Constant Fight to Prevent Worsening of Tinnitus and Hyperacusis Is Worthless

Hi everyone,

Sometimes I wonder what is more debilitating, tinnitus/hyperacusis itself or the constant everyday fight to prevent worsening of that cruel condition(s), while trying to live normal life - having job, family, kids... spending weekends, going vacation. I am tired by the constant "awareness mode" this condition is setting me into every time I am going out. It is sucking out all the pleasure from not too many good moments in my life.

This year I went through fire alarms, car alarms, police sirens, numerous loud screeching car brakes I am sensitive to, loud motorbikes. Sometimes I think that I have particularly bad luck and these things must happen to me and every single good moment in my current life has to be paid with some sort of a mishap. I try to convince myself that this is something that happens to every city or small town dweller, and there's simply no way to avoid that, unless you lock yourself at home 24/7. This is the human created modern world full of noise and it is just tinnitus/hyperacusis that make us super-aware of these noises, that are otherwise irrelevant or at most irritating to a normal person.

Yes, when I go out I try to have some sort of protection i.e. I use 20 dB Fender plugs. But I stay away from high dB plugs as they make me more sensitive to the sound and make me hear my tinnitus louder. I am not plugging myself in the car, I remove plugs when I am in the quieter areas, so I am trying to find some compromise and I do want to hear something more than my damn tinnitus. Not to mention two ENTs told me I should NOT use them at ALL, as "normal" city sounds cannot hurt me and the plugs will make hyperacusis worse. Obviously I don't follow this advice precisely.

With all of this, I find myself in stressful situations all the time. Like yesterday - riding my bike out of nowhere a police truck is passing next to me on a loud siren and I am braking in the panic to cover my ears. Day after I am still in thinking if the 20 dB plugs and my fingers gave me enough protection for these few seconds it was passing by, and why the hell I had to encounter it while driving just for 2-3 minutes along this main street once for a month! This is what is left from a Sunday spent with my wife.

I am tired of these situations, tired of worrying, tired of all these surprises. I do read stories here - people having similar situations and having spikes for weeks despite using much more, double or triple protection or being at greater distance to the noise. This is so horrible. I don't know how anyone can live like that. I read here recommendations to avoid loud sound exposure for a month or few, take steroids, etc. Seriously, I should stuff myself with steroids and lock myself for a month every time I get exposed myself to a firetruck or a police siren, fire or car alarm? This is insane.

I wonder how to do you handle this everyday life. I cannot believe you all walk with both plugs and muffs. I can't believe you all have emergency steroid bottles as you cannot simply buy them without prescription. All I can buy is NAC and Magnesium.

Why I am NOT seeing anyone like me or you plugged or muffed on the streets? Why with all this modern noise there are NOT that many of us? What is wrong with us?

It it not tinnitus and hyperacusis what bothers me most. I am used to the sound of tinnitus and I am used to the hyperacusis pain high pitched sounds give me. What is bothering me is the fight to prevent worsening of my condition and being still able to live normal life. I have an impression that whatever I do, whatever decision I make, I am losing this fight slowly everyday.

...I needed to vent.

 

@Adaś,

Sorry to hear about your tinnitus journey and the loud sounds you come across.

Tinnitus is a hard condition to deal with and can soon grind you down.

Some outdoor sounds are loud but as it's outside it's a part of our noisy world so try not focus on loud sounds outdoors and take it for what it is without listening out for it.

Keep plugs handy for other times.

Life will get better I promise you.

love Glynis

 

I'm new to tinnitus and hyperacusis (8 weeks in). I live in Los Angeles (talk about a noisy city). This past week I had to wait in line outside 2 of my favorite bakery/dessert places. Because of social distancing they only let a few customers into store at a time. A car with a super loud engine drove by me at one store and an ambulance with police car sirens following drove by me at the other!!

I was only in line a few min. for each! I managed to get foam plugs in for the passing car and had to plug my ears with my fingers for the ambulance/police sirens.

I have 2 sets of Peltor muffs for my noisy apartment complex. And muffs for each of my 2 cars. Always carry earplugs in my pocket now.

