Suicidal

[RishRamsey]

When? When does the pain start? For how long?

For pain hyperacusis, the pain is instant, like a stabbing sensation deep inside the ear canal/eardrum. Then after that pain, the dull lingering pain around the ear/jaws start.
Some of the most common sounds - horns of any kind, metal on metal, cutlery, glass, laughing near the ear, talking a bit over normal convo levels, any other high pitch sound!

 

[Orions Pain]

Are you still going to your job? That's one of the very very few things that keeps me going - while I know that going out in traffic is only going to worsen me, I can't really stop doing my job.
But today it's really getting me down, haven't removed my ear muffs all day today in home

Yes, it's the only thing keeping me sane right now. Also I wouldn't be able to afford my apartment without working, and with all the coronavirus stuff there's no way I'd be able to find someone to take over my spot.

Will probably end up moving home at some point within these next few weeks-months.

 

[Orions Pain]

The most frustrating thing is no one believes you. My parents don't believe me. My friends and coworkers don't believe me. The only people that believe me are you guys.

My parents refuse to listen to me until I get a diagnosis, but how am I supposed to do that? I've already seen a ton of doctors. I am frustrated beyond belief.

 

[Harley]

The most frustrating thing is no one believes you. My parents don't believe me. My friends and coworkers don't believe me. The only people that believe me are you guys.

My parents refuse to listen to me until I get a diagnosis, but how am I supposed to do that? I've already seen a ton of doctors. I am frustrated beyond belief.

What do they mean by diagnosis?
You have tinnitus.
They can look up the fact that there is no cure or a treatment for this horrid condition themselves with a quick online search.

I wish all the non-believers would get severe tinnitus for at least a month straight.
Having to constantly try and prove something is a curse of the invisible condition.

This is part of the reason why I would rather have no legs.
At least I wouldn't have to keep explaining.

 

[Orions Pain]

What do they mean by diagnosis?
You have tinnitus.
They can look up the fact that there is no cure or a treatment for this horrid condition themselves with a quick online search.

I wish all the non-believers would get severe tinnitus for at least a month straight.
Having to constantly try and prove something is a curse of the invisible condition.

This is part of the reason why I would rather have no legs.
At least I wouldn't have to keep explaining.

I'm more so referring to hyperacusis.

Also tinnitus itself is a symptom, so I'm talking about getting a diagnosis for the actual issue. If it's from acoustic trauma it's pretty much impossible especially if you don't have detectable hearing loss. They can't test for tinnitus, it's all based on your word. Same with Hyperacusis - other than testing ldls they can't do anything else

 

[Harley]

I'm moreso referring to hyperacusis. Also tinnitus is a symptom, so I'm talking about getting a diagnosis for the actual issue. If it's from acoustic trauma it's pretty much impossible especially if you don't have detectable hearing loss.

Ok I see now.
The problem is there are literally 1000 different things which could cause tinnitus, so a 100% sure diagnosis is literally next to impossible.

Everything comes down to an educated guess.

You could spend the next 100 years in the waiting rooms at various clinics, running different tests and still not find out what caused it.

Most people will simply never know.

Also, most hearing tests are done only up to 8000 Hz, so if your tinnitus is in higher range (which in most cases it is), it will not reveal anything unusual.
If we are in dark ages in regards to tinnitus, we are in stone age in regards to hyperacusis.

 

[Kriszti]

What do they mean by diagnosis?
You have tinnitus.
They can look up the fact that there is no cure or a treatment for this horrid condition themselves with a quick online search.

I wish all the non-believers would get severe tinnitus for at least a month straight.
Having to constantly try and prove something is a curse of the invisible condition.

This is part of the reason why I would rather have no legs.
At least I wouldn't have to keep explaining.

I know it's not nice and I wouldn't wish this on anyone for real permanently, but I would make the non-believers have tinnitus for a month without them actually knowing that it's "only" for a month. They'd be much more understanding.

Also, the newest sound irritates me so much. It's a cross between doves cooing, and an ambulance, but more vibrating. It's rhythmic and currently I find it even harder to deal with it than the constant high pitched flexing. Why do new sounds come from nowhere...

