Suicidal

[PeteJ]

The billionaire Kent Taylor just killed himself, he was the person we needed. Maybe I am selfish saying this.

The mainstream media is saying he had COVID-19, just a quick mention about his severe tinnitus.

That's the society we live in.

 

[Ed209]

The mainstream media is saying he had COVID-19, just a quick mention about his severe tinnitus.

That's the society we live in.

It's reported that COVID-19 was the cause of his tinnitus.

 

[Chinmoku]

Thanks. It depresses me so I don't follow it closely. I'll look at it. I'm already depressed enough. I hear you and feel the same.

Take care, Chinmoku.

I understand 100%, for me the failure of FX-322 Phase 2a has been a blow I didn't need. I hope we make it to treatment but it's a hour by hour battle. You too take care, Pete.

 

[Chinmoku]

The billionaire Kent Taylor just killed himself, he was the person we needed. Maybe I am selfish saying this.

Poor man, 600 million dollars and he couldn't do anything for this monster. We would need him alive. But to get there we probably need a billionaire getting this, someone like Gates, Musk, Bezos and the likes, not that I'm wishing any of them this nightmare but it would change things maybe.

 

[Chinmoku]

It's reported that COVID-19 was the cause of his tinnitus.

It is, but have you noticed in some of the reports tinnitus seems like a marginal corollary of COVID-19? Not all of them, but a few. The most infuriating ones say "tinnitus (ringing in the ears)", evidently most people don't know what tinnitus is (not that it is just ringing).

 

[Kriszti]

Poor man, 600 million dollars and he couldn't do anything for this monster. We would need him alive. But to get there we probably need a billionaire getting this, someone like Gates, Musk, Bezos and the likes, not that I'm wishing any of them this nightmare but it would change things maybe.

Grimes, who is Elon Musk's partner, has tinnitus. So he already has a connection to tinnitus.

 

[PeteJ]

Grimes, who is Elon Musk's partner, has tinnitus. So he already has a connection to tinnitus.

Grimes is a musician, right?

MSM will look for a way to blame it on COVID-19 somehow.

 

[Chinmoku]

Grimes, who is Elon Musk's partner, has tinnitus. So he already has a connection to tinnitus.

Yes, I think Musk included tinnitus among Neuralink's potential applications partly because of that, however he would probably approach the issue with renewed urgency if he were to get a severe version of tinnitus himself. A real urgency is what is missing in the picture, everything is so slow.

 

[Zugzug]

Yes, I think Musk included tinnitus among Neuralink's potential applications partly because of that, however he would probably approach the issue with renewed urgency if he were to get a severe version of tinnitus himself. A real urgency is what is missing in the picture, everything is so slow.

There's an inherent problem with celebrity cases of tinnitus and hyperacusis:

The more famous, likely the more accomplished. The more accomplished, the more the invisible disease is viewed less seriously. And I take no pride in saying that. One of the worst parts of these problems is that the more we accomplish, the less sick we seem.

It's not always nefarious either. I worked through chronic pain for years, and because I succeeded, my loved ones forgot how hard it was for me. They thought I was mostly in pain when I took a semester off school, when in actuality, it was chronic for years. Every accomplishment is a proof of a lack of brain fog or debilitation.

To be fair, this is purely human nature -- I am sure I do the same thing. This is another reason why people with invisible diseases suffer from self-esteem problems. There's an incentive to not succeed in order to be taken seriously. Of course, no one actually lies about their illness because obviously that's really weird and messed up. What ends up happening is the person pushes through only to end up being viewed as healthy, as they are making their disability worse.

So yeah, it's going to be hard for the world to think tinnitus is serious if, say, Musk had it to a severe degree. It's not right, but it's reality.

As far as Kent Taylor goes, they will just say that he died of depression -- or our favorite, he died because of how he dealt with the tinnitus. In other words, he didn't take his depression seriously, he didn't do enough CBT.

God is playing some sick game with us all. I've become numb to it after 6 years.

 

[Chinmoku]

There's an inherent problem with celebrity cases of tinnitus and hyperacusis:

The more famous, likely the more accomplished. The more accomplished, the more the invisible disease is viewed less seriously. And I take no pride in saying that. One of the worst parts of these problems is that the more we accomplish, the less sick we seem.

