Hearing Loss and Severe Tinnitus — From Loving Life to Suicidal in 2 Months

[gameover]

Maybe I need to take another break? I don't really think spending time on Tinnitus Talk is making my symptoms worse, on the contrary, the success stories give me hope and keep me alive. On the other hand, I am even more confused now what is the cause, what is the effect. It seems indeed tinnitus and hyperacusis have a mind of their own. But when I was less here, I felt better, so another break is in order perhaps.

I will be doubly vigilant going forward about protecting and again try focusing on the current moment. Whenever I think about the past I am sad. Irrational, as my therapist told me - my past life was a happy life, I should be happy to have had it! He has a point. Whenever I think about the future I am terrified. There is a good reason to be, but then we do not know what the future brings or how much of it will be there, so maybe best not to think about it either.

I am really thankful for all the words of wisdom, encouragement and support I am receiving here from many folks.

Hang in there fellow sufferers. I will try as well. I will be back.

 

[Stayinghopeful]

I just want to chime in here and say that if anyone is thinking of booking and appointment with Myriam Westcott, I highly recommend it!

She's a very intelligent and wonderful person to talk to, you can tell she cares deeply.

I know she's helped me greatly when I was in my worst state.

I'd have a chat with her if I were you @gameover.

 

[gameover]

My tinnitus is getting way too loud. I had a loud night, woke up, and I just know I can't deal with the volume for too much longer. This is officially catastrophic tinnitus.

Will it be some days, weeks, or a couple of months? Not sure now. For some days I've been composing my final words in my head. I am resisting writing them down, like I've been resisting acquiring the means of doing it. These thoughts do scare me, I abhor it, I truly loved my life. The more I think about my life, I really regret little, heck I regret nothing, except this one thing I did that caused my tinnitus.

But I will write them down, I think I have something to say, and even ways to get my words out there. I am not saying I am super important or that I will make front pages, but I think I can reach some decent number of people due to where I work. The awareness of this condition needs to be improved. I feel I might save some people. No, I am not pretending I will be sacrificing myself, my primary motivation will be admittedly "selfish" as I will be ending my suffering and, which is the worst, creating suffering for my loved ones, but at least there will be some added utility from it.

I do not understand God. He either wanted this (really, maybe the above being my ultimate purpose, really cruel), he is incapable of helping me, or simply does not exist.

P.S. I will be repeating it ad nauseam. It has nothing to do with my emotional state. I am staying relatively calm, just tired and resigned. It is just too loud.

I truly realize now how unjust and wrong labelling this as a mental issue is.

 

[haha ear go eeee]

Good luck with the effort LOL!

No need to be a dick, dude. We deal with enough shit in our lives to be rude to each other.

 

[gameover]

I am a little better in the afternoon, but the tinnitus level is very high, pretty much as bad as mornings spikes used to be until now. The hyperacusis is elevated, but not at its worst.

I did nothing different in the last 1.5 months vs. what I did like April-June. The flight/vacation in early July was the only deviation from the norm. Which has been: mostly at home, occasional drive for a coffee, walk or therapist visit, a house for sale visit. I have definitely done fewer things in recent 1.5 months than like in May/June. I remained diligent about protection (always outside, unless in the woods).

There may be two unusual events: ENT visit three weeks ago that involved audiogram/speech test using earbuds and not over the ears headphones. I did not like it, but they assured me it will be quiet, and it was. But I think two days later I started feeling faint burning sensation more often in my ears, something I only felt maybe twice several weeks earlier. In the previous week I went to two outside parties. Not loud, but there was some talking, and I removed earplugs for part of the time. It was not really louder than other in-person discussions I had with some people in meantime.

I really see no cause or trigger for my worsening, except maybe the audiogram test. This is insane. I want to live, but I if my days will be like today's morning was - or worse - there is no way to live with it.

 

[ECP]

I really see no cause or trigger for my worsening, except maybe the audiogram test. This is insane. I want to live, but I if my days will be like today's morning was - or worse - there is no way to live with it.

It's great that you were feeling a little better as of this afternoon. Try to focus on the positive if you can. As for the unknown factor that led to the worsening, I don't know what to tell you, except that tinnitus and hyperacusis are so mysterious that it isn't always possible to assign a clear-cut cause for every effect.

I, too, get some improvements and some spikes, and it's not always obvious why. Maybe the time lag between cause and effect is longer than we think, and that makes it harder to figure out what's going on.

The uncertainty used to bother me a lot, but the longer I deal with this, the more I see that it's not always crucial to make sense of it. It's been a hard road, accepting that some things are beyond understanding, as I'm a very logical person who wants to make sense of everything in life and I'm not comfortable accepting the idea that some things can't be understood or controlled. In my darkest hours, I feel very upset about it, but when I'm feeling a bit more optimistic, I tell myself that there's a lesson in all of this, and the lesson is to soldier on, even when things are beyond rational understanding.

@Juliane once asked in a profile post what role the ego has to do with acceptance of tinnitus and hyperacusis. I don't really know the answer to that, except that the more I accept a certain amount of uncertainty, the less distraught I feel. Accepting uncertainty isn't the same as admitting defeat. It's just acknowledging that some answers or solutions are a little slower to come than others, no matter how intelligent or diligent we are.