 

[Orions Pain]

Ok I see now.
The problem is there are literally 1000 different things which could cause tinnitus, so a 100% sure diagnosis is literally next to impossible.

Everything comes down to an educated guess.

You could spend the next 100 years in the waiting rooms at various clinics, running different tests and still not find out what caused it.

Most people will simply never know.

Also, most hearing tests are done only up to 8000 Hz, so if your tinnitus is in higher range (which in most cases it is), it will not reveal anything unusual.
If we are in dark ages in regards to tinnitus, we are in stone age in regards to hyperacusis.

Yes, I completely understand this. My parents do not. I could care less about a diagnosis, I know what I am feeling/experiencing and there's nothing that doctors can do to alleviate it. This is the only reason why I believe others come on here saying other *more serious* disorders would be better because at least then people around you are understanding.

 

[Orions Pain]

For pain hyperacusis, the pain is instant, like a stabbing sensation deep inside the ear canal/eardrum. Then after that pain, the dull lingering pain around the ear/jaws start.
Some of the most common sounds - horns of any kind, metal on metal, cutlery, glass, laughing near the ear, talking a bit over normal convo levels, any other high pitch sound!

Clapping and dogs barking kill me.

 

[DaveFromChicago]

To Orions Pain:

Harley is entirely correct regarding how mysteriously this condition manifests itself.
I never exposed myself to loud music or noise, and I had an MRI (that cost $4,000.00.)
My ENT Doctor said that it revealed no indication of organ damage.
I will spend the rest of my life without any semblance of an answer about why I have this.
I am on my seventh year with this, and I feel like Lee at Appomattox.
I am surrounded with no recourse for an escape or even a holding strategy.
I recently had an examination at my Optometrist's, and to cover my tinnitus I had to ramp up the amplification of my hearing aids so much that the ceiling heating system's high pitched sound was as loud as my natural tinnitus. This became so invasive that I had to steel myself to
not literally bolt out to the street.
This Virus has virtually paralyzed travel, and reduced my 401k. I found myself actually, gladly welcoming this;
"Now" I said, "my wife will not be able to order me to go anywhere that will activate my tinnitus as a gauntlet of torture."
I now realize that with such regularly accepted thinking tinnitus has imbued me with a species of galling insanity; every consideration of activity must take into account how much tinnitus will interfere with it.

I have on several occasions played Acute's 11/16/19 download with that sound that resembles her tinnitus.
I have had that type and severity of sound in a few instances; it feels as if my tinnitus has melted down some portion of my brain to the extent that Plutonium melted down Chernobyl.
My wife keeps insisting that I see a CBT Practitioner, and is infuriated when I respond with a look of contemptuous disdain (imagine the bad faith involved in seeing a Julian Cowan Hill or a Jastreboff.)
I have a real sense of approaching horror that being limited by this could finally lead to her announcement that she wants a divorce.
You are compelled to ask yourself how much you will finally allow this condition to take from you.

 

[Christopher805]

The most frustrating thing is no one believes you. My parents don't believe me. My friends and coworkers don't believe me. The only people that believe me are you guys.

My parents refuse to listen to me until I get a diagnosis, but how am I supposed to do that? I've already seen a ton of doctors. I am frustrated beyond belief.

There are several websites that allow people to hear the various tinnitus sounds. Let your parents and anyone else who does not believe it's debilitating listen to it to see if they can tolerate the sound. Take two cell phones and place one next to each ear. See if they believe you then.

 

[Christopher805]

To Orions Pain:

Harley is entirely correct regarding how mysteriously this condition manifests itself.
I never exposed myself to loud music or noise, and I had an MRI (that cost $4,000.00.)
My ENT Doctor said that it revealed no indication of organ damage.
I will spend the rest of my life without any semblance of an answer about why I have this.
I am on my seventh year with this, and I feel like Lee at Appomattox.
I am surrounded with no recourse for an escape or even a holding strategy.
I recently had an examination at my Optometrist's, and to cover my tinnitus I had to ramp up the amplification of my hearing aids so much that the ceiling heating system's high pitched sound was as loud as my natural tinnitus. This became so invasive that I had to steel myself to
not literally bolt out to the street.
This Virus has virtually paralyzed travel, and reduced my 401k. I found myself actually, gladly welcoming this;
"Now" I said, "my wife will not be able to order me to go anywhere that will activate my tinnitus as a gauntlet of torture."
I now realize that with such regularly accepted thinking tinnitus has imbued me with a species of galling insanity; every consideration of activity must take into account how much tinnitus will interfere with it.

