How Do You Know If Sounds Are “Ear-Damaging Loud” or Just “Hyperacusis Loud"?

It was under my impression that if the ear drum is tensed during the tympanometry measurements and reacts to sound something would show up. Decreased/increased compliance perhaps?

 

I am positive normal sounds are making me worse. I keep running into situations where I don't protect my ears because well, I just don't want to. I have a hard time communicating with ears plugs, I hate the feel, hate the look, my tinnitus is 10 times louder, I want to feel/look normal so it's very convenient for me to believe that I'm doing the right thing by ignoring the pain. I have a high tolerance for pain, I wince a little and turn my head in strange ways if someone laughs or sneezes but I otherwise I am pretty good at hiding it.

The problem is, I get home and my ears hurt so much that I just have to go pass out. My ringing gets so loud that I feel I can't be conscious anymore. The noise and pain alow me to pass out, even if I am not tired. The scratching sounds move in and out of my ears, the pitch is extremely painful, my ears are full and muffled, I feel like someone is digging around my ears with an ice pick or screw driver, I don't know what to do with this, it can be mid day and I end up in bed with my ear pressed on the pillow (this seems to ease the pain slightly), I switch from ear to ear tossing and turning, sometimes put a pillow on both ears at once.

This all seems pretty ridiculous that I keep doing this, I've done this hundreds of times on doctors advise. I keep thinking it will somehow get better, keep getting told its in my head and that I'm depressed or anxious (even if I don't know it).

The reason I'm writing this today is becasue I was out to eat last night at a very quiet place, I was there for approximately one hour, no ear plugs. I am now stuck in bed (next day) in such pain I can't talk, I can't flush the toilet, I can't get a plate out of the cupboard, can't watch TV, massive headache, basically I can't f@@kin move. I just lay here in the quiet napping on and off with this blasting noise screaming in my brain and intense ear pain.

Again, I have done this hundreds of times, I'm bed ridden and non functional a lot of my life since the onset of T and H, it doesn't take a lot anymore, just a few noises will do this to me but I push it as hard as I can becasue I can not stand this isolated life, plus if I don't do this the people around me that I care about will think I'm lazy and useless. It's a pride thing as well, I don't want to appear weak, or that I'm not trying. This is what pressures me, I fear the people that I care about will leave me becasue they feel I have given up. It seems everyone is mad at me these days, I can't keep up.

I can go to any doctor and they will just tell me this is all fine, and that I should just keep getting out. How can this be? My ears are just getting beat up and worse as I keep pushing them.

I'm so pissed off, desperate and confused. And to be honest, I'm totally humiliated. I just keep being told that it's me, and that I'm just overreacting or anxious. All the "experts" say it's all fine so what do I tell family??? Well, the experts say it's ok, if I don't do things, push hard then everyone is mad at me and thinks that I just can't be bothered. After all I was given the go ahead to expose myself to "normal sounds". I'm seriously in hell here.

None of this makes sense, I'm living in the twilight zone, I don't even dare tell most people about this nightmare, they will just treat me like I've lost my mind. I just suck it up and keep it to myself. Sit in social situations laughing and acting like I'm not in pain, then hiding in bed from the aftermath.

I'm still the same strong person that people remember, the few that know what is happening think that I have all of a sudden become weak, that I haven't lost strength or fight, what they don't know is what I'm up against here. It's all just invisible, they can't see this invisible opposition kicking my ass every day so it isn't even there in their eyes.

I'm so god damn ashamed of myself it actually makes me sick. Even just writing this post makes me want to yack. I've never belonged to a support forum in my life and here I am complaining like a wuss. Unreal.

I think my point to this long lame post is that maybe, just maybe the experts should listen to some of the people in my situation. We aren't all just a bunch of mentally ill paranoid hypochondriac fucktard idiots that are making this stuff up.

 

That sounds horrible man , stay strong !!