Anyway, told the wife may have to look into moving to suburbia. I grew up in suburbs of Philadelphia where it's rare to get passing sirens or cars with souped up engines as much as in LA.

I'm so new and already I know (from recent experience and from this forum) that my life I knew just 8 weeks ago has changed dramatically (sadly) and will always have to be careful when outside...

Best wishes.

 

wellll if you'd caught me when I still lived in the city, you would have seen me sometimes use earplugs on my walk to work because of 85db planes overhead and 85db traffic nearby, I never left home without 3 different grades of earplugs, and, yes, kept lots of generally useless supplements around.

Now I live in the woods and take Klonopin, and I have found that my overall noise exposure here is just so much vastly less than I got in the city, I can actually tolerate a number of things like chainsaws which I would not have been able to when I was getting hit with city noise 24/7. (I don't think the Klonopin does much to the pitch or volume of tinnitus but somehow changes the nature of the sound and makes it more "background", however, this effect does not seem to work for most people over a long term period, and I was prescribed Klonopin pretty heavily as a teenager so I may be in a weird situation with that -- disclaimer provided because this is a super dangerous drug and I don't want to encourage it).

I do have an emergency stash of prednisone, but I also have an emergency stash of gram-positive and gram-negative antibiotics, painkillers, hypnotics, antivirals, etc. We are in a pretty remote place in the middle of a pandemic, "be prepared". We can do just fine here without electricity or services for weeks.

As far as earpro -- I still generally keep 20db silicone plugs and 33db foam plugs in the car, 33db foam plugs in all motorcycle/chainsaw/farming clothes, and we have something like 4 sets of over the ear muffs. For anything with a small gas engine in it (mowing, log splitting) I double up; some of the electric stuff we have (a chainsaw, a line trimmer) is quiet enough that one set of plugs or muffs generally does it.

Bottom line, I am 20 years into this and my behavior around noise has been permanently altered, but I have internalized the reality of all of this and so I don't find myself thinking about it nearly as much as I did ~5 years ago. Unless it gets worse, which of course it could at any moment, precautions be damned.

 

"Clinical advice rarely comprehends setbacks or the risk of making the condition worse. These findings provide key characteristics that need research to understand the underlying mechanisms. Importantly, clinicians should exercise caution at making such ambiguous claims as ‘everyday noise can’t make your condition worse’." - Bryan Pollard, Hyperacusis Research

Setbacks & sound levels:
"And so, unfortunately, we don’t have enough evidence yet to really help guide patients on this journey. Most determine this themselves. They kind of figure out that ‘magical threshold’ for themselves and they are able to make progress without lots of setbacks. So I think, unfortunately, this is something that it’s going to be a while before we can have a clinical type of recommendation, but at the individual patient level once you know where your limits are for setbacks, I think it’s important to prevent those in order to maintain forward progress." - Bryan Pollard, Tinnitus Talk Podcast Episode 8

It really depends on the individual patient how to best approach hearing protection and everyday sounds. How severe are their symptoms? Do they easily experience setbacks? How long are those setbacks? For some, everyday sounds could cause severe setbacks despite wearing hearing protection but others might not experience any worsenings even without hearing protection.

 

I hear ya and I feel the same + my hyperacusis seems to be progressively getting worse and I don't know why I'm so tired of living with this. Everyday is a drag and a race to get it over with.

 

Thanks Glynis. I really try to stay calm, but sometimes I rebel internally against all of this. I guess I have problem accepting the world as it is and how I perceive it due to my condition.

Exactly, I find this change even more dramatic than the extra sound in my head... My intuition tells me that I need to be now careful, this creates constant attention and mental tension in my head trying to prevent things from happening. Nevertheless loud sounds always find their way to catch me by surprise and makes me feel a failure when it does. I wonder if this is this REALLY what we need to do to survive with this condition? Really? I don't demand to be able to go to clubs or concerts (again), but this everyday prevention is so exhausting and sometimes kills all the pleasure from all the good moments that have left.

Yes, this sounds like an alternative to everyday city-life struggle, even I live in relatively small one, but large enough to easily encounter loud engines and sirens. So you say you don't need to worry about prevention anymore? No cross motorbikes or quads, or hunters in the area?

