New Sound and I Really Get Despaired

Hi tinnitus fellows,

I have T since a year now. It was a real nightmare in the beginning and along this journey.

I was hoping to write a success story, it seems like I'm much a loser. I don't know what is wrong with me.
T was first in the right ear (fluctuates and has different sounds). Then got to the left. I had a routine that my T was strong in the right ear and only a whoosh in the left which made this one like non-existent.

I have H too, which has worsened over the year. In the beginning, was able to go out going on my regular tasks, now I developed severe H with pain.

I left my job and everything I have to go to live with my parents: I couldn't make it on my own as my H was severe enough to be a hurdle in my life.

I was relieved in a way, eventhough my mother still doesnt't understand that I'm really suffering.

So, staying at home, I try to be busy, but sometimes, I feel so depressed to have no more social life. I still made some efforts, to find some way to be healed, I try to not expose myself to sounds cause I suffer from pain, I try to read books, have a healthy diet (juices) and be patient.

One of my few distractions is surfing on internet, having some short walks and having some telephone conversations with friends but I answer very occasionnaly, when I feel it's a good day. I really use the phone for texting but sometimes eventhough I'm suffering, I need to talk to my best friends and I answer to their few calls. After that I feel better and it seems to subside the pain. I know having calls are not good for people with H and a fellow H sufferer recommended me to not use the phone at all, only for texting.

Well last Monday, a friend just saw on me on Facebook (she knows about my ears problem) and asked me to have a telephone conversation with me. I couldn' resist as it was more than 15 days that I didn't talk to none of my friends (they are not living where my parents live) and I felt sad (about my condition).

Usually, I talk 30 mn, but this time I didn't see the time passing and we talked 3 hours with some breaks. She told me her problems and I was in a way glad to talk about something else than my condition. At a moment, I heared her child screaming. When I phone: I put the speaker on, put it at 30 cms from me on teh table, put the volume at 1 (the lowest one) and I cut the 4G. But this time, I didn't cut the 4G as I was previously looking briefly at some news.

The evening passed and I had some T spikes which are "normal" when I spend more than 20 mn on the phone.
I woke up in the morning and had a ringing in my left (the more silent one). I already think about the phone since I am surprised this could lead to new sound. But ears are so fragile and waves can reach the cochlear. But I told to myself it's ok, it shall pass.

But 3 days later, I still have it and I'm stressing. Even it's lower in volume, it's still there from time to time and sometimes getting high pitched and again this ringing. I just wish it wouldn't stay as I habituated to my T (with still some bad days), and I can't stop blaming myself for having this telephone conversation with this friend.

I can't stop crying, cause having H is a real curse eventhough I try to be positive and still be thankful for what I have, but having a new sound as you just staying most of the time at home, seems quite unfair. It's really much lower today, but having a new sound just makes me depressed and angry at myself, for such a mistake as I know it's not a good idea to talk that long.

I can't stop monitoring, and searching the cause of it. It's driving me crazy. Thanks for reading (it's a quite long sorry).

 

Unless you have an ear disease or significant hearing loss, your biggest problem is your anxiety. I understand. I have a ton of it too. Most likely your spike was caused by the anxiety that talking on the phone causes you and not talking on the phone itself. You can't let this stop you from living your life. Yes you should be more cautious with your ears but not to the point where you become a hermit. If you are waiting for T to end to start your life, you may never have a life. Sure, there's a chance that it will go away but not if you keep living your life around it.

Every day, I try to think to myself,"What would I be doing if I didn't have this?" And then do whatever that is obviously within reason. It's hard. Half the time I feel like I can't hear but I just plug along. Some days I break down and freak out. Then I keep going, because there is no other choice. Lots of people live with chronic pain. Unfortunately, this is our chronic pain. Who knows if you start living your life you may find that your T just fades into the background.

 

Thanks a lot for your answer. The thing with H, is that it blocks you from everything you love. T too, I know. But at least, you can go out and have some distractions. I try to get over my pain, but everytime I make some efforts, the pain comes with a vengeance.

I agree with you, one of my problem is anxiety that I try to beat. But not easy when you have H. I appreciate your comment about living life and not turning around T.

