Suicidal

That’s true — nothing stays the same forever. Good point, @Chinmoku. It’s just sad that people aren’t more innovative and compassionate. It’s criminal the way the governments of this world manage money. A lot of problems could be solved if cash was utilized properly. Every year, the USA spends that 54 billion in space exploration instead of funding research and treatments for countless diseases. Crazy stuff like that. It should be prioritizing its people, not stars and planets and galaxies that are light-years away and totally unreachable. We’ll never go to those places, will we? So why does it even matter? What’s the point of knowing something exists if you can never hold it in your hands? What’s the point of pursuit if it defies possession? What it boils down to is sad: people are greedy and evil.

It’s within our power as a species to solve the problems of this world and exercise compassion, but we don’t. In the known universe, we are the one and only group of beings that have intelligent life, yet we squander it. Look at our planet and how messy it is. We are truly failures, us humans. If our hearts were in the right place, we could achieve things insurmountable. Instead, we have blood on our hands and no one to blame but ourselves. The dead who sleep will never have a second chance. And those that suffer will never see the light of day. We should be ashamed to be human.

 

That's the killer for me. Making mistakes when you know better. But then this is such a fucked up condition that things can get worse even if you have taken the right precautions.

 

In a coffin you have the problem that there is no ventilation. But you can buy a sound proof cabin. The ones that I looked up online had a noise reduction of 30 dB. I am wearing foam earplugs at night which probably has the same level of noise reduction, but for someone who isn't able to use hearing protection for longer, this might be an option. However, I don't think I have read about anyone who has a sound proof cabin here, but I may be wrong.

 

Yeah knowing what I'm going through now compared to what I had tinnitus wise, I really wish I could go back in time and tell myself not be an idiot and get your head straight and think about what could happen. Knowing that I can't change those things and being left with the end result is hard to swallow at times.

 

I can't argue with this conclusion. Once I would have. Even in our private tinnitus hell, look at what happens. Funding is ridiculous. We had a promising, customized treatment from University of Minnesota that could potentially save many of us and it's getting dust on some abandoned shelves. The funding for other projects, as you pointed out, is peanuts. Does it have to be like this? Errors on DNA are avoidable with enough research, and we could find cures for many illnesses, or we could invest in transhumanism, but instead so much money goes to military and space exploration. True, some space research then finds applications even in medicine, but a lot doesn't. We still have starving children in 2022, a crazy list of torturing chronic diseases, wars. We definitely failed. Add climate change. Plastic in the oceans. One would think developing a fusion reactor would be one of the most funded projects on Earth. Guess again.

If an enlightened and advanced alien civilization were to invade us, it would only do us good, probably. Humanity is not doing too well. Some SF stories have alien AIs scouting the cosmos for civilizations, deciding whether each civilization they find has enough potential to continue existing or it should be destroyed before doing too much damage. It looks like humanity is decidedly in the second group, despite all the beautiful science, art, poetry, music, love. Let's hope this changes at some point, but I won't hold my breath.

 

Didn't I tell you to be careful and stay home?

 

I don't know... I was home. Very loud noise is all around at times. I didn't do a very easy thing that would have saved me from the damage.

 

Hi dan,

I hope you realise you are not her mother/father and how unhelpful your comment is, especially in this thread.

 

I don't see any reason for myself to continue living like this, I have nothing to fight for anymore. For the past year I have tried going back to normal even with my catastrophic symptoms but it just isn't possible to continue in my current state without any remedy/treatment - none of which exists as we all know!

The catastrophic tinnitus made my first year at university a nightmare - you just can't concentrate with severe tinnitus (which can't even be masked) and I feel like I'm wasting my time because I know that all my efforts will be for nothing as the tinnitus will dictate the achievements and functional ability - both almost non-existent.

Add to that my lack of functional hearing - I seem to have the speech comprehension of 70 year olds for some reason, I can comprehend only about 20% of what's being said daily and I can no longer go on like this. Even at quiet environments I have huge trouble, if it was only in complex listening environments it wouldn't be a huge problem but I can't even watch a movie or a damn short video and comprehend what's being said. YES, I know my barely 2 years of working in café caused significant damage to my hearing but according to the test results my functional ability shouldn't be THAT bad. What other choices do I have? Continue like this when I have 10% of my previous functional ability and wait for WHAT? For treatments to reach the market in DECADES from now? My situation is urgent but what does it matter? Nothing can be done and at the same time I'm done surviving like this, hell I'm too young to be dysfunctional like this, and all because I worked 2 damned years in a café? What a joke.