 

Just to respond to this (needlessly, since @Autumnly already nailed it) -- to this, I say "hogwash".

I've walked around cities that are 60db ambient, cities that are 90db ambient, rural landscapes that are 40db ambient, and rural blasting zones with sounds into the 90s. There's nothing magical about "city noise", it's just noise, if it rises to damaging levels it will damage your hearing, and we have tons of evidence showing, surprise surprise, city dwellers get damaged by city noise.

https://www.thehealthy.com/ear-nose-throat/hearing-loss/noise-induced-hearing-loss/

https://www.washingtonpost.com/nati...0bdd50-93c8-11e2-a31e-14700e2724e4_story.html

 

No sirens. Plenty of motorbikes, quads, hunters, but the only time I'm near a motorcycle or gun loud enough to be worried about is if I'm operating them myself; I have ATV trails across our land that I just let people use and I am barely even aware of it. There is a gravel pit a half mile away where people like to shoot at cans and old TVs, but it's heavily buffered by trees, with the windows shut I don't hear it and if I am outside it's probably less loud than far off thunder?

Once in a great while someone decides they want to shoot .50BMG or something insane over there. That's louder enough to make me think "Geez, did someone spend $2000 on a .50BMG rifle? Why?" but still not very distracting.

Before I went on Klonopin, I saw a dramatic increase in my sound tolerance, just from moving out of the city. I attribute some of this to being under less stress, I find the woods very calming. However, I suspect some of it is just that the pure total noise I'm exposed to every day is a lot less, so when I do occaisionally do louder things like take my motorcycle off dirt and onto pavement (earplugs), or go shoot a friend's shotgun (earplugs plus muffs) it doesn't seem to set me on edge. When I was living in the city, some days just putting dishes away could feel impossible, and I routinely used plugs for stuff like grinding coffee which barely even registers anymore.

 

@Autumnly Many thanks for that quote. This is also what I have read myself before visiting ENTs. Nevertheless, two ENTs saying "everyday sounds cannot hurt" and I should ditch plugs use were here in Switzerland, one of them from large clinic in Zurich. They were very nice and professional otherwise, no reason not to trust them. Healthcare is known to be one of the best in the world here. So not sure then why they were making such statements.

@linearb Wow this is hell of improvement. Happy to hear that.

 

Oh I have seen these. We talk about lot of large cities around the world. I have been to NY last year and most of the people there were barely concerned about the noise including IMHO very loud NYC subway.

I am deviating from the subject a bit, but something does not add up. Why Tinnitus Talk forum has only 31,000 members while Internet have 4 billion users, and according to what I have read in few places 1-2% of population is affected by tinnitus? So where are all the people with hearing damaged by city noise?

I wonder if there is there anything special that blessed us with tinnitus, not just with a worse audiogram. Btw. my audiograms were always very good. But so what, if I need to hear everything though the noise in my head.

Going back to the subject why we need to protect our hearing, while the other city dwellers with apparently also deteriorated hearing don't bother?

Not trying to argue that we need to protect our hearing, but trying to understand why there is such a gap between our 31,000 group and apparently larger group of people with damaged hearing that apparently bother less about its (their) hearing condition.

 

I have some insight from others I know. I have an older sibling whose hearing has gotten bad from noise exposure, but, no tinnitus and they continue to go to shows without earplugs and have just resigned themselves to bad hearing and potential tinnitus later in life. I have another sibling with hearing loss and tinnitus, who still plays the violin (though wears an earplug on the violin side now). In their case, they had a very very serious Lyme disease case that made them bedridden for a number of years and unable to work for a number of years after, and as their tinnitus has never risen to the level of making them unable to work, they see it more as an annoyance than an obstacle.

I know maybe a dozen other people with tinnitus; none of them are as bothered by it as I was pre-medication. All of them take some amount of precautions, mostly earplugs at shows, being careful with headphones, etc. However, most of these people don't think about their tinnitus very much "unless I'm really tired, or under a lot of stress" is a common refrain.

