Suicidal

My ENT told me way back "Ooooo, if you have hyperacusis, it only worsens with time."

I think physicians & ENTs tell you the truth; there are no real treatments aka magic pill etc.

I think it's the TRT and CBTists that are the real charlatans & crooks. From my own experience clinics seem to take liberty on how to deliver TRT.

If it is truly the gold standard, why not offer a money back guarantee at the end of the treatment? I know some would lie even if it did help them because it cannot be truly measured which is part of the problem.

I love some of the shit people come up with that I have read online.

Someone complained of having to recluse themselves.

All someone can come up with is "this is what tinnitus wants", like it's a DC comic villain waiting to get you.

Or "you are letting tinnitus call the shots."

Sadly that's all we have.

 

Hello to all here. I have been homebound and my reactive tinnitus and hypersensitive hearing continue to worsen. I'm not saying we can't heal but it's a loooong haul if we do. I also think overprotecting does some harm but exposure to loud sounds is worse.. Eh.. My ears crack at nearly everything on top of the shrill pitches and lower tones. It's hell and my life is drained. What the fuck to do... Shrooms? LDN? It seems even with hearing loss it's the brain that's sending all these sounds. We need to be taught to slowly reorganize our pathways to go around the damage and stop sending these signals of noise. Plasticity is essential and how to mold our brains to ignore and reset the activity causing the ringing... Where is that treatment for us to follow and possibly heal?

 

With tinnitus and hyperacusis, sometimes I worry that getting these conditions in their worst forms is equivalent to someone who’s met a vegetative state, a most abysmal fate that’s irredeemable. They’re gone, essentially, never coming back... a perpetual coma of sorts where, yes, they’re alive very much, but only through mere breaths or bodily logistics. Their mind is mush and dead, and will it ever come back?

Oh, such loss plagues us. Such worry. Such pain. We’re haunted by its devastation. Tormented by its fallout. Longing for redemption. Tinnitus and hyperacusis take everything from us, don’t they?

Aspirations and dreams so fervently lost, cast into a darkness void of light, never to return. Their frozen embers burnt out long ago, though we still remember their presence through the persistence of memory and what could’ve been. And what could’ve been would’ve been beautiful, but the rosebud of life withered to an irredeemable state. And what’s left are just echoes and whispers of the long held pain, rotting profusely in the footfalls of time.

 

If Shakespeare had tinnitus...

 

JFC... I'm in for a fun night. I was at an indoor exhibit tonight and a little kid let out a shriek from hell maybe 5 feet from me. Now my tinnitus is approx 3 times louder than it was. When I got home I tried my masking app through the Bluetooth speaker which is what I've been using to be able to sleep and no matter how loud I play the cricket sounds the tinnitus tone is louder than the masking sound unless I turn up the crickets loud enough to cause even more damage to my hearing. I hope this is just temporary and drops back to its already annoying baseline.

Gonna be another GABA, Melatonin, and weed night...

 

You're just one month in, it's very likely that you'll feel better soon. As many others have told you already, give it time, give your ears some rest, but try and stay mentally occupied.

Even people with the most severe tinnitus like some of us here, that have been facing this condition for decades, know that in the early stages, you have to avoid three things by any means:

- Dangerous noises
- Stress
- Loneliness

The three of them will play a huge role when it comes to the number and volume of the sounds you're dealing with.

 

Knowing what I know now, I can’t believe I’ve spent 36 years on this earth in harmony and bliss, being able to coexist with nature fine and peacefully, and now it all turned on me with such brutality. My body and the constructs of existence are waging war on my residence here — I’m literally incompatible with this planet now, like I don’t belong. And the worst thing about these aggressors is that they’ll never kill me — ever. They’ll turn-up the heat more and more, but they’ll always spare my life, always... much to my dismay.

I hope and pray that I can heal so life can be reasonable once again.

 

Keep living and being hopeful. Something’s got to give.

 

What can we do if we have the kind of tinnitus that we can’t ever fully habituate to because it’s very reactive, unmaskable and in your face a lot? What if some of us don’t improve? Do you believe we can get to a point where we hear the reactive tinnitus over everything or hear it all day but it doesn’t bother us?

