Suicidal

[Chinmoku]

You're still crying after 2 years Daniel. My counselor took 10 years to get to the point where she could handle her tinnitus. I just fear life now.

My counselor said my doctor was to blame for the tinnitus, my brother said the complete opposite. People look at things differently from different perspectives.

10 years is a long time! My goodness... ten years, my kids will finish schools by then, this thing will ruin the most important years I will spend with my children. I really hope we can get help before that.

 

[Mila9828]

There is honestly no hope in finding a cure. I want to kill myself because I can't deal with this anymore.

My tinnitus has been spiked for 10 days now and I feel like I can no longer hear clearly. I'm too scared to check my hearing as I'm pretty sure I developed hyperacusis after my last hearing test. I just don't know what to do anymore.

I'm only 21 and I had to stop attending my dream university because of this. My dad thinks I'm faking it and my mom says I need to keep pushing forward.

How am I supposed to live life like this? I want to die. I've never been so angry at life before. I hate everything.

 

[Chinmoku]

There is honestly no hope in finding a cure [...]

Why? Why are you too so negative? Can the pessimists argue why there is no hope of finding a cure?

We have:
Bimodal neuromodulation
Lenire (already out, jury still out on benefits)
Michigan (1-3y)
Minnesota (2-5y)
Hopefully once a couple of devices are out the field with bloom with many variants and alternatives, and in a few years we will have much more effective and customized treatment

Medication
Nerve damage: OTO-413 (5-10y)
Ear Cells: FX-322/Regain (2-5y)
Neuropathy: New Retigabine (Tzounopoulos, 10-20y)
Hough Ear Institute pill (?)

@Mila9828, @all to gain, do you think all these approaches will end up with nothing?

 

[Allan1967]

There is honestly no hope in finding a cure. I want to kill myself because I can't deal with this anymore.

My tinnitus has been spiked for 10 days now and I feel like I can no longer hear clearly. I'm too scared to check my hearing as I'm pretty sure I developed hyperacusis after my last hearing test. I just don't know what to do anymore.

I'm only 21 and I had to stop attending my dream university because of this. My dad thinks I'm faking it and my mom says I need to keep pushing forward.

How am I supposed to live life like this? I want to die. I've never been so angry at life before. I hate everything.

At 21 you have an immensely good chance of see a cure in your lifetime. Much much better than I did when I got it in my mid 20s in the 90's.

 

[all to gain]

Why? Why are you too so negative? Can the pessimists argue why there is no hope of finding a cure?

We have:
Bimodal neuromodulation
Lenire (already out, jury still out on benefits)
Michigan (1-3y)
Minnesota (2-5y)
Hopefully once a couple of devices are out the field with bloom with many variants and alternatives, and in a few years we will have much more effective and customized treatment

Medication
Nerve damage: OTO-413 (5-10y)
Ear Cells: FX-322/Regain (2-5y)
Neuropathy: New Retigabine (Tzounopoulos, 10-20y)
Hough Ear Institute pill (?)

@Mila9828, @all to gain, do you think all these approaches will end up with nothing?

If I'm honest, I think we will get little from them. But, of course, I hope I am wrong. I am very pessimistic. Why wouldn't I be? We put a man on the moon 50 years ago, but here we all are sitting on a forum talking about when a cure will come for a phantom sound. A cure WILL come, but maybe not in my lifetime.

Not enough people care enough to make major inroads into a cure for this. Damn, if the Queen of England had tinnitus I reckon funding would shoot up. Or maybe they would cover it up under the rug.

 

[Guest444]

There is honestly no hope in finding a cure. I want to kill myself because I can't deal with this anymore.

My tinnitus has been spiked for 10 days now and I feel like I can no longer hear clearly. I'm too scared to check my hearing as I'm pretty sure I developed hyperacusis after my last hearing test. I just don't know what to do anymore.

