Suicidal

[GoatSheep]

I feel the same - if I am indoors it's literally like torture. Sometimes I see posts written carefully and coherently on here with wit and humor thrown in, and I question how people have the composure. I can only type as I am outside. It makes me feel shitty because I literally am on the edge off functioning - I assume from this mine must be severe.

I would love to "reclaim" some spaces inside my house hence I am trying lots of things most people won't (lasers, peptides etc...). It makes me really angry when I read "success stories" where nothing changed except the person decided they can handle it now - this is not possible for me and while I applaud the good fortune of those posters, at the same time it is almost farcically stupid.

Have you read any of the posts where people actually say they are thankful they got tinnitus yet?

Here's one:

https://www.tinnitustalk.com/threads/tinnitus-my-dear-friend.35964/

 

[dan]

Three different methods are being brought to market soon. You have FX-322 for hair cells, OTO-413 for synapses and you have new Retigabine working the potassium channels in the brain.

Don't forget the Bomb Blast Pill - (aka da bomblasspill)

 

[dan]

I feel the same - if I am indoors it's literally like torture. Sometimes I see posts written carefully and coherently on here with wit and humor thrown in, and I question how people have the composure. I can only type as I am outside. It makes me feel shitty because I literally am on the edge off functioning - I assume from this mine must be severe.

I would love to "reclaim" some spaces inside my house hence I am trying lots of things most people won't (lasers, peptides etc...). It makes me really angry when I read "success stories" where nothing changed except the person decided they can handle it now - this is not possible for me and while I applaud the good fortune of those posters, at the same time it is almost farcically stupid.

You are doing much better than me at 2 months in, I was writhing on the floor crying and begging the noise to stop, my point is in 2 years you will get your life back... obviously not 100% but still a life.

 

[musicblue]

I feel the same - if I am indoors it's literally like torture. Sometimes I see posts written carefully and coherently on here with wit and humor thrown in, and I question how people have the composure. I can only type as I am outside. It makes me feel shitty because I literally am on the edge off functioning - I assume from this mine must be severe.

I would love to "reclaim" some spaces inside my house hence I am trying lots of things most people won't (lasers, peptides etc...). It makes me really angry when I read "success stories" where nothing changed except the person decided they can handle it now - this is not possible for me and while I applaud the good fortune of those posters, at the same time it is almost farcically stupid.

@GBB if its any consolation I was in absolute hell last night. I have developed severe hyperacusis, meaning that sounds I accumulate in the day come back later in the evening in form of searing ear pain. Last night it was raining outside my window which set of my reactive tinnitus - my entire head was like an electricity power station. Then 1 hour later I wake up, having the feeling of acid having being poured in both ears. It was like there were burning coals in there. I grab some painkillers, shut my eyes and hope I can get back to sleep - thinking how the hell am I in this position when 4 months ago I was in love with life. It is just unacceptable for a human being to keep going through this torment night after night, without any real sense of destination, prognosis and being abused from inside the body. Its like being buried alive.

 

[Rafalek73]

If you think your tinnitus is louder than mild/moderate (i.e. several and unbelievably loud), how do you handle it? How do you live day to day? What do you do?

I think it's rare to be that bad and I read a lot of humor on here, people work and they travel. That's impossible for me now.

I have said this before but I wish I lived in a liberal gun state in the USA, maybe Texas. I think it would be easier to get a gun to use on myself than to plan something in Canada.

I hate living like this. I am alone but I don't think I can ever be around someone now. I am resigned to it but it's miserable. I think severe tinnitus is pretty much the worst thing there is. It's not natural for humans to have such loud ringing in their ears or brain.

I know people in real life who have mild tinnitus. There's a volume or severity that is no longer tolerable. That's my belief. From what I see with my own eyes and from what I read.

At a high enough volume, it cripples and tortures people. I don't see how Frequency Therapeutics or the research groups can treat it at that severity. So, it's hopeless, right? I think it is.

Since you have tinnitus, have there been any good moments, days?

 

[Born To Slay]

Don't forget the Bomb Blast Pill - (aka da bomblasspill)

Never heard of it. What's that do?

 

[ajc]

Never heard of it. What's that do?

It's the Hough Ear Institute pill. Read the thread in Research News.

 

[Born To Slay]

It's the Hough Ear Institute pill. Read the thread in Research News.

Ah gotchu, I knew about that. I just didn't know that was its name. I always just called it the Hough pill.

 

[GBB]

Have you read any of the posts where people actually say they are thankful they got tinnitus yet?

Here's one:

https://www.tinnitustalk.com/threads/tinnitus-my-dear-friend.35964/

Stockholm syndrome.

 

[DaveFromChicago]

To GBB:

Very well characterized as the Stockholm Syndrome.

Julian Cowan Hill's book has the title "Tinnitus: From Tyrant to Friend."

Joey Remenyi also recommends this.

In their latest YouTube commentaries, they repeat ad nauseum that not only is this easily achievable, but that you should chastise yourself for either being unwilling or unable to get to this point. Those of us who do not or cannot are "stuck" in a "negative thinking loop."

