Suicidal

[Aaron91]

Thanks a lot for commenting. It is indeed cruel. Actually the only time I can understand speech perfectly is when talking to people in person, guess I forgot to mention that (for you it makes sense because of your measurable hearing loss if I remember correctly) .

ENTs and the Neurologist I visited have given up on my case. The neurologist only ordered a brain MRI and an ABR test, both of which were normal. In the least I wished they would have an explanation for what went wrong but even that is too hard to ask. I remember always hating loud noise and although using headphones for several hours a day in my teens I always was aware of the volume and hated loud places and avoided them like the plague.

Nothing of it makes sense but I have ceased looking for it, I just want the pain and suffering to stop.

I hope in one hour I will have the courage to leave for the nearby city and jump off a building, no purpose to suffer as hell awaits for tomorrow as well.

My dad committed suicide a year ago and the more I look into the science of my condition, the more I realise I am here because of the post-traumatic stress and trauma that incident gave me. I'm sorry for what you're going through and I don't have answers for you, but I just want to say something not for your sake, but for those who you will leave behind: taking your own life will not mean that your problems will die with you. They will simply be passed on to someone else and they will then have to deal with demons for their rest of their lives that they never asked for, including stress-induced physical health problems.

I hope this doesn't sound insensitive, but if you can't fight for yourself, fight for someone else. This forum is a fountain of knowledge full of people of anecdotal cases who have tried different things, some with more success than others. If you're going to end things at least exhaust every other option first. Try different medications, stack up on supplements, try some novel surgery or whatever the hell it might be. Give yourself a chance before you pull the plug.

I say all this because my father, whom I loved dearly, destroyed my life with the decision he made. I didn't just lose my dad: I lost my health, my career and my home. Please do not do that to someone else.

 

[twa]

I feel extremely suicidal today. Not really about tinnitus or hyperacusis. I am kind of misusing this forum to complain about other severe health problems I have that are equally as hopeless, physically and mentally. There aren't really many places to vent about suicidality without being shamed but holy shit, I lose more and more reasons to live daily.

I'm so sorry. Can I ask what autoimmune condition do you have?

 

[twa]

I read an interesting article with some good evidence that neuron atrophy as opposed to hair cell loss during "normal" volume events is likely the reason our tinnitus gets worse and sometimes slowly better.

Apparently it happens really slowly, nerves dying up to a two years in mice after the noise insult (assumed to be longer in humans), they sit there un-synapsed in the meantime, but if they are convinced to be "re-synapsed" and stretch back to the hair cell with neurotrophins to convince /guide them, the problem is resolved. Also talks about hidden hearing loss as the basis of your "maximum transmission volume" being reduced, and how we can all pass hearing tests (specifically why it would never show up). Would also help explain why Prednisone helps when it really shouldn't (almost none gets into the cochlear perilymph unless you're taking levels akin to having an MS attack).

M Charles Liberman: Noise-induced and age-related hearing loss: new perspectives and potential therapies

So let's not be offing ourselves until these neurotrophin factors can be injected into our ears. Too bad there's not a lot of data on diets / habits to convince the upregulation of these factors. Chronic stress & depression from what I've read won't help, but exercise will.

What are the neurotrophin therapies they are talking about?

 

[Luman]

Today I actually am wanting to die. I keep getting teased with maybe improvement only to be slammed with it getting constantly worse then being unable to work or cope. It's been 6 months and I can't deal with this anymore alone.

I'm sorry to hear this. I'm not familiar with your case, but I can tell you that it's not worth dying over. Eventually, your brain will learn to ignore it, and the worst will be over. As time passes, not right way but not 10 years, you'll be hard-pressed to even notice it anymore. The less you judge the severity, and its supposed consequences, the better. I felt terrible at six months into it, but one year later, it was an annoyance and nothing more. Now, 3.5 years later from when it started, I don't even hear it 95% of the time, and when I do, it's not a big deal.

 

[__nico__]

I'm so sorry. Can I ask what autoimmune condition do you have?

Unknown.

 

[RichieTheKid]

My dad committed suicide a year ago and the more I look into the science of my condition, the more I realise I am here because of the post-traumatic stress and trauma that incident gave me. I'm sorry for what you're going through and I don't have answers for you, but I just want to say something not for your sake, but for those who you will leave behind: taking your own life will not mean that your problems will die with you. They will simply be passed on to someone else and they will then have to deal with demons for their rest of their lives that they never asked for, including stress-induced physical health problems.

I hope this doesn't sound insensitive, but if you can't fight for yourself, fight for someone else. This forum is a fountain of knowledge full of people of anecdotal cases who have tried different things, some with more success than others. If you're going to end things at least exhaust every other option first. Try different medications, stack up on supplements, try some novel surgery or whatever the hell it might be. Give yourself a chance before you pull the plug.

I say all this because my father, whom I loved dearly, destroyed my life with the decision he made. I didn't just lose my dad: I lost my health, my career and my home. Please do not do that to someone else.

Sorry about everything you went through. I too have had the roughest year of my life and am holding on. In my darkest hours I feel I need to escape this life, because with my health every day is a battle. But you are right about the cycle of stress suicide or other things cause. The only way to break it is to have faith and rise above. We must support each other on this site.