I'm only 21 and I had to stop attending my dream university because of this. My dad thinks I'm faking it and my mom says I need to keep pushing forward.

How am I supposed to live life like this? I want to die. I've never been so angry at life before. I hate everything.

Hey girl, I'm in the same boat as you. Same age, same rage, and I also had to stop with college. All dreams = crushed. Please feel free to message me if you want and vent for as long as you like! xx

 

[arctic loon]

I made many many mistakes this year. As a result I have severe hyperacusis, pulsatile tinnitus and tinnitus. I used to have mild hyperacusis & tinnitus only. Life's very hard with severe hyperacusis. I wish you all only good things, keep fighting people. This life is all we have.

 

[MargMan]

I was suicidal while dealing with extremely painful tinnitus (lost 24lbs in 3 months, felt like I had dementia & the ringing was deafening). Eventually I found some great doctors at Weill Cornell Med Ctr. Started TRT therapy, counseling and had two cortisone injections for pain in the mastoid process. I went for acupuncture with electrical stimulation weekly and prayed, a lot! Today my tinnitus level is a 3, as of last week and I'm pain-free. Please talk to someone. My husband was my lifeline! He encouraged me daily. He helped me with my diet, guilted me to get on the treadmill or to go outside every day. We need interaction with people, even if it's the cashier at the grocery store. I'm so happy I didn't jump. Your family want you in their lives. Stay strong!

 

[MRItechssuck]

Did you have good success with TRT? How did you find a reputable clinic?

Thanks.

 

[Daniel Lion]

10 years is a long time! My goodness... ten years, my kids will finish schools by then, this thing will ruin the most important years I will spend with my children. I really hope we can get help before that.

Yup... 10 years is a chunk of time.
It may never come for me... "the miracle, the medical treatment"
I try my best every a day.
It has changed my time with my kids but I won't let it "ruin" it...
It is what it is...
I am here for you guys.... and for me...
I am gonna keep doing my best... and keep trying...
And when I need to cry... I'll cry....
Just try your best...

Gaby Olthuis, the Dutch woman who had an assisted suicide.... well, her hyperacusis and tinnitus was insane, she was tortured beyond belief.
It's a shame she couldn't have taken part in the deep brain stimulation operations at UCLA, or had round window reinforcement surgery.

She made her choice and I respect that, and now she's gone. Her suffering was unbelievable, beyond the threshold of any mortal, the pain was too much... RIP Gaby. You are not forgotten. That's what this disease can do... we know that.

I am not ready for that, I don't want to die now.
I accept the pain, it sucks, and I push on as best as I can.

We are all in this together. My kids are sleeping now, my wife is sleeping. It's 5 a.m and there are 5 of us in one room. That's how we roll. I consider myself lucky.

I love all of you, I don't know you, but I am sending hugs into the World Wide Web, to you. Pre-tinnitus, I stayed clear of computers, I was old school... now I am sending hugs and kisses to people I've never met, weird.

Our souls are bonded through this shared experience. I believe that.

Take care, be strong, try your best. And share good news when you have it...

Love,
Daniel...

Now you got me crying again, or tearing up, talk later.

 

[PeteJ]

@Mila9828, @all to gain, do you think all these approaches will end up with nothing?

I do.

 

[PeteJ]

I was suicidal while dealing with extremely painful tinnitus (lost 24lbs in 3 months, felt like I had dementia & the ringing was deafening). Eventually I found some great doctors at Weill Cornell Med Ctr. Started TRT therapy, counseling and had two cortisone injections for pain in the mastoid process. I went for acupuncture with electrical stimulation weekly and prayed, a lot! Today my T level is a 3, as of last week and I'm pain-free. Please talk to someone. My husband was my lifeline! He encouraged me daily. He helped me with my diet, guilted me to get on the treadmill or to go outside every day. We need interaction with people, even if it's the cashier at the grocery store. I'm so happy I didn't jump. Your family want you in their lives. Stay strong!

