Suicidal

This message means a lot, and I know you’re struggling too. I’m impressed you’ve reviewed so many cases - that’s a scientific mind! The evidence does suggest that many do get better over a long time. I feel the need to vent here because I feel so beaten down. It’s been 6 months since the worsening and since then mine has trended so far in the wrong direction regardless of what I do, it doesn’t make any sense to me. I start feeling some relief and then have another setback to start everything over from an even worse baseline. It’s become relentless.

I will hang on and I’m still exhausting all therapies, objectively I just don’t know how much more my neural system can take and the trend has grown quite strong. I promise you I will continue to push myself far, far beyond my breaking points, as I have no other choice and I love my family and friends

 

Glad to see you're hanging on.

The setbacks are the true problem for us both.

I have been living in almost silence. No sound therapy, no digital audio, and only ambient noises. To be honest I've done this twice after a setback and both times I started to stabilise a little after 3-4 weeks.

There's always the sound deprivation and worsening of hyperacusis argument, but it seemed to work for me.

Then once I stabilised after a setback, a couple of weeks later I was able to introduce sound a little more, so. I could then try and work on the hyperacusis.

If each setback is a little more acoustic shock to the system, maybe the shock needs to stabilise before the hyperacusis can then be tackled with low level sound.

It's how I'm seeing it based on my own experiences, but I guess no one really knows.

To try and limit setbacks I created a safe space in the house where only I can go. Then anywhere else I have earplugs whenever anyone is moving around, in or near the kitchen or about to do almost anything. Hate the living in fear of noise, but I fear we're not the 'normal' tinnitus cases.

But I feel, before this stupid setback, this level of overprotecting for just a couple of weeks did stabilise 'something,' allowing me to add audio slowly.

 

I love you so much brother. I'm so sorry. I am on the same boat and just one year in. I've dramatically worsened to the state you speak of as your own. I'm only 39 and life is completely destroyed. No one understands and has only pushed me to get worse with all the lack of awareness and proper protocols by doctors.

Thanks for sharing your story. I wish you peace and somehow a miracle. I need one myself. I sit in disbelief every second that ears seem to be the end of me. Like you, I am very strong and been through a lot... so most of my people think I'm just gone off the deep end sadly. I just can't believe tinnitus can be so loud and sound tolerance can be so low.

 

Hi @Theezy, so sorry to read you're suffering so much. I was thinking of you last night and prayed for you.

Have you considered getting in touch with Dr. Silverstein in Sarasota Florida? He has changed people's lives who have suffered from debilitating hyperacusis, with the round window reinforcement surgery which he pioneered. I consulted with Dr. Neil Nyak for free many years ago.

It's a long shot but you never know.

Stay strong, sending you and your kids and family love and heaps of it.

Daniel

 

Who here has other chronic illnesses too?

 

May no one else have to go through this vicious cycle of worsening tinnitus and hyperacusis.

I’ve heard of it before. It does sound intriguing. Currently I can’t imagine taking a flight to Florida unfortunately, everything goes ballistic from a simple walk with protection. I will do some research though so if I start to improve I may be able to seek this.

 

I do.

 

Me.

 

I don’t think I can do this anymore. My life was already uprooted before this hyperacusis even happened. I have what doctors believe to be an undiagnosed autoimmune disease, that causes nerve damage across my body. I think it may even have something to do with my ears.

Now after a NYE party I have tinnitus and hyperacusis.

I have used protection 24/7 besides 2 minute breaks here and there to gauge my hearing.

When the hyperacusis started, all sounds were uncomfortable. But I could deal with them. I would get ear fullness and slight pain and that was my cue that that was enough of that sound. Through the last few weeks I have experienced more and more symptoms and my sound tolerance is at 20-30 dB. With protection.

My tinnitus is reactive now, I have sound distortions, my own internal sounds such as my heart beat, body movements, chewing, swallowing, foot steps all cause me discomfort and pain, my neck and head feel on burn and ache either from the constant anxiety, earmuffs or something else. I don’t know. I’m sensitive to vibrations, my ear canals are swollen from earplugs but I can’t take them out. I can’t do anything because the smallest sound causes my ears to ache.

My doctor said I have some fluid in my ear but not an infection and just to leave it. But my ears pop painfully obnoxiously loud anytime I swallow. I’m terrified of medication making things even worse.

All I can do is sit very still, watch TV on mute and try to calm my increasing downward spiral. I can’t leave my house, see my family, interact with my partner, or do anything to help keep my mind busy during this nightmare.

I know I’m only a month into this but I haven’t read of anyone’s symptoms being like mine this quickly! My pain went from ‘only happening during loud or prolonged sounds and going away as soon it stopped’ to ‘now a constantly ache and a sharp pain when I hear noise’. This is not a normal case. I have worsened so quickly and I don’t know how or why. I have begged for help but I see there really isn’t any, not for these strange cases. I can’t keep going on, I don’t feel hope anymore with this worsening...

