enjoying it.

I know it's only words. But I'm just like you. Many times, I choose to suffer because I'm ashamed or because I don't want to bother people or just because I don't dare to leave or to ask them to speak softly.

I try to get better at that : me first, the rest after.

I also know that no matter what the activity is, noise can happen, spikes can happen. This morning I was hiking with a friend. He knows about my severe H and I chose the area. So, pretty secure. And still, at one point we were near a road, I didn't have my earplugs in because the whole hike was freaking quiet but at that moment, a car passed by and I didn't dare to plug my ears with my fingers. We were talking and I didn't want to look ridiculous (it was not a loud car, just a regular one). How freaking stupid is that ? I've had H since forever, and severe H since 2015. I know I don't want my T or my H to spike at the end of the day. But I still can't help it sometimes.

That being said, I would have plugged my ears if it was a really loud car. That is new, that is an improvement over some months ago. I'm more and more confident and maybe soon, I'll totally "embrace" my severe H in front of other people. No more unecessary suffering. And then I'll probably fully enjoy my attempts to socialize (I won't talk about the noises you can't expect or control, they will always be here).

I wrote all this so you know you should not give up your attempts to socialize and that there is huge room for improvement.

I'm currently picking up new sports : trail running, slacklining and rock climbing. I do it alone for now, but I feel like it will make me meet new people, some of them maybe like-minded and quiet.

I can't ride my mountain bike anymore (the wind noise is too much, or just the noise of tyres on rocks), I can't fly a paraglider anymore (wind noise). But I still love outdoors and sports so I try to remain creative. I'm really often in pain. Almost every time I leave my quiet flat, actually. No matter what I do or how I do it (I have earplugs, Bose QC, Peltors and so on). But some things still give me happiness out there so I keep trying.

It's exhausting. This is what life with extreme H and T (and hearing loss) is for us : exhausting. But probably worth it anyway.

I needed to read something like this. I wish I had a friend with T & H to go hiking with our Peltor muffs and not feel like an alien. Yes T & H It's really exhausting.

 

[Juan]

I can relate to most experiences written by other forum members. For me hyperacusis is changing into hearing loss plus still hyperacusis and tinnitus. Most of it is due to my job, that involves being in a noisy environment for a good 6 hours every day.

Today, for instance, I have pain beneath the bony area behind my ear. It is like a warm feeling and also a tension, and it is super weird because it feels like something is trying to re-connect. In the previous days I have had which is probably the worst headache in my life, with bangs of pain, a lot of pressure, that warm and liquid itching sensation, burning feeling inside the ears etc... the whole hyperacusis package together.

I advise people to be on the careful side and not risk it with hyperacusis, as this is a condition that changes and usually for the worse. It is best to avoid loud noise and be careful when you test your limits regarding sound. I have tried to live quite normally myself and the result is my ears are suffering and getting worse by the day.

At the same point in this hyperacusis journey, I used to have similar audiometric reading as for instance the forum member "dpdx" and now, a couple of years later, my hearing must be in the range of a 30 dbs loss across all frequencies, both low and high frequencies and this is a matter of worry, specially the new loss of the low frequencies, that are so important for understanding speech in noise.

Well, I hope you can all find ways to socialise and keep up a decent life despite hearing problems! In my case I basically walk at parks or along the beach, and that's all. I am confined to those 2 spaces for 95% of my time. If I want to eat out I have like 2 or 3 restaurants where I can be more or less ok, sometimes I have to resort to earplugs though. I try not to set foot in a city, I seldom do it and it is always for some bureaucracy or compulsory thing that cannot be avoided. I have travelled by plane using earplugs and earmuffs, combining them or using one or the other to navigate through airports, planes etc Noise can still make damage even with hearing protection.

Keep posting how you're doing and how's your personal life and activities with hyperacusis! It is good to know that some other people are trying and sometimes getting back some spaces and activities from their old pre-hyperacusis lives!

 

[Liam_Cairns]

I've looked, although there's a lot of trails and even mountains in my area, the only hiking clubs are for people 60+.

I'm just really worried tonight, I think this may have been too much for me. They were hollering the entire time.

What is wrong with people? Why do some feel the need to be the loudest one in the group to the point where everyone is shouting? The table I was at was very quiet and soft spoken. None of them know of my hearing issues although they could see I had hearing plugs in. Aren't infants ears more susceptible to damage too? I doubt the new parents even knew that, but the mother looked a little irritated by the loud group.

