My Story. Feel Like I'm Slowly Losing the Battle.

[Karel]

Hello, everyone. I've been suffering from Tinnitus and Hyperacousis (guess we just call them T and H here) for over three years now, but this is the first time I'm actually joining a site like this. I will share my personal story and I hope that maybe some people whose situation is similar to mine have some advice or tips they can give me, because I find it harder and harder to deal with this alone and the doctors are no help at all.

First some background info; I am a male, 36 years old now, living in a country in Western Europe. Never had any hearing problems until about four years ago. It all started because I got in a situation where some woman on a megaphone standing right next to me yelled in my right ear with it. The sound was unimaginably loud and my ear literally felt like it was burning. It couldn't have lasted more than ten seconds in total though, so I figured that although highly unpleasant, it wouldn't do any permanent damage.
A few days later I noticed I had a sound in my ear that was always there. I went to the doctor and also a specialist and after some tests they told me it was Tinnitus (and I realized I also had mild Hyperacousis) and that it wouldn't go away anymore. It upset me to hear that I had suffered an injury that would be with me for the rest of my life, but the actual sound was not very loud. It was just a small sound in the 'corner' of my ear, and I could still sleep. So I quickly learned to accept it and even started to not think about it much anymore.

Until about one year later I went to a really loud party. I knew I had to be careful with sound but even in the noise my ear felt fine, didn't start hurting or anything, and when I went to the bathroom (quiet place) my T also didn't seem louder than it normally was. So I figured it'd be fine and just had some drinks and enjoyed myself. This was, by far, the biggest mistake I ever made in my whole life.
When I woke up the next morning the first thing I noticed was that my T had gotten much, much worse. Of course it's all subjective but I'd say it got five times as loud as it was before, at least. Also there's more different sounds, not just one but a mix of several. My H got a similar boost, a lot more sounds got a lot more unpleasant to be exposed to.

I got very depressed after this. Now my T and H were no longer just sidenotes but things that started to really limit me, a lot. It became difficult for me to fall asleep, and I wake up many times every night (I've always been a light sleeper). I haven't had a single night of good sleep in over three years now. Alcohol and sleeping pills (never at the same time of course) could help me fall asleep but that still doesn't count as a 'good' sleep, I'd still wake up at like 5 AM not feeling refreshed.
And of course I always have to be very careful with sound now. Things like parties, discos or cinema are totally out of the question. And when I'm outside I always need to look around for speakers, boxes, fireworks, anything that could suddenly make a lot of noise. Listening to music (something I used to love to do) I can only do on low volumes which makes it almost not worth it anymore. It's very draining, physically and emotionally, because the problem is always there and never goes away, not even for a second.

Still, I more or less found a balance again, a way to cope and even somewhat enjoy my life, perhaps not as much or as easily as before, but still. That was my situation until about a week ago.

I met someone very interesting, a girl, and we started talking on the phone a lot. Like.. four or five hour long talks, a couple of days in a row. Even with my T and H I can still talk on the phone (just can't hear the other person speak if I'm still talking myself, but such small things I don't even think about anymore), I just hold the phone only next to my 'good' ear (my T is in the right one) and keep the volume down. That was always fine. However, I normally don't talk on the phone for more than an hour tops, these talks were much longer and every day and after a few days I realized my T and H were getting worse. As soon as I noticed what was happening I switched to using the phone only in speaker mode, on the lowest volume setting and a good distance away from me, but it seems the damage has already been done. Especially my H has gotten worse, sounds are even louder than they already were and my ear has started hurting all the time now. (It used to do that only occasionally before.)

I can't really sleep at all anymore now. The sound that's louder than ever, the pain in my ear, but also the feeling that this really is going to end me keep me awake throughout the night. If my T and H don't at least recede to their old level, and it's been a few days now so more and I more I worry that that won't happen anymore, I don't think I can keep living my life the way I did these past years. I am first going to lose this wonderful new girl I met, then my job, and then my health and everything else, I fear. I'm in a constant state of anxiety and fear and I have never felt this bad and hopeless in my life. It seems like there's just no stopping this, this bizarre terrible affliction, every time I find a way to manage something happens that exacerbates my condition and I'm back at square one, or even worse really.

