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

@gameover, welcome back. I pretty much took the month off myself.

I would like to share some insights with you after speaking with “rock star” audiologist Myriam Westcott. She has done research and work on this subject for 28 years; Finally, I discovered someone who truly understood my condition and symptoms. She diagnosed my condition as TTTS/Acoustic Shock. She said that my cochlear is not damaged. My tensor tympanic muscle is malfunctioning and reacting to normal sounds. She said that I will “recover” with time (she won’t say how long). The hyperacusis should fade to near normal (already 70% there) and that the tinnitus will be less bothersome (or reduced) once the hyperacusis has subsided. She assured me that most normal everyday sounds won’t hurt me, and I should try to live normally in order to break this limbic cycle that is slowing down my healing. She did say that it is unlikely that my tinnitus will go away completely, but it should get better.

I also visited a highly respected tinnitus & hyperacusis audiologist in Austin, Texas last week. She did some extensive testing, and assured me the same thing. She said my tinnitus was considered “mild”. I’m doing biweekly counseling sessions with her (which seem to help). For some reason, she didn’t want me to do the typical TRT sound therapy protocol. She said I didn’t need it for now.

So, things are looking up, although the tinnitus does bother me. I’m trying to live a normal life. I haven’t started listening to music yet (so difficult as I was an audiophile). But I’m watching TV and Movies and going places.

My quality of life went fro a 9.5 to a 0.5 after tinnitus and hyperacusis. Now, it’s up to 6.0. Hoping to get to 9.0 soon.

Take care.

 

I don't want to hijack the thread, but this kind of relates to me. I read your cause of tinnitus as "Acoustic Trauma", but was there a definitive noise incident?

I have also read about Myriam Westcott from some TTTS/MEM threads. I happen to have similar symptoms for 2 years since it all began: mild tinnitus with its up and down periods, TTTS reacting to short sounds etc, and now the last few months I seem to have developed some kind of MEM (spontaneous spasms in one ear lasting hours, on a few days of the week). No hyperacusis (loudness or pain) though. I have no diagnosis other than unknown reasons / idiopathic.

I'm too trying to live a normal life and I'm almost habituated to the tinnitus and TTTS that reacts to sounds, but it's that last symptom, the spontaneous spasms, that make my life miserable. Did Myriam Westcott recommended you anything for the TTTS or spasms whatsoever?

 

@gameover, it's nice to hear from you. It sounds like you're making progress. Please keep the faith. I bet you'll improve even more in the coming months.

@Buddy123, thank you for the update. You sound like you're doing really well these days. I'm curious, how did Myriam Westcott know that you didn't suffer cochlear damage? I was under the impression that the cochlea can't be seen or assessed.

 

@Buddy123, thanks for the update and it is awesome to hear you are doing so much better!

Myriam Westcott? The Australian doctor? I suppose you spoke to her over video? And yeah, I am surprised to hear she can conclude you have no cochlear damage. You did mention the firearm incident in your past and hearing loss. As you may remember, I have a somewhat similar story with a firearm discharge indoors when I was a young teen, but then I never had my hearing checked so I have no idea if I had any loss prior to my injury this year. I am tempted to talk to her, but reading about her background I wonder if this is another case of biased specialist. Kinda like the audiologist I saw in Boston, Dr. Maison, who univocally claims the hearing loss is synaptic damage and not cochlear. I have no idea who among them is right or wrong but I get the impression they pick their favorite theory and stick to it no matter what. Given this condition cannot be physically diagnosed (at least on an alive patient), nobody really knows.

Regardless, great to hear you are doing so much better. I am hoping to do better as well, but it's up and down. I guess I went from 10 to 0.5 at my worst back in April-May. Maybe I am 2-3 now. Still not quite there to say it is a good life, but it is better. As I did mention, my hyperacusis is notably better.

By the way, I can't say I understand TTTS. Nobody diagnosed me with it. What are the signs one has it, or what can be used to exclude it?

By the way, I am scheduled to try hearing aids next month. The audiologist I saw wasn't keen on trying them, but an ENT is. I have not much to lose, so I might as well try.

 

Myriam Westcott mentioned that it can take years for the brain to correct itself (concept of neuroplasticity), and that the recovery process has its ups and downs.