I’ve fought my whole 25 years already, I don’t want to do it anymore.

 

What do you mean 'quickly'? For me, tinnitus was developed in a matter of seconds. I can sharply delineate the point of no-return, when the silence was lost for good. The hyperacusis and ear pain went away in a year or so, and the tinnitus got considerably better over a few years, although clubbing would always entail a few weeks of quite unbearable period.

But I was careless and damaged my auditory system once more. The tinnitus and hyperacusis are seriously messing with my life, and I've had to abstain from many things I used to find enjoyable. I need some good news like so many of you.

 

My LDLs went from 50s to 30 in the month I’ve been in sound isolation with mostly 24/7 protection.

 

Ever tried plugging just one ear and leaving the other one exposed to ambient sound? I mean, if your tinnitus is bilateral like mine. Gives me the impression that the tinnitus is just in one ear (the one which is plugged), which makes it easier to manage and ignore as it's confined to its own 'compartment'. The mornings are hell, though, what with morning serotonin levels adding to the anxiety.

 

2 years ago, I tried a pair of hearing aids, and it has substantially reduced the ringing in my ears. The good thing is that you will know within 10 minutes of using them if they will help you or not. Every hearing aid specialist will let you try them for free for two weeks.

 

In my case, although hearing aids didn't lower my tinnitus, they made my hearing better. But after I achieved "catastrophic" level tinnitus, I had to stop using them as they aggravated my tinnitus.

 

Let's all remember those tonight who ended their lives because of tinnitus and/or hyperacusis.

My heart goes out to their families too.

 

My life has no value since I have become disabled due to tinnitus and hearing problems. It's been over 3 years and there is no purpose in surviving any longer like this. I can't concentrate for a single minute due the screaming tinnitus that never decreased in volume one bit, my experience in university right now is hell because of this. I won't be able to work a normal job, I can't hear conversations even in optimal conditions - my functional hearing is getting worse even though the hearing levels don't change. Seeing the people my age in their 20's living life to the fullest without tinnitus and hearing loss.

If only I hadn't worked in a noisy café for over a year. Who would have thought that would be the biggest mistake I could make in my entire short life. I can't actually describe how disabled I became. I rather be bound to a wheelchair or have any terminal disease, anything but this disability. What's it gonna take for the medical community to take hearing loss and tinnitus fn seriously?

I really hope that the younger generation who are exposing themselves to headphones too early (you see 6-year-old kids stuck to their AirPods) acquire hearing loss and tinnitus as early as possible in the millions, because if this doesn't turn into an epidemic, we won't see any treatment in the foreseeable future. Although with all the active noise cancelling tech they are actually safe - unknowingly.

I don't actually care anymore how my life will turn out, as I have already lost everything. I always have the choice to end it all, which is the only thing that consoles me.

 

Insane how each level of functionality you lose, you beg for the last level. I'm now room bound because of reactive tinnitus -- the spikes don't seem to settle, just stack on top of each other. On worst days I must have 25 tones, especially when I lay down for whatever reason. On top of that, a shrill head hissing/buzzing that was my main complaint.

Once I realized the Clonazepam fucked my life up, I tapered correctly and still got burned. In a month I went from being able to go outside and do anything even with this shitty noise to protecting against sounds like the fridge which triple the volume of the tones and give me burning face pain for hours.

I talked to a lady who c/t 3 mg Klonopin after 3 1/2 years of using it, went back on it, c/t again, went back on it, and yes, c/t again. She was complaining about her tinnitus that she can only hear in quiet rooms. What did I do?

I c/t 0.5 mg in 2020. A fucking year later I take 1 pill and it kindles me, which I didn't even know was a thing, and I kept taking it and shit kept getting worse and worse. I then tapered down over 6.5 months, going slower then recommended, and end up debilitated. Lol.

We'll see if things improve, otherwise I obviously cannot live like this.

Shout-out to the people who have been homebound for like a year, but I'm not living my life like this.

How there is not a single treatment for this, I have no idea.

 

@BrysonKingMe, it will improve, it must! You will be glad you didn't take your life but endured the suffering. You stopped taking the Clonazepam on Monday? I hope the reactivity lessens in a couple of weeks.

 

Hi @Zugzug, @Chinmoku, @TheDanishGirl, @grate_biff, @dan, @roy1159, @BrysonKingMe, @Theezy, @Moni97, @Travis Henry, @PeteJ, and all my friends who are suffering and who find themselves here.

Take baby steps, exercise if you can, eat well and be kind to yourself.

I really do love you guys and hope you will get better enough to taste joy that you so deserve.

See you around,
DL

 

At this point I sound like a broken record.