Despite that dark feeling I don't want to give up just yet. I went back to the doctor again, he simply said there are no proven treatments for either Tinnitus or Hyperacousis (not even to alleviate the symptons), so yeah, that was a huge help! He also wasn't able to explain why a small sound, even if it lasts for hours, could make my problems permanently worse, something I still really don't get. How could a phone on low volume at my left ear damage my right ear? Or perhaps my left ear was always damaged too but I just never noticed it because the right one is much worse..
I made an appointment with a specialist at the hospital, but I went there before too, and I expect he'll say the same thing he did last time too ("just try to get used to it").
What puzzles me is that I can find information about many different treatments for both T and H, on this site and many other places, yet both my doctor and the specialist in the hospital can't think of anything to even try. (Well, they said they could arrange a talk with a psychologist for me..) Maybe it's just me but I think it's very odd that in 2016 established medical science still doesn't even have a single partial treatment for either T or H (or at least not in my country).

Anyway, it seems I have no choice but to start looking into the various treatments that can be found online, and just try some things out for myself. I want to try one last time to find a new balance and at least got the life back that I had the last few years. If I could just get that back, that'd be good enough, sort of. But the way I've been the last few days... there's no future anymore this way.

So yeah, that's my story. Was in the wrong place at the wrong time, made one terrible mistake, and now I worry I'm going to succumb to a sound that's not even really there.

Thanks for reading my long rambly story. I welcome any advice or tips people might have, or insights from people who have experienced things similar to me. I still have hope that there's something, somewhere that can be done.

 

[TC426]

Hi Karel

Very sorry to read about your struggles. I wish you lots of strength!
It is hard to believe that a phone call (!) could cause any long-term negative impact. I believe that you have good chances that things will settle over the next days and weeks.

What puzzles me is that I can find information about many different treatments for both T and H, on this site and many other places, yet both my doctor and the specialist in the hospital can't think of anything to even try. (Well, they said they could arrange a talk with a psychologist for me..) Maybe it's just me but I think it's very odd that in 2016 established medical science still doesn't even have a single partial treatment for either T or H (or at least not in my country).

I could not agree more. For me, with a non-medicinical background, it was also amazing to learn that there is no treatment available for this s**t we are suffering from. Depending on the country you live in, however, you may have the chance to enter a "tinnitus clinic" for a stationary treatment. If you can, give it a chance.

Meanwhile you may want to look into some videos of Julian Cowan Hill:

Was in the wrong place at the wrong time, made one terrible mistake, and now I worry I'm going to succumb to a sound that's not even really there.

That is the frustrating part. You can take care of your ears a whole lifetime, but one small mistake is enough to fall in this big black hole. Meanwhile, you see people in the streets, listening to their headphones at insane levels of volumes...day in day out. And they get away with it . Not that I wish anything bad to them, but it is just not fair...

 

[Karel]

Hi Karel

Hello TC, thank you for your reply.

Very sorry to read about your struggles. I wish you lots of strength!
It is hard to believe that a phone call (!) could cause any long-term negative impact. I believe that you have good chances that things will settle over the next days and weeks.

Well to be fair, it was a series of hours-long phonecalls. But yeah, it's still something I did not expect to be dangerous. That's one of the messed up things about this condition, I'm never sure what's gonna make it worse next, what sounds are safe and what sounds are threats.

I could not agree more. For me, with a non-medicinical background, it was also amazing to learn that there is no treatment available for this s**t we are suffering from. Depending on the country you live in, however, you may have the chance to enter a "tinnitus clinic" for a stationary treatment. If you can, give it a chance.

Yeah, I heard about that and I might try something like that. It's just bizarre that the regular medicine has like no options, this is a serious condition that a lot of people really suffer from a lot.

Meanwhile you may want to look into some videos of Julian Cowan Hill:

Thanks, I'll check that out. Right now it's more H bothering me than T but anything can help.

That is the frustrating part. You can take care of your ears a whole lifetime, but one small mistake is enough to fall in this big black hole. Meanwhile, you see people in the streets, listening to their headphones at insane levels of volumes...day in day out. And they get away with it . Not that I wish anything bad to them, but it is just not fair...

Yeah.. indeed. So many people in such loud noise and it doesn't bother them at all. Sometimes so weird to see. Of course, I was like myself that only four years ago, though it already feels like much longer now..

Edit: Hm, I'm sure there was another post here! Now it looks like I'm talking to myself, haha..