 

Anyone with the same experience? Please I'm not feeling good, have dark ideas.

 

I'm not sure any two T + H experiences are the same, but I definitely identify with your symptoms and feelings.

Do you have any pets? play any games on mute? When things get bad these kind of things is what I have been doing.

 

You will get better, this phone call was probably tiring for your ears but nothing dangerous.

I think it was worthy to have this talk with your friend, even if you're tired now, because those moments help you to feel alive.

 

Thanks. It's not really the phone call, as it's not the first time I've done it. But the time I spent. It helps me to keep alive indeed, as I feel like I'm dead inside.

 

Hi SilverSpiral,

You too has H & T? Nope I don't have any pets, I wish I have a cat, but my parents are against it. I don't play games, but maybe I shall find sthg like chest or sthg like that. My thing is to go to a forum nothing related to T or H, and having conversations with "normal people". It does help me to think about something else but then after 1 day it reminds I'm no more like them.

How is your H SilverSpiral, how long do you have it?

 

I know, I had the same experience recently. It was not on the phone but we started talking at diner with my family and it went for 3 hours.

After that I was like "I'm very stupid, what's the point ? Just go to bed".

But it was a great moment and I felt like a normal person for a few hours. There were no more consequences a few days later.

 

Sorry Foncky : do you really think it's not dangerous? I read one time that a guy has spent like 4-5 hours speaking during a 10 days or a month or so what, and he had a spike and his H has worsened. I just remember that he was talking with the phone directly on his ear, which I don't make, I only use speaker at the lowest volume.

 

With the speaker at low volume, really it's fine to me, as long as you don't do it every day for so long.

 

Oh yes, I do understand, but I think voices are not dangerous except if people are screaming at you. I prefer spend 3 hours talking with a real person than on the phone, I will be less concerned. Everything "natural" is not dangerous. But anything involving waves, elecronic devices ar not good. Do you have H too? Does it occur for you to talk on the phone too?

 

Yes I have T + H, but my H is not too horrible, what is worst for me is having reactive T, where I hear unmaskable T over top of everyday sound, and music does not sound good anymore.

 

We were 4 persons at diner so that's a lot...

I have severe H. I use the phone yes, speaker at low volume. No way I put that next to my ear

 

Lol, me too since my onset. I'm sorry to hear that we are on the same boat. With 4 people, I have my muffs, but I need to be with people otherwise it is just unberable. I am maybe questionning too much, and I'm sorry for that too, I just need to talk to someone as I'm not feeling good.

 

Good, take care of your hearing by protecting it. Reactive T, is in general caused by H.

 

Be careful not to overprotect your hearing, it actually makes hyperacusis worse.

 

yes but only very temporarily...this is totally reversible.

Not like noise induced T

so why even worry about ?

 

I'm pleased this is your experience, but not true for everyone, for most people I have spoken to and also the audiologists I have seen all regard it as self-fulfilling, with ever increasing over-protection causing ever worsening hyperacusis.

 

Instead of quoting "people who you may have spoken to" why not showing us a real study or scientific proof that hyperacusis caused by overuse of hearing protection can be permanent.

Unless you can proove us wrong, since the invention of ear plugs and ear muffs a few centuries ago, there are no such known effect of causing any permanent, irreversible change in hearing or hyperacusis. There are no studies or data that mention anything like that.

If that would be true, we would at least need a written warning on ear plugs package saying " using plugs in silent environment (sleep etc..) can cause permanent hyperacisus"

 

I never claimed it to be permanent or irreversible. I was just offering a bit of friendly advice so as to not worsen anyone else's situation by making a poor decision in a panicked state. Since you ask for some sort of evidence for this, I have included a link to and excerpt from the British Tinnitus Association:

https://www.tinnitus.org.uk/hyperacusis

Ear protection
One common feature of people with altered sound tolerance is that they try to avoid loud sounds. Although this may seem like a commonsense precaution, it can turn out to be counter productive and can make you even more sensitive to sound. As people avoid sound their environment becomes quieter and the auditory system becomes more sensitive to sound because of this lack of sound input.

