Suicidal

[Shizune]

If you are having attacks *specifically* after loud noises mention this to your ENT. That particular symptom is called "tullio phenomenon" and it can apply to certain structural problems like superior canal dehiscence.

Pressure changes can be a factor with Meniere's but also things like perilymph fistula. I hope you made an appointment...

This attack in particular happened after sleeping on the floor awhile having earmuffs on. Woke up, turned over, and the room was spinning. I figured it may have been from neck position or some delayed and new setback symptoms. I can't tell if noise triggers it or not since I've been avoiding it. Everything just kind of hurts at once. It might be in my head. Can't tell. Right now I'm feeling heaps better but I have a lot of patches of flashing white in my vision, even with my eyes closed.

I'm currently living in the middle of nowhere and I'm not sure what specialists are around here, I have no insurance, and I'm unable to use phones due to my hyperacusis. I've been incapacitated by this episode so I haven't gotten to look much into it/ask my friend to since we communicate via text. He is basically my caretaker at this point.

I'm not sure about Meniere's at all. But if the Otonomy trials look promising, I figure it can help with general vestibular stuff, regardless if you have the disorder or not? I haven't looked into it much at all since it was never an issue for me since hyperacusis until now.

I'm not really sure where to begin exactly in regards to ENTs. I'm not sure if my hyperacusis will be taken seriously or made worse by any tests either, or if they'll focus on that rather than the other thing. So I do feel pretty stuck. Along with conveying any of the information you gave me... I'm just a afraid of the whole "don't believe what you read online" crap... I'm not very trusting of MDs at all. Am I being too paranoid?

 

[Contrast]

me right now.

 

[FGG]

This attack in particular happened after sleeping on the floor awhile having earmuffs on. Woke up, turned over, and the room was spinning. I figured it may have been from neck position or some delayed and new setback symptoms. I can't tell if noise triggers it or not since I've been avoiding it. Everything just kind of hurts at once. It might be in my head. Can't tell. Right now I'm feeling heaps better but I have a lot of patches of flashing white in my vision, even with my eyes closed.

I'm currently living in the middle of nowhere and I'm not sure what specialists are around here, I have no insurance, and I'm unable to use phones due to my hyperacusis. I've been incapacitated by this episode so I haven't gotten to look much into it/ask my friend to since we communicate via text. He is basically my caretaker at this point.

I'm not sure about Meniere's at all. But if the Otonomy trials look promising, I figure it can help with general vestibular stuff, regardless if you have the disorder or not? I haven't looked into it much at all since it was never an issue for me since hyperacusis until now.

I'm not really sure where to begin exactly in regards to ENTs. I'm not sure if my hyperacusis will be taken seriously or made worse by any tests either, or if they'll focus on that rather than the other thing. So I do feel pretty stuck. Along with conveying any of the information you gave me... I'm just a afraid of the whole "don't believe what you read online" crap... I'm not very trusting of MDs at all. Am I being too paranoid?

If you have vertigo episodes, they will take it seriously because ENTs know ways to work these cases up well, unlike tinnitus. The only thing they might balk at is viral testing but you can get a good work up before that point and even a GP can help you with that later if needed.

As far as testing making it worse, there is a vestibular test where they insert air or water into your ear canal in a circular pattern and measure your vestibular response (they examine your ear drum first to make sure it's intact--it should be). I have had both. The air is loud and I would avoid in your case but the water is not. However, there is what I can describe as an aquarium pump type device to pump the water, and I'm not sure if that would be too loud for you.

Do not get an MRI with hyperacusis. The chances you have an acoustic neuroma is low and it could cause noise damage.

It doesn't sound like you have tullios as a symptom, you would know as the reaction would be specifically to noise.

I'm glad you are feeling better. The only good thing about severe discreet vertigo episodes is they are not generally continuous as it's literally torture. I have had my fair share of them and I can fully emphasize and sympathize.

The flashes of white light make me wonder about general about vestibular migraine which can be linked to neck issues. It's also possible you have vascular compression issues (@Greg Sacramento knows more than anyone else on the forum about these).

Regardless, you need a work up especially if it continues and this is one area where ENTs can actually be very helpful.

 

[Snake]

Got 2 severe worsenings this year from acoustic traumas and lost a GF now, I want to fucking die, I'm now alone with everything. She was the one I cried with, lie with and talked with and tried to live for even for just one more day. I loved her, kill me.