I apologize in advance if this post isn't as comforting as I intended it to be. All I'm saying is that uncertainty appears to be part and parcel of the journey and that it's probably quite normal to dwell on it.

I wish you and me and everyone else reading this a return to robust health.

 

[haha ear go eeee]

I am a little better in the afternoon, but the tinnitus level is very high, pretty much as bad as mornings spikes used to be until now. The hyperacusis is elevated, but not at its worst.

I did nothing different in the last 1.5 months vs. what I did like April-June. The flight/vacation in early July was the only deviation from the norm. Which has been: mostly at home, occasional drive for a coffee, walk or therapist visit, a house for sale visit. I have definitely done fewer things in recent 1.5 months than like in May/June. I remained diligent about protection (always outside, unless in the woods).

There may be two unusual events: ENT visit three weeks ago that involved audiogram/speech test using earbuds and not over the ears headphones. I did not like it, but they assured me it will be quiet, and it was. But I think two days later I started feeling faint burning sensation more often in my ears, something I only felt maybe twice several weeks earlier. In the previous week I went to two outside parties. Not loud, but there was some talking, and I removed earplugs for part of the time. It was not really louder than other in-person discussions I had with some people in meantime.

I really see no cause or trigger for my worsening, except maybe the audiogram test. This is insane. I want to live, but I if my days will be like today's morning was - or worse - there is no way to live with it.

Are you noticing any TTTS symptoms? Any fluttering, thumping, or itching in your ear? Burning is sometimes a symptom of trigeminal nerve sensitization that stems from middle ear involvement.

 

[gameover]

It's great that you were feeling a little better as of this afternoon. Try to focus on the positive if you can. As for the unknown factor that led to the worsening, I don't know what to tell you, except that tinnitus and hyperacusis are so mysterious that it isn't always possible to assign a clear-cut cause for every effect.

I, too, get some improvements and some spikes, and it's not always obvious why. Maybe the time lag between cause and effect is longer than we think, and that makes it harder to figure out what's going on.

The uncertainty used to bother me a lot, but the longer I deal with this, the more I see that it's not always crucial to make sense of it. It's been a hard road, accepting that some things are beyond understanding, as I'm a very logical person who wants to make sense of everything in life and I'm not comfortable accepting the idea that some things can't be understood or controlled. In my darkest hours, I feel very upset about it, but when I'm feeling a bit more optimistic, I tell myself that there's a lesson in all of this, and the lesson is to soldier on, even when things are beyond rational understanding.

@Juliane once asked in a profile post what role the ego has to do with acceptance of tinnitus and hyperacusis. I don't really know the answer to that, except that the more I accept a certain amount of uncertainty, the less distraught I feel. Accepting uncertainty isn't the same as admitting defeat. It's just acknowledging that some answers or solutions are a little slower to come than others, no matter how intelligent or diligent we are.

I apologize in advance if this post isn't as comforting as I intended it to be. All I'm saying is that uncertainty appears to be part and parcel of the journey and that it's probably quite normal to dwell on it.

I wish you and me and everyone else reading this a return to robust health.

Thanks. I knew nothing in life was certain, but I guess I lived as it was. Well, I hoped nothing debilitating will happen to me, or if it happens it will much later and I will die because of it. In my worst dreams I have not anticipated this. If got Parkinson's or Alzheimer's - well probably nothing I could have done. In my case I could have 100% prevented it. I just did NOT know the danger existed. My death certificate should read "died by tinnitus & hyperacusis", but perhaps it would be even more correct to read "died from ignorance".

It is hard to focus on positive when I am now convinced I am on a downward trajectory. My fears come true. Obviously it can get worse and worse, but that's hardly any consolation.

I really just reached a point where I do not want live like this anymore. Tinnitus is just too loud, hyperacusis is too acute.

Are you noticing any TTTS symptoms? Any fluttering, thumping, or itching in your ear? Burning is sometimes a symptom of trigeminal nerve sensitization that stems from middle ear involvement.

I had some thumping in right ear recently, but has not happened in a few days now, no itching. Burning started to appear in both recently, but still rather infrequent. I really do not think I have TTTS. I simply massacred my cochlear hair and/or synapases.

I don't know what is causing the worsening. Either my ears are really super delicate, or the synapses keep dying.

 

[gameover]

I have been having new weird dreams, sometimes scary, for some time. In the past I rarely had bad dreams, if I did, usually associated with some strange place or what felt like school trauma, often with a recurring pattern/place. I am not taking any meds (never did).

Now they are strange. Recently I saw my grandparents (passed away for several years). My grandpa looked scary and terribly suffering.

In last night's dream I brought my car to some unidentified car place, don't know for what, but I was leaving. In order to leave I had to climb (myself, not in the car) some metal structure probably 2 stories high. Strangely enough, I think my car was parked at the top of the structure, at least was supposed to, I did not see it. Anyway, as I was climbing it on one side, there was another guy, I think a customer, too, climbing it on the other side. I even noticed he had some steps on his side, I was missing on mine, and I thought, damn I should be climbing on his side and was going to come down and try the other side. As I paused, he managed to reach the top above me, and then he fell down hitting the ground violently behind my back. I did not see him lying down, but I knew he is badly injured if not dead. I started slowly going down and as I managed to get close to the ground I got ambushed by a mad cat (I think one of our cats in real life). I think I managed to punch the cat away after a short fight.