Ear protection should not be used for normal day-to-day activities. Whilst it is understandable that people may wish to use ear plugs or ear muffs when doing something such as emptying a dishwasher or driving a car, it will not help with learning to manage hyperacusis in the long term. Of course, it is sensible to use ear protection measures when doing something really noisy such as using DIY tools.

If ear protection is currently being used for everyday situations, it is important to discuss strategies for reducing their use with the hyperacusis therapist. They will have some useful suggestions and be able to provide support through what can seem like a daunting time. For advice on appropriate ear protection measures, see the BTA leaflet Noise and the ear.

 

HI Themoon,
I am sorry to hear of the difficulty that you have been going through over the past year. I feel that things will improve for you but It does take time. When I first got tinnitus many years ago I also had very severe hyperacusis which is now completely cured. Even though my tinnitus increased in 2008 due to noise exposure my hyperacusis did not return. I will be writing about hyperacusis in more depth since I have an idea what this condition can do to a person when it is very severe. I hope my experience will be of help to others that are concerned about hyperacusis and their auditory system.
All the best
Michael

 

I really feel for you and I think a lot of us have suffered just like this, so it will resonate with many on this forum. Try not to concern yourself with thoughts of damaging your ears, it just won't help you at all and will only re-enforce your anxiety. I would say judging from what you wrote, that you are overwhelmed with stress, and anxiety has a strong hold on you. My advice would be to get this under control as a priority. Do you exercise at all? If not I would suggest starting a morning jog routine; get out in the fresh air and work on increasing your fitness and general health. It can work wonders on your mental health with the extra serotonin production.

I know it's hard, but you have to give yourself a break. You can't constantly analyse and stress over every change that you are perceiving. It's sending you into a spiral of despair that you need to get out of ASAP. From tomorrow, get up and go for a run first thing in the morning - no matter how you feel or what your ears are doing - ignore it. When you get back eat a healthy breakfast and go about your day. Do this for an extended period of time. The most important thing is to ignore your ears completely. I don't care if you wake up and you feel awful, you must continue.

Overtime you will bring your stress down and reduce all that cortisol that is running through your veins. You can also try meditating before or after running. Sit and concentrate on your breathing, and then slowly begin to slow it down.

I came from absolute rock bottom. I dragged myself kicking and screaming back into life, and I know you can too. Go easy on yourself.

 

I don't agree with the whole"hearing protection worsens Hyperacusis"bull crap that gets spewed around a lot,it's fear mongering by the TRT people.

When I got H I was told this too and it frightened me into not using hearing protection even though I wanted to,I was painted an image of me getting worse and worse as a result so much so that I would be in total isolation.Now,I did use hearing protection at appropriate times but I did expose myself to more than I could handle in an attempt to keep my tolerances up,after I done that I just got worse and worse as a result to where I am actually living the nightmare that these TRT people told would happen if I used hearing protection.

But,and this is where it gets slightly interesting and I will see if I can find the study and post the link to read for yourselves.

But I read a study into conductive hearing loss where as the middle ear components to hearing are restricted,damaged or not working properly i.e the little bones in the middle ear.Theres a term for this type of hearing loss but I can't for the life of me remember how to spell it.
Anyway this type of hearing loss is conductive and not SNHL so the haircells and auditory nerve are very much intact and healthy.They found in a number of these patients that the cochlea began to degenerate over time from lack of input,the nerves weren't being stimulated so in turn began to degenerate as a result.Its likened to a paralysed man lying in bed all day,if the legs aren't moved and excercised regularly the muscle tissue and nerves will begin to degenerate and fade away.

Now,this makes the whole"hearing protection all day"thing sound very bad,but it isn't.
These patients had been deaf for YEARS as a result of their conductive hearing loss,some as long as 20 years.
So that's a constant 20 year timeframe of basically zero auditory input into their cochleas and it took that coupled together to see the cochlea degenerate very slowly over a very long time span.

A H patient wearing earmuffs to do the dishes or go shopping isn't going to do any harm whatsoever,the only way that it could would be if they somehow found a way to make themselves profoundly deaf and sat in a dead silent environment for over 20 years.Then and only then they MIGHT see cochlear degeneration and even at that it's not a certainty.
This is how far the whole sound enrichment/don't use hearing protection thing has been stretched.

