Suicidal

[Michael Leigh]

I've got an Audiologist, but the treatment for hyperacusis (white noise maskers in ear)

Thanks for this information. White noise generators are the best to treat hyperacusis. I appreciate that they can cause some irritation to the auditory system and may even spike tinnitus. However, there is a work-around if you want to try it and it often works.

HI @Violetdusk

Some people try wearing white noise generators continuously for 4, 6 or 8hrs and find they cause irritation. I suggest wearing them for just 1 or 2hrs and then take them off for the same duration. Keep the volume low, preferably below the level of the tinnitus. Continue with this for 1 week or more then slowly increase the wearing time using the above method.

I have used WNG for years and never had a problem. I would be interested to know the way your Audiologist advised you to use them?

Thanks
Michael

 

[Mymlan]

I cried today, and I haven't in a long time. I cried simply because this is so unfair. None of us deserve this torment, but yet we have to suffer. Nobody in my life really understand. I try to stay strong but it's hard.

I haven't really left last year behind me and that day in April when a huge part of me died. Why this? Why?

 

[Michael Leigh]

I haven't really left last year behind me and that day in April when a huge part of me died. Why this? Why?

Have you started any treatment for the tinnitus @Mymlan at ENT or been seen by an Audiologist?

Michael

 

[Mymlan]

@Michael Leigh Already been there. No they can't remove my tinnitus so until then I'll wait for a cure.

 

[Violetdusk]

Hi @Michael Leigh

Re: White noise maskers, they told me to wear them low level for short periods. I tried for 30 minutes on low volume but even that spiked my Tinnitus so I stopped wearing them. I might give them another go....but as my condition has worsened since before, I don't want to get my hopes up too much.

@Mymlan Sorry to hear, is your T loud too? I thought mine couldn't get worse and then it's nasty sister came, Hyperacusis....try and avoid all loud sounds in the meantime as you don't want H too. I coughed today for the first time in months and got ear pain from that...my own coughing is too loud for me, so I needed earplugs for it for the first time ever. It isn't fair, that is very true.

 

[Michael Leigh]

Re: White noise maskers, they told me to wear them low level for short periods. I tried for 30 minutes on low volume but even that spiked my Tinnitus so I stopped wearing them. I might give them another go....but as my condition has worsened since before, I don't want to get my hopes up too much.

@Violetdusk

Your auditory system is very sensitive Violetdusk so if you decide on using the white noise generators again, be careful.
Best of luck
Michael

 

[Kriszti]

@Violetdusk Doesn't the occlusion effect make coughing with earplugs in even worse?

 

[Violetdusk]

@Kriszti I don't know...mine is worse all the time so it's difficult to say, don't think so. I am really worried about Dental work I have coming up, a crown. They'll be grinding my tooth etc. I am terrified that this will leave me with even louder tinnitus. Going to make a post now about it.

 

[Mymlan]

@Violetdusk My tinnitus varies between a 3-8. It fluctuates a lot. It's reactive so it will ramp up on all external sounds, even the lowest one. This makes me hear my tinnitus all the time, even in the shower. I have hyperacusis too.

 

[LukeYoung]

Maybe in another lifetime we will be happy.

I was pretty miserable before tinnitus with moments of happiness. The fact that I got something that isn't curable and is only going to get worse from here on out still doesn't feel real to me. But I'm sure this is how all depressed people/those with chronic illnesses feel, that this can't be real.

Very true, we are in a similar boat.. Cancer patients know its gonna get worse yet some of them are the most optimistic people you'll ever meet. I guess we just gotta hold on and keep strong

 

[Yuuls]

Very true, we are in a similar boat.. Cancer patients know its gonna get worse yet some of them are the most optimistic people you'll ever meet. I guess we just gotta hold on and keep strong

At least cancer patients know if it gets worse there's a treatment option. If treatment doesn't work, they will die. They also get the sympathy of society because their pain and suffering is recognized.

If the treatment is successful, they live in fear of it coming back, yes. But their cancer isn't dependent on visiting a coffee shop, or a restaurant, or a wedding or birthday party.

We get to live out the rest of our lives in fear of it getting worse. If it gets worse, there is no treatment. We just get to suffer with no end in sight unless we kill our selves. At that point we are cowards and weak people (as seen by others).

There is no peace with this.