 

[ShaunR]

@GBB if its any consolation I was in absolute hell last night. I have developed severe hyperacusis, meaning that sounds I accumulate in the day come back later in the evening in form of searing ear pain. Last night it was raining outside my window which set of my reactive tinnitus - my entire head was like an electricity power station. Then 1 hour later I wake up, having the feeling of acid having being poured in both ears. It was like there were burning coals in there. I grab some painkillers, shut my eyes and hope I can get back to sleep - thinking how the hell am I in this position when 4 months ago I was in love with life. It is just unacceptable for a human being to keep going through this torment night after night, without any real sense of destination, prognosis and being abused from inside the body. Its like being buried alive.

I had the cup of acid in ear thing for about a month every single night and eventually it went away thank F*ck. I hope it goes away for you too.

Now I just get constant face and jaw pain with some weird ear fullness.

Hope you get better or improve!

Shaun.

 

[GBB]

@GBB if its any consolation I was in absolute hell last night. I have developed severe hyperacusis, meaning that sounds I accumulate in the day come back later in the evening in form of searing ear pain. Last night it was raining outside my window which set of my reactive tinnitus - my entire head was like an electricity power station. Then 1 hour later I wake up, having the feeling of acid having being poured in both ears. It was like there were burning coals in there. I grab some painkillers, shut my eyes and hope I can get back to sleep - thinking how the hell am I in this position when 4 months ago I was in love with life. It is just unacceptable for a human being to keep going through this torment night after night, without any real sense of destination, prognosis and being abused from inside the body. Its like being buried alive.

Thanks - your suffering does not bring me comfort/consolation. I wish we could all lead our lives without this bullshit as a factor. I hope we all get some relief sooner rather than later.

 

[GBB]

If I could just mask my tinnitus this would be so much easier, but the reactivity/distortion means any white noise ends up having a tinnitus component.

Has anyone had this go completely away over time? I just need some hope.

 

[Emgee]

If I could just mask my tinnitus this would be so much easier, but the reactivity/distortion means any white noise ends up having a tinnitus component.

Has anyone had this go completely away over time? I just need some hope.

I have the same problem. Not able to mask as the reactivity rises above any noise.

My only peace was sitting in quiet rooms with my moderate baseline. However, a hearing test (OAE) spiked my baseline to a severe level a few days ago.

I don't know if I'm going to make it.

 

[GBB]

If I could just mask my tinnitus this would be so much easier, but the reactivity/distortion means any white noise ends up having a tinnitus component.

Has anyone had this go completely away over time? I just need some hope.

I just took a Xanax and the tinnitus went to 1-2/10 from maybe a 6/10. I can only hear it if I plug my ears. I know I can't do this all the time but I'm pretty much temporarily cured. I can barely hear my tinnitus and the distortion, and I'm not hyper sensitive to sound. I believe @flobo had something similar when he tried it. This is pretty damn cool honestly.

I wonder if I just do this 2-3x a week or less if the effect will be reliable. It's a nice tool to have in the toolkit.

Edit: it only lasted 10 minutes or so, but was cool while it lasted.

 

[Kriszti]

If I could just mask my tinnitus this would be so much easier, but the reactivity/distortion means any white noise ends up having a tinnitus component.

Has anyone had this go completely away over time? I just need some hope.

I didn't have distortion as severe as you do, mainly instruments, especially violin, sounded like completely out of tune, and had a metallic whining component to it, but it got so-so much better.

Also, I read that your tinnitus is all over the place. With the high pitch sound, I had this too, it fluctuated all the time, migrated between ears, changed characteristics, frequency, volume, you name it. Around 5 months it settled down and now only changes its volume, because it's kind of reactive. I'm not okay, I'm still here, but it did get better than it was around December/January.

 

[GBB]

I didn't have distortion as severe as you do, mainly instruments, especially violin, sounded like completely out of tune, and had a metallic whining component to it, but it got so-so much better.

Also, I read that your tinnitus is all over the place. With the high pitch sound, I had this too, it fluctuated all the time, migrated between ears, changed characteristics, frequency, volume, you name it. Around 5 months it settled down and now only changes its volume, because it's kind of reactive. I'm not okay, I'm still here, but it did get better than it was around December/January.

Thanks, how long did it take for the distortion to go down, and did your baseline volume reduce?

 

[GBB]

I have the same problem. Not able to mask as the reactivity rises above any noise.

My only peace was sitting in quiet rooms with my moderate baseline. However, a hearing test (OAE) spiked my baseline to a severe level a few days ago.

I don't know if I'm going to make it.

God damn man - I will pray it is a temporary spike. You have been a major contributor on these boards and I hope it gets better for both of us.

 

[Kriszti]

Thanks, how long did it take for the distortion to go down, and did your baseline volume reduce?

Everything calmed down around February. I needed to check back on Tinnitus Talk when I noticed that music sounded way off and that was in the beginning of December. So it took ~3 months.

Yes, my baseline went down as well. Spending lockdown in a relatively quiet environment was beneficial to me. It still is very reactive though.

 

[dan]

Does anybody have a really loud finger on a wine glass rim type tinnitus sound?

 

[Pitseleh]

Does anybody have a really loud finger on a wine glass rim type tinnitus sound?