 

Sorry Bill, but I'm going to have to disagree with you here. Firstly, most of us never get a diagnosis, so the cause of our T or H can remain unknown. Anecdotally, some may say their T or H has got worse and automatically attribute it to noise - even though wearing earplugs. The problem here is there's absolutely no way of knowing this. We could well remove the noise factor in these cases and find their T got worse anyway. There are just far too many intricate factors at play in tinnitus cases; it's an extremely complex condition.

Overprotection has never been a good idea in my opinion. This opinion is shared by the worlds experts, and they have studied this field far more than most.

I'll post some excerpts below:

Hypersensitivity to everyday sounds leads some patients to develop phonophobia - an overwhelming fear of sound or noise. Patients with hyperacusis and phonophobia often spend an inordinate amount of time monitoring sound levels in their immediate environment. Some of these people mistakenly believe that exposure to low-level sounds can cause additional damage to their hearing. A majority of patients with severe hyperacusis overprotect their ears by wearing earplugs or earmuffs (or both) much of the time. Overuse of earplugs or earmuffs (that is, daily use even when the patient is not exposed to hazardous sound levels) can lead to further hypersensitization of the patient's auditory system. A vicious cycle of overprotection- hyperacusis-phonophobia (OHP) develops. Some patients stop going to movies, restaurants, religious events and other functions because sound exposures in these environments are perceived as painful or potentially harmful. Patients have quit working because anxiety about possiblesound exposure at work was overwhelming. In extreme cases, patients become recluses, rarely leaving their homes. The vicious OHP cycle can have devastating consequences for a patient's personal relationships, self-image, lifestyle and quality of life.

And another:

One common feature of people with altered sound tolerance is that they try to avoid loud sounds. Although this may seem like a commonsense precaution, it can turn out to be counter productive and can make you even more sensitive to sound. As people avoid sound their environment becomes quieter and the auditory system becomes more sensitive to sound because of this lack of sound input.

Ear protection should not be used for normal day-to-day activities. Whilst it is understandable that people may wish to use ear plugs or ear muffs when doing something such as emptying a dishwasher or driving a car, it will not help with learning to manage hyperacusis in the long term. Of course, it is sensible to use ear protection measures when doing something really noisy such as using DIY tools.

If ear protection is currently being used for everyday situations, it is important to discuss strategies for reducing their use with the hyperacusis therapist. They will have some useful suggestions and be able to provide support through what can seem like a daunting time. For advice on appropriate ear protection measures, see the BTA leaflet Noise and the ear.

I'll post one more:

The overuse of hearing protection is almost universally discouraged based on evidence that it will lower loudness thresholds over time. Risks of overprotection include increased auditory gain, anxiety induced hypersensitivity, and reinforcement of negative associations with sound. Positive results from studies of Sound Therapy & Counseling reinforce the notion that overprotection can prevent people from building sound tolerance. These treatments emphasize a gradual increase in sound exposure rather than sound isolation. It is often recommended that those with hyperacusis walk the fine line between setbacks and overprotection rather than follow a course of isolation and hypervigilance. Practically applying this guideline is not always straightforward.

http://www.audiologyonline.com/arti...eracusis-phonophobia-tinnitus-retraining-1105

https://www.tinnitus.org.uk/hyperacusis

http://hyperacusisfocus.org/research/earplug-use-2/

 

I'm talking specifically about noise induced T and H i.e T and H induced after an acoustic trauma.

I'm not aware of your history but did you have Hyperacusis/Noxacusis or reactive T?

"Some say their T and H got worse because they were subjected to noise even though they were wearing hearing protection"

"The problem is there is no way of actually knowing this"

I have to disagree with those comments because there is a way of knowing this and it's really quite simple.
If someone gets diagnosed with T and H and there's no hearing loss found they are told they haven't damaged their hearing,but that isn't exactly true either.
They simply cannot detect the damage so they play ignorant to the fact that it's there and associate it with simply being"afraid of sound"which does exist alongside H for obvious reasons.
Most audiologist don't test the frequencies above 8,000hz but yet they take an educated guess that if these frequencies are good that must mean the higher frequencies are good too,that most certainly might not be the case.
Then there is synapses,again they can't test this so there is no way of actually knowing what damage is there but simply saying"you haven't damaged your hearing"is by no means an accurate diagnosis for them to make,all in all they only have a rough idea of your cochlear health and not the whole picture,not even close.