It's not always nefarious either. I worked through chronic pain for years, and because I succeeded, my loved ones forgot how hard it was for me. They thought I was mostly in pain when I took a semester off school, when in actuality, it was chronic for years. Every accomplishment is a proof of a lack of brain fog or debilitation.

To be fair, this is purely human nature -- I am sure I do the same thing. This is another reason why people with invisible diseases suffer from self-esteem problems. There's an incentive to not succeed in order to be taken seriously. Of course, no one actually lies about their illness because obviously that's really weird and messed up. What ends up happening is the person pushes through only to end up being viewed as healthy, as they are making their disability worse.

So yeah, it's going to be hard for the world to think tinnitus is serious if, say, Musk had it to a severe degree. It's not right, but it's reality.

As far as Kent Taylor goes, they will just say that he died of depression -- or our favorite, he died because of how he dealt with the tinnitus. In other words, he didn't take his depression seriously, he didn't do enough CBT.

God is playing some sick game with us all. I've become numb to it after 6 years.

I agree to some extent, I had strong but not continued nerve pain for seven years straight, with hours of agony, but managed to be very competitive and successful those years despite the suffering. No one of the few people who knew realized how hard it was and few people knew at all. However, this monster tinnitus I have non-stop is much worse.

Going back to billionaires or celebrities, we have seen examples like William Shatner downplaying their tinnitus in some occasions like talk shows or public events, as a kind of confirmation of what you are saying. However, I think it depends also on the personality of the affected person. Looking at billionaires for example, Musk could react very differently from Bill Gates. Has there ever been a case of severe/catastrophic tinnitus affecting a famous billionaire rather than millionaire or celebrity? I can't think of one. This does not mean your point would not apply even to different personalities, as it is not about personality, but I wonder if the extreme distress could not push a billionaire with the right personality to override the conditioning and start campaigning hard and throwing a ton of funding at the problem. Yeah, it's a naive expectation, if Frequency Therapeutics is struggling what can a billionaire do? And yet, there are initiatives like the Hough Ear Institute or the Bionic Institute that are going slow for lack of funding at a level that a billionaire would find ridiculous. Also, if the right billionaire learned about Hubert Lim and University of Minnesota, they could easily resurrect and accelerate the project, or go to Dr. Susan Shore with help and accelerate the completion and commercialization of her device. Again I'm being naive but it would be interesting to see it tested in real life.

You are right of course, it is a sick game, this kind of thing should not even exist in a universe with a minimum of sense.

 

[Ed209]

I don't think the press are averse to giving a strong headline in these kinds of situations, I just don't think there's anywhere near enough awareness. Look at the headline in Craig Gill's case, for example:

There has to be a paradigm shift for people to take it seriously.

As a side note, I think his band's song "this is how it feels" is very poignant, and strikes at all the same issues that tinnitus sufferers face. If you ain't heard it, listen here and I'll post the lyrics below.



Husband don't know what he's done
Kids don't know what's wrong with mum
She can't say, they can't see
Putting it down to another bad day
Daddy don't know what he's done
Kids don't know what's wrong with mum
So this is how it feels to be lonely
This is how it feels to be small
This is how it feels when your word means nothing at all
Black car drives through the town
Some guy from the top estate
Left a note for a local girl
And yet he had it all on a plate
So this is how it feels to be lonely (feels to be lonely)
This is how it feels to be small (feels to be small)
This is how it feels when your word means nothing at all
Husband don't know what he's done
Kids don't know what's wrong with mum
She can't say, they can't see
Putting it down to another bad day
So this is how it feels to be lonely (feels to be lonely)
This is how it feels to be small (feels to be small)
This is how it feels when your word means nothing at all
So this is how it feels to be lonely (feels to be lonely)
This is how it feels to be small (feels to be small)
This is how it feels when your word means nothing at all
Nothing at all
Nothing at all

 

[Bradleytech386]

Weed didn't cause my tinnitus... Concrete saws did.

 

[Matchbox]

Unfortunately I have health problems much worse than my ear problems that are why I'm planning on catching the bus... but I hope future hyperacusis sufferers have better treatment options than now. Ear problems seem to have a more hopeful future than the rest of my maladies

Any news, or new meds?

 

[__nico__]

Any news, or new meds?