 

[Aaron91]

Sorry about everything you went through. I too have had the roughest year of my life and am holding on. In my darkest hours I feel I need to escape this life, because with my health every day is a battle. But you are right about the cycle of stress suicide or other things cause. The only way to break it is to have faith and rise above. We must support each other on this site.

Thank you for the kind words and I'm sorry to hear you are struggling as well. I'm not particularly religious or spiritual, but the way I try to process this is that, for whatever reason, this situation has been brought upon me and I have to deal with it. Perhaps it happened to me because if it happened to someone else they would not have been able to keep going. I'm not saying this is true or untrue, but I find that trying to maintain some kind of stoicism helps me to process things and get through each day.

In saying this I am by no means trying to put myself or others on a pedestal, but when I look at some people's stories here, my own included, I realise that most people, including people I know personally, would not have coped with a similar set of circumstances and would have clocked out by now. Everyone on here is a hero as far as I'm concerned. This journey is for the strong, and strong you all are.

 

[Zugzug]

My dad committed suicide a year ago and the more I look into the science of my condition, the more I realise I am here because of the post-traumatic stress and trauma that incident gave me. I'm sorry for what you're going through and I don't have answers for you, but I just want to say something not for your sake, but for those who you will leave behind: taking your own life will not mean that your problems will die with you. They will simply be passed on to someone else and they will then have to deal with demons for their rest of their lives that they never asked for, including stress-induced physical health problems.

I hope this doesn't sound insensitive, but if you can't fight for yourself, fight for someone else. This forum is a fountain of knowledge full of people of anecdotal cases who have tried different things, some with more success than others. If you're going to end things at least exhaust every other option first. Try different medications, stack up on supplements, try some novel surgery or whatever the hell it might be. Give yourself a chance before you pull the plug.

I say all this because my father, whom I loved dearly, destroyed my life with the decision he made. I didn't just lose my dad: I lost my health, my career and my home. Please do not do that to someone else.

I'm sorry for your loss. This is a deeply complicated topic that I have no intention of touching with any real depth. I'll just say that I've become significantly more pro assisted-suicide since this experience. I do think there are settings where the person has truly exhausted everything, read every article, tried every antidepressant, had a therapist, had multiple doctors map out the path forward, years and year and years have gone by, they've followed the drug pipelines, and the suicide is no longer on them. Just like people's bodies can fail from heart failure or cancer, their brains can fail from torture.

I've used the following paradox for myself. If there was a button that I could press to die and end the torture, I almost surely wouldn't press it, but knowing that it's there would give me the strength to keep going and reduce my chances of suicide from any cause. I think people hide with torture. This is not your fault in any way whatsoever, but I don't think suicide is talked about correctly in the mainstream. It's not on loved ones and it's not on the sufferer. It's a medical problem that I wish was framed differently. Like heart failure.

Suicidal people often struggle from a cycle of low self esteem. I love your attitude about praising people who keep going. This is another reason why I wish suicide was pushed to a medically assisted setting so that the person could develop positive feelings about fighting, kind of like my button paradox. Self esteem is so important.

No one wants to touch this topic from the perspective of a "teams of doctors" form of euthanasia because it gets messy in different ways.

Anyways, you're such a good dude and I believe you have the strength to keep living. Your contributions are a prize for the tinnitus community.

 

[shelbynn]

@roy1159, just to add that some people who got severe tinnitus have experienced other neurological symptoms later (for example I have visual snow and tremors but they are nothing compared to tinnitus, while other people got more serious conditions). There is not enough science but one might suspect that the disruption caused by tinnitus on the brain and brain filters propagates and triggers other conditions. That is to say that treating tinnitus (FX-322) might bring about improvement or remission of other symptoms. I personally can live with my visual snow, floaters and tremors, it's the tinnitus that is killing me. I hope we both find the strength to try FX-322. I'm not clear on the timeline on compassionate/extended use in case March results are positive but I hope it's only a couple years away.

I thought I was crazy... I recently have been dealing with floaters and tremors in my non dominant hand...

 

[AliasM]

Zigzag, I too have changed my mind on the issue. The tortured and tormented shouldn't have to drive cars full speed into trees or jump in front of trains, or risk significantly worsened disability, while only the terminal are offered the option of dying with dignity — quickly, pain free and absolute.

It is cruel.

I have 3 friends who have died awful painful self inflicted deaths with housemates and family left to find their remains. There should have been a more humane option available without question or judgement.

We are a million years away though. My state doesn't even have euthenasia. Politicians are still debating with the damn churches whether or not the almost dead already should be allowed to die with dignity.

 

[Chinmoku]

I thought I was crazy... I recently have been dealing with floaters and tremors in my non dominant hand...

You are not crazy, it's the amount of disruption this shit of a condition brings in our brain and nervous system. I hope that once the condition is dealt with other symptoms may become less noticeable or go into remission. FX-322 is my last hope if I can make it that far. Typing this at 4 AM because with this insane electric screaming it's hard to sleep.

 

[roy1159]

My dad committed suicide a year ago and the more I look into the science of my condition, the more I realise I am here because of the post-traumatic stress and trauma that incident gave me. I'm sorry for what you're going through and I don't have answers for you, but I just want to say something not for your sake, but for those who you will leave behind: taking your own life will not mean that your problems will die with you. They will simply be passed on to someone else and they will then have to deal with demons for their rest of their lives that they never asked for, including stress-induced physical health problems.