My condition was caused by acoustic shock (low flying military jet); the symptoms that I described to her was classic TTTS (buzzing oscillating tinnitus noise , unilateral, mild headaches, fluttering of the ear drum, distorted sounds, feeling like a nerve or muscle contracting in response to sudden noises, etc).

I read somewhere in one of the papers that your condition could be surgically corrected (quite successfully), if it comes down to it.

I tried hearing aids a few months ago but they didn’t work for me. My mild hearing loss in left ear is between 4000 and 8000 Hz; my tinnitus frequencies are way higher than that. Myriam Westcott did mention that hearing aids typically do not help TTTS victims.

 

I can see TTTS causing rumbling sounds. I can even create the sounds myself by flexing my tensor tympani muscle, but I really do not see how it would cause high frequency tinnitus.

 

This thing is a roller coaster. I had an awful day yesterday. Spike with mild headache. Probably the weather change effect. Bad to a point of bringing back "S" thoughts. It's terrible, scary and just tormenting. Only to wake up to a noise of neighbor's lawnmower and the shitty small planes. They remind me of persistent mosquitos. Buzzy and being slow as shit they just hang above your head and piss you off.

But today's afternoon was better. Toured a couple of houses. None will work, but it is a distraction and opportunity to get out of the house.

I guess one needs to keep going for a little bit longer. I will see how far I will get.

 

Ah, I see. Thanks for replying. I understand the others, but I'm not sure how the buzzing oscillating tinnitus noise could be caused by the muscle(s) that cause TTTS. As very correctly a poster here said, those sounds are usually rumbling. Anyway, it sucks whatever it is.

Yeah, supposedly there is that surgery to cut the muscles, but I'm quite scared to do that in case of side effects, which seem to be some hearing loss, worse tinnitus etc. Also, for some people it wasn't really successful. So, I'll think surgery as my last resort if all else fails.

 

I also met a couple of times with Myriam Westcott over video call.

She is very much a TRT practitioner, who trained under Jastreboff, and as such it's the direction things are taken.

She diagnosed me with TTTS. I have no thumping but a continuous loud buzzing which can change in pitch and intensity through sleep. She also said hearing aids would not help me and possibly harm me.

She recommended I see Prof. Bance in Cambridge, an ENT with a highly regarded reputation who specialises in inner ear disorders. Even privately it took me weeks to get an appointment due to the number of international patients he has flying in seeking advice.

I had my appointment with Prof. Bance and left slightly underwhelmed.

He said, and also wrote to my GP, that I do not have TTTS. He described this as a fluttering and thumping noise, rather than buzzing. He also said he would be reluctant to cut my tympani or staples muscles in fear of making my condition worse. He said it can bring on hyperacusis, or make hyperacusis worse.

He also told me he had cut many tympani and staple muscles to stop the thumping from occuring, but to date he said - I am sad to report - in his experience it has never taken away anyone's tinnitus or made it better.

I've spent a fortune seeing the best practitioners I can find across the world (Westcott, Bance, De Ridder), and to be honest I feel I know no more about my condition and am no closer to an answer than I would have read on here.

The only consultant willing to try something other than CBT was De Ridder at Brai3n, who wanted to try rTMS along with medication and hearing aids - I haven't taken this offer up as of yet.

 

Another morning, another hours of terrible thoughts. I am going back to the bottom it seems.

For me, it is all about the tinnitus volume. If the tinnitus volume is less, I can live. If the tinnitus volume is too much, I can't. I seem to be oscillating in that near range.

Why the damn Dr. Shore device cannot be ready yet? So many lives could be saved.

I really feel that the sad end is inevitable.

Sorry for the down post but that's how I feel. I even tried to console a new sufferer yesterday. I do not think I have any business doing that.

 

I just want you to know that your real friends are right here...

I used to have those mild headaches quite often until about 1.5 months ago. Now I rarely get them anymore. My condition has clearly improved, but the longing of the near perfect days in the past keeps me disappointed at times. I was always told that my perfectionism would lead to much challenges in life... how true it is.

 

Unfortunately the Jastrepratts of this world continuously citing that the loudness of one's tinnitus is of no consequence does us no favours.