Then I think I heard some voice, like a narrator say, "he came 40 years old and left 40 years old, and he came 40 years old and left 80 years old". It sounded like I was the former (in the dream). I then woke up, heard my blaring tinnitus and began to cry. I do not attach much meaning to dreams, but I don't like them, they disturb me. But I was thinking I was the 80 years old as I was crying.

I do not think I ever wrote down any of my dreams. My morning spike is indeed bad, but not the worst kind, like 2 days ago. It is horrible still.

 

[gameover]

My post above may suggest I am losing grip on reality. No, it's just a weird dream, that's all.

Quick update: fluctuations. Tinnitus is severe, backed off from catastrophic level. Hyperacusis tends to stay high, too, which is wearing me down. I mentioned it in one of the profile posts, one change I did I went back to supplementing B12. My blood work a few months ago showed levels at the low end of the correct range. I have no idea if B12 started helping, or it is just "normal" fluctuations. Overall I am really afraid I am trending in the bad direction, very sadly.

I talked to a friend who got tinnitus/hyperacusis this year (the one who got it after my warning, but later admitted he had a very mild tinnitus for some time). The guy just called me after wind surfing today, which apparently spiked his tinnitus, so he remembered about me. He went racing his car on a track last weekend. He is going camping this coming one. He says the tinnitus is "annoying" and sometimes interferes with understanding speech. Makes me wonder how loud his is. He says hyperacusis got better for him, though tends to spike with a delay of a day or so, and earlier it seemed instant (wrt to sound).

Some people clearly cannot be stopped and have immense mental capacity to deal with crap. He has been dealing with various debilitating health issues most of his life, maybe that's the difference. I was 99.9% healthy always. Never broke a bone, never any allergy of any kind, etc, etc...

 

[gameover]

Here is me again with another bit of my tinnitus-hyperacusis saga few want to read. This is becoming like a diary for me. Never had one. Sometimes I thought about keeping one, but never found time. I wish I did for like even major events, trips, meeting certain people, etc, since my memory is not good at all. I sometimes completely forget fairly major events (yet often remember some unimportant minutia). In the end I am documenting the most hellish period of my life, and my wonderful life prior to this did not get such treatment. I was too busy enjoying it, I guess...

Tinnitus continues to be elevated (severe right now), and hyperacusis even more so. I still do not know which scares me more. They are both hellishly scary on each own. I feel like the suffering has quadrupled by having both (2x2=4). TTTS (?) or thumping sensation seems to be gone for few days. Burning showed up for a moment today.

I so wish I could claim I have reached some sense of stability, but I have not.

 

[gameover]

I have a rather intense feeling of warmth in my ears now. All I did today was go for my therapy and coffee, then another short car drive. No noise except the car (with the custom earplugs). Watching a movie now with my wife and kid, low volume.

This honestly feels like my ears are dying. It is truly terrifying.

Believe me when I say I am not going nuts, I am not panicking, and I am not even that anxious. I am truly in a disbelief. And shocked.

Like @Jupiterman advised, should I have gone hermit mode? Minimizing driving, etc? I would really go nuts.

 

[Jupiterman]

If you really want to know the answer about 'hermit mode,' there is only one way to find out.

Taking it to the extreme would be doing a @Brian Newman approach. That is to say; you stay at home, possibly in just one room and protect from any sound louder than mild.

No cars, no coffee shops, no walks in woods. Wear earmuffs (possibly earplugs as well) if required to venture out your room.

It'll maybe drive you crazy but perhaps less crazy than the tinnitus?

It won't take any more than 2 or 3 weeks of this 'experiment' to find out if it's helping or not (as long as you haven't had any undesired sound exposures in the run up to it.)

It's your choice, but do remember if you are getting worse; if you don't change your behaviour it will likely continue to get worse.

Ideally you want to alter your behaviour to an extent that manifests improvement.

 

[gameover]

Trigger Warning

To preface: at this moment I am very calm, no anxiety, I think my depression has greatly weakened. Anger gone. I just have a major sadness (hey I got a good reason for it).

As my condition continues to worsen, I have reached a stage that is not really livable anymore - for me. Well, one can say, you can do a day, a week, why not another month or a year, 2 years, etc? Well, yes, but there is hardly any enjoyment left. I will be blunt - I think life is to be enjoyed. No, I do not think this is the "purpose" of life. It is nice to have some higher purpose or fulfillment, but to me, this is basically a prerequisite. Your mileage may vary, maybe you can accept less. Point is, if one's life is reduced to constant suffering, this is not life anymore. That's how I feel. I still have fleeting moments of enjoyment, when suffering goes into the background. But these are fleeting, and the magnitude of conditions (of course tinnitus and hyperacusis) seems to be going up every day making suffering a larger and larger part of my life, eventually fully engulfing.