I hope this doesn't sound insensitive, but if you can't fight for yourself, fight for someone else. This forum is a fountain of knowledge full of people of anecdotal cases who have tried different things, some with more success than others. If you're going to end things at least exhaust every other option first. Try different medications, stack up on supplements, try some novel surgery or whatever the hell it might be. Give yourself a chance before you pull the plug.

I say all this because my father, whom I loved dearly, destroyed my life with the decision he made. I didn't just lose my dad: I lost my health, my career and my home. Please do not do that to someone else.

I'm sorry for your loss. I agree with everything you said but at the same time i feel it's my only choice. I tried everything in the book only for things to get worse and for physical problems some debillitating to occur out of nowhere for no good reason that explains them. I know it's egotistical to do that but I wish I had another choice, I really do.

I don't want to take my life, but i just want the suffering to stop. I wish there was some sort of help let alone treatments or cures. I'm at a point where there is no point in suffering, besides that my parents don't want to deal with this anymore although I know they mean well and if I were them I wouldn't want to deal with someone else close to me that was going through this as everything they tried in order to help me better my situation failed.

I never asked for all of this as well, I really really wish there were other choices for me out there. When I leave this hell I can at least know that I've tried everything in order to get better and in the end it's not a choice I made but was forced to (as much as it sounds like im shifting the blame but that's my view of it).

 

[Aaron91]

I'm sorry for your loss. I agree with everything you said but at the same time i feel it's my only choice. I tried everything in the book only for things to get worse and for physical problems some debillitating to occur out of nowhere for no good reason that explains them. I know it's egotistical to do that but I wish I had another choice, I really do.

I don't want to take my life, but i just want the suffering to stop. I wish there was some sort of help let alone treatments or cures. I'm at a point where there is no point in suffering, besides that my parents don't want to deal with this anymore although I know they mean well and if I were them I wouldn't want to deal with someone else close to me that was going through this as everything they tried in order to help me better my situation failed.

I never asked for all of this as well, I really really wish there were other choices for me out there. When I leave this hell I can at least know that I've tried everything in order to get better and in the end it's not a choice I made but was forced to (as much as it sounds like im shifting the blame but that's my view of it).

It's easy to fall into a victim mentality. I would know because I had it in the early stages of my catastrophic hyperacusis and I also saw it in my dad. I still have it, to some extent. I know people have mixed views about him, but Jordan Peterson is right when he says life is suffering. This thing isn't supposed to be fucking easy and for some of us it is god damn harder than others. None of us here asked for what we're each individually going through. Do you know how I get through each day? Knowing that there are other members on here worse than I am who are still managing to get through it.

After reading your post, I decided to go through your post history. It seems to me you have chronic tinnitus, hyperacusis and some kind of distortion issue (which usually goes hand in hand with hyperacusis). You've had an ABR, MRI and CT brain scan, all showing nothing, suggesting then that the issue may be peripheral. Your post history suggests you've tried one drug ONLY and no other supplement. Is that true? If so, I don't really count that as trying everything.

You've also said you have other health issues but haven't said what they are. It could be very useful to members here if you explained what those are. You also seem to be giving too much credit to your doctors: "my doctors can't help me, so I'm just going to give up". If you read enough, you would know that doctors are far behind the research curve. So on that note, please tell me what medical journals you've read. I don't say this in a patronising way, but sometimes it can really help someone's mental state if they can understand what may be going on from a pathology point of view, even if there's no current cure or treatment.

Please make a list of every drug and supplement you've tried. There are many that have helped others on here.

Please tell me what surgical options you've explored. For hyperacusis, the Silverstein surgery now has an 80% success rate.

Please tell me what other diagnostic options you've explored. You said you had an MRI for your brain. Did you have one for an acoustic neuroma?

Please tell me what alternative medicine you've tried.

Please tell me what medical journals you've read. Please tell me your current understanding of hyperacusis pathology.

Please tell me how many threads you've been through exploring what has helped others.

I see so many people on here who just say "the doctors can't help me, I give up", as if to say that just because a doctor can't help, nobody can. Do you know how many other diseases and conditions are out there that doctors can't treat? People have to resort to helping themselves all the time. Just because doctors don't have an answer for you doesn't mean there isn't an answer to be found. For example, if you speak to any ENT or audiologist about type II afferent fibre sensitisation theory due to OHC ATP leakage, they will give you a blank stare, and yet this model is becoming largely accepted in the research community as a model for at least some types of hyperacusis.

Let me put it this way to you. Let's say there is some kind of afterlife, but which isn't as good as life is here. What if you found out there that there was some information out there that had you stumbled across, it would have changed or at least improved your condition enough to give you some degree of normality? I bet you'd regret it.

Edit: One other thing. I can already see you downplaying the effect your suicide would have on your parents, as if they would be better off. Who are you to gatekeep the effect this would have on your parents? I can tell you from now they would be devastated. You don't believe me? My dad's mother died a week after my dad took his own life. I urge you to think again.