 

[Yuuls]

One thing that bothers me even more that my tinnitus and noise distortion is the fact that my life has been robbed of peace for at least the next 50-60 years, if I make it that far.

Never again will I be able to feel comfortable in ANY sort of environment. I have day dreams of the days I could enjoy a dinner with friends, go to a bar to get a beer after work or walk around my city and sight see without fear. Even if my tinnitus does go down to mild, I've been robbed of my peace.

My friends get to see lineups for festivals come out and get excited about it. For me it's like a knife digging in further and further. Friends get excited for birthday dinners, happy hour evens and just your average Friday night out. I would always get anxiety about who I would have to select as my maid of honor at my wedding. Now I can't even bring myself to go on a date or leave the house for anything besides work.

I will forever be scarred by this experience. I have become afraid of the world I did not ask to be part of. This is mental torture. This is prison.

By this point I have read so many scary stories, they are engrained in my mind. There is no undoing this

 

[Harley]

One thing that bothers me even more that my tinnitus and noise distortion is the fact that my life has been robbed of peace for at least the next 50-60 years, if I make it that far.

Never again will I be able to feel comfortable in ANY sort of environment. I have day dreams of the days I could enjoy a dinner with friends, go to a bar to get a beer after work or walk around my city and sight see without fear. Even if my tinnitus does go down to mild, I've been robbed of my peace.

My friends get to see lineups for festivals come out and get excited about it. For me it's like a knife digging in further and further. Friends get excited for birthday dinners, happy hour evens and just your average Friday night out. I would always get anxiety about who I would have to select as my maid of honor at my wedding. Now I can't even bring myself to go on a date or leave the house for anything besides work.

I will forever be scarred by this experience. I have become afraid of the world I did not ask to be part of. This is mental torture. This is prison.

By this point I have read so many scary stories, they are engrained in my mind. There is no undoing this

Your comparison of tinnitus to prison is very accurate indeed, but I would like to add, that even inside the roughest prisons in the world, inmates are not actively tortured 24/7, such as inside the prison of tinnitus.

This makes the tinnitus prison worse than any other prison on earth.
It is full of innocent people, yet nobody seems to care.
As it stands right now, the only way out is inside a body bag.

 

[brokensoul]

 

[LukeYoung]

At least cancer patients know if it gets worse there's a treatment option. If treatment doesn't work, they will die. They also get the sympathy of society because their pain and suffering is recognized.

If the treatment is successful, they live in fear of it coming back, yes. But their cancer isn't dependent on visiting a coffee shop, or a restaurant, or a wedding or birthday party.

We get to live out the rest of our lives in fear of it getting worse. If it gets worse, there is no treatment. We just get to suffer with no end in sight unless we kill our selves. At that point we are cowards and weak people (as seen by others).

There is no peace with this.

That's true.
I don't know man. People live with all sorts of problems. Ours is equally as hard I guess, every illness has their battlers.

 

[Yuuls]

I don't want to die.

It keeps getting worse.
Why do I have to suffer with this. I'm literally stuck in hell.

I can't mask my tinnitus because I hear this metallic whine over absolutely everything. Fan doesn't help, TV doesn't help, I'm miserable in the showers.
If I plug my ears I hear the sounds.
If I lay in the quiet I hear the sounds.
There is no escape.

I can't go to the ER.
If I check into a mental facility they will just pump me full of medication that will probably make this worse.

Literally had a mental breakdown on the freeway and had to pull over in a parking lot because I was so scared.
I'm beyond calling my mom for help with my breakdowns. It just makes her feel worse and have sleepless nights.

I am so miserable and there is nothing in this world that can help me.
I'm scared of going home and hurting myself.
I want to live. . But not like this. I don't know what to do.

Someone help me please.

 

[Yuuls]

I cried today, and I haven't in a long time. I cried simply because this is so unfair. None of us deserve this torment, but yet we have to suffer. Nobody in my life really understand. I try to stay strong but it's hard.

I haven't really left last year behind me and that day in April when a huge part of me died. Why this? Why?

Hoping I get spared and killed at some point before I do it myself. With my luck, I'll live to be 105.

 

[PeteJ]

@Kriszti I don't know...mine is worse all the time so it's difficult to say, don't think so. I am really worried about Dental work I have coming up, a crown. They'll be grinding my tooth etc. I am terrified that this will leave me with even louder tinnitus. Going to make a post now about it.