Your tinnitus went from a 4 to a 3 or?

TRT doesn't reduce tinnitus.

Is there anyone who had 10/10 or had 9/10 tinnitus and had it reduced from a treatment or even just random? I asked in a separate thread and no one replied. Well, maybe one or two replies but no one posted that theirs did.

 

[PeteJ]

You can habituate to this sound unless it's like really loud as fcuk...

What if it's loud as fuck?

Mine got worse tonight. It seems to get worse in the late evening. It was 8/10 all day and now is 9/10 or 10/10.

Why?!? Too many tones. I also have ear pain - the left ear again. That's why I am suicidal every day. If there was easy euthanasia, I would do it.

Since no one knows what's happening, including doctors, I am guessing that auditory damage and hearing loss is "reported" to the brain and the human brain is so fucked up when dealing with that so neurons fire and this overactivity is done for some mysterious reason no one understands.

These "cures" you people think are good?: they can't even explain why our brains have phantom sounds and why we can't stop it or cure it!

Instead, there are currently Guinea pigs who are testing theories. I wish science was advanced enough to solve this. The ear pain and severe tinnitus (i.e. loud, high pitched multiple tones) makes so I don't want to live.

Lots of people don't have perfect hearing but don't have severe tinnitus, right?!? Why do various people get horrible loud tinnitus'?!? I think mild tinnitus is common. I know some people in real life who have it like that but I don't know anyone with severe tinnitus. I can't get automatic disability from this so how can I live in a situation tormented by ear pain and severe tinnitus? People send "online" hugs but nothing helps me.

 

[Star64]

Yup... 10 years is a chunk of time.
It may never come for me... "the miracle, the medical treatment"
I try my best every a day.
It has changed my time with my kids but I won't let it "ruin" it...
It is what it is...
I am here for you guys.... and for me...
I am gonna keep doing my best... and keep trying...
And when I need to cry... I'll cry....
Just try your best...

Gaby Olthuis, the Dutch woman who had an assisted suicide.... well, her hyperacusis and tinnitus was insane, she was tortured beyond belief.
It's a shame she couldn't have taken part in the deep brain stimulation operations at UCLA, or had round window reinforcement surgery.

She made her choice and I respect that, and now she's gone. Her suffering was unbelievable, beyond the threshold of any mortal, the pain was too much... RIP Gaby. You are not forgotten. That's what this disease can do... we know that.

I am not ready for that, I don't want to die now.
I accept the pain, it sucks, and I push on as best as I can.

We are all in this together. My kids are sleeping now, my wife is sleeping. It's 5 a.m and there are 5 of us in one room. That's how we roll. I consider myself lucky.

I love all of you, I don't know you, but I am sending hugs into the World Wide Web, to you. Pre-tinnitus, I stayed clear of computers, I was old school... now I am sending hugs and kisses to people I've never met, weird.

Our souls are bonded through this shared experience. I believe that.

Take care, be strong, try your best. And share good news when you have it...

Love,
Daniel...

Now you got me crying again, or tearing up, talk later.

Daniel you are another kind, compassionate, gentle soul on this forum, and I am so sorry you are suffering, you really are a super dad.

I hate seeing people crying due to sorrow and frustration and as we know tinnitus gives us both.
We grieve for what we used to have, silence, no pain etc, and we are frustrated because it is a hit and miss with what will help us.

Crying does release oxytocin and endorphins though which are meant to help us feel better. This morning @emmalee posted this quote on another thread as she is struggling with a bad spike at the moment and was looking at quotes to get her through, I think this is a good one,

Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it.
- Michael J. Fox
Lets hope we all find a way through it, sending big hugs to you Daniel xxx​

 

[MRItechssuck]

Here I am again day 7, I woke up and there is no going back to sleep. So loud after sleeping, and very disappointed and angry that I didn't know about MRIs and the tech didn't give a sh!t.

If I didn't have people relying on me, I would search and destroy that middle-aged useless bag technician, and then either be in jail or worse.