 

[Chinmoku]

I'm sorry for your loss. This is a deeply complicated topic that I have no intention of touching with any real depth. I'll just say that I've become significantly more pro assisted-suicide since this experience. I do think there are settings where the person has truly exhausted everything, read every article, tried every antidepressant, had a therapist, had multiple doctors map out the path forward, years and year and years have gone by, they've followed the drug pipelines, and the suicide is no longer on them. Just like people's bodies can fail from heart failure or cancer, their brains can fail from torture.

This spoke to me, unfortunately I have been feeling like this lately.

@Aaron91 is a hero, I don't know how he manages to keep going, and he is trying to help other people too. I have two kids so I keep telling myself I need to hang on but I worsen weekly and now I reached a point where every hour I writhe in agony. I can't find a single thing to help me or even give me five minutes of pause. Anything. This is becoming impossible. On top of that my wife is divorcing me and I'm try to hang on for my kids but I really feel like I have already given up deep inside, this amount of suffering is impossible. Maybe I'm a weak man, I see people here who keep going against impossible odds. I can't say I have tried everything, I haven't tried stem cells, I haven't tried laser therapy, but I tried so many other things, to no avail, the worsening continued regardless of what I did or didn't do. Like a press pushing you into a wall where space gets less and less. I used to have at least a couple hours a day of slight relief, now I don't even have that. What does one do in these situations? It's impossible to keep fighting indefinitely. As you say, at some point it's not even your decision anymore.

I have only admiration for you, for @Aaron91 and everyone else in this thread who keep fighting, I read so many stories of valiant people who keep fighting here. I just don't know how to go on at this rate of worsening, it looks already impossible now.

 

[Zugzug]

It's easy to fall into a victim mentality. I would know because I had it in the early stages of my catastrophic hyperacusis and I also saw it in my dad. I still have it, to some extent. I know people have mixed views about him, but Jordan Peterson is right when he says life is suffering. This thing isn't supposed to be fucking easy and for some of us it is god damn harder than others. None of us here asked for what we're each individually going through. Do you know how I get through each day? Knowing that there are other members on here worse than I am who are still managing to get through it.

After reading your post, I decided to go through your post history. It seems to me you have chronic tinnitus, hyperacusis and some kind of distortion issue (which usually goes hand in hand with hyperacusis). You've had an ABR, MRI and CT brain scan, all showing nothing, suggesting then that the issue may be peripheral. Your post history suggests you've tried one drug ONLY and no other supplement. Is that true? If so, I don't really count that as trying everything.

You've also said you have other health issues but haven't said what they are. It could be very useful to members here if you explained what those are. You also seem to be giving too much credit to your doctors: "my doctors can't help me, so I'm just going to give up". If you read enough, you would know that doctors are far behind the research curve. So on that note, please tell me what medical journals you've read. I don't say this in a patronising way, but sometimes it can really help someone's mental state if they can understand what may be going on from a pathology point of view, even if there's no current cure or treatment.

Please make a list of every drug and supplement you've tried. There are many that have helped others on here.

Please tell me what surgical options you've explored. For hyperacusis, the Silverstein surgery now has an 80% success rate.

Please tell me what other diagnostic options you've explored. You said you had an MRI for your brain. Did you have one for an acoustic neuroma?

Please tell me what alternative medicine you've tried.

Please tell me what medical journals you've read. Please tell me your current understanding of hyperacusis pathology.

Please tell me how many threads you've been through exploring what has helped others.

I see so many people on here who just say "the doctors can't help me, I give up", as if to say that just because a doctor can't help, nobody can. Do you know how many other diseases and conditions are out there that doctors can't treat? People have to resort to helping themselves all the time. Just because doctors don't have an answer for you doesn't mean there isn't an answer to be found. For example, if you speak to any ENT or audiologist about type II afferent fibre sensitisation theory due to OHC ATP leakage, they will give you a blank stare, and yet this model is becoming largely accepted in the research community as a model for at least some types of hyperacusis.

Let me put it this way to you. Let's say there is some kind of afterlife, but which isn't as good as life is here. What if you found out there that there was some information out there that had you stumbled across, it would have changed or at least improved your condition enough to give you some degree of normality? I bet you'd regret it.

Edit: One other thing. I can already see you downplaying the effect your suicide would have on your parents, as if they would be better off. Who are you to gatekeep the effect this would have on your parents? I can tell you from now they would be devastated. You don't believe me? My dad's mother died a week after my dad took his own life. I urge you to think again.

Thank you for this. After I made my last post, I wondered if I am trusting people in a bad state of mind too much. I stand by my viewpoints of assisted suicide, but I think it takes a lot. Most people in this thread (including myself) have not really tried everything and have not really given it enough time. I just want to make that position clear.

Your line about your dad's mother dying a week after your dad died is chilling to me. I know this could happen to my mom if I took my life, or least she could have a major medical emergency.

It's just unfair to everyone. It's unfair to suffer and be disabled. It's unfair that it gets pushed onto loved ones. It's unfair that the original sufferer gets blamed for this. And the crazy thing is that this is the world of hyperacusis and severe cases of tinnitus, yet in the medical world, it's viewed with less empathy than a head cold.

This is a really sad thing to say, but it's the truth. The patients are the experts on sensorineural hyperacusis. It's just that simple. Even Bryan Pollard was/is a hyperacusis patient.