I have on several occasions played Acute's 11/16/19 download with that sound that resembles her tinnitus.
I have had that type and severity of sound in a few instances; it feels as if my tinnitus has melted down some portion of my brain to the extent that Plutonium melted down Chernobyl.
My wife keeps insisting that I see a CBT Practitioner, and is infuriated when I respond with a look of contemptuous disdain (imagine the bad faith involved in seeing a Julian Cowan Hill or a Jastreboff.)
I have a real sense of approaching horror that being limited by this could finally lead to her announcement that she wants a divorce.
You are compelled to ask yourself how much you will finally allow this condition to take from you.

Your description of the meltdown of your brain is truly accurate. My wife who has been my support the last 10 months recently contracted a stomach bug. So she could not shop today. As bad as I felt with a bad back, a rotten stomach and tinnitus and hyperacusis I had no choice but to go shopping. It was not a good experience and sadly I could not wait to get home, which has now become my dreaded, dark dungeon. I, too, wonder when my wife will say she's had enough or better yet I tell her I am tired of seeing her suffer as a result of watching me fall apart. Maybe I'll serve her papers for divorce because no one deserves to see someone they love suffer so greatly and have nothing by way of lessening the suffering. Everyday is a struggle to stay a float. Some, if not all of us, will say what did I do to deserve this? With this condition, it gives you plenty of time to reflect on your life. Most of us, if not all of us, will conclude nothing warranted this condition. So WHY? The answer is we will never know. I guess the consolation is that it's not fatal. However, I disagree while it's not fatal it quells all your dreams and aspirations and forces you to see everyday how different your life has become. It teases you, it cruelly dangles what's familiar and normal right in front of your eyes. It's like being encased in a glass jar but you cannot touch, feel or hear anything except what's in the jar. But you see your former reality.

 

[MrCrybaby]

I feel like since getting tinnitus I can't handle any of the emotional stressors of my life. I'm just a worthless shell of my former joyful self. I don't think I'll kill myself, but I really hope I die. My pain has improved a lot, but it's still a constant dull throb that wears on me. The tinnitus has not let down since day 1 and probably never will. I don't know, maybe I'm just having a hard night. I hope I can find a way to get my joy back somehow.

 

[Tweedleman]

I guess the consolation is that it's not fatal. However, I disagree while it's not fatal it quells all your dreams and aspirations and forces you to see everyday how different your life has become. It teases you, it cruelly dangles what's familiar and normal right in front of your eyes. It's like being encased in a glass jar but you cannot touch, feel or hear anything except what's in the jar. But you see your former reality.

Yes, not fatal but it's every bit as life threatening in a different sense, just like you've pointed out. All hearing disorders and impairments are absolutely wretched on the spirit.

Hopefully researchers can eventually lead us to completely regenetating the inner ear so we can fix all of this horrible shit.

 

[MrCrybaby]

Yes, not fatal but it's every bit as life threatening in a different sense, just like you've pointed out. All hearing disorders and impairments are absolutely wretched on the spirit.

Hopefully researchers can eventually lead us to completely regenetating the inner ear so we can fix all of this horrible shit.

Full inner ear regeneration is looking like it will be here in the 2030s. Currently in development at Decibel (LATS) and Harvard (ATOH), and hopefully more teams in the future.

 

[Christopher805]

Full inner ear regeneration is looking like it will be here in the 2030s. Currently in development at Decibel (LATS) and Harvard (ATOH), and hopefully more teams in the future.

Unfortunately, I will be darn near 70 by then. That's at least 10 more years with this mess. Really.