 

@Telis, I’m taking a risk by responding to your heartfelt post and I hope you will respond in kind. You aren’t being well-served by your doctors. Things obviously aren’t fine and the approach your doctors have recommended to you isn’t working. Second, you aren’t overreacting, you haven’t lost your mind, you don’t need to keep putting yourself in a position where you feel you have to suck it up. If you take anything from this post, it is that you have absolutely nothing to feel ashamed of. If anything, your doctors should be ashamed for making a hash out of the opportunity to help you. I am sorry you are hurting.

I’m glad you aren’t overprotecting your ears. That is the one thing you should retain as you go forward. But rather than try to ignore or put a brave face on the pain you feel when someone laughs or sneezes, understand there is only one way this is going to get better for you. You need to get into therapy to treat your decreased sound tolerance. If you do that, then over time the pain and discomfort you feel when you encounter normal sounds will get much better. But before you can get into therapy, you have a far more important decision to make, assuming you choose to see it that way. The only way through this terrible time in your life is to make the decision that you need help with what you are going through. Finding the right clinician to help you can (and probably will) take time, but you should allow yourself that time. And then you should commit to therapy as if your life depends on it – because it does.

I have been where you are. There isn’t anything you are describing that I haven’t been through too. There isn’t any question in my mind that you can feel much better over time, but only by making the decision to get help, finding a doctor who is knowledgeable about the diagnosis and treatment of hyperacusis in particular and related decreased sound tolerance issues, and by making a commitment to get into, and stick with, therapy.

For people with moderate or severe hyperacusis, the condition won’t go away by itself or solely by exposing our ears to normal sound. When you get home, your ears feel like they have been run over by a bus because you need to do more than you are doing. You need a different strategy.

You won’t believe this, and there is no reason you should, but exposing your ears to normal sound isn’t causing damage. It just feels absolutely horrible, it physically hurts like hell, and it ramps up your tinnitus. Again, I have been where you are now. I understand what you are describing and how bad it feels. For me, it was ear pain, aural fullness, tinnitus that sounded like it is being sent through a loudspeaker, the feeling of someone driving an ice pick deep into my ears, constant pain, confusion, disgust, fear the size of a ten refrigerators, and a zip code’s worth of despair. And on top of that, an incredibly low tolerance for normal sound. You aren’t alone in what you are going through. This happened to me, and it has happened to others. You can either listen to folks whose despair has gotten the better of them or to folks who came out the other end and are fine – like me. Every single time I heard sound that physically hurt like hell to hear, I thought it was damaging my ears. When I felt constant ear pain twenty four hours a day for seven months with no let-up, I was convinced exposure to normal sound had damaged my ears. I am here to tell you that I hadn’t done any damage at all. It just felt awful and was very frightening.

I agree with you that to continue with the strategy your doctors have laid out for you is ridiculous. Someone once said the definition of insanity is to keep doing the same damn thing and to expect a different result. That lesson certainly applies here. Continuing with the strategy of exposing yourself to normal sound and not wearing hearing protection is not enough. The fact that you have tried hundreds of times to do your best, that you push it as hard as you can, that you realize that leading an isolated life is not an option any more, says a lot. It means that everything you need to turn this around is inside you. It can only begin by making the decision to get help and then sticking with it.

You wrote that you can go to any doctor and they will all tell you this is all fine and you should just keep going out. Nonsense. Treating hyperacusis happens in increments. Unfortunately, your doctors haven’t helped you to treat it yet. Get started today. Make yourself get out of bed and find two or three doctors who seem to know what they are talking about regarding hyperacusis no matter where they are. Pick one. Make an appointment and get there.

It is normal to feel desperate and confused. But anyone who tells you that it’s you, that you are overreacting, or complaining, or you are expressing anxiety but don’t know it, should be made to change their vocation to shoe salesman. Any “expert” who has told you it’s OK is an idiot. You haven’t lost your mind, you’re not “complaining like a wuss”, you’re not mentally ill, you aren’t expressing some kind of self-involved hypocondriacal fantasy, or making stuff up.

I believe you are a strong person. You can get through this, but you’re going to have to make the move. No one else can do it for you. Those of us who have walked down the same road can’t do it for you. We can only encourage you.