 

[Zugzug]

@Aaron91 is a hero, I don't know how he manages to keep going, and he is trying to help other people too. I have two kids so I keep telling myself I need to hang on but I worsen weekly and now I reached a point where every hour I writhe in agony. I can't find a single thing to help me or even give me five minutes of pause. Anything. This is becoming impossible. On top of that my wife is divorcing me and I'm try to hang on for my kids but I really feel like I have already given up deep inside, this amount of suffering is impossible. Maybe I'm a weak man, I see people here who keep going against impossible odds. I can't say I have tried everything, I haven't tried stem cells, I haven't tried laser therapy, but I tried so many other things, to no avail, the worsening continued regardless of what I did or didn't do. Like a press pushing you into a wall where space gets less and less. I used to have at least a couple hours a day of slight relief, now I don't even have that. What does one do in these situations? It's impossible to keep fighting indefinitely. As you say, at some point it's not even your decision anymore.

I feel such a connection to your situation. Although we may have different medical issues, something we both share that is pretty uncommon, is an unexplained, progressive worsening. To be clear, even if worsening is explained (e.g. loud noise trauma), that doesn't mean the suffering isn't just as real.

But I feel like you and I are just dumbfounded about what the hell is going on. I may get a diagnosis soon, but so what? Okay, great, I find out it's what I think it is. Still no cure. Still a double whammy. All I know is my problem runs deeper than even regenerative medicine. This is why all of my hope is on it progressing to deafness, which is still a really horrific life. There's simply no way, and I know as a mathematician, that the probability of it "going away" and healing from the regenerative medicine is anything to dream about. My path forward is through it progressing in a way that's a little less disabling.

Motivation is hard. It really is. It's why I suffer from low self esteem. I am largely living to just not be a POS to my loved ones. Also, if I'm being honest, I've long passed the threshold of living out of strength. I'm afraid of suicide, which is another source of low self esteem and a lack of empowerment.

 

[Chinmoku]

It is the worst, @Zugzug, as it robs us of any kind of hope. Enduring the incessant worsening torture and having no hope is impossible. We have very little if anything to hold onto. We can only hope in some unexpected insight or solution, but it looks more and more like a zero measure set

 

[FGG]

I'm sorry for your loss. This is a deeply complicated topic that I have no intention of touching with any real depth. I'll just say that I've become significantly more pro assisted-suicide since this experience. I do think there are settings where the person has truly exhausted everything, read every article, tried every antidepressant, had a therapist, had multiple doctors map out the path forward, years and year and years have gone by, they've followed the drug pipelines, and the suicide is no longer on them. Just like people's bodies can fail from heart failure or cancer, their brains can fail from torture.

I've used the following paradox for myself. If there was a button that I could press to die and end the torture, I almost surely wouldn't press it, but knowing that it's there would give me the strength to keep going and reduce my chances of suicide from any cause. I think people hide with torture. This is not your fault in any way whatsoever, but I don't think suicide is talked about correctly in the mainstream. It's not on loved ones and it's not on the sufferer. It's a medical problem that I wish was framed differently. Like heart failure.

Suicidal people often struggle from a cycle of low self esteem. I love your attitude about praising people who keep going. This is another reason why I wish suicide was pushed to a medically assisted setting so that the person could develop positive feelings about fighting, kind of like my button paradox. Self esteem is so important.

No one wants to touch this topic from the perspective of a "teams of doctors" form of euthanasia because it gets messy in different ways.

Anyways, you're such a good dude and I believe you have the strength to keep living. Your contributions are a prize for the tinnitus community.

I am a strong proponent of medically assisted suicide. I think it prevents more impulsive suicide and gives sufferers the comfort of knowing there is a way out if the suffering becomes too unbearable.

Since the assisted suicide process is long, it also gives time to reflect in a more rationale way and plan and discuss it with family/friends. The sudden grief and the survivor's guilt about not being able to stop it contributes to the degree of emotional pain in a way that a more peaceful, planned event might not.

No doubt 15 years as a veterinarian influences my thoughts on this, but I can safely say sometimes ending suffering really is the right choice. There is a saying in the field, though, that the longer someone is a vet the less they encourage the non terminal cases and it's true (a big part is because treatments get better as time goes on).

That being said, a lot of people who commit suicide don't exhaust all of their mental and medical options before that point and I can't say that someone will not make the wrong choice. Of course it should be a last resort. Not the least of which is because of the devastating effects on those left behind.

@Aaron91, I'm so sorry you had to lose your father that way. I admire that you are trying to pull through emotionally in healthy ways but there is obviously a lot of pain there and I just wanted to give you an e-hug.

 

[100Hz]

I have had so many thoughts of suicide over the last 4 years and not just suicide but fear that I'm dying anyway, my health seems to be collapsing in on me and I might not even need to commit suicide. That goes full circle and scares me though because in reality I don't want to die, I want to live and I'm ready to live given the chance. And I want my body to be healthy in case a cure ever comes along. I think a next level of cruelty would be to survive and treat tinnitus and hyperacusis only to die of something else shortly after.

