Suicidal

You know, it's amazing, and I'm sure many here can relate.

Even on the days with less or even no suicidal thoughts, it's always right there. It's so scary to have such unstable hope. On good days, there's false optimism, on bad days, it's reality. And it doesn't matter that I'm on antidepressants. It's always right fucking there.

 

I understand. I had false hope yesterday. It was a better tinnitus day. Tinnitus was at a level I could mask better and it was even on both sides. Normally I'll have one or two sounds on one side, one or two different sounds on the other side and the brain doing something else.

Today I am back to not wanting to live anymore. My entire brain sounds and feels like a waterfall of tiny breaking shards of glass and it's loud. This isn't normal. People can't spend their day with these noises and sensations and not be a wreck like I am.

Is this even tinnitus? When I blocked my ears this morning, I heard very little, a bit of background noise from my brain.

 

Quality of life is currently lower than low. In pain, feeling very sad, alone, and hopeless. Too many things wrong with my health. Each time I think how it can’t get any worse than it already is, it does.

 

When you work out and then later that night, out of left field, whammmmmmo, suddenly the ear goes deaf and tinnitus starts spiking. You can hear a minute after but the tinnitus now is just... like hot nails. I'm white knuckling through work while coworkers wonder why I'm so slow.

And yesterday was a great day until this.

Because what... exercise? Some salt in the morning? This shit is impossible.

 

My ENT and audiologists tell me to stay off tinnitus forums, and researching the internet, fearing it will make me focus on my tinnitus more and make it worse.

It appears they have no clue how bad my tinnitus really is.

 

Yeah, you know... My tinnitus is so damn loud, getting on the forum and typing a post makes me think of it LESS.

These people don't get it. I can't not think about my tinnitus when my entire brain is buzzing, screeching and vibrating.

 

I hope you are doing OK today.

 

Hi guys, I'm at the end of my rope so I have to vent here as NO ONE else can resonate with my situation. This will probably be my last day in this hell that was once life. I've been following this thread for several months but only now managed to sign up because of a technical issue so I assume as if I know you.

Since the start of 2020 this nightmare started, I woke up and it was there. There was no acoustic trauma or long term dangerous noise exposure. I worked mornings in IT so very quiet, in the evenings part time at a cafe' which wasn't that noisy in the evenings. Tinnitus started at moderate level and even though I knew it would probably be permanent I tried to be optimistic. Hearing was borderline normal (all normal apart from 25 dB hearing level at 6 kHz in the right ear).

So I went on with life now working with earplugs at the cafe in order to not make it worse.

In June 2020 it suddenly started to worsen dramatically and I lost my mind and found myself at the ER but only got Mirtazapine which helped me fall asleep but that's it.

2 months later I listen to the TV and now I can't understand what is being said. All I could hear are S SH and TZ sounds coming from it, like hisses. Checked hearing again but it got back to normal (no anomaly at 6 kHz anymore), did ABR test which came back normal. Doctors had no answer as to why I can't understand speech suddenly.

A month later I tried ending it but was caught by the rails. From then on I acquired several chronic illness which I tried fixing but to no avail. Every day is worse than the previous.

I'm only 21 and my only choice is to end this nightmare. I hate thinking back when realizing I was about to started studying in my dream university which I worked so hard to get into, only to end up in this hell. Doctors are fucking useless in treating let alone curing (lmao what is even curing) my conditions, I get the blame for refusing psychological help which I've tried. It doesn't help because they continue their normal lives while I return to this hell.

I'm just tried of it all, I've tried ending it with 'only' catastrophic tinnitus and basically being almost deaf (???) and now with this new physical condition I can't even do nothing, just typing this inflicts pain on me. I have never seen a case where someone can't suddenly understand speech (even in quiet environments - like TV in quiet room) and every test comes up with nothing. This is just a cruel joke. Tinnitus on its own when it's severe makes everyone almost suicidal but suddenly not understanding speech AT All? That's too much for me to handle. Silence to me was everything and I even used to translate in the past movies from English to my native language. My Brain is a mush since this hell began, I have the memory and attention span of a fish. At this point it feels surreal... All of it, like I'm in nightmare I haven't woken up from yet.

This has been too long and I doubt anyone will read this but anyway. I really hope this is my last day here, I can't survive another day of this, even an hour. I will finally have peace and quiet from it all. I couldn't in my worst nightmare fathom my life ending before I was able to start it as planned.

In hindsight I wasted 21 years for nothing, only to have no choice but to kill myself.

 

Hi. This honestly breaks my heart. This is a lot for anyone to bear but at 21, it's even more cruel and unfair.

You know this obviously, but your case seems really bizarre. I have a lot of trouble with TV audio myself (I need captions to watch anything) but not to your extent and I don't have much trouble talking to people in person. Is it at least better in person or the same?