 

From experience, I can tell you that time is likely to both reduce the reactivity and severity as well as change how you perceive it/care about it. Luckily, our brains get bored easily, so they can learn to care less and less about things they have become accustomed too. Hang in there!

 

Things will level out. The heat will get turned down again.

 

Honestly I don’t know. I have periods where it’s fairly bad but I’m good. Periods where it’s lower and I’m bothered. I know that with time, as long as I accept it and distract, it sometimes lowers even on bad days.

It’s just so ridiculous. Fluttering squealing to a quiet laptop fan like c’mon. Everyone is different, but we all need some stability.

I don’t mean to freak you out but not everyone will improve. Most definitely will and I’ve even seen really bad cases show improvement. I mean if not then I’m just as screwed.

 

Well hearing that gives me a tiny bit of hope but is it possible for reactivity to improve after 3 years? And not caring about it reacting as well? I mean can it sometimes take more than 3 years to either get used to these unstable unmaskable intrusive tinnitus tones or for them to improve? Like maybe it takes some people 5 years or more? I know that you said that time helps so maybe there’s no limit, like maybe it could improve 6 years from now, who knows... just if only I could tell the future lol.

I have had severe unmaskable reactive tinnitus for almost 3 years now.

 

I do think both can happen even after 3 years. The first year was the worst for me, but I still got a lot of improvement after that, which happened gradually over time.

 

Got vax in September 2021. I know I've only had tinnitus since October 2021 and made it intrusive and level 7 or 8 in January 2022 and made level 9 or 10 in April 2022 and then it became reactive in late April 2022 with loudness hyperacusis... but I'm going mad with how loud my tinnitus is. I can't sleep at night and I got so much to live for and a wonderful life, but I am being tortured everyday. Rest assured tinnitus has no limit. Not a second goes by that it doesn't affect me and how homebound it has me is insane. I really don't know how much longer I can last. Every day and every second is a battle.

 

I guess for others our brains keep getting more fascinated a.k.a. long chronic sufferers, getting worse etc.

 

That's very well defined. Having hyperacusis is like being dropped in another planet where different rules apply.

 

My god this is hell.

 

It is. Please hang in there mate. I want to read your success story one day, not your epitaph.

 

Kids make the top 5 most dangerous noises for severe sufferers in close proximity without hearing protection:

1. Gunfire (even with hearing protection is a no no)
2. Fireworks/firecrackers
3. Sirens/air horns/car horns
4. Construction equipment/power tools
5. Children screaming
6. My farts at 90 dB

 

Interesting. Mine started after exposure to very loud DJ music followed by a 130+ dB airhorn at arm's length from my ear. Then to add insult to injury the shrieking kid in a relatively small and very sound-reflective area.

It's interesting because maybe 15 or so years ago give or take I used a wet tile saw for several hours and after that experience I ended up with an even louder tinnitus than I have now. Same ear (left) but it went away on its own after 6 or 8 weeks.

This time I'm older and have 15 years of additional accumulated damage to my ears as a result of being a musician in loud rock bands. It's been about 2 months and I'm not seeing any indications that it's going to resolve itself this time. If anything it's slowly getting worse.

Over the years I've subjected my ears to every single thing on that list. Well, except one.

 

Still being driven mad here too. Had a rumbling hum for many years that only reared its ugly head during colds and would go away like clockwork after about 4 weeks.

Then I had the vax in May 2021 and 2 days later all hell broke lose, rumbling hum came back, and on top of that hissing tinnitus along with reactive tinnitus like a dentist drill to everything I hear, along with harsh distorted sound. Life is ruined.

We all seem to be in a very similar boat in many ways sadly. I wish I knew what to do to stop this 24/7 noise that I can't mask.

 

Loneliness is actually great for us in the beginning stages. We need to be left the f#@k alone for 2 years.

It's just too much stress worrying if your partner drops a plate on the tile floor or leaves the radio volume on max in your car. Plus not many partners can withstand seeing us suffer while on the road to habituation.