Why am I still around? For a few reasons. The fear of killing myself and the associated pain. Responsibility and love for my family - wife, children, mother. Fresh and vivid memory of a great life. Until recently, belief in God. Hope for getting better. That hope is waning, despite my constantly lowering expectations. When this started, I thought I would accept nothing less than silence. Then I thought, "ok, I will take a very mild tinnitus". Then, ok, "maybe moderate will do". Now I am like "oh, maybe I can deal with severe but without hyperacusis, please". Where I am today: "no, thanks". Of course the limit is highly individual, but I am absolutely sure there is limit for everyone.

I have basically lost hope. I am accepting I am waiting for the next level of worsening. I will be again reevaluating and wondering - can this can better? How long do I need to wait?

Things are getting worse daily basically despite me taking it easy and being careful. Neither overexposing, nor overprotecting. I am at a quiet home in a relatively quiet rural setting. There is a road nearby that occasionally gets busy, but not so much. Dead quiet at night. I drive a few times a week, for coffee, talk therapy or walk in the woods. I watch a movie at a low volume occasionally. I tolerate most house sounds like kitchen, maybe maintaining some distance. I stay away from vacuums. Overall I take it easy, but I do not avoid sounds.

The loudness of my tinnitus, persistence and sensitivity of hyperacusis keeps going in the wrong direction with some minor temporary improvements along the way (now, 8 months since the acoustic trauma). There is an increasing frequency of burning sensation deep inside the ears. I have a faint pulsatile tinnitus that is easily picked up in a quiet setting. My eye floaters getting more intense. My back is getting more sore from being in bed so long. Clearly our bodies are designed to fail, and I am ok with that, and I would do a lot to delay/alleviate that. But I can't with glaring tinnitus in my hand. Well, maybe I could, but hyperacusis makes me incompatible with this world. Even the quiet woods that everyone would find calming and enjoyable (as I did before this), is not really so for me - I hear traffic louder way far deep to it, the small planes overhead are like drill torture. I hope noone will gaslight me that the increase in severity of my symptoms has to do with my emotions or lack of positive thinking. That would be laughable, if it was not insulting.

You can call "S" a selfish act. I concede it is, despite the courage it takes. But the timing of it may make positive difference for the loved ones. Typically one would argue, at least the later, the better, etc, and usually that is true, but the opposite may also be true - let's get over and be done with it, give them time to heal, recover and rebuild their lives. And so I don't drain the resources while I wither in my bed. They could use those resources to build and enjoy their lives.

This discussion feels so unfathomable to me. I never ever in my worst nightmare thought I'd be considering "S". I truly enjoyed life. I never had anything resembling a mental problem, never even thought about therapy or medication. Maybe I had a slight OCD, compulsion for making things perfect, or over researching things especially when considering purchases of things, etc. Minor overall. Really, no impact on my life. Maybe I bought a few too many things, which does not matter, I could afford them. I had minor misophonia. It was not a huge deal (now is). I had minor anger management issues, maybe the worst issue I had, but again really minor overall.

My nightmares were events like car accidents. Back injury. Diabetes. Cancer. Blindness. But ear problems leading to suicidal thoughts? NEVER. Like I have repeated ad nauseam, this is strictly due to ignorance. Had I known tinnitus/hyperacusis can be a result of noise trauma (and not just some hearing loss), I would have never exposed myself to the tool that caused it, and I would be hyper vigilant about all other situations including e.g., driving my convertible or music listening volumes.

Ultimately I know everyone will tell me - way too soon. Give yourself year, two, three, which is the period where healing still can happen. Or habituation finally can kick in. Yes, it was my resolve, but I am losing it. I am especially horrified about hyperacusis. I was strongly believing "hyperacusis is most likely to go away". It seems very rare for noise induced cases, and seems basically unheard of for people with diagnosed hearing loss (which I have). Many people, most it seems, end up with permanent hyperacusis.

In summary, this is just too much, too debilitating and I am really reaching the point where I view this as my "solution". Sorry for such a down post. You did not need to read it, but thank you if you did. I guess I needed to vent. Or rather explain myself. I apologize.

If you really want to know the answer about 'hermit mode,' there is only one way to find out.

Taking it to the extreme would be doing a @Brian Newman approach. That is to say; you stay at home, possibly in just one room and protect from any sound louder than mild.

No cars, no coffee shops, no walks in woods. Wear earmuffs (possibly earplugs as well) if required to venture out your room.

It'll maybe drive you crazy but perhaps less crazy than the tinnitus?

It won't take any more than 2 or 3 weeks of this 'experiment' to find out if it's helping or not (as long as you haven't had any undesired sound exposures in the run up to it.)

It's your choice, but do remember if you are getting worse; if you don't change your behaviour it will likely continue to get worse.

Ideally you want to alter your behaviour to an extent that manifests improvement.

What you are saying makes sense, thanks. Not sure I am willing to go full "hermit" just yet. First, I will take it easier. I am going to use stronger protection outside and switch to a quieter car. I will go to the woods and therapy, but nowhere else I think. I will see what happens in a few weeks.