 

[jasonbourne]

Got 2 severe worsenings this year from acoustic traumas and lost a GF now, I want to fucking die, I'm now alone with everything. She was the one I cried with, lie with and talked with and tried to live for even for just one more day. I loved her, kill me.

Got any friends you can spend time with? I know you feel the opposite, but best thing during a break up is not being alone. Especially with the madness of tinnitus.

 

[Snake]

Got any friends you can spend time with? I know you feel the opposite, but best thing during a break up is not being alone. Especially with the madness of tinnitus.

I don't, I would do it if so. When I first met her i finally had someone to talk to and spend time with, it was magical. Tried to do everything for her, even finding a job with severe Tinnitus after 2 worsenings. Made one mistake and everythings gone.

I'm all alone now.

 

[Shizune]

If you have vertigo episodes, they will take it seriously because ENTs know ways to work these cases up well, unlike tinnitus. The only thing they might balk at is viral testing but you can get a good work up before that point and even a GP can help you with that later if needed.

As far as testing making it worse, there is a vestibular test where they insert air or water into your ear canal in a circular pattern and measure your vestibular response (they examine your ear drum first to make sure it's intact--it should be). I have had both. The air is loud and I would avoid in your case but the water is not. However, there is what I can describe as an aquarium pump type device to pump the water, and I'm not sure if that would be too loud for you.

Do not get an MRI with hyperacusis. The chances you have an acoustic neuroma is low and it could cause noise damage.

It doesn't sound like you have tullios as a symptom, you would know as the reaction would be specifically to noise.

I'm glad you are feeling better. The only good thing about severe discreet vertigo episodes is they are not generally continuous as it's literally torture. I have had my fair share of them and I can fully emphasize and sympathize.

The flashes of white light make me wonder about general about vestibular migraine which can be linked to neck issues. It's also possible you have vascular compression issues (@Greg Sacramento knows more than anyone else on the forum about these).

Regardless, you need a work up especially if it continues and this is one area where ENTs can actually be very helpful.

Thank you for the info.

So, even if my vertigo isn't chronic? This is the first time I'm experiencing it with hyperacusis is the only thing, it hadn't been an issue prior at all. That's my only real worry, if it does involve my hyperacusis directly somehow. Sure hope it doesn't become chronic.

I finally bit the bullet and took an anti nausea medication and the throbbing is gone.

I went to pee earlier and I did actually feel nauseous upon hearing the sound so that isn't too great. But again I might be psyching myself out.

Not sure when I can make an appointment. I just moved from a high risk state so I'm sure they'll want my to do the whole COVID-19 test dance before anything sadly. I can barely touch my outer ear without my TTTS acting up so water in the canal is probably a no.

As of now though I'm trying the Epley Maneuver to see if that stops it.

So when I see an ENT should I specifically mention these things you theorize? I just don't want anyone getting defensive or anything.

Sorry for taking over the thread.

@Snake I'm really really sorry to hear all that. I can definitely relate on the one small mistake making everything crumble. I really hope something can be worked out somehow.

 

[FGG]

Thank you for the info.

So, even if my vertigo isn't chronic? This is the first time I'm experiencing it with hyperacusis is the only thing, it hadn't been an issue prior at all. That's my only real worry, if it does involve my hyperacusis directly somehow. Sure hope it doesn't become chronic.

I finally bit the bullet and took an anti nausea medication and the throbbing is gone.

I went to pee earlier and I did actually feel nauseous upon hearing the sound so that isn't too great. But again I might be psyching myself out.

Not sure when I can make an appointment. I just moved from a high risk state so I'm sure they'll want my to do the whole COVID-19 test dance before anything sadly. I can barely touch my outer ear without my TTTS acting up so water in the canal is probably a no.

As of now though I'm trying the Epley Maneuver to see if that stops it.

So when I see an ENT should I specifically mention these things you theorize? I just don't want anyone getting defensive or anything.

Sorry for taking over the thread.

@Snake I'm really really sorry to hear all that. I can definitely relate on the one small mistake making everything crumble. I really hope something can be worked out somehow.

You don't need to tell them what you think might be going on, just tell them your symptoms and your restrictions in testing (eg no MRI). Unlike tinnitus, they should at least have an idea how to work this up. They will always start with basic testing anyway.