So then we ask how do we know if someone is getting worse?Well is your T now louder?Is the sound of the sink now causing you pain where as it didn't before?Does the noise of wind blowing sound unbearable to you where as it didn't before?These are clues to your condition getting worse but if you go for another hearing evaluation which we know isn't accurate and your told your hearing is exactly the same then your anxiety or what have you must be causing it,fight or flight and all that.

But that's an ignorant comment from audiologists,they don't even know the mechanisms behind T and H but yet they tell you your not getting worse simply because our equipment can't find anything wrong,and that very equipment can only test a portion of the true inner ear health to begin with.

My audiogram today is the exact same as it was over 5 years ago when I only had mild T,I now have crazy T and super bad H with unbearable neuropathic burning stinging pain and what am I meant to believe?That I haven't damaged my hearing?That it's my brain or auditory system making this all up?That it's on high alert?
I burst out laughing when they tell me that,I know I have damaged my hearing because everything sounds distorted but these hearing tests just keep coming back better and better everytime whilst my condition worsens and worsens in the mean time and I'm told to listen to more noise that causes me pain and worsens me yet again as a result.

The only reason cochlear H is complicated is because the inner ear is complicated and not yet fully understood.If we had the full picture of how the cochlea works the shroud of mystery would begin to dissipate along with it.

A lot of Ménière's patients experience H,viral infections cause H,SCDS causes H,Drugs that poison the ear cause H,how do they explain all that?
Also note that noise induced H patients have been properly diagnosed with auditory dys-synchrony which is a malfunction of the auditory nerve,why are all these things just brushed aside after someone comes down with H from noise?Why is it immediately associated with the brain?
It's simply because they can't find what's wrong and as I said above that doesn't necessarily mean it's not there.

 

Thank you Mickael for your warm words, gave me some comfort.

Indeed, it does take you in very dark places.

 

I agree with you @Bobby B. Protection is the best to do whwn you have some moderate til severe hyperacusis. The less tolerance you have, the more you have to protect yourselves.

 

Aaaaaaaaaaaw thank you @Ed209 for your nice words and for also pushing me to try. Anxiety and sadness came back in full force the previous days, I'm craving for spending the whole day outside. I'm so traumatized by all what happened and especially, the physical pain it brought, that even at night I have vivid dreams of my memories and waking up to realize the current situation.

I agree with you on cortisol, and I know it can play a role. I just came from a long sustained walk outside, with muffs on after reading your post. It gave me some POWER, some STRENGTH. I used to exercise a lot before my onset (like a lot of people here), but H is a real burden. But I'll try I promise (even with my plugs, and my muffs on, i have to be careful though, sudden noise can happen anytime).

 

@bill 112

There's a lot of grey area with tinnitus. I'm aware of everything you wrote; although, you could throw in an ABR test to check the wave functions, in particular waves I and V. This may give an indication of hidden hearing loss if there is a reduced peak in wave I.

My point was mainly towards people who have already acquired tinnitus/hyperacusis. If no cause can be found (tests are scarce unfortunately) then the most likely cause is acoustic trauma, especially if you are around noise a lot. This in not a guarantee of the cause though, it's the most likely, but some people will fall through the net with other undiagnosed problems.

The vast majority of tinnitus sufferers then go on to develop extreme anxiety, and chronic stress, which exacerbates the problem. In some instances what can be perceived as the condition worsening is actually the anxiety worsening. Our auditory system is very much affected by our mood, and we can experience varying degrees of internal noise in our head on any given day. Sometimes - not all the time - I think people get so obsessed by this condition that they end up monitoring their ears every time they hear something. Every little sound has to be inspected and analysed; stress levels become so high that the senses heighten everything anyway. It's a viscous circle of absolute despair. This is not normal behaviour and is a recipe for disaster. You will end up with OCD and depression on top of all your other problems.

On the flip side: of course noise can make it worse; especially if sensible precautions aren't taken.

Having read literally hundreds of stories on here, I'm convinced that a lot of you have anxiety and stress issues first and foremost.