 

[4Grace]

@gameover, aside from living in a quiet place, your story is very similar to mine. I have little patience for writing as I am sure you can tell from my poorly written posts. The research when buying things, the minor anger issues. A few things purchased that you may have been able to do without. Loving life. Your fears. A slight OCD in making things ultra perfect. Love driving. Walking in the woods. That's me! All of it.

Thank you for sharing. You are honest. I admire that and many more of your qualities.

It's not completely out of the ordinary to feel you can't do this much longer. I say that because I think I understand the feeling. I am sure many of us here may have had or still have those feelings. I also have this strong feeling that tells me you are going to be okay. It will take time but I really believe it.

In reading the above I can tell you are a gift to the world. Honest. As hard as it may be to believe this thing may just end up being the best thing that ever happened to you. Okay, that might be me going a little too far. Lol. However, if you can just hold on to how it might feel when you look back and this is behind you? It would be worth the wait and I know you would agree. I can truly see that you have what it takes. That's not me bullshitting. You're just very honest and I love that in people.

The only downside is that when you get better I/we will miss you on Tinnitus Talk. That's the best and only way I'd prefer missing you though... Not just words. You got this! You think your stories don't inspire hope. Don't get me wrong, I don't want to diminish your suffering because it's as real as it gets. However, I can read between the lines too. Actually, I don't need to read between the lines. This is what I get from your story. You are smart, successful, loving, selfless, family man, thoughtful, a fighter (8 months), honest, man of faith at one point (this may end up strengthening that faith, if I was God I would pick you)... and you are much, much, more. You are everything, you just need some patience. Easy, not by a long shot. Can you do it? I'd bet on it. Easy for anyone to say when you feel patience/hope is running out. I get it, I really do. Hang in there my friend.

Thank you for taking the time to share your story. Thank you. Thank you. Thank you. Your honesty in your deepest moments of suffering are truly a quality to be admired. God bless.

 

[gameover]

@4Grace, thank you for your kind words. Not often I hear so many positive things about myself I also know how greatly you are suffering yourself.

If I got miraculously better I can promise I would never leave this community, and I would keep supporting sufferers any way I can. Likewise, I would devote a significant chunk of my life to spreading awareness of this. I really would do that. Prevention is the best and cheapest thing one can do to address a problem.

Thank you again for your kindness.

 

[gameover]

I did a 6 hour drive (round trip) to Mt. Washington (NH) today. For like 20 years I have wanted to go there, but somehow strangely have not. Meh. I did not really enjoy it over the blaring tinnitus. We took our quiet car so it was not bad, but still tiresome. Loud people around on top of the mountain, hard to get away from them. Takeout lunch with my wife outside at a picnic table was a fleeting good moment reminding me of the good times (no people nearby there, so no extra noise, which helped).

I used earplugs all the time, so hopefully no worsening, though tinnitus seems elevated/spiked now (and so does hyperacusis). Not worth the effort/risk given the reward was meh. Normally, it would have been a perfectly enjoyable day trip. Not anymore

Don't get me wrong. I do not want to sound ungrateful. Others who are homebound with crippling hyperacusis/noxacusis would perhaps envy me. Or others could not go on a trip like that on a whim for a variety of reasons. I am just conveying my experience, the loss I am constantly feeling and living.

By the way, I had another crazy experience last night. I woke up after short sleep, not sure how short, but still in the middle of the night. Tinnitus was crazy loud, and got louder in distinct, discrete steps, like:

1. This is crazy loud... 3 seconds. Bam!
2. Oh, shit this is even louder... 3 seconds. Bam!
3. Now, this is off the charts - will it get even louder? It stayed at this crazy level.

I literally felt/heard these jumps in volume. It was easily as loud if not louder than my biggest spike on record from last week. I also felt rhythmic thumping in both of my ears and felt a very high heartbeat. I do not suppose it was TTTS... very strange.

Surprisingly, I wasn't even panicked. Just like in disbelief thinking "I can't f****** believe it". I fell asleep again fairly quickly, and woke up in the morning to relatively normal very severe loudness that somewhat went down to regular severe level which has remained with me for the rest of the day.

 

[gameover]

I just napped during the day, which I have not done in a long time, for maybe 2 hours. I woke up and my hyperacusis is super amped (and so is tinnitus, but comparatively less so). I can tell because the water fountain I started using is super loud now - normally it is very quiet. I am not using protection or anything and the ambient noise is relatively higher this being the daytime (traffic, etc).

My worst hyperacusis attack happened 3 months ago after a shorter nap, perhaps a 30 minute one.

This is just insane, clearly this is not sound deprivation. There is some link to sleep that in my case is weird. If I sleep a normal amount of time (6+ hours), I get a significant spike. If I sleep a short amount, I get an insane spike. Very occasionally the spikes were milder, but I am not sure. I can associate it with a longer sleep (like 8+ hours).

Besides, what's the point of analyzing this. It is just insane. I am quite astonished how quickly this seems to be deteriorating now. Again, I am not even anxious, I am not angry at all, not as much depressed as just very sad and resigned in disbelief. I am like "disintegrating". I do not see the link to emotional state like many suggest. Something physiological is happening.