Volume DOES matter. It matters a lot. Pitch matters too, in fact give me a similar volume of tinnitus but make it hissing rather than a tonal 'eeee' (that wasn't reactive) and I'd be a lot more content.

It's been four months for you, and things are still 'early'. At my month four I was in a dreadful state - I'm now at month ten. My tinnitus is terrible today but that may be because I had to do a 5-hour round-trip for a CT scan on Friday in the centre of London but my car broke down as I started my return journey and ended up having to be towed home 80 miles. I was on my own so you can only begin to imagine the phone calls I had to do, and the loudness of everything trying to get home, which ended up being a 10-hour round trip.

Things can improve and they can get better. Protect the ears, do what you can still enjoy and get to the end of the day with the hope tomorrow may be better.

You helping someone in need is being a good person. You had every right, and it shows your compassionate side.

Keep hanging on, keep holding on. Things could improve if you keep protecting your ears and eventually the Susan Shore device will launch - it just needs a little more time (I'm surprised after 10 years she'd not fed up of waiting now - surely she wants her payday!).

Forever grateful to Dr. Shore for everything she has done and continues to do, but it is a shame there isn't a big company behind this with deep pockets and a full manufacturing and distributing logistics handle this, as it would for sure have launched by now.

 

Alright, thanks for your report! That explains a lot about that Myriam woman... It is apparent that no one is an expert for these conditions. Literally no one on this Earth. I really can't think of ailments that are more untouched by medical science than ear stuff.

I think that if you don't have fluttering/spasming/thumping, you don't have something related the muscles. Except if they are spasming machine gun fast, and sound like tinnitus, but I don't know. Tinnitus is something that happens between the brain and the ears, so it's a bit hard to make it better by cutting the middle ear muscles. Now, of course the muscles spasming produce some kind of noise, but that's subsequent to the spasming, so I don't think it's correct to call it tinnitus. How you diagnose those two, that's another story... At least, that's my opinion from what I've read and from what I'm experiencing.

For me, the problem now is the physical sensation of fluttering deep in one ear. The sound is a split second rumble which is almost zero of a problem for me. So yeah.

We need real treatments yesterday.

 

Thank you. The forum has been invaluable in keeping me alive. Gave me hope things can get better, one way or another. That being said, Internet forum is not quite substitute for real in person (or even over the phone) relationships and interactions.

Thank you for your support. And sorry to hear about your car ordeal. What would be normally a minor inconvenience now can turn into a nightmare!

Yes, volume is everything. Whoever says volume does not matter should be punched straight into their stupid ear, so hopefully they get loud tinnitus. Then they can tell us volume does not matter.

Actually it has been 7 months since my trauma, and about 5 months since things got really bad. But I hope that things will get better, as they slowly have started to get so.

I am now in this mornings bad/afternoons better pattern. Went to two backyard parties this afternoon and it was okay. Weren't too loud, so I coped well. Meeting some new people was nice and distracted me from tinnitus. Conversations with people do that, as usual for me, though I feel really exhausted now.

As you can guess, met people with tinnitus there. Two, both mild cases. One guy has 50% hearing in one year, and mild humming. But another guy has a coworker that is struggling big time.

 

On the road to recovery, there will always be setbacks. Try to mentally budget and prepare for them. In my second year with tinnitus I had many setbacks which dragged me down mentally. But I learned from more experienced members to try to ignore them and to move on. The less you care about the setbacks, the less intrusive the tinnitus will become, as you stay off the limbic system by keeping calm.

There are many success stories from people who, after much suffering initially, decides to not care about tinnitus as much as they can, and they get better. The followings are 2 such examples:

Doing nothing works this guy:

Doing Nothing Worked for Me

Lady mining truck driver realized 70% of her colleagues having tinnitus:

6 Months & Tinnitus Still Going Strong But So Am I

 

I read the success story of @Barry Gradski on "Doing Nothing Worked for Me" thread as linked by @billie48. On the face of it; it seems like a good method. That is until you read that the author of the story frequently had silence with their tinnitus, that their tinnitus was intermittent. That leads me to believe that their tinnitus is/was on the mild-to-moderate side of things?

I have a theory:

Everyone who gets tinnitus freaks out at the start. They are so freaked out, the way they express it to others, it's difficult to gauge where on the scale they are with regards mild, moderate or severe. What they are experiencing could 'actually' be 2/10 though they think it is 9/10 (which they may come to realise months or years later).