My family, doctors and audiologists don't get just how catastrophic my situation is but does it matter really? There is nothing to be done anyways. Best I can do is rant online lol.

I'm thankful for the 20 decent years I had in life as a healthy and functional human being but after living like this for almost 3 years, this is just pure surviving and one can't go on like this forever, nothing is going to get better as the damage is done.

The audiology department that evaluated me said we can repeat all the tests and see where we go from here but there is no way to address the issues - hearing aids aren't viable for me, and there are no audiological research going on in my country that I can enroll to and which can make my situation better. I did my best these 3 years to survive but that's enough.

I have only a single regret in life, working in that café, if only I had known that it's so dangerous that my life would end at age 20.

 

If the United States had listened to the Native Americans and sought their wisdom about the medicine that can be made from plants and how to eat properly instead of space racing with Russia to the fucking moon, the world could have been a very different place... this goes for all nations with indigenous people really.

 

@roy1159, I know what I'm about to say isn't helpful but when I saw your name again after so long, I was relieved you're still here. I've often thought about you and am sorry you're still suffering so much.

 

Can you describe what happened so that others can learn from that?

 

@roy1159, like @tpj said, I often thought about you during these months, I was hoping you had improvements, I'm so sad to hear you are still in hell, like many of us. Damn, this thread looks like a black hole or the coffin state of a Markov chain, it must be possible to escape it. I'm so sorry for all of us, man, but your story in particular is heart-breaking. Don't blame yourself though: people do the craziest things with their ears and nothing happens. There are thousands of people working in loud cafes, bars, clubs, discos etc who never get any problems. You can't blame yourself.

I would still hope hearing regeneration (a combination of hair cells and nerves) could help you but I agree it's further away than we thought originally. OTO-413 (nerves) seems to be doing well for now, Frequency Therapeutics is moving to FX-345 that should help across a larger range of frequencies but it will definitely take time, you are right there, and a day looks like a year in this state. I don't know what to say, I'm so sorry for all of us. We need a miracle.

 

What happened?

 

The people that scoff at treatments and preach acceptance are tone deaf to the realities of true suffering. Acceptance is NOT acceptable for some. Some people are literally dead men or women walking. They can’t accept the situation they’re in. Their lives are ruins and reflections of bygone memories. We wouldn’t tell an epileptic to accept their condition, or someone with chronic migraines, or someone with severe back problems, even. We wouldn’t tell someone with Parkinson’s to deal with it. It’s unacceptable because the sufferer is too incapacitated.

Likewise, someone with severe noxacusis and tinnitus can’t just accept their conditions. It’s not that simple. Because acceptance means that the person has to live with the fact that they can’t live, basically. Extreme noxacusis and tinnitus make you incompatible with this world, so much so that even performing the bare essentials of life becomes almost impossible.

I can guarantee you that they wouldn’t be preaching acceptance if they were in my shoes. Because if they did, they’d have to willingly give up their jobs, isolate themselves from family and friends, and never leave their house. They'd have to wear protection for large portions of the day and listen to screaming tinnitus that causes sensations of physical pain. They’d have to surrender their pride and humanity, and become something less than human — a shell of the person they once was. They'd have to accept that their remaining days spent on this earth would be occupied by mourning their premature death, their past-life, and a future that’s out of reach. They’d have to accept that they’ve basically gone to hell for the rest of their life. Does that sound acceptable? Nah, not at all.

 

Thanks. It's really heartwarming. I wish I had left for good preferably by going back to normal life but by being dead is the other option which seems like the probable one for now.

I wish all of us would get the treatment we deserve so that we can go back to semi-normal or god forbid our old lives and shut down this forum for good but instead we continue ranting about our lives.

It's hard to not dwell no your mistakes when the damage that was done to us is irreversible and life changing/destroying - now it's our reality for no end, the medical community and everyone around us expect us to just accept the debilitating life that we are left with, if only they lived a day of our miserable dysfunctional life then they would finally understand.

I'm sad to say it but if hearing problems won't turn to an EPIDEMIC and millions will be left debilitated for ONE MISTAKE they have made, like us, in the following 5 or 10 years, we will have to survive like this decades from now and we know it's not possible. It frustrates me that there was never any urgency to really find a solution for all hearing/ear related problems, even though they can completely debilitate you to the point you wish to be dead already.