I do not know where to turn to. Everyone is helpless and tired of me, even Tinnitus Talk community, despite the deepest sympathy and understanding I am finding here. I reached to a couple of friends/former coworkers with whom I have not been in touch since this started - to warn them. One is coming to meet in a couple of days. It is nice. Nobody can help me. I sort of quietly hope they may help my wife with some things after I am gone.

 

[gameover]

I am more terrified than ever, my stranger friends. I met a friend yesterday, ended up talking in a park for several hours, then probably another hour in the car. I suppose I pushed it too much. Felt rather tired. Some burning sensation came last night, but short. Today I woke up with terrible noise, but it went down a fair bit. The day was ok and I took it extra easy. Just one short drive for coffee just to get out of the house in the rain. Tonight my wife asked to watch a movie with her. We watched it quietly, but the burning sensation set in, and was lasting for many minutes, perhaps an hour. Never had it that long. It is faint still, mostly in the right ear (the apparent "better" ear).

This is a slow motion train wreck. I am truly horrified. My worst fears come true. I want to fight this, I want to get better, I want to live, I loved my life. But I am so afraid I will not make it.

@Jupiterman was right, I suppose I need to go "hermit" mode, though I feel it is already too late. I was going to see an audiologist tomorrow to maybe consider hearing aids or get better custom earplugs, but this is in a city, I can't risk a 2 hour+ car drive and city noise, no way.

Early this year when I started reading this forum, and then even when I started posting, I would never ever think I would start developing pain in my ear - now that I knew the true dangers of noise and that I would be careful from now on. I was horrified at the prospect of living with tinnitus forever and in the state of shock, denial and anger. But I was very hopeful that the tinnitus may go away or at least improve. And I was virtually sure the loudness hyperacusis will go away in time as people here said it usually does.

This is truly insane. No, it is not from overprotecting, I was just living quiet careful life for months, but with plenty of exposure to low volume sounds and not a whole lot of artificial audio.

This is one of the cruelest conditions on earth. It is not just a phantom noise, however loud and distressing - it is actual unrelievable pain.

How bad will it get for me?

 

[haha ear go eeee]

So, first of all, I am so sorry you're going through this as well. Noxacusis sucks big time, to put it lightly. Good news though! You can totally prevent it from getting worse, just don't do the things that make your ears feel like they are burning.

Tonight my wife asked to watch a movie with her. We watched it quietly, but the burning sensation set in, and was lasting for many minutes, perhaps an hour. Never had it that long. It is faint still, mostly in the right ear (the apparent "better" ear).

It's very common to have a sensitivity to artificial audio, along with white noise and low frequencies. Again, avoid sounds that set off those symptoms. Don't worry about every single sound you make, just the ones that you are particularly sensitive to. I'd recommend watching media with subtitles and zero audio for a while.

@Jupiterman was right, I suppose I need to go "hermit" mode, though I feel it is already too late. I was going to see an audiologist tomorrow to maybe consider hearing aids or get better custom earplugs, but this is in a city, I can't risk a 2 hour+ car drive and city noise, no way.

It's never too late. Trust me. I started having noxacusis symptoms and I had two MRIs and still was out shooting guns. There's a very good chance you can recover from this, it'll take some months though.

Definitely don't see any ENT, they're not helpful for noxacusis and they'll tell you misinformation like "normal sounds can't hurt" and ask you to stop overprotecting. Don't let anyone dictate where your personal levels of comfortable sound should be. Just listen to your ears' limitations and you'll be okay. Just stay home for now, try it for a couple of weeks and see if you feel any better.

Also, for protection, instead of custom earplugs, I'd recommend foam ones with a 30+ dB NRR rating. Also, I really like the Peltor X5A ones, they protect around 30 dB. Don't be afraid to double protect if one layer of protection isn't cutting it.

You will get through this. In a couple of months, you'll learn your limitations and how to deal with them. The first few months were the hardest for me. I saw improvements about four months in.

One last thing, I found eating high amounts of raw ginger really cut down the burning sensation.

I hope this helps. It's okay to feel overwhelmed and scared, it's perfectly normal in this situation. Just remember your family has made it this far with you, they seem very loyal and they'll have your back throughout this. We're always open as well if you need to talk to someone. Take care.

 

[Buddy123]

@gameover, my dear friend, I haven't been as active on Tinnitus Talk as I had been; I'm fully immersed in my work and also have been working evenings on the remodeling project for my daughter's townhome. My tinnitus is still with me (the hyperacusis appears to have improved, ever so slightly, so slowly). The tinnitus is bothering me less as the hyperacusis improves. I don't think they will fully go away; I'm hoping for a significant improvement over time. I'm starting to find some joy in life again. I have accepted my fate and have decided to move forward with whatever cards I'm dealt with.