I have done pitch and volume matching with some of these people, and I have at least one friend who seems to have the same loudness of tinnitus I do at the same insane 12 kHz-14 kHz high frequency -- and yet, he just doesn't think about it very much. He confided that it's been on his mind more than usual recently; he's also in an insanely stressful situation right now because of COVID-19 quarantine and a special needs kid he has.

I have a study somewhere that did a bunch of fMRI imaging of tinnitus patients which concluded that "tinnitus volume" and "tinnitus distress" are actually modulated by different parts of the brain, which are extremely connected, but disparate. Hence, someone with a more of a deficit in one region vs the other, might have "louder" tinnitus which bothers them a lot less, than someone with different damage who has "quieter" tinnitus that drives them completely crazy.

I think it's all down to how the brain plasticizes changes after input is lost to trauma, combined with other unconscious factors. All of this very much jives with my own anecdotal experience.

(Yes, I know a lot of people with tinnitus -- some of this comes from hanging out around motorcycles, electric guitars and shooting ranges -- but I'm also just very talkative and upfront on this. I suspect many of us know a lot more people with tinnitus than we realize, minor to moderate cases are fairly common and get more and more so as we enter our 30s, 40s and beyond).

 

Just wondering, are you by chance left-handed? Leftie-brains are connected in a different way than right-handers.

 

No, I'm not, but I do focus on left handed dexterity for... reasons?

For instance in 2013 I ran this blog, trying to draw as many cat cartoons with my left hand only as I could. I do think I improved through the year https://2013yearoflefthandedcatdrawings.tumblr.com/

edit: actually, in retrospect, I think one reason I took that project on was some reading that had led me to think that maybe working out my "right brain" could help with tinnitus.

It didn't, but it did help me learn to sketch cats with my left hand, and, by proxy, my right.

 

Some of these are pretty good.

As for the rest of this thread, I get it completely. My fear is less around my tinnitus and hyperacusis, and more around the possibility of them getting worse. Yesterday I was returning a book to the library, and on the way there it started to rain. I put 20 dB earplugs with filters in.

For rain.

Seriously, sometimes my phonophobia is so bad I'm scared to leave the house.
I gotcha, @Adaś.

 

The blog is amazing, but why do you only have two posts on the doggo one?

Sketching cats might come handy with your daughter right? So it was time well spent.

 

I'm the same - my hyperacusis has improved greatly over the past 6 months and it feels like I am 80% over this but it's just three step forwards two steps back and the fear of encountering a further setback is very real. I currently live at home with my parents and find that I reflexively reach for my earplugs whenever there is loudish noise. Worst of all, my house has a buzzer alarm system on the front door so whenever someone enters it emits a shrill, loud BEEP - it lasts like 1 second but it's really loud and shrill so unlikely to cause any kind of real setback but I've worried I've started over-protecting because of it.

 

thanks!

I believe I got distracted a couple weeks in; that was also around the time I started sketching more with my right hand, mostly offline.

Yes, kiddo loves my cats, we have fun with it, I'll start drawing and she'll say "give him THREE eyes! Aww, I think he is lonely let's make him a friend"

 

Me too. Every day I find something new to be worried about. For me, putting in earplugs for rain makes perfect sense. Rain -> thunderstorm -> worsening. I know I'm catastrophising, but I can't seem to stop.

I think lot of people are just not aware that worsening is a valid concern. Comparing my local Facebook tinnitus group and this forum, they are like two different worlds. The struggling and distress are both huge on the two platforms, but here protecting our ears is a very current topic, in the local group the majority of the members doesn't protect AT ALL. Some wear plugs for concerts, but that's about it.

In my "real life", since I got tinnitus, lots of people came forward as having tinnitus too. And they live a perfectly normal life. I don't. I'm debilitated by my mild to moderate but very reactive tinnitus, but I have always been sensitive to unwanted sounds and have anxiety since I can remember.

Also, I visited in the last 9 months 6 ENTs and 3 audiologist. None of them ever said anything about needing to protect even in loud noises: Try to get used to it, live a normal life.