I don't know much about your physical health Alue, but I do a lot of trail running and have made some friends doing it and they are all like my age, around 24, so that could be a good option, and also long-distance running is just great for overall health.

 

[Alue]

Well I should have known better. I put myself in a similar situation yesterday. Some people just cannot help themselves and start shouting when they get excited. I had earplugs in, maybe a little bit of a spike. Last one went away after a few days so here's hoping this one does too.

Guess it's the hermit life for me.

 

[Alue]

I don't know much about your physical health Alue, but I do a lot of trail running and have made some friends doing it and they are all like my age, around 24, so that could be a good option, and also long-distance running is just great for overall health.

I'm in decent shape. I used to mountain bike a lot. I hate running for some reason, but I do enjoy biking, hiking (I live near the mountains), and swimming.

 

[Juan]

Well I should have known better. I put myself in a similar situation yesterday. Some people just cannot help themselves and start shouting when they get excited. I had earplugs in, maybe a little bit of a spike. Last one went away after a few days so here's hoping this one does too.

Guess it's the hermit life for me.

People shouting cannot give you a permanent setback. The sounds that produce permanent setbacks and hearing loss are things like loud car horns, sirens, power tools, fighter planes, stuff like that, really really loud sounds that will blast through whatever hearing protection you are wearing.

 

[Alue]

Well I just had family in town and blasted my ears in attempt to get to see them / socialize. My siblings have young kids and most kid places are LOUD. Went to an indoor pool and it was a constant 80db (read my decibel meter). I was able to tolerate it for about an hour with foam earplugs, but after that I had to leave. Don't know if I'll end up regretting it, but I do have a bit of a spike. Today wasn't much better, I had to exclude myself from some situations because they were too noisy. I sat outside to eat lunch where it was nice and quiet instead of sitting with everyone at the tables inside where there were loud crowds and music playing.

I just feel the need to vent somewhere. I'm so tired of living with hyperacusis. I think this spike will fade like most have in the past, but it's still not worth it even if it means suffering for a few days to a week before it goes back down to baseline.

 

[Vincent R]

I just don't know how to live my life with not being able to tolerate noisy places, even with earplugs. It seems like my options are either to live life as a hermit, or risk making my hearing worse by getting out and meeting people. Just about any social activity can get uncomfortably loud. The social activities I used to do before tinnitus/hyperacusis are mostly out of the question.

I know I've made similar threads before, maybe I just need to vent. Tonight I went to a meetup group that does bored games, table top games, etc. You might think that would be a normal noise level right? Well the group I was with was all quiet and soft spoken, but the table right next to us was extremely loud. They were hollering the entire time and sometimes would get so excited that a few of them would literally shout at the top of their lungs.

Well I just sat there with earplugs in and endured it for a good three hours because I didn't want to be rude and leave right in the middle of a game. I had a hard time hearing the people I was with and they had a hard time hearing me. Now I'm just back to the waiting game to see how my ears react. Tinnitus seems louder right now, but it's been a long day. Even if it only gives me a short temporary spike it was uncomfortable to say the least.

One of the people at my table had their infant child with them who was trying to sleep, the kid couldn't have been more than a couple months old. Am I the asshole for thinking these people are just inconsiderate?

I just don't know what to do with my life anymore. I've managed to keep working and better my career even with loud tinnitus and hyperacusis, but that's all my life consists of now. I have no social life left.

I really think I screwed up this time. I've been in similar situations before and gotten away with only a temporary spike (like a noisy restaurant I went to in January), but there I wore NC headphones over earplugs and I still got a spike. I have enough sounds that come and go in my head that it's hard to tell what's new and what's just normal fluctuations. I started off three plus years ago with one single loud tone.

I don't know if this will help, but here's how I look at it ...

Existing as a human being is a temporary thing. Everyone who has ever been born eventually perished. Some of them had meaningful lives, others suffered without accomplish anything that seemed worthwhile according to the standards we apply and understand.

Perhaps there is a higher reality that compensates for the bleach pointlessness you experience. I am of that belief myself and not due to affiliation to any religion.

The bottom line is this: It's fine for you to pass time in the way that inflicts the least amount of suffering. If socializing doesn't work, then you just have to find something else. I used to be fairly social myself, but these days, I prefer to go to the gym, do meditation training (Qi Gong works even if you have T, though it requires a lot of focus), or temporarily changing surroundings.