 

[Orions Pain]

There are several websites that allow people to hear the various tinnitus sounds. Let your parents and anyone else who does not believe it's debilitating listen to it to see if they can tolerate the sound. Take two cell phones and place one next to each ear. See if they believe you then.

It's not my tinnitus that bothers me so much anymore. It's the hyperacusis, the sensitivity that leaves me housebound and the weird burning in my face that scares me.

 

[Orions Pain]

I feel like since getting tinnitus I can't handle any of the emotional stressors of my life. I'm just a worthless shell of my former joyful self. I don't think I'll kill myself, but I really hope I die. My pain has improved a lot, but it's still a constant dull throb that wears on me. The tinnitus has not let down since day 1 and probably never will. I don't know, maybe I'm just having a hard night. I hope I can find a way to get my joy back somehow.

This is how I feel too. I'm too early into it to actually be able to kill myself, I'm too
Scared of that pain. So far the pain of my life hasn't surpassed the pain I would feel from suicide. But it's almost like a PTSD, but like a CTST *current traumatic stress disorder*

 

[Orions Pain]

To Orions Pain:

Harley is entirely correct regarding how mysteriously this condition manifests itself.
I never exposed myself to loud music or noise, and I had an MRI (that cost $4,000.00.)
My ENT Doctor said that it revealed no indication of organ damage.
I will spend the rest of my life without any semblance of an answer about why I have this.
I am on my seventh year with this, and I feel like Lee at Appomattox.
I am surrounded with no recourse for an escape or even a holding strategy.
I recently had an examination at my Optometrist's, and to cover my tinnitus I had to ramp up the amplification of my hearing aids so much that the ceiling heating system's high pitched sound was as loud as my natural tinnitus. This became so invasive that I had to steel myself to
not literally bolt out to the street.
This Virus has virtually paralyzed travel, and reduced my 401k. I found myself actually, gladly welcoming this;
"Now" I said, "my wife will not be able to order me to go anywhere that will activate my tinnitus as a gauntlet of torture."
I now realize that with such regularly accepted thinking tinnitus has imbued me with a species of galling insanity; every consideration of activity must take into account how much tinnitus will interfere with it.

I have on several occasions played Acute's 11/16/19 download with that sound that resembles her tinnitus.
I have had that type and severity of sound in a few instances; it feels as if my tinnitus has melted down some portion of my brain to the extent that Plutonium melted down Chernobyl.
My wife keeps insisting that I see a CBT Practitioner, and is infuriated when I respond with a look of contemptuous disdain (imagine the bad faith involved in seeing a Julian Cowan Hill or a Jastreboff.)
I have a real sense of approaching horror that being limited by this could finally lead to her announcement that she wants a divorce.
You are compelled to ask yourself how much you will finally allow this condition to take from you.

The inevitable is the scariest part. We are all extremely strong people, hang in there. Hopefully something brings us relief soon. I find comfort knowing I don't matter in the grand scheme of things. Just an organism with a bit more of a capacity for emotions that others.

 

[MrCrybaby]

Unfortunately, I will be darn near 70 by then. That's at least 10 more years with this mess. Really.

Partial regeneration (hair cells and synapses) will be here by the mid 2020s there are two candidates (frequency for hair cells and Hough for synapses) that are already in phase two trials and could very well be on the market by 2025. Hair cells and the synapses that connect them to the auditory nerve are the most vulnerable steps. Restoration will likely resolve symptoms for most people, and at least improve symptoms for edge cases. There is still cause to be hopeful.

 

[serendipity1996]

Had my appointment with an ENT today (NHS). I have to say, it went better than expected as I was bracing myself for the worst. To my surprise, the ENT was familiar with tinnitus and hyperacusis and said he had seen other patients with similar presentations. Perhaps a sign of a rising problem lol? Anyway, he did seem to listen and take on board what I told him - he offered me 2 options for further treatment: a) sound therapy and b) psychological help (probs CBT of some kind). Put myself down for both although I'm doubtful of the utility of sound therapy for me as I don't really have much loudness hyperacusis, pain was my primary concern.