I had a dentist appointment today. Two fillings. It was hell but the drill might have been not as loud as my last visit. This was a different dentist and she claimed the drill was newer. I am worried about tonight and especially tomorrow. My last appointment resulted in a noticeable spike the following day. The tinnitus is pretty bad currently but it's usually really bad at night.

I don't know if your area in Wales has laser dentistry but some more modern offices have laser tools that can work on hard tissue. If you are only going for a cleaning, make sure to request and only accept a MANUAL cleaning. The manual cleaning is probably the least invasive type of dental treatment and the noise created isn't bad.

 

[PeteJ]

I don't want to die.

It keeps getting worse.
Why do I have to suffer with this. I'm literally stuck in hell.

I can't mask my tinnitus because I hear this metallic whine over absolutely everything. Fan doesn't help, TV doesn't help, I'm miserable in the showers.
If I plug my ears I hear the sounds.
If I lay in the quiet I hear the sounds.
There is no escape.

I can't go to the ER.
If I check into a mental facility they will just pump me full of medication that will probably make this worse.

Literally had a mental breakdown on the freeway and had to pull over in a parking lot because I was so scared.
I'm beyond calling my mom for help with my breakdowns. It just makes her feel worse and have sleepless nights.

I am so miserable and there is nothing in this world that can help me.
I'm scared of going home and hurting myself.
I want to live. . But not like this. I don't know what to do.

Someone help me please.

I know how you feel. I am trying to watch tv and I think my tinnitus started spiking. I am afraid it's from my dentist appointment. I had two fillings. I hate this and it always seems worse at night.

At least, you have family who care and want to help. I really don't have anyone. I'm older and although I am scared of dying, I want that over living like this. My tinnitus is so loud with multiple tones and it's so high pitched, I wish I had a gun because I could stop the tinnitus and end the torture. I don't know how I am going to plan a suicide. The intrusiveness of the tinnitus makes it difficult for me to concentrate even for routine tasks like using this forum. How the **** am I gonna plan my suicide? :-(

 

[Rogi Cetpla]

I don't want to die.

It keeps getting worse.
Why do I have to suffer with this. I'm literally stuck in hell.

I can't mask my tinnitus because I hear this metallic whine over absolutely everything. Fan doesn't help, TV doesn't help, I'm miserable in the showers.
If I plug my ears I hear the sounds.
If I lay in the quiet I hear the sounds.
There is no escape.

I can't go to the ER.
If I check into a mental facility they will just pump me full of medication that will probably make this worse.

Literally had a mental breakdown on the freeway and had to pull over in a parking lot because I was so scared.
I'm beyond calling my mom for help with my breakdowns. It just makes her feel worse and have sleepless nights.

I am so miserable and there is nothing in this world that can help me.
I'm scared of going home and hurting myself.
I want to live. . But not like this. I don't know what to do.

Someone help me please.

Hi Yuuls,

You are now at a stage where you need medical help.

I was exactly where you are a couple of month ago. I tried to fight this on my own but ultimately caved in and consulted various specialists. I have, since then, been on various meds which have greatly helped and without I would possibly not be here today.

Sleeping is the key to this battle... without it you don't stand a chance. I am now able to sleep thus function during the day... having even resumed working. The noise intensity has not reduced and I still suffer but am aware, as should you, that this is going to be a long road to recovery.

I have made it out before and intend to do son again. You can also do so...stay strong and remember that you are not alone.

Take good care,
Rogi

 

[PeteJ]

People here who say your tinnitus is severe meaning loud - at least, to me, it means screaming multiple tones and it is louder than anything - fan, tv, everything. It's the insane multiple tones deeddddeeedeeedeeee....that makes it so difficult to function, as it seems to worsen the later at night it gets.

Do you have anything like this? What do you do if you can't sleep? How can one have a normal life like this?!? I CAN'T WORK. I wish I studied IT because I could at least try to at home.

Instead, I want a suicidal method. A gun would be easiest but other methods require more planning. I want to stop this tinnitus even if it means suicide. I find it difficult to plan my day nevermind an end of life plan.

 

[FGG]

Hi everyone,

I thought of a hypothetical situation to consider. Imagine cochlear regenerative medicine works (or Susan Shore's device or University of Minnesota's) and it becomes as routine as LASIK eye surgery. Now imagine, like the LASIK you are recommended to get one side done at a time (just pretend this is always recommended). Imagine getting the first ear done and your hearing distortions, tinnitus etc start to disappear never to return. Even if that second appointment for the other side was 6 months away, imagine how much easier that 6 months would be than the months to years before. Just knowing for sure.