I think the real test of evaluation of one's tinnitus comes with TIME.

If you have a mild case, like @Dginobile, who speaks of her stable monotonal tinnitus on the "Doing Nothing Worked for Me" thread; she 'boasts' of habituating after 6 months. As her tinnitus was mild (IMO) then she habituated in a relatively short period of time. But she didn't think she was mild at onset.

Then take cases where people (too numerous to mention on Tinnitus Talk) speak of unrelenting, screeching loud tinnitus torture even after 2 or 3 years from onset. These are the true severe cases.

So how do you gauge?

A possible test would be the following:

If you've had tinnitus for more than 6 months and you haven't habituated then you are at least mild.

If you've had tinnitus for more than one year and you haven't habituated then you are at least moderate.

If you've had tinnitus for more than two years and you haven't habituated then you are severe.

How soon (if ever) you habituate seems to be the "proof of the pudding" as to the seriousness of your tinnitus. It's as close to being objective as we are going to get?

I understand better why no one (namely non-tinnitus sufferers) gives a shit if you're under the 2 year mark. In fact; the less time you've had it, the less people (stressing again non-tinnitus people) take your tinnitus seriously, regardless of what you describe.

 

@billie48, thanks. I am familiar with these stories, and read @Barry Gradski's story many times. I wish doing "nothing" worked for me. I've been trying, but unsuccessfully so far. Though I wonder where may somewhat of an improvement a few weeks ago come from, was it because I started to care less about tinnitus? Not sure.

I am trying to hang in there, and thank you again for helping me in that.

 

Probably because you were away from Tinnitus Talk for a while. Being back here all the time will draw attention to the tinnitus.

 

Well, I was still visiting the forum, maybe not every day, but often enough. But I compelled myself to not post, so perhaps that put some distance between me and tinnitus.

 

I am in a bad spot. And part of it is I lost my faith. As I mentioned before I was rather observant Catholic for most of life, except some late teen period where I rebelled. Well my family was rather lax, but I became more religious after getting married, following example set by my wife. I actually often enjoyed going to Sunday mass. It was a nice experience, especially when the priest was able to give interesting homily, and when the setting was nice, like older church, good choir music, etc. Anyway, I also felt and thought (and still do) that the teaching of the Catholic church is good and aligns with my internal values and beliefs. I am a scientific type, but I carved out this bit in my world view, like "we do not know enough, so may as well believe in God".

I have been praying fervently to God after this injury, until very recently. Earlier I went and took Sacrament of Reconciliation, took Sacrament of the Sick. I went to spend some time on a retreat in a monastery. Nothing. I prayed for anything. Ideally a cure. But I would be happy with the volume being halved. Or just being given strength to deal with it. But nothing. In the end I reached a point where I need to concede there is absolutely no evidence God exists. There has never been. It is a scam you can say. And I feel no longer able to believe in God that allows this kind of suffering. There is nothing good in it. I try to be more compassionate, but at the end of the day everything is worse because of it.

It really should not be a surprise, because I was obviously aware of bad suffering in the world. I was glad to be one of the "lucky ones". Without perhaps giving much thought to the God in this context. I think I sort of thought God is something to do with afterlife, he does not interfere. I guess this was healthier, since it did not bring any expectations of him to be involved in our worldly life. Anyhow, there is no evidence he exists...

This is bad and sad, because God and prayer sort of gave me hope. It seems I lost it. The only hope I can find is from experiences of few folks on this forum. Like @Jason C, who miraculously got back silence after 2 years, like @Vii for whom after 3 years got the tinnitus got quieter, or like @billie48 who learned to ignore the loud noise.

I do not mean to hurt feelings of any religious folks here. It is just my experience, where this horrific ailment killed my faith.

 

I'm getting worse daily.

My tinnitus is loud, static/hiss filling my head. It's severe. As loud as after waking up and it is afternoon now. My hyperacusis has spiked. Floaters in my eyes got worse. Now again I had some thumping/thudding in my right ear. It lasted a couple of minutes and seemed to go away after I changed my position in bed. I do not know what it is? TTTS?