My suggestion to you (as a friend) is to get off your ass and get back to work (sorry to put this so bluntly but I feel I know you enough to be frank with you). And force yourself to do things that you like. Get busy helping your family and others with whatever skills you have. Immerse yourself with hobbies and other fun stuff. Don't let tinnitus get you stuck in the mud. Waiting for tinnitus and hyperacusis to get better while sitting at home and obsessing over it is like staring out the window and watching grass grow. You know that grass will grow, but when you just stare at it, no matter how long, it just... doesn't. Tinnitus and hyperacusis will get better, one way or the other, but you can't sit around and wait for it to happen. You have to get busy with life again. You may feel debilitated with tinnitus and hyperacusis, but once you start getting busy, you will start paying less attention to tinnitus and hyperacusis, and the grass will start growing.

What your wife said (life is not about being happy, it's about having meaning) is so true, and I think about that phrase all the time. When you start changing your life to have meaning, I think you will find happiness again... a deeper kind of happiness that would have eluded you had this condition not happened to you (I think you will understand this when you get there).

Take care for now.

 

[Jupiterman]

Tell me @Buddy123, have you been having worsenings?

 

[gameover]

@gameover, my dear friend, I haven't been as active on Tinnitus Talk as I had been; I'm fully immersed in my work and also have been working evenings on the remodeling project for my daughter's townhome. My tinnitus is still with me (the hyperacusis appears to have improved, ever so slightly, so slowly). The tinnitus is bothering me less as the hyperacusis improves. I don't think they will fully go away; I'm hoping for a significant improvement over time. I'm starting to find some joy in life again. I have accepted my fate and have decided to move forward with whatever cards I'm dealt with.

My suggestion to you (as a friend) is to get off your ass and get back to work (sorry to put this so bluntly but I feel I know you enough to be frank with you). And force yourself to do things that you like. Get busy helping your family and others with whatever skills you have. Immerse yourself with hobbies and other fun stuff. Don't let tinnitus get you stuck in the mud. Waiting for tinnitus and hyperacusis to get better while sitting at home and obsessing over it is like staring out the window and watching grass grow. You know that grass will grow, but when you just stare at it, no matter how long, it just... doesn't. Tinnitus and hyperacusis will get better, one way or the other, but you can't sit around and wait for it to happen. You have to get busy with life again. You may feel debilitated with tinnitus and hyperacusis, but once you start getting busy, you will start paying less attention to tinnitus and hyperacusis, and the grass will start growing.

What your wife said (life is not about being happy, it's about having meaning) is so true, and I think about that phrase all the time. When you start changing your life to have meaning, I think you will find happiness again... a deeper kind of happiness that would have eluded you had this condition not happened to you (I think you will understand this when you get there).

Take care for now.

@Buddy123, I am indeed approaching the moment where my hand might be forced to resume working, hopefully remotely to minimize exposure. I really can't see being able to jump into commuting into a loud city. This is going to be beyond hard but I do have this internal feeling I ought to try, and try in earnest. I really have to, I just can't afford my life and career to crumble. Sink or swim, I suppose.

I am really worried about the burning symptoms. I am really torn now between hiding/isolating further vs. returning to work. The information is really conflicting. It is indeed hard to understand worsening without loud noise, much less very loud noises (acoustic traumas). And the theory and evidence behind central sensitization, including anecdotal evidence from hyperacusis/tinnitus sufferers, is somewhat compelling. Of course there are those horrid and tragic cases of extreme noxacusis, including quite a few members here, where people got so bad, they just cannot recover. But what they have in common is further significant acoustic traumas indicating their damage is so big it is beyond repair. I, of course do not want to become a case like this, but I do not want to just watch the life go by while I still suffer. Indeed my plan should be return to work, resume doing more things, while remaining extra careful... life is risky for healthy people, it is much riskier for us, I guess each one of us has to find the right balance.

My tinnitus is still severe, but I am better at ignoring it than before once the usual morning monster spikes subside. Hyperacusis is the harder one. Perhaps I need to do some more changes in my environment to accommodate it (e.g., relocate A/C compressor elsewhere).

So I will be trying some things... besides going back to work, I will be doing "positive thinking" exercises (I can't believe I am writing this), trying hearing aids, maybe Clomipramine (still scared of it making tinnitus worse, but reports of it curing hyperacusis are quite compelling) and... maybe even stem cells. The last one is crazy, but maybe what I need is really expensive placebo. I will wait with that one a bit.

I gotta say I still have a hard time accepting what my wife said. Because I had to admit that my real meaning was about being happy and enjoying the life. Or at the very least about not suffering every moment... I'll see where life will take me, as much as I hate it, I can't undo what I have done.

Thank you, my friend, truly.

P.S. Part of the plan must be signing off these forums in earnest. I am not going to disappear forever but I will stop posting. Again, I thank everyone for their support from the depth of my heart and wish everyone to get better. Nobody deserves what we are going through, nobody.

 

[Buddy123]

Tell me @Buddy123, have you been having worsenings?

There were a couple of accidents when I was exposed to loud sounds (toilet lid slamming, loud truck alarm going off in parking lot) that triggered a spike which lasted a couple of days. Also, my good days/bad days swings are not as dramatic these days. It's mostly a mild/mid constant buzz/hiss (high pitched). I find it easier to ignore a constant sound than one that fluctuates wildly.

 

[Ken219]

@gameover, do you ever dream of better treatments or a cure?