Sometimes you have better luck with an otologist (ENT subspecialist) than an ENT.

If you can't tolerate anything in your ear, maybe they can order a rotary chair test instead (it is really called that) but again they should be able to work this up, starting with localizing where the problem is.

I would just keep a detailed journal for them so they have a very good history.

 

[Snake]

@Snake I'm really really sorry to hear all that. I can definitely relate on the one small mistake making everything crumble. I really hope something can be worked out somehow.

No way, she blocked me everywhere and made a couple of people against me. She don't remember a thing thanks to her bipolar disorder, I feel like the person i loved died because no way she could do something like this to me. Couple of weeks ago she disappeared for over a week without any contact with anyone and when she came back she was just a different person: Cold, without feelings, treated me like a friend, she could no longer just say "I love you" because now "I don't like any emotions, they're cringe" when before this she was warm, concerned about my condition and feelings, very emotional, could spam "I love you" message after message or tell me that when we were lying together several times, she could just hug me and tell me that I will never lose her.

I even let her go acoustic trauma (after which i got severe permanent worsening) which happened when we were both drunk and she went psycho and blamed the alcohol for it, meanwhile she can't forgive me just one very stupid thing I've done. Not even talk several days after without emotions, just blocked me and forgot about past couple of months, declarations and that she told me even a month ago that I will not lose her no matter what. This memory will haunt me for months, the memory where I lie with her in bed, she looks in my eyes and say "I will never let you go no matter how bad your condition gonna get or whatever will happen, you will not lose me"

I miss her, she was my reason to fight. I will miss her as long as i will not find another love and we know that it's a miracle in our situation, I cry all day.

 

[Shizune]

@FGG thank you for your continued help and putting up with my questions!

@Snake honestly you probably don't want to hear this but it sounds like you're better off. I know having a partner who is understanding of our conditions is appealing and comforting but from what it sounds like, she was manipulating you. I had a partner very similar years and years ago. And yeah, I know how much it hurts to hear that you'll be accepted unconditionally then let go at the worst time.

Heartbreak really does suck, especially if you give it your all, let so many things pass, but as soon as to slip up, you're the monster in their eyes.

At the end of the day, you're all you have. You only have you. Other people are temporary and can make empty promises. But when you find the strength within yourself, you end up not really needing another person. With conditions like ours especially, no person is worth sacrificing our health for.

Please don't let it end over this. I really do feel for you and I've totally been there, and I don't mean to come off as harsh, and I'm sorry if I do.

 

[Snake]

At the end of the day, you're all you have. You only have you. Other people are temporary and can make empty promises. But when you find the strength within yourself, you end up not really needing another person. With conditions like ours especially, no person is worth sacrificing our health for.

Not living alone is my life goal now. I experienced what it is not to be alone, what it is to lie with someone, to cry with someone, and talk with someone that WANTS to and I want it back. I'm extrovert too, I need people and nothing will change it. Now I need love too, I will find it someday or die from loneliness. I can't live like this anymore, it's frustrating and I'm dying inside.

I thought the same, but after experiencing it I know I just can't be happy without it. I can't be happy alone in my bed night after night staring at the wall, what's the purpose of it? Just existing? Then just kill me because existing itself with tinnitus is a torture, I need someone else to take care and think of because I can't take care of myself anymore (because well, you can do nothing but let the torture continue).

It's a big risk and I already experienced worsening thanks to her but the time before it was the happiest time of my life especially after 6 years of isolation. Next time I will be more careful, find someone without bipolar disorder and alcohol is no-go but I know I need not to be alone somewhere in the future. The love is just that strong emotion that it can cut through my tinnitus and misery and give me a little joy, nothing else could for all these years. I'm emotional AF, I just know I need it.

As for her, my condition was for her to start the treatment because it's a disease. Sadly bipolar disorder won, we were supposed to meet very shortly when I wanted to have a serious talk and this happened. I just feel cheated.

 

[FGG]

Not living alone is my life goal now. I experienced what it is not to be alone, what it is to lie with someone, to cry with someone, and talk with someone that WANTS to and I want it back. I'm extrovert too, I need people and nothing will change it. Now I need love too, I will find it someday or die from loneliness. I can't live like this anymore, it's frustrating and I'm dying inside.