Severe tinnitus is hell, but early stages are just a special place in hell... it's not a pretty sight to witness.

 

This is debatable but I can definitely understand your point. Loneliness does mean silence so, yes, you're more risk-free on your own regarding potentially loud noises.

But filling your life with complete silence and isolation is also the worst thing you can do regarding your mental state and hyperacusic state. It just feeds your brain with nothing but what you're going through internally, which may be super toxic on the long run.

So yeah, debatable

 

It's a tradeoff, I agree. Not having someone to talk with can make you more sensitive to people's voices and develop hyperacusis. It's important to read out loud to yourself especially if you watch television on very low volume.

 

One of the saddest things about extreme tinnitus and hyperacusis is the loneliness that rides alongside them. People don’t get it. They can’t imagine such a brutal world, a violent landscape that presents such challenge and transforms the simple into things abysmal. Nonetheless, it’s only natural that those who suffer would crave acceptance and understanding from them. Receiving empathy and sympathy are intrinsic desires because, after all, without them the world is a lonelier place. We look to others for comfort and support, but oftentimes don’t get it from anyone, not the doctors, our friends, or even those who love us most, our own family. There’s a lot of pushback, a very strong wave of disbelief; our claims are often met with skepticism and rebuked by the masses, as if we’re imagining a hellish world for who knows what reason.

Those who live in this torment do so because there’s a tormentor destroying their lives — in our case, a very real thing and not the product of imagination. I often have a realization: If those who don’t believe could spend just 1 day in our shoes, they would totally change their tunes. They would realize what we’re up against and the utter devastation that comes with such a plight. No longer would we face the mocking or belittling, or that misguided 2-cents about what to do or how to do it. They would thank God that their experience with such horror was short-lived, only a day and not an eternity. The world would take us seriously.

In life, when the simplest things are lost, it’s a situation that’s unconscionable. When you’re allergic to most sounds, can’t be around people, can’t even exist in your own home almost. It’s absolute hell, like a prison within a prison, or solitary confinement.



Every little thing is challenged. When you’re sweating profusely on a 90°day because your ears can’t tolerate the air conditioning, even when it’s only 35 decibels. When a neighbor decides to cut their grass and they’re so far away, a football-field distance, yet it still aggravates your ears, under your own roof. And on top of that, dealing with tinnitus that’s not maskable and erratic, and literally painful, like electrical currents shocking and zapping 24/7.

The struggles that come with tinnitus and hyperacusis, when they’re ultra severe, are beyond the realm of problems — they’re catastrophic, waging war on the very construct of existence. I often frame this point by saying they make you incompatible with the world, which is very true. That’s why I pray to God a lot about this. Because I personally believe in Him and know He’d understand the situation when no one else can. I’ve witnessed paranormal events in my life that, to me, prove there’s a spiritual realm, and therefore a “God,” and I personally believe in Jesus Christ and His promises.

Humanity doesn’t understand us. Men and women don’t. Society at large doesn’t. And the governments of this world don’t either. Even though these conditions exist in literature and medical textbooks, adequate funding isn’t there to find treatments. Tinnitus, hyperacusis, and their power to destroy doesn’t receive recognition or respect. They’re often seen as lightweight disorders when, in actuality, they’re some of the worst in the world when severe, rendering the sufferer unable to coexist with the framework of this very planet, and damning them to the confines of their own home, where they feel unsafe even there. But a living, existing God would truly understand the paradox of this dilemma, a world where you can’t live and can’t die either, as your condition isn’t terminal, and never will be, and the suffering has no cap or ceiling, like an open sky that hugs the universe, its endless depth and blackness, where there is no limit, no scope or size, as it stretches on forever. And as we float into its dark abyss, we’re like a helpless astronaut, free-falling into nothingness.



We’ve lost our ship and gravity. We have no control or handle on the situation, overtaken in the vacuum of a lifeless space, where there’s nothing to grab onto and no hope in sight. We disconnect more and more, lose our minds little by little. Physical torment breaks us down as we wander through the cosmos and the days become eons, and lose their identities. But unlike the powerless astronaut, we never die. We float forever.