Yes, among other sounds. The worst being the super loud 250 Hz making me feel like my head is constantly ready to explode.
And then there are those 9000 Hz all over the place.
And this 3000 Hz.

 

[dan]

Yes, among other sounds. The worst being the super loud 250 Hz making me feel like my head is constantly ready to explode.
And then there are those 9000 Hz all over the place.
And this 3000 Hz.

Terrible... is that due to low frequency hearing loss?

 

[Pitseleh]

Terrible... is that due to low frequency hearing loss?

Last time it was checked, my low frequency hearing was strangely OK compared to the rest of the spectrum.

The loudness perceived in this low 250 Hz doesn't match the audiogram, while it does for the other tones.

 

[FGG]

Last time it was checked, my low frequency hearing was strangely OK compared to the rest of the spectrum.

The loudness perceived in this low 250 Hz doesn't match the audiogram, while it does for the other tones.

Your low frequency tinnitus could have an entirely different cause (like ETD or a million other things) than your other tinnitus. It's pretty uncommon to get low frequency tinnitus from things like noise injury from what I have gathered.

 

[PeteJ]

I disagree with you that your severity can't be treated. Three different methods are being brought to market soon. You have FX-322 for hair cells, OTO-413 for synapses and you have new Retigabine working the potassium channels in the brain. These things could all be here as soon as late next year (except OTO-413, I don't see that happening that fast). My point is that regardless of the cause, you are going to be able to be treated and even if it's a mix of causes, you are going to be able to be treated.

I really empathize with your situation. I used to love traveling and listening to music. My life dream is actually take a bus across America and Europe. Hyperacusis has taken that away for now and it's very sad but I just think about how it's not forever and I'm going to live another 80 years of life and it'll only have been a year or two that I had to suffer this of that long time. We're going to get thru this Pete, please don't kill yourself. You are going to have a lot of years to live tinnitus and hyperacusis free. We all will. We're going to be saved buddy.

You make it sound good and optimistic but there's no scientific evidence to support this. Just theories at best.

 

[Born To Slay]

You make it sound good and optimistic but there's no scientific evidence to support this. Just theories at best.

No scientific evidence? Carl LeBel said he heard back from ENTs that patients have said their tinnitus improved after being treated with FX-322. And we know better then anyone that that probably wasn't placebo. So either Carl lies or FX-322 has already improved people's tinnitus.

People on this forum took the old Retigabine and many had great results. Those posts are still here. New Retigabine is going to be even better.

There's definitely good evidence to suggest the end of our suffering is here.

 

[PeteJ]

I have a question or questions, plural.

Where do you perceive your tinnitus? I am mostly asking people who think they have severe tinnitus. So, if you rate it 10/10 severity or feel suicidal often or every day.

Mine: I used to be able to tell but now it's too loud. I *think* it's so loud but I would guess my right ear mostly but there's so many tones. When it's spiking or like a spike, it's as though it's "going through my ears and brain." I guess no one knows what I mean?

But, if I compare ears or try to, the tones seem to be coming more intensely from my right ear.

Although, when I have ear pain, the left is usually worse for hyperacusis or whatever the heck the condition I have is. In more simple terms, I experience more frequent ear pain in my left ear than the right. Noises that hurt my right ear seem to be different than what hurts my left ear. How do you explain that?

A while ago, I was filling air in my car tire. I forgot to wear hearing protection. The loud 'whooosh' (and air pressure pop sound) when I was done really hurt my right ear. My right ear was in pain for two days, IIRC. My left ear wasn't in pain. But, when a noise seems to contribute or cause pain to my left ear, the pain can last 2 days to several days.

Geez, this post is long. Sorry. Anyone else have something like this? Just wondering if anyone else has an idea of what I am talking about. If you experience anything like this? As bad as the ear pain is AND IT'S BAD - if I could choose only one to improve or be 'cured' - I would choose the tinnitus to go.

It's just so loud and doesn't fluctuate much - improvements of '8/10' and back to '10/10' are insignificant. At least, the ear pain subsides and changes. I *need* a major improvement with the tinnitus to feel like it's worth living at all.

 

[Pitseleh]

Your low frequency tinnitus could have an entirely different cause (like ETD or a million other things) than your other tinnitus. It's pretty uncommon to get low frequency tinnitus from things like noise injury from what I have gathered.

I thought that too, yet it started after a head MRI and has been growing louder since then.

I suspect noise trauma.

That 250 Hz is the worst. Even benzos barely allow me to function.

 

[FGG]

I thought that too, yet it started after a head MRI and has been growing louder since then.

I suspect noise trauma.

That 250 Hz is the worst. Even benzos barely allow me to function.

Have they ruled out perilymph fistula? Occasionally that can happen with noise trauma. I feel like people with low frequency tinnitus especially should get a full work up.

 

[Pitseleh]

Have they ruled out perilymph fistula? Occasionally that can happen with noise trauma. I feel like people with low frequency tinnitus especially should get a full work up.

They didn't mention it.
I don't feel nauseous nor have vestibular issue and I think this diagnosis pretty much includes dizziness.

I'm totally lost.