I hang on for the days of strong hope. I had one today, I was watching something random on YouTube (not health related, just current affairs) and the speakers were just giving me hope to be able to be confident like them again one day, do things like want to buy and wear clothes that make me feel good again one day, getting involved with living in and contributing to society again one day. These days are good and worth living for-the true essence of hope. The days that are full of pain, fear, and resentment are shit and frequent but the days of hope are just about enough to cling onto. I could never do it to my family anyway. If all I am ever meant to be now is as (useful?) as I can be to family just by even being alive yet living in a virtual torture chamber then so be it, I rather it be me than them.

I really do feel for everyone suffering on here.

 

[tpj]

In regards to suicide and the impact on family members. It always seems to be what a horrible thing you're doing and how could you do that to your family. But where is the understanding and compassion from family members? My mother has terrible arthritis which thankfully for now, is somewhat controlled. But if things worsened and nothing helped, I wouldn't blame her one bit if she ended it all. I've seen how much pain she can be in. I also strongly agree with medically assisted suicide.

 

[Zugzug]

I have had so many thoughts of suicide over the last 4 years and not just suicide but fear that I'm dying anyway, my health seems to be collapsing in on me and I might not even need to commit suicide. That goes full circle and scares me though because in reality I don't want to die, I want to live and I'm ready to live given the chance. And I want my body to be healthy in case a cure ever comes along. I think a next level of cruelty would be to survive and treat tinnitus and hyperacusis only to die of something else shortly after.

I'm sorry for your suffering. From reading your post and others, I have gathered that a number of sufferers have multiple health problems. It's devastating.

Your last line about surviving hyperacusis only to not be rewarded gives me chills. I don't talk about the details much on here because it's a hearing forum, but it's really discouraging that my reward for battling chronic pain for years was this. In my mind, I thought it couldn't get any worse, but it did.

Even with this hyperacusis journey, I always think it can't get worse and it does. Even if my disease eventually leaves my ears, is that really a good thing? Does it spread to my one kidney? Does it spread to my brain?

Add that to the big pile of reasons why fighting is demotivating. It's all just suffering.

 

[100Hz]

I'm sorry for your suffering. From reading your post and others, I have gathered that a number of sufferers have multiple health problems. It's devastating.

Your last line about surviving hyperacusis only to not be rewarded gives me chills. I don't talk about the details much on here because it's a hearing forum, but it's really discouraging that my reward for battling chronic pain for years was this. In my mind, I thought it couldn't get any worse, but it did.

Even with this hyperacusis journey, I always think it can't get worse and it does. Even if my disease eventually leaves my ears, is that really a good thing? Does it spread to my one kidney? Does it spread to my brain?

Add that to the big pile of reasons why fighting is demotivating. It's all just suffering.

I've read a lot of your posts lately and really feel for you. A concern I've always had is the thought of having even more problems on my plate in addition to the hearing issues. Other life problems do pop up and either last a while, get dealt with however slowly, resolved, or just accepted etc. but none of them are as big a problem as tinnitus and noxacusis but they do add further pressure. Then when batches of problems get eventually sorted out as they do I can still never feel any relief anyway as that one, huge problem still remains (like deckchairs on the Titanic basically). Something I am hopeful for is that if our ears can be fixed, a lot of what left over will just fall into place and most of what life ever throws at us in the future will seems so trivial in comparison.

 

[Born To Slay]

In regards to suicide and the impact on family members. It always seems to be what a horrible thing you're doing and how could you do that to your family. But where is the understanding and compassion from family members? My mother has terrible arthritis which thankfully for now, is somewhat controlled. But if things worsened and nothing helped, I wouldn't blame her one bit if she ended it all. I've seen how much pain she can be in. I also strongly agree with medically assisted suicide.

I've always felt this way. It's not the suicidal who are selfish, it's the people who want to force them to live for their benefit that are selfish.

 

[AliasM]

I don't want to die. I adore my husband and kids (ages 2, 9, 12 and 15). They are my life, but I am so caught up in my distress, pain, and trauma, I don't want to live. I can't spend another day like this. Yesterday I stupidly let an ENT microsuction my left ear and now it is fluttering and painful. I did not have hyperacusis or pain in this ear, just my right ear. Now I am afraid I will get in that ear, and I know I need to control my anxiety or else I will, but I can't. I am shaking and crying. He assured me it was extremely quiet. It wasn't. He just wanted the $240 he charged me to do it. Highway robbery and I feel used.

Life is just too hard. The squealing in my ears is so high pitch today it hurts. A solid single tone squeal a higher pitch than anything I have ever heard in nature. Yesterday's hiss was better. Every day is different. I just want death to cone to me quickly and peacefully. I don't want to do it myself. I'd mess it up, end up more disabled, and I don't actually want to die, I just want my life back. I am wishing for cancer and I would opt out of treatment.

I have read the success stories and feel more depressed. So many of them, if you look at their post history, actually come back to the forum after posting their success story, spiked, worse, distressed or the calm was temporary before the storm.

Is there a light at the end of the tunnel for me? I am 3 months in with no improvements at all. Please someone give me hope.

I have just taken a Xanax which I use sparingly because I don't want to damage my brain more with that shit but really I need it.