 

Overall I do not find places with loud noise or music (such as movies, exercise classes) as enjoyable as I used to, so I generally avoid these places. Wearing ear plugs/earmuffs makes my tinnitus even louder which takes away from the enjoyment of movies and exercise classes. I do not wear ear protection when commuting on the train or eating out, walking on a busy street etc. With a firetruck or police siren, I stop and plug my ears with my fingers, or try to walk into a store. My building has occasional fire alarms but I wear my earmuffs; thankfully I haven't been caught in the hallway or elevator when the alarm went off.

 

I would not go on prednisone repeatedly for each loud sound exposure. It is not worth the risk each time.

The 20 db plugs are not strong enough for what you are describing. City noises can vary between 60 to 90 db's, and this intermittent environment can be a real challenge. Try it with either foam earplugs, or silicone earplugs which will be more protective from NRR 25 to 33 depending on model chosen. If you don't get some better protection you will keep up the serial damage and none of this will ever improve. Try it for two weeks, and see if the symptoms improve at all.

No reason to give up, there is plenty of hope that this will improve.

 

So you would not? Neither I do. I have no steroid stash.
I take NAC and magnesium normally, decided to raise dose of NAC from 600mg/day to 1200mg for couple of days due to Sunday's passing police car siren as a precaution. I'd say my fingers and silicone plugs gave me round 30dB, so in worst case is was 90-110 dB for these few sec it was passing by. There was nothing more I could do. I had no spike or ear fullness whatsoever afterwards, which I hope is good sign and indication that NAC is sufficient.

But I would like to know what would be the threshold of exposure that would justify prednisone use. What is your approach? Obverse symptoms? Spikes? Ear pain or fullness? Or hitting daily NIOSH limits?

Does anyone have experience with Apple watch Noise app for monitoring environment noise levels?

I also wonder if NAC can be treated as an equivalent of steroids. It does not require prescription, apparently has no side-effect at relatively low doses. I read on the other thread that US NAVY is using NAC to prevent acoustic damage.

I know and I agree, they are not strong enough for every situation, but they still provide some auditory input levels in normal situations so I can still hear conversations and normal world around me. If something bad is coming I always can use my fingers as an extra protection.
Using 33dB plugs makes me feel completely disconnected from the world and let me hear mostly my T, so this is really bad experience.

I am not giving up. I had a bad day. And I was just struggling and trying to understand what is the best approach, and how to remain sane with this insane condition. Because overprotecting seems to be as harmful as having not enough protection.

 

They're uneducated in regards to hyperacusis and can't imagine a condition that makes normal everyday sounds dangerous to a person. Many ENTs rarely see people with hyperacusis, yet alone severe hyperacusis.

Also: "Not many patients would be happy to hear that there’s a lag of about 17 years between when health scientists learn something significant from rigorous research and when health practitioners change their patient care as a result, but that’s what a now famous study from the Institute of Medicine (now known as the National Academy of Medicine) uncovered in 2001." - source

 

My other observation is that they are not necessarily unaware of these risks, but that we are ONLY statistics for them. Their recommendation to not (over)protect comes from simple statistical observation that they have just a few recurring cases of patients whose condition worsened because of some new mishap, additional to the one that created tinnitus in the first place. And I think they see lot of tinnitus cases and some hyperacusis cases too. At least in larger clinics. But I agree that they may not see many severe cases, which is due to statistics again.

They may believe (which can be true - I simply don't know) that for mild to moderate tinnitus/hyperacusis sufferer the stress caused by worrying about the potential worsening can potentially do same or even more damage that some potential new mishap during normal life activities. Not to mention that such stress creates such a burden and make your life even more miserable to how it is with your current tinnitus itself anyway. As instead of enjoying what is left, you constantly worry about potential worsening, that might or might NOT happen. And according to what I read and what ENTs (having a lot of tinnitus cases) say, all of this is very unlikely.

Still, reading this forum, we know it can happen and it DOES happen for some of us. And I have a strong belief the reason we see many of severe cases here, because this forum unfortunately represents this UNLUCKY and unlikely subgroup of whole tinnitus sufferers worldwide. Cases where some mishaps caused more severe than usual damage or happened twice or more.

Going back to my point, I think this whole fight for this damn thing not getting any worse is worthless because whatever you do you might lose the fight anyway if you have not enough luck.