All I do is get by the day with copious amounts of substances I do not want to mention on this board. I had a 3 Tesla MRI as well as a temporal bone CT scan, but I'm not hopeful in the slightest.

All of this done with the supervision of a neurotologist who knows his shit, mind you.

 

[roy1159]

Lately I have been dreaming about where I'd be in life right now without this mess.

Probably studying in university like I planned or otherwise working or traveling. It's so absurd that life can be shattered beyond repair from what seems like a harmless thing, a petty job in a café which so many young people work at.

Of all things, I miss the small things that used to derive me joy in old life. Watching a movie without getting depressed that I can't understand almost a single word, playing the piano without my tinnitus reacting to every note that I play, reading things for hours without being distracted every second because of the maddening severe tinnitus that I can't mask, being able to immerse myself by reading a book in absolute quiet, being productive (!!).

It sounds like I can't accept my new reality and that's true. I would gladly accept it and move on with life if my hearing problems and tinnitus alike weren't so severe and debilitating. I even tried to resume my normal life only to realize everything about my new life is anything but normal.

I have made the final arrangements regarding my departure from this mess. I don't know when I will finally end this but I hope it's soon enough. Only thing to try is to meet a Professor of Audiology and go through a series of more tests to understand why my symptoms are so severe - especially why I'm so hard of hearing. This and the jaw surgery which I doubt has anything to do with the tinnitus severity, let alone anything to do with the hearing issues.

I have made peace with the fact that this is my 'destiny', I rather have lived 20 good years than be miserable and debilitated like this because of working in a petty noisy job for 2 years.

This is just my personal view I guess.

 

[dan]

Lately I have been dreaming about where I'd be in life right now without this mess.

Probably studying in university like I planned or otherwise working or traveling. It's so absurd that life can be shattered beyond repair from what seems like a harmless thing, a petty job in a café which so many young people work at.

Of all things, I miss the small things that used to derive me joy in old life. Watching a movie without getting depressed that I can't understand almost a single word, playing the piano without my tinnitus reacting to every note that I play, reading things for hours without being distracted every second because of the maddening severe tinnitus that I can't mask, being able to immerse myself by reading a book in absolute quiet, being productive (!!).

It sounds like I can't accept my new reality and that's true. I would gladly accept it and move on with life if my hearing problems and tinnitus alike weren't so severe and debilitating. I even tried to resume my normal life only to realize everything about my new life is anything but normal.

I have made the final arrangements regarding my departure from this mess. I don't know when I will finally end this but I hope it's soon enough. Only thing to try is to meet a Professor of Audiology and go through a series of more tests to understand why my symptoms are so severe - especially why I'm so hard of hearing. This and the jaw surgery which I doubt has anything to do with the tinnitus severity, let alone anything to do with the hearing issues.

I have made peace with the fact that this is my 'destiny', I rather have lived 20 good years than be miserable and debilitated like this because of working in a petty noisy job for 2 years.

This is just my personal view I guess.

I want to die but fear death.

Tinnitus gave me a second chance and I blew it.

 

[dan]

I have already contacted Pegasos and made sure to get informed about the procedure.

Does VAD hurt?

Catastrophic. Probably 10 sounds of oscillating electrical buzzes and static tones as well. It's reactive and unmaskable, only the shower head is able to almost fully mask it. I also have unexplained hearing problems, I basically have the hearing capabilities of elderly people with normal audiogram and normal nerve functioning, it can't be solely explained by hidden hearing loss. I'm 15 months into this and it only got worse.

Are you able to sit in a quiet room?

Would you still want to use Pegasos if you only had the tinnitus?

 

[ajc]

Does VAD hurt?

At the end of this documentary you can see how VAD works and how beautifully painless it is.

It's going to sleep and not waking up.

 

[roy1159]

I want to die but fear death.

Tinnitus gave me a second chance and I blew it.

My only fear right now is botching the suicide attempt and the method being painful. Like I didn't suffer enough in the last 15 months lol.

Does VAD hurt?

Well regarding VAD, they inject you a drug and it's like going to sleep. Nothing more peaceful/painless than this.

Would you still want to use Pegasos if you only had the tinnitus?