3 years is more than enough to wait to get better, and my functional hearing and my tinnitus (which was really bad from the onset) only seem to be getting worse. I'm only 23 - seeing everybody, whether my age group or not, without tinnitus and hearing problems, living their life to the fullest. I must be the dumbest man alive to throw his life away for a part time job. Although inadvertently as I'm probably predisposed - as people work 20 years in the music industry and don't end up with such damage to their hearing apparatus.

For the past 3 years I haven't been able to function at all, I can't work, I'm enrolled in university but it's actually impossible to study at academic level with severe tinnitus and nonexistent hearing functionality - I was a top student before, the cognitive disability that this causes is unreal.

I can't even get disability for this as my hearing levels are at worst 15 dB and 20 dB at 6 kHz, all other frequencies are at most 5 dB (even the ultra highs) - and at the same time my hearing functionality is the same as people with levels up to 50 dB even at "speech frequencies" - even conversation 1 on 1 in a quiet room is becoming incomprehensible, and keep in my mind I've not been exposed to noise for the past 3 years.

I was fully functioning before and now I can't do anything with my life... stupid joke.

Drop every disability at my door and I would be functioning 100 times better than I do now. How these problems don't have any recognition is beyond me.

I actually do really give up at this stage. I'm hoping Pegasos will accept my application so I can be done with this neverending nightmare I got myself into.

 

@roy1159, just before I came here and read your post, I was on a suicide website where ironically, I found this inspirational quote.

"When you come to the end of your rope, tie a knot and hang on."

At least wait until Susan Shore's device is out. You've held on this long, just give it a bit more time.

 

No need for this sort of disclaimer, btw.

Seeing as there is (apparently) no limit to how unendurable life can become for an individual, it is just so that there should be no limit to how much one might need to vent about how unendurable life has become for them, also.

Anyone who tells you otherwise -that you're repeating yourself, or that you're "being too negative" - seriously needs to re-evaluate what level of sympathy and/or support they expect to receive, if/when things go cataclysmic for them.

 

A complete spiral of a multitude of - potentially - neurological symptoms caused by either continued stress from severe hyperacusis and tinnitus, medications or both, are seeing me hitting a hard downward trend and very quickly.

Body spasms, silent acid reflux (LPR), a month long severe sleeping disorder (rarely sleep most nights) and now dysphasia which prevents me from eating any solids (within 3 days!) - has destroyed me.

Everything is progressive. Despite my attempt to run from pillar to post between ENTs, neurologists, rheumatologists and A&E - I've realised there isn't a way back from any of this.

It's not a life I want to lead. Can't sleep, can't eat, can't drink and raging tinnitus as well as painful throat spasms and other body spasms.

Tinnitus set in 4 months ago, all these other issues set in just 4 weeks ago, and getting worse at a ridiculous speed.

A life over because of a stupid decision to clear the wax from my ears by microsuction to hear a little better.

 

It wasn't working at the café that initiated your ear problems, it was a virus. You said it yourself, you had a flu-like episode before everything went downhill. Trust me, a virus caused my tinnitus and hyperacusis as well. And on top of that, it gave me ME/CFS from which I luckily recovered after a year of suffering.

EBV, COVID-19, CMV, Varicella-Zoster Virus, you name it. They can all mess your hearing pretty bad.

 

I want to die of a terminal illness. I want to die.

I wish I could’ve gotten cancer instead of my parent. I wouldn’t have it treated. I don’t care how painful it would be, I’ve seen my grandfather die painfully of lung cancer and I wish it would’ve been me instead. I’d rather have short term pain knowing it’ll be ending with death than long term pain unsure of the end, and I’d rather get it than someone like my parent and grandparent who want to live.

I have other chronic illnesses besides tinnitus, including chronic pain. I do not want to live like this. I’m so young and I have so many agonizing illnesses. I want to die and people who don’t do, it isn’t fair. I want to die so badly. They shouldn’t.

 

We don't want to die, we want to live and live it to the fullest! Hang in there! I'm right there with you.

 

If it wasn't for my audiometric loss at 6 kHz, I would tend to believe it, but I have 15 dB and 20 dB loss at 6 kHz which is a massive loss, especially being so young. It's classic NIHL. How did I end up with such damage so young is another question (It can normally take up to 20 years to acquire that damage for noise exposed person).

 

I have a few other chronic and health issues but nothing compares to this tinnitus nightmare. Never entertained any suicidal thoughts until tinnitus, which I have had everyday the past 10 months. I wonder why I'm not dead yet.

 

I can't take another day of this torture, i can't! I have already thrown away more than 3 years of what should be my prime years for it to get better and it's STILL severe. I'm not going to waste my life away and survive countless days of torture and dysfunction because of my stupid mistake. Hell no. And people wonder why we are suicidal, BECAUSE WE CAN'T FUNCTION AT ALL! Our symptoms are DISABLING!

I hope this week will be my last so I can finally get some peace.