 

[roy1159]

It's easy to fall into a victim mentality. I would know because I had it in the early stages of my catastrophic hyperacusis and I also saw it in my dad. I still have it, to some extent. I know people have mixed views about him, but Jordan Peterson is right when he says life is suffering. This thing isn't supposed to be fucking easy and for some of us it is god damn harder than others. None of us here asked for what we're each individually going through. Do you know how I get through each day? Knowing that there are other members on here worse than I am who are still managing to get through it.

After reading your post, I decided to go through your post history. It seems to me you have chronic tinnitus, hyperacusis and some kind of distortion issue (which usually goes hand in hand with hyperacusis). You've had an ABR, MRI and CT brain scan, all showing nothing, suggesting then that the issue may be peripheral. Your post history suggests you've tried one drug ONLY and no other supplement. Is that true? If so, I don't really count that as trying everything.

You've also said you have other health issues but haven't said what they are. It could be very useful to members here if you explained what those are. You also seem to be giving too much credit to your doctors: "my doctors can't help me, so I'm just going to give up". If you read enough, you would know that doctors are far behind the research curve. So on that note, please tell me what medical journals you've read. I don't say this in a patronising way, but sometimes it can really help someone's mental state if they can understand what may be going on from a pathology point of view, even if there's no current cure or treatment.

Please make a list of every drug and supplement you've tried. There are many that have helped others on here.

Please tell me what surgical options you've explored. For hyperacusis, the Silverstein surgery now has an 80% success rate.

Please tell me what other diagnostic options you've explored. You said you had an MRI for your brain. Did you have one for an acoustic neuroma?

Please tell me what alternative medicine you've tried.

Please tell me what medical journals you've read. Please tell me your current understanding of hyperacusis pathology.

Please tell me how many threads you've been through exploring what has helped others.

I see so many people on here who just say "the doctors can't help me, I give up", as if to say that just because a doctor can't help, nobody can. Do you know how many other diseases and conditions are out there that doctors can't treat? People have to resort to helping themselves all the time. Just because doctors don't have an answer for you doesn't mean there isn't an answer to be found. For example, if you speak to any ENT or audiologist about type II afferent fibre sensitisation theory due to OHC ATP leakage, they will give you a blank stare, and yet this model is becoming largely accepted in the research community as a model for at least some types of hyperacusis.

Let me put it this way to you. Let's say there is some kind of afterlife, but which isn't as good as life is here. What if you found out there that there was some information out there that had you stumbled across, it would have changed or at least improved your condition enough to give you some degree of normality? I bet you'd regret it.

Edit: One other thing. I can already see you downplaying the effect your suicide would have on your parents, as if they would be better off. Who are you to gatekeep the effect this would have on your parents? I can tell you from now they would be devastated. You don't believe me? My dad's mother died a week after my dad took his own life. I urge you to think again.

I can't help but fall into the victim mentality as everything that happens to me up to now in the last 15 months doesn't add up. From the tinnitus that showed out of nowhere to the sudden inability to understand speech all the way to my new physical problems which involve nerve damage and may soon become chronic. There is suffering and then there is this hell, I know life shouldn't be pain free - it's not like before then I didn't have some problems as everyone have some, but when you have tried bettering the situation through self research and doctors and all you get is... Well you can go to therapy, you can't help but lose any hope there was left.

As for the theory of what's happened to me I guess tinnitus is because of the noise working in the café, I guess my ears are much more vulnerable than other people's ears.

As for the sudden inability to understand speech - probably hidden hearing loss (will conduct 8-16 kHz audiometry just to have some sense of the damage) which occurred when I continued to work there although I was with earplugs all the time and wasn't exposed to any noise besides working there. Again it doesn't make sense but it's the best I can come up with. I wish there was someone with similar problems (specifically the speech comprehension problems) so at least I can understand what went wrong and if I actually did this much damage (I didn't), as nothing comes up in the tests.

 

[Johan001]

I don't want to die. I adore my husband and kids (ages 2, 9, 12 and 15). They are my life, but I am so caught up in my distress, pain, and trauma, I don't want to live. I can't spend another day like this. Yesterday I stupidly let an ENT microsuction my left ear and now it is fluttering and painful. I did not have hyperacusis or pain in this ear, just my right ear. Now I am afraid I will get in that ear, and I know I need to control my anxiety or else I will, but I can't. I am shaking and crying. He assured me it was extremely quiet. It wasn't. He just wanted the $240 he charged me to do it. Highway robbery and I feel used.

Life is just too hard. The squealing in my ears is so high pitch today it hurts. A solid single tone squeal a higher pitch than anything I have ever heard in nature. Yesterday's hiss was better. Every day is different. I just want death to cone to me quickly and peacefully. I don't want to do it myself. I'd mess it up, end up more disabled, and I don't actually want to die, I just want my life back. I am wishing for cancer and I would opt out of treatment.

I have read the success stories and feel more depressed. So many of them, if you look at their post history, actually come back to the forum after posting their success story, spiked, worse, distressed or the calm was temporary before the storm.

Is there a light at the end of the tunnel for me? I am 3 months in with no improvements at all. Please someone give me hope.

I have just taken a Xanax which I use sparingly because I don't want to damage my brain more with that shit but really I need it.

It's heartbreaking to read your story, yet I firmly believe that there's a hope for all of us. We just need to find what works for each of us. So many strong people on here have gone through this and came out on the other side.