Cures and treatments are coming. I know Lenire was not a magic bullet as hoped but new treatments are coming soon. I also know it is hard to endure and hold out and people don't get it and many people in fact just suck but it will get better soon. The science is there and i am obsessed with it and I really see it is so close.

Feel free to tell me not to peddle my "false hope" or to fuck off (believe me I would understand) but I very strongly believe real, actual treatments are coming.

 

[LukeYoung]

Hi everyone,

I thought of a hypothetical situation to consider. Imagine cochlear regenerative medicine works (or Susan Shore's device or University of Minnesota's) and it becomes as routine as LASIK eye surgery. Now imagine, like the LASIK you are recommended to get one side done at a time (just pretend this is always recommended). Imagine getting the first ear done and your hearing distortions, tinnitus etc start to disappear never to return. Even if that second appointment for the other side was 6 months away, imagine how much easier that 6 months would be than the months to years before. Just knowing for sure.

Cures and treatments are coming. I know Lenire was not a magic bullet as hoped but new treatments are coming soon. I also know it is hard to endure and hold out and people don't get it and many people in fact just suck but it will get better soon. The science is there and i am obsessed with it and I really see it is so close.

Feel free to tell me not to peddle my "false hope" or to fuck off (believe me I would understand) but I very strongly believe real, actual treatments are coming.

And look, we have found cures for things we never thought possible in the past, technology and research changes.

Modern medicine e.g antibiotics and vaccines have extended human life by 30-40 years... people weren't living to 80's before 1900's.

We just gotta hope a breakthrough comes. But it does require more people working on it.

 

[Daniel Lion]

Hi everyone,

I thought of a hypothetical situation to consider. Imagine cochlear regenerative medicine works (or Susan Shore's device or University of Minnesota's) and it becomes as routine as LASIK eye surgery. Now imagine, like the LASIK you are recommended to get one side done at a time (just pretend this is always recommended). Imagine getting the first ear done and your hearing distortions, tinnitus etc start to disappear never to return. Even if that second appointment for the other side was 6 months away, imagine how much easier that 6 months would be than the months to years before. Just knowing for sure.

Cures and treatments are coming. I know Lenire was not a magic bullet as hoped but new treatments are coming soon. I also know it is hard to endure and hold out and people don't get it and many people in fact just suck but it will get better soon. The science is there and i am obsessed with it and I really see it is so close.

Feel free to tell me not to peddle my "false hope" or to fuck off (believe me I would understand) but I very strongly believe real, actual treatments are coming.

Peddle away...
In need of hope.

 

[dan]

I know how you feel. I am trying to watch tv and I think my tinnitus started spiking. I am afraid it's from my dentist appointment. I had two fillings. I hate this and it always seems worse at night.

At least, you have family who care and want to help. I really don't have anyone. I'm older and although I am scared of dying, I want that over living like this. My tinnitus is so loud with multiple tones and it's so high pitched, I wish I had a gun because I could stop the tinnitus and end the torture. I don't know how I am going to plan a suicide. The intrusiveness of the tinnitus makes it difficult for me to concentrate even for routine tasks like using this forum. How the **** am I gonna plan my suicide? :-(

Relax, you will habituate.

 

[Labyrinthine]

Hi everyone,

I thought of a hypothetical situation to consider. Imagine cochlear regenerative medicine works (or Susan Shore's device or University of Minnesota's) and it becomes as routine as LASIK eye surgery. Now imagine, like the LASIK you are recommended to get one side done at a time (just pretend this is always recommended). Imagine getting the first ear done and your hearing distortions, tinnitus etc start to disappear never to return. Even if that second appointment for the other side was 6 months away, imagine how much easier that 6 months would be than the months to years before. Just knowing for sure.

Cures and treatments are coming. I know Lenire was not a magic bullet as hoped but new treatments are coming soon. I also know it is hard to endure and hold out and people don't get it and many people in fact just suck but it will get better soon. The science is there and i am obsessed with it and I really see it is so close.

Feel free to tell me not to peddle my "false hope" or to fuck off (believe me I would understand) but I very strongly believe real, actual treatments are coming.