Reading these threads... some 60 pages long... 55 pages of "seems better," or "can't tell, but hopeful" and then the twist at the end is really nothing... "Personally, I've seen no changes in my tinnitus."

When I got this back in 2002 or so, Dr. Nagler had his forum and talked up TRT, and some had positive views and some thought it was BS snake oil, so much that the doc left the forums due to the criticism.

These forums are the same as years ago too, some nice positive people and some d-bags.

I am so unhappy to see the same people and the same empty promises from 15-17 years ago... NOTHING has changed. I'm screwed, but I hope some habituate...

Secret studies and trials, PRP shots, HBOT... I'm sorry I'm Debbie downer this morning... but people have spent $4k on hyperbaric chambers, others $9k in Asia... and in the end it's the same....really zero results. Habituate or nothing... or as it has always been said, get used to it.

 

[Chinmoku]

Yup... 10 years is a chunk of time.
It may never come for me... "the miracle, the medical treatment"
I try my best every a day.
It has changed my time with my kids but I won't let it "ruin" it...
It is what it is...
I am here for you guys.... and for me...
I am gonna keep doing my best... and keep trying...
And when I need to cry... I'll cry....
Just try your best...

Gaby Olthuis, the Dutch woman who had an assisted suicide.... well, her hyperacusis and tinnitus was insane, she was tortured beyond belief.
It's a shame she couldn't have taken part in the deep brain stimulation operations at UCLA, or had round window reinforcement surgery.

She made her choice and I respect that, and now she's gone. Her suffering was unbelievable, beyond the threshold of any mortal, the pain was too much... RIP Gaby. You are not forgotten. That's what this disease can do... we know that.

I am not ready for that, I don't want to die now.
I accept the pain, it sucks, and I push on as best as I can.

We are all in this together. My kids are sleeping now, my wife is sleeping. It's 5 a.m and there are 5 of us in one room. That's how we roll. I consider myself lucky.

I love all of you, I don't know you, but I am sending hugs into the World Wide Web, to you. Pre-tinnitus, I stayed clear of computers, I was old school... now I am sending hugs and kisses to people I've never met, weird.

Our souls are bonded through this shared experience. I believe that.

Take care, be strong, try your best. And share good news when you have it...

Love,
Daniel...

Now you got me crying again, or tearing up, talk later.

I will cry with you, brother. Today is very hard. Woke up at 3am and could not bear the sound but there's nowhere to escape. Trapped, acid reflux due to anxiety, depressed, feeling very weak. I managed to kiss my children and wake them up but I am scared. There is no way I can last ten years like this. I am not a good father like this. But I need to find a way through this for my kids. I don't know how.
I admire your kindness

 

[MRItechssuck]

Chinmoku, have you tried TRT... at least it is something. Back in the day there was only Dr. Nagler down in Georgia.

All these supplements people take seem like BS too... I probably got used to the tinnitus back then in 2-3 years and Ginkgo Biloba was the only "thing." That's been pretty much debunked now....

But nothing has changed in almost two decades, sadly. Keep hanging in there and you will get used to it... but the miracle cures are just a way for some people to get rich off of the less fortunate.

Look to your kids, they will not have any idea what's going on... but do your best to put up a good front for them... plus kids are great distractions from tinnitus.

 

[dan]

If I didn't have people relying on me, I would search and destroy that middle-aged useless bag technician, and then either be in jail or worse.

That would serve no purpose. It's our fault in the end.
We must say NO to all loud noise.

May ask what your tinnitus sounds like? And did you get new sound(s) after MRI?

 

[Jcb]

Yup... 10 years is a chunk of time.
It may never come for me... "the miracle, the medical treatment"
I try my best every a day.
It has changed my time with my kids but I won't let it "ruin" it...
It is what it is...
I am here for you guys.... and for me...
I am gonna keep doing my best... and keep trying...
And when I need to cry... I'll cry....
Just try your best...