I've been suicidal for the first maybe 6 months. By suicidal I mean, trying to hang myself on a doorknob a number of times. One day I seriously bought a rope from a hardware store, was trying it around my neck a few times until one day I went a bit too far. I quickly took it off and nearly passed out - that's when I realised that I just can't do it. It was like a little switch. It was really scary. I also looked into euthanasia (I'm from the Netherlands). I was never suicidal before tinnitus and had no mental health issues apart from mild OCD, which I managed by just ignoring it.

Looking back at it, my abusive relationship at that time (direct cause of my tinnitus) was a major factor. When I broke away from it, I started to see tiny changes.

I'm still struggling massively, grieving every hour, but I'm grateful that I'm not suicidal anymore. I'm seriously looking at habituated people and I now really want to get to that level.

Why am I saying this? Just to ask you to give yourself time. You may lose a few months or years of your life until you habituate. If you choose suicide now, you'll loose everything. As long as we live we can change something about our situation.

 

[FGG]

I can't help but fall into the victim mentality as everything that happens to me up to now in the last 15 months doesn't add up. From the tinnitus that showed out of nowhere to the sudden inability to understand speech all the way to my new physical problems which involve nerve damage and may soon become chronic. There is suffering and then there is this hell, I know life shouldn't be pain free - it's not like before then I didn't have some problems as everyone have some, but when you have tried bettering the situation through self research and doctors and all you get is... Well you can go to therapy, you can't help but lose any hope there was left.

As for the theory of what's happened to me I guess tinnitus is because of the noise working in the café, I guess my ears are much more vulnerable than other people's ears.

As for the sudden inability to understand speech - probably hidden hearing loss (will conduct 8-16 kHz audiometry just to have some sense of the damage) which occurred when I continued to work there although I was with earplugs all the time and wasn't exposed to any noise besides working there. Again it doesn't make sense but it's the best I can come up with. I wish there was someone with similar problems (specifically the speech comprehension problems) so at least I can understand what went wrong and if I actually did this much damage (I didn't), as nothing comes up in the tests.

As I have mentioned, my speech comprehension problems seem similar to yours for what it's worth (struggle a lot with recorded audio--though maybe not quite to the same extent--but not in person conversation). I don't see many people on the forum with that problem, and it has discouraged me plenty of times too (still does).

Forgot to mention in my last post, too, that my "speech in noise" test also came back normal.

I highly suspect that, like me, you are going to have a very abnormal extended audiogram. Speaker quality seems to make a slight difference to me, too. For instance, using a Bose Sound Bar in front of the TV allows me to catch more words than I would otherwise.

Take Magnesium for nerve stuff (especially liquid even though it tastes horrible) if you aren't already. It can help.

 

[Zugzug]

As I have mentioned, my speech comprehension problems seem similar to yours for what it's worth (struggle a lot with recorded audio--though maybe not quite to the same extent--but not in person conversation). I don't see many people on the forum with that problem, and it has discouraged me plenty of times too (still does).

Forgot to mention in my last post, too, that my "speech in noise" test also came back normal.

I highly suspect that, like me, you are going to have a very abnormal extended audiogram. Speaker quality seems to make a slight difference to me, too. For instance, using a Bose Sound Bar in front of the TV allows me to catch more words than I would otherwise.

Take Magnesium for nerve stuff (especially liquid even though it tastes horrible) if you aren't already. It can help.

This comment is for @roy1159 as well.

Have either of you tried like equalizers or equalizer apps on the computer? My hyperacusis is worsened by high frequency noises so when I was doing sound therapy, I downloaded "Audio Equalizer" to turn down certain frequencies. Attached is a screenshot of the basic interface.

I realize that most of the work needs to be done on the actual speaker, not just an app, but I'm curious if these help or not.

 

[FGG]

This comment is for @roy1159 as well.

Have either of you tried like equalizers or equalizer apps on the computer? My hyperacusis is worsened by high frequency noises so when I was doing sound therapy, I downloaded "Audio Equalizer" to turn down certain frequencies. Attached is a screenshot of the basic interface.

View attachment 43859

I realize that most of the work needs to be done on the actual speaker, not just an app, but I'm curious if these help or not.

Thanks for the suggestion. In my case, I think if my losses were less significant, it might help. I have actually tried this. Raising or lowering the high end doesn't seem to help (I can't hear it either way) and raising the bass just makes it sound more muddy. I do slightly better with bassy speakers on the regular settings but my ears are (hopefully temporarily) really sensitive to any artificial audio atm.

 

[Zugzug]

Thanks for the suggestion. In my case, I think if my losses were less significant, it might help. I have actually tried this. Raising or lowering the high end doesn't seem to help (I can't hear it either way) and raising the bass just makes it sound more muddy. I do slightly better with bassy speakers on the regular settings but my ears are (hopefully temporarily) really sensitive to any artificial audio atm.

I figured. IIRC, you have profound losses in the far end of low and high. One would probably have to make an awkward sound with an app like this. It must be difficult because hyperacusis makes loud sounds unstable and dangerous, but you also need loud volume to cover the profound range.

It just made me wonder, because your Speech-in-noise tests are normal and you say conversations are generally better. I would think there would be some way to mix sound to help with speech.