So, there you go. You can take on board that I have been where you are now and I’m trying to help. I got through it with a lot of hard work. And you can too. Don’t give up on yourself.

here2help

 

CBT is a fundamental part of TRT? Not according to this:

www.tinnitustalk.com/threads/trt-or-cbt.8517/#post-117678

a (concerned) passerby

 

Well thanks for taking the time to respond.

I just don't know how we know that my condition is not being made worse due to noise exposure.

My left ear goes into spasms if I talk, my right can take more, it's this normal? I can flick a light switch and my ear drum jumps (left ear only) and it is VERY painful.

My tinnitus comes from barotrauma, poping my ears excessively with a lot of force and then worsened with drugs. It feels like there is something broken in my left ear.

 

There's little I can know about this right now, but look at this spectacular conclusion these south Koreans got to in this paper

Clinical characteristics and therapeutic response of objective tinnitus due to middle ear myoclonus: a large case series.


http://libgen.io/scimag/index.php?s...ctive+tinnitus&journalid=&v=&i=&p=&redirect=1

''
Endoscopic examination and impedance audiometry
are helpful tools for diagnosing and documenting
this rare condition, although negative findings should
not preclude the diagnosis.''

And they seem to be the only doctors that have carried out a large case study of endoscopic examinations. Jastreboff on the other hand seems to have been busy staring into the soul of his patients and telling them and his wife that it was just phantom pain because no impedance irregularities could be spotted.

 

@japongus

From what I could gather, it seems MEM is yet another symtom of hearing damage and yes, abnormal impedance tympanometry is often observed but not always.

 

hey @here2help, I still really would like to see the research you're referencing in your posts above!

 

@Telis dammit man..Just a massive hug to you....I may be a woman but I know how you feel. I am now a " ghost" in this life...and sadly no one will ever truly know why-the truth- if ......anyways.

Regarding others advice, trust your own damn body! There is no formative research/studies/ results! !! with H and certainly one cannot make generalizations.

 

You also got though it with your own customized therapy. Where should @Telis go? Which " expert" ???

I am not being a b____h here, I am in same place but I would never do TRT as My case is neurogenic...just lookin out for Telis.

 

I'd like to add that if you are subjected to noise trauma, the worst possible thing you could do is expose yourself to ''normal levels of noise''.

Kind of like your sprained ankle isn't going to heal very well if you try to walk with it.

 

Thanks, yeah I'm not sure if it's worth testing this any further. My T is to the point that I can barely think/function and my H is just as draining. I've lost so much hearing over the last year or so, I'm going to go get tested in a week, I know it's worse. Things I could hear before the last test, I can not hear at all anymore. My ears are just blocked up with screaming T, they still haven't opened up after dinner the other night so I kind of give up on pushing it.

Yeah I don't want to be in isolation and I want my life back but my condition doesn't seem to give a shit about that. Sheer will and keeping positive is not helping me get ahead. I can't even take my gf out for a nice dinner at a fairly quiet spot without being beaten to the ground by this shit and permanently paying the price every time.

 

I understand your analogy there, and to an extent I believe it too, but how long is it fair to say to avoid normal noise? I know its impossible to tell but if you can recover fully from a sprained ankle, why not recover from being sensitive to sound? I made my fair share of mistakes when I first got T and that seems to have made it worse, but I feel like my H is slowly getting better. Noise still spikes my tinnitus but it doesn't have quite as much pain in the ear as it did before. I dunno, just thinking out loud hear.

 

I totally understand. My kids have lost mother. Tonight my own mother said they will be scarred for life and need counseling (now) I am in a sea of tears..I try very, very hard to do "normal" things, and consequently get worse.

2 years....I don't know anymore :*( I am lost...and feel each day more and more like a ghost...unable to participate in the "real world"...I feel I don't belong here...yet I have to be here.. messed up shit.

Sorry..I am just very depressed lately..it's taken it's toll..and so you know, I did do my own form of " TRT" exposure to sounds, no plugs etc etc...always worsened. .I am just sharing..that is my story...I firmly believe we are all different and one general treatment can not possibly treat everyone. .maybe some..sure..I don't know...that is what I know.

 

Then you know as much as me, then.