If you are overprotecting, locking yourself home, avoid the risk with all costs - you make your life super-miserable. If you try no to think about this problem, you have still possibility to lead normal life without all the stress, de-focus from tinnitus problem, but SOME mishap that MIGHT happen can potentially worsen your condition. When it does, you are back in the rabbit hole - blaming yourself that you could take more countermeasures. So whatever you do in the end it may turn bad for you.

That's why I wanted to hear from you what is YOUR approach to that. Do you really prefer extreme counter measures and avoidance sacrificing part of your life rather than the (small?) risk of new mishap when trying to live normal life and trying to forget about tinnitus?

 

This is an English speaking site. Most people in the world do not speak English, hence the smaller number of people on this site. You are correct however, that tinnitus distress is only suffered by a very small percentage of people with tinnitus. According to recent studies, there seems to be a correlation with personality type, especially those with perfectionist, introverted, neurotic, obsessive type A personalities.

 

When my tinnitus got worse I suddenly had hyperacusis. I protected my ears like crazy and it only seemed to make my hyperacusis worse. After a while I noticed some of the members on here said despite protection they still had worsening tinnitus.

So I decided stressing about it wasn't good for me. I do protect my ears when working around loud noises or power tools. Did before tinnitus. I also dumped my ear buds and have switched to head phones only. I never put on my head phones without checking volume and have decibel protection on them. I also have cut down on headphone use in general. I don't listen to music through headphones anymore. Just occasional movies/TV and audio books/podcasts.

When I was over protecting in 2017 by August I had severe H. When I just decided to not let the hyperacusis bother me and over protect by the Spring of 2018 things calmed down. Now I don't even claim to have H really. I get flare ups only when I have inner ear/Eustachian tube problems.

The stress of tinnitus was enough for me, worrying about H and worsening things through ear protection only seemed to be making it worse for me. There's always worry that maybe it could get worse. But mine did get worse all on it's own in a 3 hour window while I was sleeping . . . so . . . *shrugs*

 

Sorry to hear about your struggles.
You are venting and I hear you. It's a very difficult situation not many people understand.

 

I live in NYC and use earplugs or earmuffs when riding the subway, but the vast majority do not. This is the way it's been since the subways opened in 1904.

Most people with tinnitus are not particularly bothered by it. It's either very mild, or they habituate very fast. In my experience, and I would imagine that the same is true for most other sufferers, it is just a matter of time until the ringing lowers and/or the brain learns to ignore the noise.

 

@Adaś, how are you doing 3 years later? Worse? Better? Same? I've been asking myself these very same questions.

Of course, I got the same advice... From the ENT and the tinnitus "expert" Dr. Hubbard (what a joke). Like, I tried to find some middle ground, taking it careful, but not going crazy. Basically I use custom molded earplugs with 25 dB filter when driving the car 98% of the time, or when being outside, except for walks in the woods. I am not home, not working currently. I live in a fairly quiet rural area, there is a road nearby and some traffic noise, annoying for sure (like motorbikes), but certainly not loud when inside the house. At home I do not plug up, but I do stay away from vacuums, etc. My hyperacusis and reactive tinnitus means I am bothered by A/C noise, but I deal with it, or just move to quieter parts of the house. I have managed to avoid any louder noises since at least April.

Yet I slowly seem to be worsening. And am increasingly tired and worried where this is going. I am basically trying to give myself 2-3 years to see what really happens in my case (I am 8 months in). If this continues to worsen, or frankly even if this stays the way it is, I don't think I'll want to live like this any more.

Indeed, where are people like us in the real world? Now I have met many people with tinnitus (never before) and they seem to live "normally". Like a friend who apparently had super mild tinnitus before but got a bad case two months after me (and after my warning!). He got bad tinnitus and hyperacusis from hammering some nails. But he flies all over the world, goes windsurfing, racing his car on track, drives to work, etc. He uses earplugs in his louder car, but that's it. He says it's "annoying" but it is not going to stop him.

WTF is wrong with us indeed? I just do not understand it. Is it in our heads, because we keep reading about it here and keep ruminating?

 

What do mean @gameover? In our heads because we're always thinking about it?

Who knows how "bad" his bad tinnitus is. This is all so subjective.