You feel lonely. I do to. But there is no end to the amount of people who have lived through cruel fates. I can still catch a break every now and then, and death looms at the end of this road as a final release.

As for the noise exposure, wearing foam ear plugs doesn't guarantee anything, but it goes a long way. My guess is that your spike will subside.

 

[Juan]

Well I just had family in town and blasted my ears in attempt to get to see them / socialize. My siblings have young kids and most kid places are LOUD. Went to an indoor pool and it was a constant 80db (read my decibel meter). I was able to tolerate it for about an hour with foam earplugs, but after that I had to leave. Don't know if I'll end up regretting it, but I do have a bit of a spike. Today wasn't much better, I had to exclude myself from some situations because they were too noisy. I sat outside to eat lunch where it was nice and quiet instead of sitting with everyone at the tables inside where there were loud crowds and music playing.

I just feel the need to vent somewhere. I'm so tired of living with hyperacusis. I think this spike will fade like most have in the past, but it's still not worth it even if it means suffering for a few days to a week before it goes back down to baseline.

Yeah, I know what you mean. The worst is the uncertainty of what will happen in a week or so, whether things go back to baseline or not. It's hard to tell whether a spike is going to be really nasty and lasting or not. You have to analyse well the situation in which it occurred. If you were at the swimming pool with earplugs, my opinion is you are over-worrying. It shall pass and be ok.

I have had very severe hyperacusis over a long long time, and it evolved into hearing loss and tinnitus. It's hard to cope these days and I am hoping for a pretty dark future in job terms and financial terms, even though I did save a lot preparing for this. No matter how much one prepares for THE DAY, when it finally comes. My body was sending warning signs for a long time, and I tried to protect myself as best as possible, so I did all that was in my hands, but setbacks do happen and loud sound is unexpected, so I guess this is just the natural course of things for someone with really bad hyperacusis.

 

[Bndsmheowqhe]

Interacting with other human beings is vastly overrated.

 

[TomBradyGOAT]

Interacting with other human beings is vastly overrated.

I see this a lot on this website. If interacting with people stinks so much why go onto a forum to interact with people?

 

[Bndsmheowqhe]

I see this a lot on this website. If interacting with people stinks so much why go onto a forum to interact with people?

Thank you for proving my point.

 

[Alue]

Yeah, I know what you mean. The worst is the uncertainty of what will happen in a week or so, whether things go back to baseline or not. It's hard to tell whether a spike is going to be really nasty and lasting or not. You have to analyse well the situation in which it occurred. If you were at the swimming pool with earplugs, my opinion is you are over-worrying. It shall pass and be ok.

I have had very severe hyperacusis over a long long time, and it evolved into hearing loss and tinnitus. It's hard to cope these days and I am hoping for a pretty dark future in job terms and financial terms, even though I did save a lot preparing for this. No matter how much one prepares for THE DAY, when it finally comes. My body was sending warning signs for a long time, and I tried to protect myself as best as possible, so I did all that was in my hands, but setbacks do happen and loud sound is unexpected, so I guess this is just the natural course of things for someone with really bad hyperacusis.

You say *had* hyperacusis. Do you still have it or did it get better.


Sigh, tomorrow and for the rest of the week I will be working in a lab that is very noisy. It is the loudest *work* place I've encountered with my new job. Last year I think I measured it at mid 70's db (constant), but it has some high frequency sounds that get annoying. I'll be wearing plugs, but I know it adds up throughout the day. It's awkward wearing earmuffs at a customer's site, but I may do that as well this time.

 

[Lane]

It's awkward wearing earmuffs at a customer's site, but I may do that as well this time.

@Alue -- If you're asked about it, just tell them you can concentrate (and work) better with the ear muffs on. Perhaps a way of keeping it simple. Best...

 

[Juan]

You say *had* hyperacusis. Do you still have it or did it get better.


Sigh, tomorrow and for the rest of the week I will be working in a lab that is very noisy. It is the loudest *work* place I've encountered with my new job. Last year I think I measured it at mid 70's db (constant), but it has some high frequency sounds that get annoying. I'll be wearing plugs, but I know it adds up throughout the day. It's awkward wearing earmuffs at a customer's site, but I may do that as well this time.