Gaby Olthuis, the Dutch woman who had an assisted suicide.... well, her hyperacusis and tinnitus was insane, she was tortured beyond belief.
It's a shame she couldn't have taken part in the deep brain stimulation operations at UCLA, or had round window reinforcement surgery.

She made her choice and I respect that, and now she's gone. Her suffering was unbelievable, beyond the threshold of any mortal, the pain was too much... RIP Gaby. You are not forgotten. That's what this disease can do... we know that.

I am not ready for that, I don't want to die now.
I accept the pain, it sucks, and I push on as best as I can.

We are all in this together. My kids are sleeping now, my wife is sleeping. It's 5 a.m and there are 5 of us in one room. That's how we roll. I consider myself lucky.

I love all of you, I don't know you, but I am sending hugs into the World Wide Web, to you. Pre-tinnitus, I stayed clear of computers, I was old school... now I am sending hugs and kisses to people I've never met, weird.

Our souls are bonded through this shared experience. I believe that.

Take care, be strong, try your best. And share good news when you have it...

Love,
Daniel...

Now you got me crying again, or tearing up, talk later.

You are a good man Daniel, I appreciate all your words of wisdom, humour and you just have an aura about you that's magnetic.

So sorry you are going through this, you sound like an amazing father even with this hell in our heads, you keep powering through and show people compassion when I'm sure you really haven't got the energy at times.

Thanks mate.

 

[DaveFromChicago]

To MRLTechssuck and Chinmoku:
I have spent about $12,500.00 within the last 6 years on utterly useless treatments, supplements, etc.
And it is the way it is with no change.
My wife is retiring next year, and this condition continues to erode my capacity to live fully.
I find myself in an increasingly invalidized state, and I dread how this will affect my marriage.

 

[Harley]

To MRLTechssuck and Chinmoku:
I have spent about $12,500.00 within the last 6 years on utterly useless treatments, supplements, etc.
And it is the way it is with no change.
My wife is retiring next year, and this condition continues to erode my capacity to live fully.
I find myself in an increasingly invalidized state, and I dread how this will affect my marriage.

Being near retirement age and getting hit with this piece of shit condition must be a complete nightmare.

After you worked hard your whole life and look forward to some well deserved rest, you are getting the exact opposite and everything gets taken away from you.

Morbid, evil and twisted torture such as this, should not even be allowed to exist in the 21 century.
Yet here we are.

 

[Bobby Sinatra]

I have had "T" since age 50, but severely for 5 1/2 years.
Very loud and constant.
It devastates me.

Please don't think that I have not thought about what the impact would have been at a much younger age.
Just so complexly hateful.
I know - I understand.

All I can say is that meditation has helped me to acclimatise to it, and given me some measure of relief.
When somebody is in such obvious distress I have a dilemma.
Should I try to offer them something that has helped me - or just stay out of it ?

Telling you that I so sincerely feel for you does not help you much, does it.
Trying to encourage you to meditate may give you a degree of relief in the future, I don't know?

To simplify the breathing bit
- just lay still for a few minutes,
then ask your tummy to take over the breathing for you.
I so wish I could offer you something more.

Dave x
Jazzer

What medication did you go for Dave?

 

[Bobby Sinatra]

@PeteJ where in Canada are you?

 

[Daniel Lion]

Here I am again day 7, I woke up and there is no going back to sleep. So loud after sleeping, and very disappointed and angry that I didn't know about MRIs and the tech didn't give a sh!t.

If I didn't have people relying on me, I would search and destroy that middle-aged useless bag technician, and then either be in jail or worse.

Reading these threads... some 60 pages long... 55 pages of "seems better," or "can't tell, but hopeful" and then the twist at the end is really nothing... "Personally, I've seen no changes in my tinnitus."

When I got this back in 2002 or so, Dr. Nagler had his forum and talked up TRT, and some had positive views and some thought it was BS snake oil, so much that the doc left the forums due to the criticism.