I am terribly sad about this, and especially sad when I think about my wife or children. But not quite as anxious or panicked as I used to be in the past. I seem to be slowly accepting my destiny of ending it at some point. Not sure when.

So absurd. It was one time of reckless sound exposure. But I really did not know of the danger. I had it wrong - as I was exposing myself to the sound I had this though, oh, I may be setting myself to be hard of hearing when old. So ignorant. The worst thing about it is when you're doing it to yourself you have no idea, it did not feel THAT loud. And it took weeks or months to become really bad.

I was kicking myself for some bad things I did in my life. Sure, better decisions could have been made. Fewer things accumulated, more time with kids, etc. But in the end it was what it was. It was not bad. It was a great life actually. I might not have appeared happy or smiling most of the time, but that was just my personality. I was always full of drive, doing things, pursuing goals, living life. That alone is enough to say I was living a happy life. You do things, you want to do things = happiness in my book. And I wasn't a bad person. I regret little if anything at all. Most of my earlier mistakes were minor in comparison, and things that could rectified and/or accepted. Not this one, the consequences appear grave, literally.

I still keep reading the success stories and trying to tell myself it is worth waiting to see if I can be one of the lucky ones who recovered. Worth it? That remains to be seen, nobody knows. The question is do I have the strength and patience to do so. I am 7 months in, and I seem to be at about my worst again. We are talking another 2.5 years or so.

I am sorry for being repetitive. I know it can be annoying to read such kinda of lamenting.

 

@gameover, when we have bad days, we all go thru the same lamentation again and again... unable to forgive ourselves for what happened, and then start spiraling in depression again. Keep reminding yourself that even all the success stories say that in the first year, there is little improvement if any.

One of the things that I've found effective in keep myself going is to keep myself busy, not only with career work, but also busy with my hobbies. Example: I recently bought a townhome for my college kids and have been doing some hands on remodeling work in the evenings. I found it incredibly therapeutic and accomplished.

I believe that (for you) taking off work for such and extended amount of time is actually backfiring. I recently spoke to a veteran forum member in California. He has high-pitched tinnitus that takes over 100 db of masking noise to mask it; one of the advice he gave me is to keep working and to stay busy. I encourage you to go back to work soon and to also keep yourself busy with he things that you love (with your hobby cars etc.). Don't let this stop you; don't let tinnitus win.

I strongly believe that you have TTTS. If so, this should settle down in the next year, and your tinnitus should be less intrusive or bothersome. Protect your ears from excessively loud noises, but continue to do the things you love (I was told is very important for recovery).

Odds are highly favorable that you will improve significantly. It just takes time, so let's stick around and find out.

 

That does sounds like Tensor Tympani Myoclonus Syndrome (TTTS), which is a type of Middle Ear Myoclonus (MEM). It can react to sounds, to movement, touching face, and spontaneously. I experience it to each of those occasionally. I first experienced it once about 18 months ago (in response to someone's voice) shortly after my tinnitus intensity increased significantly in February 2022, and the TTTS flutters/thumps returned this June and became recurring. Anxiety can contribute to it as well. There are some other threads on Tinnitus Talk about it, which you may have seen. I first experienced significant hyperacusis earlier this month, so that was something else that was a recent development, so there could be a connection there.

Improvement doesn't appear to be steady progress, so there can be set backs along the way. Hang in there.

 

Whatever amount of sound exposure you have allowed in these past few weeks, it sounds like you may have done more damage.

Two bits of advice:

1) Protect ears MORE, double protect if you have to.

2) Stay away from noise, perhaps even take this to the next degree and avoid even moderate noise.

Noise is your enemy because you have noise-induced tinnitus. Don't give this enemy the energy it needs to defeat you mentally.

It's beating you just now.

 

@gameover, it sounds like you are having the "learning by doing" sessions I forewarned about and you are most likely having delayed repercussions from past noise exposure during your recent "better" times. My tinnitus, hyperacusis consequences are always time delayed from the spiking event and yours maybe as well.

Grind through it and you should slowly get better again.

 

Thank you, @Buddy123. Yes, I try to keep reminding myself about that. Honestly, if it wasn't for these success stories I don't think I would have any strength to continue. I just know I need to a change for better to make this sustainable. Status quo won't do. Either my tinnitus/hyperacusis need to get reduced, or something in my brain needs to adapt.