I thought the same, but after experiencing it I know I just can't be happy without it. I can't be happy alone in my bed night after night staring at the wall, what's the purpose of it? Just existing? Then just kill me because existing itself with tinnitus is a torture, I need someone else to take care and think of because I can't take care of myself anymore (because well, you can do nothing but let the torture continue).

It's a big risk and I already experienced worsening thanks to her but the time before it was the happiest time of my life especially after 6 years of isolation. Next time I will be more careful, find someone without bipolar disorder and alcohol is no-go but I know I need not to be alone somewhere in the future. The love is just that strong emotion that it can cut through my tinnitus and misery and give me a little joy, nothing else could for all these years. I'm emotional AF, I just know I need it.

As for her, my condition was for her to start the treatment because it's a disease. Sadly bipolar disorder won, we were supposed to meet very shortly when I wanted to have a serious talk and this happened. I just feel cheated.

I'm an extrovert, too, and my (now ex) husband left me shortly after my hearing issues started. He felt he didn't sign up for a disabled wife that could no longer have her career and that there must be newly and deeply something wrong with me to cry so much.

I stayed with a friend for the first 3 months after it happened and then started an online resell business with the same friend. It took (and still takes) almost all my time and that helps.

I cry to the few friends that I feel comfortable confiding in and it helps but having a friend to stay with acutely was literally a life saver.

Is there a friend or relative you could stay with right now?

 

[Snake]

I'm an extrovert, too, and my (now ex) husband left me shortly after my hearing issues started. He felt he didn't sign up for a disabled wife that could no longer have her career and that there must be newly and deeply something wrong with me to cry so much.

I stayed with a friend for the first 3 months after it happened and then started an online resell business with the same friend. It took (and still takes) almost all my time and that helps.

I cry to the few friends that I feel comfortable confiding in and it helps but having a friend to stay with acutely was literally a life saver.

Is there a friend or relative you could stay with right now?

Sadly no friends in my city, I was in isolation for 6 years and then met her :c

 

[ajc]

Sadly no friends in my city, I was in isolation for 6 years and then met her :c

You should stop being in isolation.

Go out. Get a job. Live a life.

Other people can't be responsible for your happiness. Love is not the solution.

 

[PeteJ]

Got 2 severe worsenings this year from acoustic traumas and lost a GF now, I want to fucking die, I'm now alone with everything. She was the one I cried with, lie with and talked with and tried to live for even for just one more day. I loved her, kill me.

I am alone too. I don't know how you find or even keep a partner with this condition.

It should automatically be declared a disability for some financial support since the only other human support is a forum which isn't much, let's be honest.

Unless someone is an extreme introvert, you need to socialize to some degree. Some people would like a significant other but with severe tinnitus and hyperacusis, it's a challenge or even impossible.

 

[FGG]

Sadly no friends in my city, I was in isolation for 6 years and then met her :c

I went to Oklahoma for 3 months (I live nowhere near Oklahoma).

 

[Zugzug]

No way, she blocked me everywhere and made a couple of people against me. She don't remember a thing thanks to her bipolar disorder, I feel like the person i loved died because no way she could do something like this to me. Couple of weeks ago she disappeared for over a week without any contact with anyone and when she came back she was just a different person: Cold, without feelings, treated me like a friend, she could no longer just say "I love you" because now "I don't like any emotions, they're cringe" when before this she was warm, concerned about my condition and feelings, very emotional, could spam "I love you" message after message or tell me that when we were lying together several times, she could just hug me and tell me that I will never lose her.

I even let her go acoustic trauma (after which i got severe permanent worsening) which happened when we were both drunk and she went psycho and blamed the alcohol for it, meanwhile she can't forgive me just one very stupid thing I've done. Not even talk several days after without emotions, just blocked me and forgot about past couple of months, declarations and that she told me even a month ago that I will not lose her no matter what. This memory will haunt me for months, the memory where I lie with her in bed, she looks in my eyes and say "I will never let you go no matter how bad your condition gonna get or whatever will happen, you will not lose me"

I miss her, she was my reason to fight. I will miss her as long as i will not find another love and we know that it's a miracle in our situation, I cry all day.