I still have some form of hyperacusis. I had hyperacusis so extreme I couldnt be outside home for almost one year. I couldnt be near sound at all, slamming doors, traffic, etc would give me pain for weeks. Then I gradually ventured out and starting doing more things, simple stuff like going for a walk etc with a lot of caution. This came at a high price: over time I started to lose hearing and get worse tinnitus. Now I am worried about this combination of noise sensitivity (I would still call it hyperacusis, as sounds above a certain level do kill my ears), hearing loss and tinnitus. Its pretty bad.

My workplace is louder than yours and I need to hear what is said, so no ear protection there. I was working somewhere quieter for 6 years, tried to do something more demanding (and better paid) and I am regretting it. I do what I can with this horrible condition.

 

[Earing]

My elderly father is a very good bridge player. He was telling me there are rules in bridge that you cannot snap the cards or make them go prrrrrrrrrrt when shuffling and dealing.

 

[Alue]

I still have some form of hyperacusis. I had hyperacusis so extreme I couldnt be outside home for almost one year. I couldnt be near sound at all, slamming doors, traffic, etc would give me pain for weeks. Then I gradually ventured out and starting doing more things, simple stuff like going for a walk etc with a lot of caution. This came at a high price: over time I started to lose hearing and get worse tinnitus. Now I am worried about this combination of noise sensitivity (I would still call it hyperacusis, as sounds above a certain level do kill my ears), hearing loss and tinnitus. Its pretty bad.

My workplace is louder than yours and I need to hear what is said, so no ear protection there. I was working somewhere quieter for 6 years, tried to do something more demanding (and better paid) and I am regretting it. I do what I can with this horrible condition.

It seems like (at least in your case) hyperacusis is a warning sign that you ears cannot take the same noise level that other people can. You lost hearing from normal noises?

What do you do for work? What's the average noise level there?

 

[Labyrinthine]

Your situation sounds really familiar. I'm in the exact same position as you. I've been homebound for about a year now due to pain hyperacusis. I can be outside for about 2-3 hours, though that really depends on the noise level (and always plugged, no exceptions).

I've been dying to find anything that might help the hyperacusis. As I recall, the brai3n clinic and the Silverstein surgery were alread mentioned elsewhere on the forum, but I do really advise you to consider that. I have recently contacted the brai3n clinic in belgium (Gent) and they told me about their procedure (it's called tympanic patching) and that there is a 40% chance on a clinical relevant effect (not much, but it's something).

The oval and round window reinforcement surgery by Dr. Silverstein had some great results (I'm really considering this). I think he resides in Florida, USA. Otherwise, you could go for Dr. Banerjee in the UK for the exact same procedure. I'm currently in a facebook group that consists of people who underwent the oval and round window reinforcement (either in the UK, or USA) and I've read some great reviews. In case you're interested, you could look into it.

 

[Lane]

My workplace is louder than yours and I need to hear what is said, so no ear protection there.

I use Earpeace (brandname) ear plugs [Here's a LINK]. I find them quite easy to insert, but a little more difficult to remove (sometimes). They are quite unobtrusive and comfortable, and I can easily carry on a conversation with them in. They come in a carrying tube you can attach to your key chain. There's also three different filters to adjust the amount of sound blocked.

The website has two different sizes; standard and petite. These are the only non-foam ones I've tried, so there may be others that are comparable or even better quality. But I'm quite happy with these as they give me just about the right amount of protection I feel I need. WAY better than foam plugs, or wearing obtrusive ear muffs.

 

[TnH]

I use Earpeace (brandname) ear plugs [Here's a LINK]. I find them quite easy to insert, but a little more difficult to remove (sometimes). They are quite unobtrusive and comfortable, and I can easily carry on a conversation with them in. They come in a carrying tube you can attach to your key chain. There's also three different filters to adjust the amount of sound blocked.

The website has two different sizes; standard and petite. These are the only non-foam ones I've tried, so there may be others that are comparable or even better quality. But I'm quite happy with these as they give me just about the right amount of protection I feel I need. WAY better than foam plugs, or wearing obtrusive ear muffs.

I have huge occlusion effect holding conversation with earplugs in. Ringing also gets louder, I don't know the OP's situation but, I know this option wasn't helpful for me in the past

 

[Lane]

I have huge occlusion effect holding conversation with earplugs in. Ringing also gets louder,

That's the case with me as well with foam earplugs. But the musician's earplugs I linked to are way different for me than the foam earplugs. Don't know if that's the case for everybody however.