I concur with FGG; I have my hopes set on regenerative medicine as well. I do believe that hyperacusis & tinnitus in many cases originates in the inner ear, and our brains - being the highly plastic organ that it is - attempts to adjust in a maladaptive fashion, which ultimately leads to, well... bullshit, to say the least. The point I'm trying to make, though, is that perhaps our brains can revert back to old settings once that damage in the inner ear has been fixed through regenerative medicine. Optimistic much? Yep, but I don't have a choice, because my abysmal situation depends on medical advances.

I'd like to remain hopeful despite the fact I've hardly seen the sun in the last 6 months.

Peddle away...
In need of hope.

How have you been?

 

[Chinmoku]

Hi everyone,

I thought of a hypothetical situation to consider. Imagine cochlear regenerative medicine works (or Susan Shore's device or University of Minnesota's) and it becomes as routine as LASIK eye surgery. Now imagine, like the LASIK you are recommended to get one side done at a time (just pretend this is always recommended). Imagine getting the first ear done and your hearing distortions, tinnitus etc start to disappear never to return. Even if that second appointment for the other side was 6 months away, imagine how much easier that 6 months would be than the months to years before. Just knowing for sure.

Cures and treatments are coming. I know Lenire was not a magic bullet as hoped but new treatments are coming soon. I also know it is hard to endure and hold out and people don't get it and many people in fact just suck but it will get better soon. The science is there and i am obsessed with it and I really see it is so close.

Feel free to tell me not to peddle my "false hope" or to fuck off (believe me I would understand) but I very strongly believe real, actual treatments are coming.

I agree with you, FGG, but I am concerned on the timeline. A lot of us need help quickly, the timing will be critical.

 

[brokensoul]

Hi everyone,

I thought of a hypothetical situation to consider. Imagine cochlear regenerative medicine works (or Susan Shore's device or University of Minnesota's) and it becomes as routine as LASIK eye surgery.

We can't however compare LASIK to hearing regeneration. We need to restore cochlear hair cells, synapses and auditory nerve function. It's advanced microbiology.

LASIK is mostly sharpening the lens of your eye as far as I know and perhaps some other procedures. It's advanced, but doesn't even come close to what we need to restore hearing. We're not exactly regenerating the whole retina today. Not even close to achieving anything like that.

Having said that, we are lucky, because it seems we have a shot. All the generations before us had nothing. 10 years ago, hearing regeneration was just an academic concept. Today we have several companies in trials to realise the seemingly impossible. We've advanced so much some people can already start to smell victory. Frequency Therapeutics is advancing and has already shown promising results today. It gives me some hope and energy to keep struggling forward.

We're also very lucky that regenerative medicine is focussing on hearing first!

In my opinion it will still take many years to get to a functional hearing regeneration procedure, which can be done by your ENT as if it was a routine LASIK eye surgery. We all want it now, but we'll still have to be patient.

I'll wait to see Dr. Susan Shore's second trial results and FX-322' second trial and PIPE's. We'll know then how close we are getting to being freed. I'm hoping for good results for all of us.

 

[FGG]

We can't however compare LASIK to hearing regeneration. We need to restore cochlear hair cells, synapses and auditory nerve function. It's advanced microbiology.

LASIK is mostly sharpening the lens of your eye as far as I know and perhaps some other procedures. It's advanced, but doesn't even come close to what we need to restore hearing. We're not exactly regenerating the whole retina today. Not even close to achieving anything like that.

Having said that, we are lucky, because it seems we have a shot. All the generations before us had nothing. 10 years ago, hearing regeneration was just an academic concept. Today we have several companies in trials to realise the seemingly impossible. We've advanced so much some people can already start to smell victory. Frequency Therapeutics is advancing and has already shown promising results today. It gives me some hope and energy to keep struggling forward.

We're also very lucky that regenerative medicine is focussing on hearing first!

In my opinion it will still take many years to get to a functional hearing regeneration procedure, which can be done by your ENT as if it was a routine LASIK eye surgery. We all want it now, but we'll still have to be patient.

I'll wait to see Dr. Susan Shore's second trial results and FX-322' second trial and PIPE's. We'll know then how close we are getting to being freed. I'm hoping for good results for all of us.

The comparison wasn't meant to be in terms of complexity but to illustrate how different it would feel to deal with a bilateral problem in general after having one side fixed and *knowing* the other side will be too.

 

[bobvann]

Relax, you will habituate.

Rigghhht.