I'm not taking her side, but bipolar is really rough stuff (as you know better than I do). People with this condition often struggle with relationships, to no fault of their own. It has the capacity to turn rational people into emotional wrecks. I'm not telling you anything you don't already know, but I think you could benefit from moving on in as neutral of a way as possible. In other words, you both have empathy for each other, but it's not meant to be.

Definitely lean on other support, including here.

 

[Snake]

You should stop being in isolation.

Go out. Get a job. Live a life.

Other people can't be responsible for your happiness. Love is not the solution.

Money isn't the solution either, and yes I'm looking for a remote job (after interview and waiting for a decision). But money can't buy me happiness, it's just a tool.

 

[Snake]

I'm not taking her side, but bipolar is really rough stuff (as you know better than I do). People with this condition often struggle with relationships, to no fault of their own. It has the capacity to turn rational people into emotional wrecks. I'm not telling you anything you don't already know, but I think you could benefit from moving on in as neutral of a way as possible. In other words, you both have empathy for each other, but it's not meant to be.

Definitely lean on other support, including here.

Yes I know, I still think her fault was that she didn't start the treatment before I met her (she was like this for years). I wanted to ask her to start the treatment next time I met her, that I would help her and maybe even help financially if I would get a job but now this happened. If she would change again and apologize I would try again on one condition, starting the treatment.

But sadly I think I was just a victim of her disorder and that she never really loved me, she thought she did and now after the mood swing she instantly didn't and forgot everything. So much that she doesn't even think about me anymore from what I see.

Maybe if she had started the treatment in the past, nothing would have happened and we would be good friends and my tinnitus would not have gotten worse.

 

[Zugzug]

Maybe if she had started the treatment in the past, nothing would have happened and we would be good friends and my tinnitus would not have gotten worse.

I think in this way a lot. I have a disease that was (partially) triggered by an untreated anxiety disorder. Obviously, that's not the whole story, as a large part of it is just genetic bad luck. Something that helps me is the following: I look at my life and think about if I would regret anything if I never got the disease. The answer is no, which tells me that I'm taking the outcome and working backwards.

Whatever caused your tinnitus, I have to imagine in present time, things felt right. Sadly, that's the best we can do.

 

[Gabriel5050]

@Snake I feel sorry this happened to you. That's why it's risky to base your happiness on other people. It can be wholesome, but deep down we all know it's risky. Maybe that's why it can feel good. Time will heal those feelings. Just focus more on yourself instead.

And then there's me. Who no matter what I do, gets worse tinnitus. Little by little every day. Sometimes I get unlucky and it gets worse by a considerable margin! So, at the very least you don't have to deal with that.

 

[Greg Sacramento]

The flashes of white light make me wonder about general about vestibular migraine which can be linked to neck issues. It's also possible you have vascular compression issues (@Greg Sacramento knows more than anyone else on the forum about these).

@Shizune Your problems above may be from raising blood pressure where an ophthalmic migraine can cause flashes of light in vision. This causes dilation of blood vessels in the brain that can also extend to the carotid arteries of neck. It's understandable that you may be getting high blood pressure moments.

I have experience with the same - but I had a very brief hypertension crisis - a medical term, where my retina in left eye was torn. One will see blood and very large floaters in eye when this happens. I received laser photocoagulation to fuse retina - a 30 second procedure.

 

[__nico__]

I don't know if this is the right place to post but I just legitimately want to fucking kill myself more than ever. I don't know if I have hyperacusis or not but the past month my hearing has gone from having wildly distorted pitches to sounding like a broken speaker and as a musician lover and musician myself I've reached my limit. I've been an extremely happy, outgoing, optimistic person and like the flick of a switch I just want to kill myself because this has no end. My hearing will never be restored since it's dysacusis and I've already had sensorineural hearing loss since infancy. Someone fucking shoot me.

 

[Jrblovsky]

I don't know if this is the right place to post but I just legitimately want to fucking kill myself more than ever. I don't know if I have hyperacusis or not but the past month my hearing has gone from having wildly distorted pitches to sounding like a broken speaker and as a musician lover and musician myself I've reached my limit. I've been an extremely happy, outgoing, optimistic person and like the flick of a switch I just want to kill myself because this has no end. My hearing will never be restored since it's dysacusis and I've already had sensorineural hearing loss since infancy. Someone fucking shoot me.