Have you seen a neurologist by the way?

Don't let anyone push the mental health aspects as the primary problem. You need a diagnosis to start and you need really, really strong emotional support that "getting help" is no substitute for.

(Hug). I'm really sorry.

 

I'm so sorry. That sounds like an absolutely horrible experience. I fully believe you regarding the inability to understand speech, but out of curiosity, what are your "Words in Quiet" and "Speech in noise" scores like on recent audiometric tests? What do your doctors think?

Have you tried any medications to treat this? I think you should explore the medical end pretty hard.

 

Did anything happen a day or two, up to a week before? Noise is not the only trauma.

Did you have any accident? Did you have any barotrauma? Any kind of excessive straining, at home, at work or at the gym? And did you have any other symptoms when it all started like feeling off balance or anything similar?

 

Thanks a lot for commenting. It is indeed cruel. Actually the only time I can understand speech perfectly is when talking to people in person, guess I forgot to mention that (for you it makes sense because of your measurable hearing loss if I remember correctly) .

ENTs and the Neurologist I visited have given up on my case. The neurologist only ordered a brain MRI and an ABR test, both of which were normal. In the least I wished they would have an explanation for what went wrong but even that is too hard to ask. I remember always hating loud noise and although using headphones for several hours a day in my teens I always was aware of the volume and hated loud places and avoided them like the plague.

Nothing of it makes sense but I have ceased looking for it, I just want the pain and suffering to stop.

I hope in one hour I will have the courage to leave for the nearby city and jump off a building, no purpose to suffer as hell awaits for tomorrow as well.

 

Just throwing it out there because I don't know what you know. If it's not a brain lesion issue and it's inner ear related, there are drugs in the pipeline. In fact, FX-322 results will be out very soon. This drug regenerates hair cells, particularly in the upper frequency ranges, which is highly relevant for speech. The new hair cells also regrow fresh synapses, vital for speech. It could also help with the tinnitus; if your loss is at 6 kHz, that's not super deep, and within the range of what the (even initial) formulation of FX-322 could hit.

Otonomy also has a drug, OTO-413, that rebuilds synapses, also vital for speech. If your case is really bad, it's possible with enough effort that you could be a candidate for compassionate use.

I'm so sorry this is happening to you.

 

Thanks for commenting. It is indeed a nightmare and I have no idea how I'm managing to survive every day, damn survival instinct I guess. At the audiometry tests I didn't perform a speech in noise test but only was required to hear noise in quiet and it was 'perfect', the discrimination 100% if that's what you meant. The ENT at the hospital explained that it can't be hidden hearing loss as I'm too young for that and also I have trouble understanding speech in optimal conditions. (I can only understand perfectly when talking in person). ABR and brain MRI normal as well so I'm at a dead end.

I haven't tried any meds but Mirtazapine and Amitriptyline for suicidal thoughts and insomnia (neither helped).

 

Hi. Actually I had a common cold a week or two before but nothing abnormal besides that. I didn't have any balance or vestibular issues either, just went to sleep and woke up and it was there.

 

Funnily enough, my standard audiogram is *completely* normal except for mild losses at 125 Hz and 250 Hz but it falls off a cliff from severe to worse after 10000 Hz (I also can't hear thunder well so I know below 100 Hz is toast, too).

It was not "measurable" on standard audiogram and it was so frustrating to keep telling ENTs "no really, my hearing is fucked, I don't care what this audiogram says".

In my case, I think it's a combination of very HF and LF losses, and a lot of IHC loss (audiograms mostly measure the OHCs). I also think I have some other damage from the antibiotic ototoxicity but that doesn't seem to be your issue.

As drugs like FX-322 are in trial for both IHC and OHC loss, I hope it will help me and maybe you as well.

Please get an extended audiogram if you haven't already. Sometimes severe damage at the high frequencies also point to harder to detect damage at lower frequencies.

 

So several things.

I (fortunately) don't have speech recognition issues, but my understanding is that there's a world of a difference between words in quiet and speech in noise. It's totally insane to me (and evidence that you should look for a better doctor) that you didn't have speech in noise checked. I realize that it's still possible that it comes back normal, but you have other areas where speech is impossible, but if it did show something, your doctors would likely change their tune.

Another thing, regarding the depression. I know what it's like to have a problem that's causing the depression and be told that the problem is a mental health issue. It sucks and more than anything, we feel like we are enabling asshole doctors by treating the depression. However, even though they are wrong, there can be value in coping. Just hanging on. They definitely can make tinnitus worse, but what if you found one that enabled you to cope until the regeneration medicine helped you?