I admire your progress. Doing remodeling? Kinda brave of you. See, this was this kind of stuff I loved to do. I don't dare to pick up a power tool anymore.

I get too tired too easily to return to work, I feel. I was really thinking and planning my return a couple of weeks ago when I was feeling better, but now it does not seem feasible, really does not. As for hobbies. I wish. I kinda try. I keep driving my convertible I bought last year - with earplugs - though I wonder if that's to my detriment, since the car is not quiet (I keep the top up, unless sometimes going at low speeds). It still gives me some pleasure, the car has amazing handling, balance and power. But that's about it, can't muster much. I have another sports car, a really loud one, that I do not drive anymore and that I want to sell, but it requires some preparation for sale and I am not finding energy to do so.

I know at some point I need to try to return to work and see what happens. As I did mention before, while we are not poor by any means, I am nowhere near in a position to retire. My dream is really to retreat to a quiet house in woods, try to get well, and stop worrying about stuff. It is not impossible perhaps, but will require serious downsizing and getting rid of stuff, move really far away, etc. I am totally willing to get rid of stuff, but again do not have energy to do so, and if we move to some sticks, I need to consider the needs of my family, too. So not easy at all.

I am really not sure about TTTS. Thumping in the right ear has happened to me maybe three times since the injury, never in the left ear. I vaguely recall I could have had this sensation in the past before the injury (rarely). It seems related to blood flood rather than sounds.

Thank you @RunningMan. I think you meant "Tonic Tensor Tympani Syndrome"? Yeah, as mentioned above, the thumping sensation is not new to me but has been (still is) very rare.

I wonder if you're right. But I have been careful. The biggest exposure was to vacation trip in the first half of July. The loudest setting was the plane, where I double protected.

But I also know for a fact that if I protect too much, I get an instant hyperacusis spike. I can just tell. I could tell on the plane, or even in the car, if I put in foam earplugs, everything gets instantly louder in a short while, very apparent once I remove the protection. You could say that at least protects the cochlear, and the brain can readjust, but it is very uncomfortable and anxiety inducing feeling.

There was one difference I made during my "better weeks". I ditched the sound enrichment, something I was doing earlier which perhaps led to my improvement. So I've been trying to go back it now. It clearly cannot hurt (very low volume), but maybe that's the key variable?

It is all confusing, because indeed effects are often delayed. Heck, the tinnitus took 4 or 5 days to appear, and kept developing for almost 2 months! I know for a fact, that my hearing damage was progressing slowly over time, because of worse hearing loss in my right ear at 3.5 vs. 5 weeks after the trauma!

Again, thank you to all of you for reading this and caring.

I remember your warnings. I wondered if you exaggerate much, or maybe I thought your situation is much worse than mine.

I really avoided loud noise, and protected nearby it (plane). I had to start the lawn mower once (double protection). Two weeks ago went to ENT and had audiogram done (quiet but with earbuds which I did not like). I also drove my convertible car that can be loud, but again always with earplugs and top up at high speeds. I went a few times to a restaurant (peak 70 dB) - in earplugs. But I do not know, maybe some of that was too much indeed.

Anyway I took it easy, I suppose I could do a better job, especially avoid the car. I admit the car was the last bit of my good life I tried still to enjoy. Maybe it is the cause of my downfall (car again...).

If so, I am hosed. I will try to wait it out longer and see if I improve, but the way it stands, it is not really livable. I am really inclined to end it. I am much less emotional about all this now, and more calculated.

I'd say it has nothing to do with emotions/stress. I am much less stressed now, have much less anxiety. Much less. I don't pace around the room. I don't cry as much. Here and there for a moment, when I think about my kids and wife and what will become of them if I go. That's about it.

 

Yes, sorry for the confusion, it's also called tensor tympani myoclonus.

 

I mentioned it before, but I need to reflect on this again.

I cannot comprehend how oblivious I was to tinnitus, especially given my pre-tinnitus sound sensitivity and misophonia. As I did mention, I was easily annoyed by sounds. I hated loud A/Cs, phones beeping, white noise generators, backup beepers, people eating loudly, leaf blowers, etc.

I self-diagnosed myself with misophonia 8 or 9 years ago. Yet, I completely ignored information about tinnitus and hyperacusis. Hyperacusis is linked from misophonia's Wikipedia article as far back as 2012 - before I learned about it!