I did find him a bit dismissive when I pointed out that my main source of distress was the pain I had been experiencing (burning, tingling etc). He did kind of brush this off and say it wasn't 'clinically significant' which doesn't exactly inspire confidence... but he said there's nothing that can really be done on that front in terms of meds or anything. Thankfully, my pain has improved significantly over the past week or so so I'm hopeful that it will continue to do so - not totally out of the woods yet but better than it's been in a long while.

 

[dan]

I have a real sense of approaching horror that being limited by this could finally lead to her announcement that she wants a divorce.

Look up MGTOW.

 

[dan]

When? When does the pain start? For how long?

Sometimes immediately, sometimes the day after.
When I first got tinnitus in 2011, my ear pain lasted about a year, started lessening after 6 months.
Nowadays if I'm exposed to loud noise I experience fullness and dull middle ear pain, followed by worsening tinnitus.

 

[dan]

@acute could you describe your tinnitus? Sounds, loudness... I just cannot risk listening to the video you put up because my tinnitus reacts to this kind of stuff.

 

[Orions Pain]

There are several websites that allow people to hear the various tinnitus sounds. Let your parents and anyone else who does not believe it's debilitating listen to it to see if they can tolerate the sound. Take two cell phones and place one next to each ear. See if they believe you then.

It's not that they don't believe that I have tinnitus. It's the endless "see more doctors, there is a cure" that drives me up the wall. They read that it's a symptom, so they want me to find the cause. The cause was noise damage, but there is no way I can test for this.

I've played them the sounds I hear before.

 

[Bartoli]

It's not that they don't believe that I have tinnitus. It's the endless "see more doctors, there is a cure" that drives me up the wall. They read that it's a symptom, so they want me to find the cause. The cause was noise damage, but there is no way I can test for this.

I've played them the sounds I hear before.

Did you get an extended audiogram all the way up to 16kHz? Speech in noise testing? With noise-induced tinnitus you should be able to find something at least. Is your tinnitus mainly in one ear?

 

[serendipity1996]

Hyperacusis symptoms coming and going for no reason be like:

 

[PeteJ]

Full inner ear regeneration is looking like it will be here in the 2030s. Currently in development at Decibel (LATS) and Harvard (ATOH), and hopefully more teams in the future.

Yippie do.

"Looks like." It looks like it's cold outside. I can prove it by going outside right now.

 

[PeteJ]

Sometimes immediately, sometimes the day after.
When I first got tinnitus in 2011, my ear pain lasted about a year, started lessening after 6 months.
Nowadays if I'm exposed to loud noise I experience fullness and dull middle ear pain, followed by worsening tinnitus.

Mine is kinda like that. The delay usually isn't very long. Maybe 2 hours. It has been painful immediately after a noise but there is usually some delay.

My right ear had pain when I woke up. I don't know what that indicates. I live in a noisy area. Maybe a siren went by or something? Or maybe my right ear has a tmj problem or the hyperacusis is not as major with my right ear because pain isn't as frequent as my left? I dunno.

My left definitely feels worse but today something is wrong with my right ear. I am just tired of this. Having pain and discomfort in the ear and surrounding bone PLUS severe loud tinnitus is just beyond what I am willing to bear. Suicide is a reoccurring thought in the back of my mind everyday as life doesn't appeal to me at all.

What stops me is the fear of failing and becoming worse and what comes after - that we disappear. The other problem is the method and how to go through with it. I don't know how people do it that actually go through with it.

 

[MrCrybaby]

Yippie do.

"Looks like." It looks like it's cold outside. I can prove it by going outside right now.

I understand your impatience and suffering Pete. Unfortunately research does not bring instant gratification, it takes YEARS. We can only move towards the future one second at a time.

If you feel like picking apart language let's say this instead: Based on the current pace of research, scientists involved aim to be ready to bring a product to market within a decade that widely regenerates the cells of the inner ear.

The two promising research group's are Dr. Chen and his team at Harvard and Decibel Therapeutics' partnership with Dr. Hudspeth at Rockefeller University. These are both promising ventures. I do not play the blind hope game.