 

I don't know if anyone is suggesting that we should give up on treatments and just accept. What I advocate - is - be appropriately cautious about treatments until it is established that they are effective. I certainly advocate trying things which are fairly easy and cheap to experiment with - diet - supplements, white/pink noise etc. Where are I start to scoff - I admit - is expensive unproven treatments like Lenire. I don't like to see people ripped off and I have a hatred of companies which know their treatments are placebos and charge big money anyway - making claims based on studies they have paid for themselves. It is well known that sufferers of chronic conditions will pay ANYTHING to be cured - and many unscrupulous enterprises are capitalising on this. The last thing anybody should want to do - particularly someone with tinnitus - is kill hope. Hope keeps us going - gets us out of bed - helps us tolerate this din in our ears. But we have to be realistic - and for that reason - in the meantime while we do what we can to improve the level of our tinnitus and wait for real treatments - we need to try an endure it somehow even if we never will accept it. I don't accept it and never will - but when I realised it was not going away - I had some rough weeks - and gradually learned to tolerate it and keep living. I always live in hope I will wake up one day to silence.

 

Agree.

One Size Doesn't Fit All:

There is no 'one-size-fits-all' way to build an audience.
—John Stuart Mill

I think the big myth is that there's somehow a magic "one size fits all" solution. That, if it works for you it's going to work for me.
—Geetchen Rubin

The right way to deal with healthcare reform is not to have a one-size-fits-all plan.
—Mitt Romney

We all need to figure out what's right for us because nothing about life is one size fits all.
—Davud Agus

 

What is acceptance of chronic illness? I can't speak for what everyone has ever meant by this on this forum but I can speak to what it means for me.

First of all I don't come to this thread often so a quick background on me. I have reactive variable tinnitus, severe pain hyperacusis (burning and stabbing pain in my ears, neck, jaw and deep inside my brain), severe light sensitivity (I am home bound many days), two cancers (last major surgery a few months ago), one stage 4 and incurable, lost my young wife recently to cancer and have pain throughout my body every day much of it due to chemotherapy. I have had to learn how to deal with many chronic and severe illnesses for over 30 years and so I have some experience with the process of facing this and finding a better life. I only offer who I am to put my views on this in perspective. I dismiss nothing about the pain and struggle of this condition and have tremendous empathy for all sufferers, especially the severely afflicted here. I understand the frustration with being dismissed, thrown away, told to man up or go home and live with it. I know how hard and devastating this is. I know how scary the unknown future can be. I know how hopeless it can feel at times. But I also know what it feels like to have a positive outlook, even with all of these things. And to get better even when it looks hopeless.

So what is acceptance, at least when I use this word? It is not resignation, giving up. It is not losing all hope or just deciding that this is how it will always be and we are screwed. I suffer every single day but I will never give up finding ways to have more good days. I will never stop finding ways to cope better and become a better person with a better life even with all this shit that myself and so many others here have to deal with. My tinnitus and hyperacusis is better than it was when this started. So then what am I talking about?

Accepting that this has happened, accepting where I am right now, with whatever limitations that I have today. Releasing blame towards others who may have been involved in this starting (the A hole with the car horn), releasing blame towards myself for this happening (I was so stupid and forgot my protection and went to a party). Releasing any feelings of being weak, that's this is my fault for not being strong enough to fix this already. I did not get singled out to deserve this, it is not anyone's fault, especially my own. It just is. It is a process of letting go of how it got here and why. It is also a process of separating this affliction from who we are as good and decent human beings. When others judge us or say cruel or insensitive things, this is their opinion which is none of our business. Their callousness or ignorance does not define us. We must not find our internal validation in their words. It is about being kind to yourself. Releasing anger, jealousy, hatred, fear, anxiety, envy, comparing ourselves to someone else. We stop fighting how and why this happened and waiting for an apology or waiting for someone or something to make this right. These things keep us stuck, unable to move forward, to get better, to have more good days. Acceptance means this is nobody's fault, it just is. Take a breather, an assessment of where we are and then when we are ready, what are we going to do about this? What is the plan? What will bring us better days and hope? Those questions have their own long answers and I have written about these things often so I will not go into my view of how to deal with this after acceptance, thoughts for another day or thread.

I love all of my brothers and sisters here who suffer, even if you do not agree with me. My soul purpose is to help and be in the service of others. Pun intended.

George

 

@Jerad, @Chinmoku, at the next visit to your doctor's, consider discussing white blood cell testing. CBC may be helpful.

https://labs.selfdecode.com/blog/labs-immune-system-health/

 

Agree.