Like three years ago I watched "Baby Driver". I could not remember tinnitus was featured in it. After I got tinnitus this year a friend mentioned it, and I still did not remember. Just a blank stare.

My brother-in-law has had tinnitus since childhood. My wife told me that. I only remembered after she reminded me. I recall feeling bad for him, but clearly I did not feel bad enough for him. If I did, I'd perhaps develop the mental picture of how bad it could be. But I did not.

In his case it was caused by antibiotics, not noise - my wife also had no idea about noise being one of the causes for this reason. But she was aware of drugs being a danger. I do not remember her specifically voicing this concern, but I do remember her being very concerned any time our kids had some ear infections. As recently as last year my youngest had an ear infection (resolved, no known lasting issues).

I cannot say I remember the story of Gaby Olthuis. I vaguely remember a case of euthanasia in the Netherlands. But maybe it was about someone before her. I remember feeling awful and sorry about this. But also feeling against it, thinking it could be abused (but these might have been thoughts developed later).

Point is, I was close to get the message, but missed my chance. I so wish I did learn about it. I am health conscious and risk averse. For example I was very worried when we found out our previous house was by a high voltage power line buried in the street (I had no idea when we bought it). I even bought magnetic field meter. It's no joke, the field is strong, even for buried lines, and it was elevated in the house. 200 microteslas in front, 100 in back. Normal level is below 50 microteslas. It was off the charts when measured at the curb (literally, the meter was out of range, I forget how high it went).

I know it is too late, I screwed up, what's done is done, I need to try to find a way to cope and hope for things to get better. But I still cannot believe how ignorant we are about such a horrific and real danger. I really blame education/press for lack of awareness. I know about brain eating amoebas. WTF should I care? I do not live in Florida or swim in warm lakes there. Even if I did, the likelihood of contracting it is probably minuscule compared to tinnitus. But "brain eating" sells as a news headline.

It is the misleading message: "noise causes hearing loss that is accumulative". Vastly incomplete. It should be: "noise causes tinnitus, extreme sound sensitivity or pain hyperacusis in addition to hearing loss".

Better yet, tinnitus should be described as "brain torture sound syndrome". I so much hate word tinnitus. Makes the issue sound as something esoteric and unimportant. Such a fail.

 

Don't blame yourself too much for not paying enough attention to tinnitus in the past. I think many of us have done the same, and then got caught completely off guard just like you when it happened to us.

Tinnitus and hyperacusis never killed anyone (unless it induced suicidal behavior), so I suspect that the average non-sufferer has very little interest in preventing or curing these conditions. Even the average medical researcher probably believes that it's more important to focus on fatal diseases such as cancer and heart disease.

About nine years ago, there was a viral "Ice Bucket Challenge" on social media that was intended to raise awareness about ALS and raise funds to treat or prevent it. Some journalist -- I wish I could remember who it was -- wrote an editorial questioning the wisdom of focusing so much public awareness on ALS, given that it's not contagious and there are no known ways to prevent it in anybody. So if you can't spread ALS around like a contagious disease, and nobody knows how to prevent anyone from catching the disease, what is the point of the general public being "aware" that ALS exists? The reporter wasn't disparaging the need for ALS research and cures, but they were simply saying that it might be more important for the public to become aware of diseases that are in fact easily preventable on an individual level.

Maybe what tinnitus and hyperacusis fundraisers need is a viral campaign like the Ice Bucket Challenge. Something that would raise awareness, encourage prevention, and fund treatments and cures.

I can't stop anybody from catching ALS, but I could stop somebody from getting noise-induced tinnitus and hyperacusis just by telling them how to protect their ears. It's that easy.

 

LOL nobody has thought about that before. There are even threads about the Ice Bucket Challenge here on the forums and how it won't work for tinnitus and hyperacusis. Nobody gives a shit about these conditions, impossible to make any campaign viral, even people with tinnitus and hyperacusis struggle to spread the word on their social media about these issues, they are stigmatized and people want to stay quiet and struggle in silence (pun intended).

ALS is a different monster, easy to empathize with, a quick killer usually within a few years after diagnosis.

Good luck with the effort LOL!