What I don't know is if MEM is the hyperacusis itself.
and
How the laser tricksters claim the damage is only in the cochlea when EEG show no recruitment or amplified sound, and how MEM would be contradictory to that claim seeing as MEM would be like a parkinson thing, triggered by the brain.
and
How the TRT tricksters have probably been proven to be up their own asses in their claims that impedance proved there was no MEM and so that proved it was a phantom perception all in the mind.

 

What a horrible thing to say....thanks for your support mom.

 

Uhhh yea..it stung quite a bit but she is well meaning and ...French...French Canadians won't bullshit you.

Fact is my kids have been affected..everyone around me has..

I really don't have anymore words. Is what it is...I didn't ask for this..they didn't ask for a sick mom..at least for the majority of their lives I was happy and well.

and I still try.

 

A cursory glance at the tinnitus handicap questionnaire used by TRT doctors shows that the questions don't address real improvement, only tangential issues of adaptation wherein the hyperacusis patient has to adapt and is encouraged to tick better marks after CBT and TRT. Hell, why wouldn't TRT or masking work in a THI if the startle reflex hyperacusis (which Jastreboff conveniently claims is mere misophonia) is bound to be helped by the background noises provided therein.

 

There's no such research, he's bluffing. But maybe he's thinking of sharticles like this one

hearinglosshelp.com/blog/do-i-have-tonic-tensor-tympani-syndrome-ttts/

''
4. If you believe that certain loud (to you) sounds have damaged your ears (when they haven’t), you are setting yourself up for developing various TTTS symptoms. Conversely, if you treat such incidents as no big deal (no emotional involvement), you are unlikely to develop TTTS and will much more readily habituate to your tinnitus and hyperacusis if any develops.

This is born out by the conclusions of researchers who concluded that “74.0% of hyperacusis patients with the symptom of dull ache in the ear and 66.7% of hyperacusis patients with the symptom of sharp pain in the ear reported these symptoms developed or were exacerbated by loud/intolerable sound exposure. These patients readily believe that their ears are no longer able to physically tolerate these sounds, or that these sounds are causing damage to their ears or hearing, and should be avoided. This unpleasant consequence of exposure to sounds perceived as intolerable and the threat of further exposure is likely to play a significant role in tinnitus escalation and the development, persistence and escalation of hyperacusis.” (1)''

Impressive ridiculous circular bs doublethink going on right there. Somehow people suffering spasming ears aren't concerned about the spasms, they're worried the ear will get worse, and they develop further TTTS by developed OCD. And the research is ''born out of by'' hyperacusis patients reporting that it was indeed sound exposure that destroyed their ears. But, hey, maybe we can all rely on urban planning regulators to delineate the magical line where sound won't create further worsening for those who have weakened ears, right!

 

Dr Nagler believed Jastreboff and carried out TRT himself. Is he aware that other doctors have indeed combined the both of them in their handling of THI?

 

start taking 5htp ... it`s safe and will help you out a bit ... i havn`t had any depressed feelings since I started taking it ... nor euphoric ones (i do have fun - but nothing `drugged`) ... I think it works very deep and subtle but effective anyway .. it is the building block for serotonin .. .so your brain can safely produce more of it without changing anything hormonal or neuron wise ... I take 100 mg`s of a combo of Oxitriptan 100mg and Pyridoxine hcl 50 mg (they are combined in pills) ... one is 5htp the other something to process it better.

and if your mom won`t bullshit you ... she can handle a decent `piss off!` ...

 

It's very hard to know... for example sometimes a dog barking, a car horn, a child scream and you feel it amplified. A bit of pain and fulness maybe a spike in T but the nest day you'r better. For example yesterday i entered a bad for 30 secunds, feel like hitting with a punch in my hears... days of pain a new higher tinnitus that won't go back. I think hyperacusis is more than just decreased sound tolerance, it's also the sound that causes damage for hyperacusis people is less than for normal persons.

 

My UK audiologist say TRT is not really used anymore. Not that they ever did do it in the true sense of the word. Maybe it's money in the NHS or perhaps it's not deemed to be any good after all.