And in particular, a CD57, which measures how healthy the immune system is.

 

Hi my friend.

I am very sick. More stuff are just piling on. The list of symptoms are endless. I have serious SI also now. So tired of suffering. Can't kick the fucking benzo either.

 

No one would believe it: a world where every sound hurts, every moment belongs to pain, and every dream becomes translucent, out of reach and dead. Like a horror story come true, severe tinnitus and noxacusis are the brutes of brutes. Noxacusis is so absurd, in fact, that Rod Serling penned an episode that eerily resembled it for “The Twilight Zone” in 1964, titled “Sounds and Silences,” where a person goes mad when every sound becomes deafening and painful to him. Serling, of course, didn’t know such a thing is possible, I’m guessing, as the anthology series didn’t intersect with things plausible or normal usually. It found its footing in things surreal. So it just goes to show us how truly crazy noxacusis is — that he envisioned its wrath as a tale worthy of his show, known for its infernal and scary qualities, and themes of imposition, where those unfortunate meet worst-case scenarios in mind-bending fashion. When watching the episode, it’s crazy to see art imitate life for the victim. He goes to a doc for help, only to be turned away with disbelief and directed to a psychologist.



It doesn’t feel good to know I’m living in an episode of “The Twilight Zone.”

 

I'm sorry, my friend. I always hope in some sort of turnaround for us here but it's tough. I have been trying to taper the benzo very slowly but it's an endless grueling torture and I'm not even sure it's that, although I suspect it's making things worse. I don't think I can get through the taper, but on the other hand I worsen also on a constant dose so I have no choice but try under the assumption I am in tolerance withdrawal. I'm so sorry you have more symptoms and can definitely relate to be tiring of suffering. It never rains around here, it just comes pouring down. At some point all this cruel and senseless pain will end, one way or another.

 

Good to see you Roy.

I haven’t posted in this thread before but as somebody who suffers from catastrophic tinnitus, I understand the suicidality of those that post here. I have been following your story here and was wondering about you as you hadn’t posted in a long time.

Glad to see you are still around.

I don’t have any support to offer as I suffer everyday but it is sometimes nice to know that we are not alone in our suffering.

Keep on going man.

 

Interesting - on YouTube they have this episode from the Radio Show - sound only!

 

@GuitarMan, hey, how have you been doing? I had a recent worsening after a viral infection/acoustic trauma in January. My regime is not dissimilar to yours. I've managed with 30 mg of Mirtazapine for sleep/depression and tapered off Diazepam since February (started 10 mg/d and now 1-1.5 mg/day). Every 7-14 days I stop the Diazepam for 2 days and take 1 mg Clonazepam. This normally (75% of the time) reduces the volume slightly or moderately for 24 hours and reduces the sound sensitivity. I take the Clonazepam for 1-2 days, then stop.

I would like to completely eliminate the remaining micro dose of Diazepam and I am in discussions with my GP to trial Gabapentin. I'm thinking 300 mg once or twice a day.

A couple of questions if I may:

1) Have you had your September ENT appointment yet?
2) What effects does Gabapentin have on your tinnitus?
3) Do you take Gabapentin daily? What amount?

From the studies, if it's going to work, it seems to be on acoustic trauma based tinnitus. There was a case report on success in a COVID-19 patient.

Best wishes,
Nick

 

That famous quote: “Life’s a gift. Every day’s a blessing.” Are they, though, when every moment’s hell, every second, torture, and the days are spent exhuming the past, knowing that your life was dead and buried long ago? I have trouble relating to that quote, as severe tinnitus and noxacusis have robbed me of everything, literally. My quality-of-life is like 2%. No one would believe it — a world where every sound hurts, every moment belongs to pain, and every dream becomes translucent, out of reach and dead, like a horror story come true. How does one accept this world? How to cope with such despair... that’s the mystery. The world’s cruel — and its days repugnant — when dealing with such things. Life’s beauty lies in freedom or liberation, not confinement or oppression. Such horror is lost in beautiful words, words they don’t deserve, as tinnitus and noxacusis are too ugly for this world, even... too evil for its sins and treachery. They belong in the darkest corners of the universe, far from god and all things light. How, then, have they found a home here?

 

Just a warning, you are seriously messing up your GABA receptors and making yourself prone to much worse tinnitus stopping, then starting, increasing and decreasing doses like that.

 

Thanks @BrysonKingMe.

Is taking Clonazepam the way @Michael Leigh takes sustainable? Or is it a case of taking them regularly or not at all in your opinion?