I'm sorry man. I'm at the same point in my life. My right ear is destroyed from a faulty earplug and 10-15 rounds from a handgun and I guess Meniere's disease. I have roaring so loud I contemplate killing myself everyday. I feel bad for my wife and child being I was a happy, outgoing, and hardworking husband and father before this hell. I just turned 34 and I've been suffering everyday with insanely loud roaring tinnitus. The noise is unmaskable and literally has me bedridden several days a week. I used to work 50 to 60 hours per week and went to grad school. Finished grad school, graduated, and get hit with this not even two weeks later. Had to pass up several $100k plus a year jobs and lost my very good job and career. I sold every firearm I owned being I nearly followed through with it on the fourth of July 2020.

I was optimistic i would get better but that isn't happening. Some of the members here say it takes years to see improvement if it ever comes. I really hope you see improvement and can get on with your life and enjoy it. I've spent so much money on doctors and I'm worse now than when I started out.

I never had really though about tinnitus before this happened to me. I've had my ears ring a handful of times but always use hearing protection religiously when shooting and at loud events. Life is a real bitch and definitely unfair.

The hype of the drugs being tested on this forum is high and I really hope they work but I don't know how to function for another decade before they release; if they even end up working at all.

All the best.

 

[Still-Hope]

Hi Nico, I'm suffering from severe tinnitus, hyperacusis and I had such bad distortions and other weird effects as well...

I don't listen to music anymore. Music was my job and my whole life too.

I was a very positive person, like you.

Please try to keep hope as there are a few potential treatments in the pipeline that could give us a bit of relief in a near future!

Sending my empathies to you, I don't know if that helps! But know that, as most of us, I understand what you feel!

 

[__nico__]

I'm not patient enough for treatments as I've literally poured my entire life into music. I can't believe for a good stretch of my life I was in a constant state of euphoria and elation and utter happiness and would never think twice about suicide but now it's my only thought 24/7. It's not even just this. All my important friendships were woven through music, even my relationship was woven through love of music. Life has just become hollowed out and devoid of joy for me. If I try to distract myself my symptoms come back to haunt me with a vengeance. I have abused my ears to no end and I know noxacusis and pain are gonna be inevitable in the days to come. So really I just genuinely plan on being dead in the near future. I'm not ready for this life. I didn't fucking sign up for it and I can't afford it. If I disappear from this forum and elsewhere, know I'm probably dead and at peace.

 

[twa]

@SadMan

My tinnitus has not improved. It rarely fluctuates now although it seems worse at night. However, it's extremely loud 24/7, even in the morning. I don't know if loud noises or other acoustic traumas contributed to it worsening or if it's just an unexplainable progression because I am not sure. I can only speculate because I live in a noisy area. Frequent sirens, truck noises, trains and construction close by. I also have ear pain at times. I don't know how to express or describe the tinnitus severity so I rate it. Usually, 9 - 10/10 with 10/10 as so loud I want my life to end. It's bad. I wish this research stuff here could become a reality although I doubt it will be sufficiently effective for severe tinnitus. I hope I answered your questions. Feel free to message anytime.

I'm so sorry, are you able to do things during the day that distract you?

 

[ajc]

The hype of the drugs being tested on this forum is high and I really hope they work but I don't know how to function for another decade before they release; if they even end up working at all.

You're a young guy. Don't commit suicide now when relief could be a few years away.

 

[FGG]

You're a young guy. Don't commit suicide now when relief could be a few years away.

To add to this @Jrblovsky, have you looked into all you options for your Meniere's. Some Otologists are way better at managing symptoms than others.

 

[Jrblovsky]

You're a young guy. Don't commit suicide now when relief could be a few years away.

Keyword COULD.

The last eight drugs that went to hearing regeneration trials did not work at all. If I could at least work and function I would be okay waiting, but this shit took that from me too. I wasted seven years of my life and over $100k in tuition and didn't even get to reap the benefits. Fuck this ailmet and fuck the medical community for not taking it seriously. If the U.S government gave a shit about its veterans and citizens they could allocate even a single percent of the $650 billion dollars they spend annually on the military to finding a cure. They would rather let Americans suffer in agony and commit suicide than do something about it. The world produced a vaccine for COVID-19 which they have known about for what, two years. People have been suffering life altering consequences for decades. The Hough Ear Institute can't even get funding to finish their research.