 

Oh I see. I'm sure I have IHC damage but it doesn't add up with previous exposure to noise, also the ENT said hidden hearing loss can't occur at this young of age but afaik IHC damage doesn't pass on young fellas either, it occurs whenever exposed to loud noise. It ain't ototoxicity, that's for sure. What baffles me really is that people work years in construction or other noisy industries before that much damage takes place (even though ours don't come up in normal audiograms), I guess if everyone that worked several years in a cafe had this much damage there would be an epidemic.

 

I read a rabbit study once where for unknown reasons some of the individuals had selective IHC damage from noise and little to no OHC damage. They suspected this may apply to people as well. Not saying this is for sure your case/diagnosis but often people with extensive IHC issues do have very abnormal audiograms as well but only when they look at the 10000 Hz-16000 Hz range and it may give a "clue" imo.

 

I had that phase up to a few months ago. Now I don't have "good" days anymore, just a fleeting minute of hope every now and then in a sea of torture. It's always there.

First of all, reading your story breaks my heart. I just wanted to say that mine started with a common cold too, although an heavy one. The tinnitus I have now is insane and I am totally incapacitated, probably cochlear damage, but your symptoms seem worse.

Have you been on any medication prior to onset or during the cold?

Medication is coming soon (results by the end of March) from ear cell regeneration. You might have a problem with high frequency hearing loss (a virus with the cold?) that damaged your ear cells on the high frequency end, which is where this new drug, FX-322, has shown to be most effective. Other than that I sympathise, I'm hanging on for my family but it's torture every day. I'm waiting for the FX-322 results.

 

SMH. We have self-driving cars on the horizon, but a young person can't have hidden hearing loss? Come on.

 

Have you ever seen a Neurotologist? You have never had a CT, have you? CT means exposing yourself to radiation so they usually send people to MRI but there are some conditions (several types of third window syndrome) where nothing shows up on MRI and sometimes something shows on a HRCT, long story, but if you have nothing to lose, try to visit a neurotologist, but a neurotologist who specialises in third window, and have a HRCT (not just any CT) on order to check if you maybe have anything fixable.

 

Yeah it's ridiculous...

I have seen a Neurologist but not a Neurotologist. I have done both CT and MRI for the brain but nothing came up. Third window symptoms don't seem to apply to me as I don't have conductive hearing loss. I do have mild hyperacusis and what I believe is chronic ETD.

My tinnitus is also reactive which I believe results from mild hyperacusis, I can't escape that because I live near an air base and F-15 roam over my town and whenever that happens tinnitus is louder than it already is. I'm losing hope and I can't seem to hang on to my life as I suffer from other debilitating physical problems which to my demise are becoming chronic. I believe if I had the ability to understand speech I could somewhat function until the treatments arrive. I believe FX-322 will help because the only thing that can explain my hearing issues is EHF hearing loss which I'd like to investigate if I can hold on until then.

I do suspect I'm more vulnerable than others otherwise everyone my age should have this problems as I always hated loud events and loudness in general. Guess it's just the luck of the draw

 

@roy1159, just to add that some people who got severe tinnitus have experienced other neurological symptoms later (for example I have visual snow and tremors but they are nothing compared to tinnitus, while other people got more serious conditions). There is not enough science but one might suspect that the disruption caused by tinnitus on the brain and brain filters propagates and triggers other conditions. That is to say that treating tinnitus (FX-322) might bring about improvement or remission of other symptoms. I personally can live with my visual snow, floaters and tremors, it's the tinnitus that is killing me. I hope we both find the strength to try FX-322. I'm not clear on the timeline on compassionate/extended use in case March results are positive but I hope it's only a couple years away.

 

Today I actually am wanting to die. I keep getting teased with maybe improvement only to be slammed with it getting constantly worse then being unable to work or cope. It's been 6 months and I can't deal with this anymore alone.

 

I don't know what country you live in. I still think you should at least try to talk to a neurotologist. No more tests, just a detailed explanation of the symptoms and onset of symptoms and what aggravates the symptoms. You can even try a telehealth consultation if you don't have any good neurotologist near you. But it would be good if they could take a look at your CT no matter what the ENTs and neurologist say. Some people benefit from diuretics and low sodium diet. It depends on the cause of tinnitus. But even if you don't know your cause you should try everything that will not make it worse just in case. I know it sounds like I'm bluffing but Dandelion Root tea is one of the strongest herbal diuretics and in combination with Meniere's diet (I know you don't actually have real Meniere's, I understand you were never dizzy, but avoidance of salt and coffee can do no harm) it sometimes helps, depending on the cause, and you can actually try these yourself without asking any doctor around you.

 

1 week until I go to the cancer hospital... I hope they can figure out what's wrong with my body.

 

At this stage every day I don't off myself is one day closer to the arrival of the treatments, I just don't know how I will be able to stop my life for this long. One day at a time I guess.

 

@roy1159 did you posting in this thread help you stop from killing yourself today? It's a good thread.

 

It did help today.

Indeed a good thread and a necessary one.