God may be the only one — besides fellow sufferers — who could ever understand these things and the paradox that we face; the severe trauma and isolation. God’s creation was meant to be experienced, not hidden from. And that’s why I call upon everyone to pray and seek Him, and to ask for help. We all want to experience His world and take part in it. But like this, we just can’t. Let’s call upon Him with that very message. Let the paradox be broken. Let us be reprieved.

 

I love you Dan, I am doing my best, but I have been screwed every single way from Sunday. From my loved ones pushing me to be around loud stuff and earplugs not saving me enough to my mom and dad not believing me when I got homebound and forcing me to go to hospital. Then me telling them I've been suicidal which was dumb of me to tell them. They put me on benzos and then threw me in the psych ward like I am crazy... Which I am most certainly not. No one believes these conditions exists. It's sad. I am in hyperacusis, reactive tinnitus hell and trying hard to get off the benzos they pushed me on. I am in for the fight of my life to stay alive and I am not even one year in with all the worsening. I am not sure how to press on.

I should have stopped everything in January when I first got this and told everyone to fuck off and stay home and only work out and protect my ears 24/7 for about 2 years till I got used to the extremely loud tinnitus. I could still listen to music and play guitar, but I had mild hyperacusis and didn't know it and ENTs didn't give me any good advice; only gave me benzos. I just can't believe the lack of awareness in this field. I can only imagine how many poor souls have been pushed down a similar path as I have here. They throw you ADs and call you crazy and depressed. Fuck the medical field. I'd have been better off going to see a witch doctor in the 18th century.

My tinnitus is screaming loud. Like the worst of the worst now. 11 of 10. Definitely catastrophic and I am so sad I didn't stand up for myself and just move to a cabin in the woods and fine peace. Hindsight is a bitch.

I can't believe we don't have any superstar campaigning for us to get treatment! How does no one famous get this shit really bad!

 

Just believe in the power of your brain. Tapering off benzos definitely jacks up your tinnitus and reactivity. So once you clear them out of your system, you should be in a better place.

Keep your ears safe meanwhile and do not under any circumstances get pushed into any noisy activity even with earplugs. You are a big guy? Don't let anybody mess with you.

The 2 year mark will surely bring a reduction to your suffering (barring any additional noise reinjury). I promise, but you have to make distancing yourself from noise a religion. Any plate shattering in the kitchen or a dog bark or someone shouting, will negate all progress and have to start from square 1. I am no newbie to severe tinnitus & hyperacusis, since 2011.

P.S. Don't just disappear on us one day without coming here. I really hate it when severe folks post for a while and then never come back, leaving us in question about their fate. @Geo was such a member with loud reactive tinnitus, same story, posted for a while and never heard from again. Although he did mention he would never take his own life. That dude was a fighter.

 

@dan, question: If you have to avoid all loud noises (shouts, dogs, etc.), for how long? And then how do your ears ever get used to sounds again?

Are you saying you need to protect from loud noise for 2 years and then you can adjust for the next year? In increments? I am just trying to follow the course for healing you are proposing here.

Thank you!

 

I'm quite an open book so I'll definitely not be disappearing without notice. I pray I can be a success story in anyway, but with how bad I'm feeling and how I'm getting worse every day, I dunno. I have such a wonderful life and thousands of people that love me and would be devastated if I go... but this suffering & isolation is immensely driving me crazy. I can't even think straight one bit anymore and the tinnitus gets louder and louder with this slow benzo taper. I dunno how I'll survive. Thank you for your kind words. I never would have imagined this could happen. This is like the worst hang over x100 that never goes away and has never gotten better, only worse. I'm at a loss. I want to live so bad but this electrical shrill is insanity level. No one could deal with this well. Pure suffering. No comfort, no peace.

I am suffering so bad. I don't know. Fick I'm scared. This might be my last weekend. I love everyone.

Why is there no help and no understanding!? No awareness of how bad these conditions can get! I can't believe this is my fate. All I had to do was move to the woods as soon as I got tinnitus, that was all I had to do and was already a goal all my life FML