 

[Bobby B]

My advice would be to give your ears healing time by wearing ear protection as much as possible unless you are in a situation were sound is controlled - like in an office or at home. And do it for 6 months at least

I mean use big earmuffs in public transport , restaurants , while driving etc.. Anytime there may be sound over 60db or use ear plugs if you care so much what other people may think.. But it seems that you are past this level already

I believe that H comes from nerve damage and this can improve to a degree but can also very quickly get much worse if the nerves are still damaged - as you experienced it

Another strategy to add is to try light therapy - LLLT or led etc.. This has many studies showing that light can help heal nerves and help H - it did help my H I got from shooting firearms - rifles and machine guns

 

[Bobby B]

And Cowan Hill - he makes it sound like T can simply go away by using some relaxation methods but his T is not from acoustic trauma at all, I think he mentioned stress/ anxiety as cause so I would not waste my time with his videos in your particular case it's different

 

[drox]

Hi! I had a hearing loss and worsening of tinnitus after a phone call too but I also think that I have fragile ears for whatever reason... Perhaps stress/depression is a contributing factor! Are you anxious or under chronic stress or depression? I also thought about micro waves of the phone even if it seems unlikely to damage nerves but who knows...

 

[Karel]

Hey guys, thanks for the replies.

My advice would be to give your ears healing time by wearing ear protection as much as possible unless you are in a situation were sound is controlled - like in an office or at home. And do it for 6 months at least

I mean use big earmuffs in public transport , restaurants , while driving etc.. Anytime there may be sound over 60db or use ear plugs if you care so much what other people may think.. But it seems that you are past this level already

I bring earplugs with me wherever I go but I don't normally put them in. Because I read that trying to block too much outside sound can actually makes H worse too..

Another strategy to add is to try light therapy - LLLT or led etc.. This has many studies showing that light can help heal nerves and help H - it did help my H I got from shooting firearms - rifles and machine guns

Yeah, I read about LLLT somewhere else on this forum. It's on my "things to look into further / try" list. Glad to hear that there's some things that work for some people anyway.

And Cowan Hill - he makes it sound like T can simply go away by using some relaxation methods but his T is not from acoustic trauma at all, I think he mentioned stress/ anxiety as cause so I would not waste my time with his videos in your particular case it's different

Yeah, I noticed that too. There seems to be a lot of advice about treating T caused by depression, anxiety, sudden life changes etc, but none of that is really relevant for me, my T is simply a 'mechanical' problem. Or started that way anyway, of course it is bringing me down more and more now.

Hi! I had a hearing loss and worsening of tinnitus after a phone call too but I also think that I have fragile ears for whatever reason... Perhaps stress/depression is a contributing factor! Are you anxious or under chronic stress or depression? I also thought about micro waves of the phone even if it seems unlikely to damage nerves but who knows...

I'm starting to think I have super vunerable ears too. Can't believe just talking on the phone, even for hours, could make my condition worse. Now I know I guess, but just like before, too late..
The phone call that made your situation worse, was it very long and/or loud?
I was actually feeling pretty good right until this happened. Now, not so much anymore, to put it mildy.
Dunno about micro waves.. at this point I'm not sure of anything anymore, even though I've had this affliction for four years in many ways it's still a mystery to me.

 

[RB2014]

I can't tell you how to make it better, but I can tell you how to keep it from getting a lot worst. I would first begin by purging all emotion. I have felt like you, but having fear and anxiety only makes things worst. This is not the most popular answer, but you must just accept the T and not react to it. In my experience anxiety only makes H worst. Go to sleep with the T and just accept that it is there and that its not going to go away until you start accepting that it is there. In time, hopefully these things work out themselves if you can keep going. Ideally if you just slow down, you can hopefully get back to your old self again.

 

[Bobby B]

I read that trying to block too much outside sound can actually makes H worse too..

Where did you read that ? There is no scientific study that mentions anything like that , in fact even wearing plugs will not block sound it only decreases it - if you stay in an average noisy restaurant 70 - 80db you still get 40 - 50 Db wiht plugs which is enough sound or about what you get inside a quiet office

The Brain perception of sound will be temporary if you remove the plugs it's back to its normal level

Does staying in a quiet 10db bedroom for 8 hours increase H ?

 

[RB2014]

I read that trying to block too much outside sound can actually makes H worse too..