 

[TheDanishGirl]

That's the case with me as well with foam earplugs. But the musician's earplugs I linked to are way different for me than the foam earplugs. Don't know if that's the case for everybody however.

As a hyperacusis sufferer, I have trouble with both musician ear plugs and foam ear plugs. I can't tolerate my own voice, with them in.....at least not for any longer then a very short while. Ear muffs work well but then I can't hear people.....the struggle with social events is REAL.

 

[JohnAdams]

I have huge occlusion effect holding conversation with earplugs in.

Same here. Can't sing any more.

 

[Daniel Lion]

As a hyperacusis sufferer, I have trouble with both musician ear plugs and foam ear plugs. I can't tolerate my own voice, with them in.....at least not for any longer then a very short while. Ear muffs work well but then I can't hear people.....the struggle with social events is REAL.

Same for me. Had a 2 day mega valium binge. That's done for a month to six weeks. Absolutely got rid of the occlusion effect and nearly my heart beat. Back to fitness and trying to wake up my brain.

 

[Lane]

trying to wake up my brain.

@Daniel Lion -- You may want to check out Magnesium Threonate (see brief description below from a nootropic website). I'm always looking for ways to improve my brain function, and have tried this product. It did wake up my brain, but because of my ultra sensitive system, I found it to be too stimulating. However, I do believe it would likely work well for most people.

One thing that does work for me and gently helps my brain function is Huperzine A, which is a natural product that inhibits the breakdown of the enzyme that normally reduces acetylcholine levels in the body. I normally notice an improvement in brain function within 10-15 min.

What is Magtein Magnesium L Threonate?
Magnesium is an essential cofactor for more than 300 enzymes involved in biosynthesis processes and energy metabolism. It plays an important role in many of the brain's functions. Only recently, a unique compound called Magtein was discovered by a group of scientists from MIT, including a Nobel Prize laureate.

Magnesium has been implicated in many of the brain functions. However, most magnesium compounds have low brain bioavailability and severe gastrointestinal side effects. Magtein is the only magnesium compound that has been shown to effectively raise the brain's magnesium levels, which leads to enhanced learning abilities, improved working memory, and better short- and long-term memory in both young and aged animals.

Magtein currently has several published studies in highly regarded journals reporting its mechanism of action and benefits to cognitive function.

 

[Alue]

So, just today someone twisted and popped a whole roll of large packing air packets right next to me. My head was turned to the side and he was right next to me. It wasn't just one pow, it was 10 or 20 in quick succession. Luckily I had good earplugs in as I was already in a noisy area, but I'm still not sure how worried I should be. It sounded like a string of firecrackers going off right next to me. I asked a person that was around at the same time later if it was loud for him (he doesn't have T/H, but knows about my hearing sensitivity), and he said 'it was loud, he popped them pretty good'. I've been working in a loud area all week this week while having to occasionally communicate with plugs in, and this was just icing on the cake. I actually had earplugs and headphones/earmuffs for most of the day, but took them off to talk with someone.

Even after 3 years I don't know what is too loud for me and what isn't. If things never got worse or only resulted in a temporary spike I wouldn't worry so much about these events, but my tinnitus is objectively worse than when it started. Most loud events result in nothing or only a temporary spike, but that's not the case 100% of the time with me.

I just don't know what to do anymore... I don't want to live like this, in fear of every loud noise.

Apologies for just venting again. I have been away on travel and it's been a very stressful week.

 

[Sevv]

I needed to read something like this. I wish I had a friend with T & H to go hiking with our Peltor muffs and not feel like an alien. Yes T & H It's really exhausting.

Where are you from?

 

[TnH]

As a hyperacusis sufferer, I have trouble with both musician ear plugs and foam ear plugs. I can't tolerate my own voice, with them in.....at least not for any longer then a very short while. Ear muffs work well but then I can't hear people.....the struggle with social events is REAL.

I have hyperacusis but I barely struggle with social events. That's not because the noise sensitivity has gone away ... it's because I don't go to them.

 

[TheDanishGirl]

I have hyperacusis but I barely struggle with social events. That's not because the noise sensitivity has gone away ... it's because I don't go to them.

Well... Same here, I don't go to them anymore either... I see that as a struggle, as I am social person.