 

[Jupiterman]

It's mostly a mild/mid constant buzz/hiss (high pitched). I find it easier to ignore a constant sound than one that fluctuates wildly.

That's great you are a mild case. It also explains why you are recovering well. I've no doubt, as long as you continue to be careful, that you are a prime candidate to experience complete fading. I wish you well in your recovery.

That all said; I can't help but call you out for telling a severe, potentially catastrophic, case to "get off your ass and get back to work."

There are severe cases who are so debilitated by their tinnitus that they simply CAN'T work. In addition, by doing their work could make their tinnitus/hyperacusis worse.

You usually need to be a severe case to understand this.

 

[Utdmad89]

That's great you are a mild case. It also explains why you are recovering well. I've no doubt, as long as you continue to be careful, that you are a prime candidate to experience complete fading. I wish you well in your recovery.

That all said; I can't help but call you out for telling a severe, potentially catastrophic, case to "get off your ass and get back to work."

There are severe cases who are so debilitated by their tinnitus that they simply CAN'T work. In addition, by doing their work could make their tinnitus/hyperacusis worse.

You usually need to be a severe case to understand this.

What's a severe case to you? All of this is subjective, so how do you really know?

 

[Jupiterman]

What's a severe case to you? All of this is subjective, so how do you really know?

True statement you make.

Without consideration of any hearing loss and habituation, here is my opinion of criteria for tinnitus levels:

Slight tinnitus; one who satisfies the following criteria:

1. Has a barely noticeable noise that can only be noticed when quiet.
2. Is monotonal.
3. In one ear only.
4. Can be intermittent.

Mild tinnitus; one who satisfies the following criteria:

1. Has a noise that is noticeable for much of the time.
2. Is usually one or two tones.
3. Can be intermittent.
4. Likely in one ear only.
5. No signs of worsening.

Moderate tinnitus; one who satisfies the following criteria:

1. Has persistent noise(s) and can interfere slightly with hearing.
2. Is likely at least 3 different tones/noises.
3. Soundscape can vary.
4. From both ears and possibly within head too.
5. Mild hyperacusis/reactivity likely present.
6. Worsens with loud noise exposure.

Severe tinnitus; one who satisfies the following criteria:

1. Has persistent loud noises that interferes with normal hearing.
2. Has multiple noises/tones.
3. Has hyperacusis/reactivity.
4. Soundscape varies regularly.
5. Comes from everywhere in head, including ears.
6. Worsens from moderate sound exposure.
7. Shows a general trend of worsening.

Catastrophic tinnitus; one who satisfies the following criteria:

1. So loud and persistent, it is not possible to think straight.
2. Has constant difficulty hearing normally.
3. So many different noises that they can't be counted.
4. Soundscape can vary by the hour.
5. Comes from everywhere.
6. Hyperacusis/reactivity likely.
7. Worsenings from moderate noise exposure.
8. Shows a general trend of worsening.

 

[gameover]

Sadly I am "back" already. Last night I started feeling a short pain sensation in my right ear. Not burning. Today it is fairly frequent. Not exactly stabbing, but a kind of pressure with a pain feeling. It is a new thing, I did not have it before. No idea if that's TTTS - it's not fluttering/thumping I have experienced before occasionally. I drove in my "loud" car yesterday (with earplugs of course), maybe that's why?

Ironically I am mentally better and I certainly was over the course of this week. Maybe buoyed by the prospect of the trip to StemCells21. I almost booked the treatment today, but decided to postpone given this development. Stem cell therapy is obviously a crazy last ditch effort. Experimental but apparently low risk - Tinnitus Talk members who got it done seem to be alive. Maybe they will get cancer later in the life, who knows, maybe not. I don't even care about cancer risk, as all signs point it's a tiny-to-no risk. My main concern was fatigue and noise exposure of the very long travel there that could worsen my condition.

I also got a prescription for Clomipramine yesterday. I just about decided I will start it soon, but also found some recent stories of it making not only tinnitus worse, but also making someone with loudness hyperacusis develop noxacusis. Apparently after it was "discovered" and successfully applied by the member @Trafalgar D last year, several people began trying it.

This condition is beyond insane. Total Russian roulette, like nothing is safe, nobody knows what one should do. What exposure is safe, which is not. It seems living a "hermit life" without exposure to mechanical noises (cars) and digital audio, but with a decent exposure to nature sounds (woods, etc), may be the only possible survival mode. It is just next to impossible to implement in real life.

No, I don't want to off myself at all, much less than during my low points even recently as documented in this thread. I just do not know WTF I am supposed to do.

 

[haha ear go eeee]

I also got a prescription for Clomipramine yesterday.

Before deciding on medications, I'd check in with Neil Bauman. He's done some incredibly extensive research on ototoxicity-induced tinnitus from medication. He might be able to give you some pointers for the one with the lowest risk if you give him a list.

For me, personally, I'm looking into Ivabradine, Keppra, and Epidiolex to start with for my reactive tinnitus, loudness hyperacusis, and noxacusis. I'm going to see if I can find a good combination to reduce my symptoms with.

I'm glad you're trying something for it though! Not everyone can wait this shit out, takes too damn long and setbacks are easily triggered.