That's a tough question... when I only had the severe tinnitus I was actively suicidal even failing twice. Normal life wasn't possible with only the tinnitus and now with the severe hearing problems it's only surviving really. I'm having hard time relating to even the severe stories here anymore and I see no point in enduring more days like this anymore as I'll never even live normal life at 5% - nothing will get back to what it was or magically or suddenly get better, I wish I was exagerrating.

So, the answer is yes.

 

[Jazzer]

At the end of this documentary you can see how VAD works and how beautifully painless it is.

It's going to sleep and not waking up.

Thank you for posting ajc.

A crucial practice that should be available to everybody everywhere.
Why is there so little empathy and compassion.
The religious lobby makes me sick.
We don't even know which 'MAN' wrote the Ten Commandments?
It can't have been a 'GOD.'
They are incapable of writing anything,
let alone 'stone-masonry.'
As I understand it - they have no arms?

 

[roy1159]

Every minute that passes I feel more detached from reality. I honestly think next week will be my last.

 

[Jazzer]

Every minute that passes I feel more detached from reality. I honestly think next week will be my last.

I am so sorry Roy.
Sorry for you.
Sorry for me.
I absolutely understand.

Dave
Jazzer

 

[FGG]

Every minute that passes I feel more detached from reality. I honestly think next week will be my last.

It's ultimately your choice of course but given the finality of that choice, would it hurt to see how you do after your needed jaw surgery (and hopefully follow up jaw physical therapy)?

Are you adverse to trying everything first?

 

[Contrast]

@Jazzer is right. All the technical jargon is useless if in the end it doesn't work. We've been let down many times before with some promising treatment. Most ENTs don't even follow the ear related biomed companies to my knowledge. Until something becomes available to them to treat tinnitus they don't have any need to mention it to their patients. I have seen an ENT today at Mayo and mentioned some promising treatment like FX-322 and they say nothing, probably because it's not available to them.

They don't even know this stuff exist.

The ENTs at Mayo are 10 years behind the scientists and researchers there.

Every minute that passes I feel more detached from reality.

I am beyond disattached from reality. It is hilarious when behavioral therapist who get paid by the United States Federal Government have an interest in reforming people like me.

My brain fog is essentially a combination of two things.

Ever since I have been doing art and other stupid shit my brain fog ADHD has gone away.

 

[vermillion]

I have been feeling very low for several months now without any kind of improvement. My condition, like few others' here has gone out of control and it is not possible to keep on like this. During this year I have gone through an array of several losses, tinnitus & hyperacusis consequences included, but also my father who I miss more than ever. Needless to repeat how miserable life is at the moment due to tinnitus & hyperacusis. Those who are debilitated by it, know well what I am talking about.

 

[vermillion]

If only there was a pain free option to just disappear. Like can I please just get an IV drip of Fentanyl and slip away. I've had enough.

On the contrary, could sublingual Fentanyl pills be lethal (those can be prescribed legally here, as there's this form of that compound at the pharmacies), or is Fentanyl fatal only parenterally?

 

[roy1159]

It's ultimately your choice of course but given the finality of that choice, would it hurt to see how you do after your needed jaw surgery (and hopefully follow up jaw physical therapy)?

Are you adverse to trying everything first?

I'm not adverse to trying anything, it's just that next week I might get all the answers I need before I make the final decision. I will be evaluated by a top Audiologist in my country which has clinical research experience in auditory processing in normal and impaired hearing systems, so I might get some answers as to why I'm so hard of hearing with 'normal' audiogram and ABR (it was sudden, that's why it baffles me the most). The jaw surgery might help but no way of knowing until I'm under the knife.

 

[Zugzug]

Having a really rough time. I'm stable, but I can't help but completely hate being alive. In every way, my years left are going to be filled with non-stop torture and hardship.

 

[ajc]

Having a really rough time. I'm stable, but I can't help but completely hate being alive. In every way, my years left are going to be filled with non-stop torture and hardship.

Same here. I've accepted permanent non-stop torture and hardship. That's why I've been looking at VAD options like Pegasos. It helps me to think there are options to end the hardship if it becomes too much.

 

[FGG]

Having a really rough time. I'm stable, but I can't help but completely hate being alive. In every way, my years left are going to be filled with non-stop torture and hardship.

I feel this. I'm so sorry it's been so rough.

Is any of this feeling today related at all to your biopsy results?

You deserve so much better in life. ((Hug)).