These forums are the same as years ago too, some nice positive people and some d-bags.

I am so unhappy to see the same people and the same empty promises from 15-17 years ago... NOTHING has changed. I'm screwed, but I hope some habituate...

Secret studies and trials, PRP shots, HBOT... I'm sorry I'm Debbie downer this morning... but people have spent $4k on hyperbaric chambers, others $9k in Asia... and in the end it's the same....really zero results. Habituate or nothing... or as it has always been said, get used to it.

I hear you... buttttttttttttttttt.

We are actually on the cusp of medical advancements.

I may not benefit from them, but I believe many people on this forum will receive genuine medical help over the course of the next five years. First with neuromodulation, hearing regeneration, small molecule drugs, better hearing aids, and even invasive surgeries for extreme cases and of course drugs.

But I hear you... suck it up... embrace the pain... oooouuuucchhh that hurts.

You are not a downer...

 

[Daniel Lion]

Being near retirement age and getting hit with this piece of shit condition must be a complete nightmare.

After you worked hard your whole life and look forward to some well deserved rest, you are getting the exact opposite and everything gets taken away from you.

Morbid, evil and twisted torture such as this, should not even be allowed to exist in the 21 century.
Yet here we are.

There are kids on this forum as young as 14 that I correspond with.

 

[Daniel Lion]

To MRLTechssuck and Chinmoku:
I have spent about $12,500.00 within the last 6 years on utterly useless treatments, supplements, etc.
And it is the way it is with no change.
My wife is retiring next year, and this condition continues to erode my capacity to live fully.
I find myself in an increasingly invalidized state, and I dread how this will affect my marriage.

Shitttttttttt, sorry... if you haven't done so... read anything by Jazzer, he is 76 years old now... lost everything and has managed to salvage his life... he really helped me, his story and wisdom may resonate with you.

I am sorry you are suffering... can you talk yo your wife about your feelings? Or a friend? Can you get some support?

 

[Daniel Lion]

You are a good man Daniel, I appreciate all your words of wisdom, humour and you just have an aura about you that's magnetic.

So sorry you are going through this, you sound like an amazing father even with this hell in our heads, you keep powering through and show people compassion when I'm sure you really haven't got the energy at times.

Thanks mate.

Right back at you, Jcb... now put some clothes on and stop running around naked (joking).
I am trying to nurture love... it's helping me.
I wish we could Harry Potter everybody here, I know you are struggling too.
What to do?
Glad you are here... hope you have a few good days... come on universe, give us a break please.

 

[Daniel Lion]

I will cry with you, brother. Today is very hard. Woke up at 3am and could not bear the sound but there's nowhere to escape. Trapped, acid reflux due to anxiety, depressed, feeling very weak. I managed to kiss my children and wake them up but I am scared. There is no way I can last ten years like this. I am not a good father like this. But I need to find a way through this for my kids. I don't know how.
I admire your kindness

You can do it... you will do it.

You are going to rise from the ashes of despair and be reborn... mamed, cut, bruised, but functioning and ok and a great dad.

It's gonna take time... I believe you will get better... or manage better. Just by virtue of statistical analysis, the odds are you will improve or learn to cope better. Reach out for help, and you are a good father. Just keep trying everyday, you are going to be ok...

 

[Daniel Lion]

I am clocking off now... you guys are my family. I belong here with you.
It's late now, I am going to eat some fruit.
I don't know what to say... I just hope everybody can feel a little better, receive some love and maybe even crack a smile and experience some joy.

I am not really religious, but I will pray for everybody in my own way.

Goodnight from little old Laos in South East Asia,
We can do this.

 

[Harley]

There are kids on this forum as young as 14 that I correspond with.

I don't even know what to say to that Daniel.
There are no words powerfull enough to convey the amount of pure hate and anger, that I feel towards Tinnitus.