 

I usually test the ambient noise by whispering or saying couple of words on really low volume. If I can hear myself whispering (ears not plugged with plugs or fingers) then the volume level around is fine.

And I really mean that I can hear myself "through air", not via bone conduction/body resonance (which happens if you plug your ears).

 

Just thought I'd dig up an old thread here and say that the Jastreboff miracle of H is complete and utter bullshit!I had spent two years recovering from H and finally got to the point where I was happy.I had earplugs with me 24/7 just incase I needed them,and thankfully I didn't.I met an amazing woman and had big plans for the future,I was uncomfortable at first because I had H and didn't think she'd understand,thankfully she did.Heres a list of everything non damaging we done together that eventually led me to worse T and H
-Went Bowling 60-85db
-Went to Dinner with Family 70db
-Went to family gathering in pub 85db and peaked at 90 so decided to leave.
-My fathers funeral,church bells were loud so covered ears,went to after a with family in pub which averaged 80db,some dumbass started letting off fireworks so I covered my ears and left.
-Brought kids trick or treating on Halloween,kids screamed at one point which hurt my ears,wasn't too bad.Fireworks in the distance rating at 80db where I was standing so no need for plugs.
-Had friends and family up for drinks in my house to celebrate my father,wasn't loud just chatting and laughing.
-Family member kisses side of face and sound hurt my ear,measured sound by kissing into decibel meter at same pitch and got 85db,supposedly not enough to damage hearing.
-Went to girlfriends uncles going away party,Irish Music was being played at about 95db so put in earplugs before entering and stayed maybe one hour.
-Went to kids birthday party and wore earplugs all day as I knew there would be screaming kids
-Went on a trip to London,boat there was 80db,we then drove 6 hours across England in my car which averages at 80db,train was 80-85db so no need for plugs,went to restaurant first night we were there,little noisy 85db no plugs worn because we weren't there long.The next day we went on a tour of London and I wore earplugs all day just to be certain I didn't over do it.
We returned home the following day.
-Done all our Christmas shopping and was around everyday noise nothing too major,just shopping malls etc.
-Went to Comedy show and wore earplugs for the entire event as it was quite busy,peeked at 94db when people laughed.
-Went to car show not loud at all,70-80db,some tool revved up his car near enough to us so I covered my ears.
-Watched my brother participate in a Motorcross trial,only him on the track and plugged my ears when he passed by.
I would also like to point out that in between these events pointed out we were just around normal everyday noises,some noises like balloons popping and things that I wasn't fully comfortable but nothing ear damaging loud,when useing tools or anything similar I was always fully protected,I even used ear muffs when useing the Hoover!

And where am I now?Back with new level T and severe H!Can barely get out of bed in the morning or do anything for my girlfriend or family.I was led to believe I would be safe If I continued like this and I wasn't,if this doesn't show you that Jastrebroff is a shit talking know it all then I don't know what does.We played it safe with my ears at all times,we didn't even go out for New Years or anything,we just sat at home and enjoyed eachothers company.Im sorry people but the mans theory is complete crap and should be disregarded at all costs,I constantly monitored sound around me and it made no difference,I still fell and crumbled.

 

Here is the rule I follow for myself
Healthy ears : up to 85db　 - the good old days
Damaged ears: 65db -thats's me now

And I give myself a 5 db margin since the cheaper db meters/smartphone apps aren't super accurate, so the reading should be up to 60 db unprotected.

Big difference between 60 and 85 - 85 is over ten times as loud as 60db

This is what Doc. Wilden ( famous ENT who does LLLT) always says - damaged ears don't have the same ability to protect themselves so plug/muff up or suffer the consequences and your ears will never heal

If you have anxiety T with healthy ears then of course the TRT/etc..advice is fine

 

I maxed myself to 85db anything over that was protection territory,so I was led to believe

 

I don't think any ENT wiht knowledge of inner ear will say that 85 Db is fine for hours if you have inner ear damage

Nagler is not en ENT - he also says he got T from unknown causes

 

I was told that 85db won't damage my hearing as my LdLs were all 100db.I was told that if I'm in any situation over 85db to strictly limit my time there and use hearing protection if needed.