Where did you read that ? There is no scientific study that mentions anything like that , in fact even wearing plugs will not block sound it only decreases it - if you stay in an average noisy restaurant 70 - 80db you still get 40 - 50 Db wiht plugs which is enough sound or about what you get inside a quiet office

The Brain perception of sound will be temporary if you remove the plugs it's back to its normal level

Does staying in a quiet 10db bedroom for 8 hours increase H ?

Not sure if it is true or not, but I have read that too. It could have something to do with the fact that you are distorting the sound coming in, but your argument also makes sense. I'm pretty sure earplugs are going to block the high frequency sounds more than the lower frequency. This may not be a good thing.

I think the safest thing to do is to stay in quiet places and allow sound to naturally enter your ears.

 

[GregCA]

Does staying in a quiet 10db bedroom for 8 hours increase H ?

Not for me.

 

[Bobby B]

the "sensitivity " effect is only temporary / sure it's more comfortable to not wear plugs or muffs and be in quiet places at all times but in practice it's impossible unless you plan on spending the rest of your life holed up inside your house

the only study that comes close is the one where they had people wear a silicone ear plug all the time 24 H for a whole week and some People developed tinnitus but it was temporary for all people as it dissapeared once the plug was out

 

[Karel]

I can't tell you how to make it better, but I can tell you how to keep it from getting a lot worst. I would first begin by purging all emotion. I have felt like you, but having fear and anxiety only makes things worst. This is not the most popular answer, but you must just accept the T and not react to it. In my experience anxiety only makes H worst. Go to sleep with the T and just accept that it is there and that its not going to go away until you start accepting that it is there. In time, hopefully these things work out themselves if you can keep going. Ideally if you just slow down, you can hopefully get back to your old self again.

Thank you. Yes, I know that that's key, giving T attention makes it worse. But it's not really the T that bothers me now, I've more or less gotten used to falling asleep in noise, but the H, specifically the tense and painful feeling in my ear. Though I think it's less severe than it was yesterday.. been trying to avoid sound as much as possible and maybe that's helping..

I read that trying to block too much outside sound can actually makes H worse too..

Where did you read that ? There is no scientific study that mentions anything like that , in fact even wearing plugs will not block sound it only decreases it - if you stay in an average noisy restaurant 70 - 80db you still get 40 - 50 Db wiht plugs which is enough sound or about what you get inside a quiet office

The Brain perception of sound will be temporary if you remove the plugs it's back to its normal level

Does staying in a quiet 10db bedroom for 8 hours increase H ?

I had to search around a bit but I found it, it's on the Dutch Wikipedia site in the Hyperacusis article. Unfortunately it doesn't give a source and I can't find the same in the English article, so I guess it might just be something someone made up. On Wikipedia you're never entirely sure.

 

[christinefisher]

I know it's been a while since your last post and I really hope you feel already better! I think almost all of us here had the same phase of depression.. With the same questions 'why to me?' 'how happened?' 'there is no cure ?!?!'..
My T was caused by the gun shot effects at a theatrical play.. What a silly way to create such problem.. I am lucky to still suffer only at nights.. At first it was hard, I was waking up and try to see if it was there and I cried and it was worse,, my family could not understand me.. This forum helped me a lot though for not feeling alone., for being able to talk and be understood,,
So step one is to stay positive and calm down as much as possible. As long as we are alive our lives are ours and we should not allow to any illness to control them!
And something else.. I am not an expert of course or a doctor.. It's only a guess.. I think that it was not the mobile/phone itself that caused the increased T, but the increased anxiety and adrenaline of these days .. Yeap, you may be in love with this girl and symptoms of it are anxiety feelings, faster heart rates, increased blood pressure etc,, all these symptoms unfortunately make T worse ! So, try to see this as a side effect of a very beautiful feeling

 

[Karel]

I know it's been a while since your last post and I really hope you feel already better! I think almost all of us here had the same phase of depression.. With the same questions 'why to me?' 'how happened?' 'there is no cure ?!?!'...

Hello Christine, thank you. It's been a month now since this happened to me and I would have liked to write something now along the lines of "it's all gone back to normal, phew, that was quite a scare!!" but unfortunately both my T and H are still worse than ever and haven't really gotten much better. I'm still hoping I'll recover, at least partially, but seems it will take months, if it will happen at all...

My T was caused by the gun shot effects at a theatrical play.. What a silly way to create such problem.. I am lucky to still suffer only at nights.. At first it was hard, I was waking up and try to see if it was there and I cried and it was worse,, my family could not understand me.. This forum helped me a lot though for not feeling alone., for being able to talk and be understood,,

Yeah, that's a crazy way to get T too.. but there's all kinds of stories of people here getting their hearing damaged in all kinds of strange ways, from exploding car engines to flying with a cold to side effects of medication... I never had any idea the ears were so vunerable before all this happened to me! I really think they should teach that in schools, so less of us will have to discover this vital information the hard way!

So step one is to stay positive and calm down as much as possible. As long as we are alive our lives are ours and we should not allow to any illness to control them!

Yes, I'm trying to stay positive but it's not easy. I had mostly habituated to my old T but this new one is a lot louder so it wakes me up all throughout the night again, my H is much stronger so even sounds like the buzzing of the fridge at the other side of my apartment bother me, and physical pain is a new component for me too, one I really could have done without. But yeah, gotta try to keep going somehow, can't just give everything up. But at the moment it's a struggle every day..

And something else.. I am not an expert of course or a doctor.. It's only a guess.. I think that it was not the mobile/phone itself that caused the increased T, but the increased anxiety and adrenaline of these days .. Yeap, you may be in love with this girl and symptoms of it are anxiety feelings, faster heart rates, increased blood pressure etc,, all these symptoms unfortunately make T worse ! So, try to see this as a side effect of a very beautiful feeling

hehe, yeah, I know strong emotions can exacerbate (or apparently in some cases even cause) T, but I think in my case it really was simply sound that caused it. I got my T&H from a short but insanely loud sound, then it got much worse from a very loud, several hours long sound, and now it got worse again from a not very loud but many many hours long sound.
I still talk with that girl and on the one hand that's a huge boost to my mood, she's very supportive about my condition and always tries to cheer me up. But it also really makes me worry, if this somehow gets worse again I might lose everything including her... All the more reason to not give up though.. I just gotta be even more careful, and hope for the best, I guess..

 

[christinefisher]

I am sorry to hear you still feel that bad I really wish the best for you and soon get relief and T be less noisy and disturbing.. I am sure that if you stay positive things will go better and enjoy your life no matter of this annoying problem we all face

 

[Karel]

I am sorry to hear you still feel that bad I really wish the best for you and soon get relief and T be less noisy and disturbing.. I am sure that if you stay positive things will go better and enjoy your life no matter of this annoying problem we all face

Well actually my H bothers me more than my T. My T only really troubles me at night, my H troubles me all day, and causes my earpain too (I think). But yeah, I'm trying to stay positive. I'm still hopeful it'll recede again eventually even though it's taking longer than I'd like, and/or that I can habituate again. And if all else fails I will try TRT. And keep waiting for science to finally invent a (partial) cure of course, though I know that will likely take several more years at the very least..

 

[Sebastians]

My (mild) H went down significantly after i started wearing my filtered earplugs for outside environments.. And at the office i just take them out. Sometimes use them in the car as well.
If your ears are in pain, it's your body telling you to go easy on them for a while, don't buy into the overprotection BS some TRT people try to sell you.

 

[Karel]

My (mild) H went down significantly after i started wearing my filtered earplugs for outside environments.. And at the office i just take them out. Sometimes use them in the car as well.
If your ears are in pain, it's your body telling you to go easy on them for a while, don't buy into the overprotection BS some TRT people try to sell you.

Well, I don't know. I think it makes sense what they say; if one starts blocking all kinds of (normal level) sounds that would make the ear less used to those and thus even more sensitive, right? Currently I don't wear earplugs (always have them with me though just in case) but I just put my finger in my ear whenever there's a 'risky' sound nearby, such as a truck driving by past me or something.
I also can't find any real relation between sound and my earpain, this morning I was in a quiet office all morning but my ear still hurts, and sometimes the pain even wakes me up in the middle of the night where there's pretty much no sound at all.
But I guess I could try wearing an earplug for a few days and see what that does for me, if it makes any change, either for better or for worse.

 

[Sebastians]

Sure, normal level sounds are probably okay. I just wanna avoid stressing over cars honking, ambulances passing by, 90db trams/metro/buses etc.
I sometimes get a bit of earpain in the middle of the night as well, or when it is quiet. I guess it is a bit like a toothache, always much worse at night when lying down. The feeling of 'tired ears' after a day outside went away though as well as my sound distortion after i started protecting my ears in outside places and on the train.