Suicidal

Bro, have you seen a hyperacusis case that has recovered from not being able to drive, to being able to live a normal life? How long did this take?

I've been in this hellscape for a year and a half and I'm running out of patience and am losing my mind the isolation.

I was doing better in March, I don't know what happened. I guess I tried to drive a couple of times and that messed me up.

Another distressing part about this is I have a bunch of daily changing tones, which does not bother me too much, but my right ear has a pre-existing tone that has blown up since I got hyperacusis. I get pain free the tones go back down but the hyperacusis is just so sensitive.

I guess I'm just wondering who you have seen recovered from something like this and how long did it take them?

 

@AnthonyMcDonald and @weab00 were the worst cases I ever encountered, who later saw massive stabilisation and complete remission.

@AnthonyMcDonald, especially. That is to say, if you had asked me last year, where I thought he would be now, I would genuinely have struggled to come up with anything other than his account becoming inactive, and perhaps if we were "lucky", getting one of those posts from a random member confirming an an-hero, later down the line. What I certainly would not have predicted: was a flight, followed by a week long holiday in Cuba.

Then there's me, @ZFire and @chinup, who share pretty similar cases. While I doubt any of us had hyperacusis quite as severe as yours, between 2009 and 2011, I couldn't watch TV or hold a conversation with even one person, without hearing protection on; so severe, all the same.

That's no longer the case for me now, and @ZFire and @chinup also, have both reported significant improvement. @ZFire has even written a success story sharing of his improvement over the last two years.

So there are four I can be sure of. Unfortunately it's hard for me to give you a plethora of accounts, because in the space of fourteen years, individual stories start becoming hazy and just sort of merge together. But on the flip side of that same issue, I can confidently say I've noticed a trend; similar to how I came to the conclusion tinnitus tended to be worse in the left ear.

Following that trend were two young girls I spoke with who joined the forum both this year and last year. Like most people new to tinnitus and hyperacusis, they had problematic hyperacusis, that later diminished. I realise that for them, youth played a massive part in their rapid improvement, but the emphasis there should be on rapid; people in their later years should still see improvement, just it will theoretically be a lot slower than for someone in their teen years.

Additionally there are the people who attributed a decrease in hyperacusis to a medication or supplement. Personally, I wonder about cases like these, and question if it wasn't just time that did the trick, like with people who undergo, and later credit, CBT and/or TRT for their recovery.

Of course, I'm aware of the cases of severe hyperacusis/noxacusis that haven't gotten any better, like @Brian Newman's. So realistically, I cannot say things always improve. But it would be crazy to make an exit before something like XEN-1101 is available, given that so many people saw improvements (albeit alongside nasty side-effects) with Trobalt (2014-2017).

Basically, what I've noticed (including based on my own experience) is that natural recovery from hyperacusis tends to be slow, but actually occurs (unlike with tinnitus) for most. It can take years, but in that time there might be some sh*t that really does help, also. So it's definitely worth sticking around (imo).

 

Hi @BrysonKingMe, following on to what @Damocles posted.

When my hypercusis was at its worst, I could not speak. I could only converse with somebody if they whispered. A fork on a plate was pure anguish. I only went out at odd times when nobody was about. I wore Peltor earmuffs a lot. It was total agony, I had suicidal thoughts often and was a complete mess.

Magnesium, garlic, fish, and time helped me. Probably time.

My hyperacusis is in remission now and I remain vigilant about protecting myself. I'd say I have PTSD like many of us here.

Hyperacusis is ok now and tinnitus remains my daily struggle. Sometimes I forget about it and get distracted but it is always there and is quite loud and intrusive.

I am no longer suicidal and am generally happy to be alive. I wish this for you young brother!

Daniel

P.S. Just touched wood.

 

@Marin, @Vassili & @Vii experienced severe hyperacusis & recovered to a great degree.

In under 7 months, I myself have also gone from what I would term extreme hyperacusis (e.g., touching paper would cause burning in my ears) to being able to walk in a park for an extended period of time without earplugs. I still have a long way to go, but I share this to illustrate that even in severe cases, progress is possible. It does take an awfully long time, but it is possible. Sending healing thoughts your way!

 

Got to say, I'm new here but I can relate to the original poster. Never in my life have I ever felt the desire to end things until this year when my tinnitus became unbearable.

I have a very loud, very distracting hissing tone in my left ear that drives me absolutely nuts. It never stops or quietens down and has been relentless for around 3 months now. Completely killing any happiness I derived from doing things I enjoyed before the onset.

I suspect I have some hyperacusis as well as I tend to be much more intolerant to loud noises in my left ear where the vast portion of the tinnitus noise is. I can hear it in my right ear too but to a far lesser degree.

Hopefully we see something to treat this within in the next decade because never before have I felt as hopeless and isolated as I do now. Waved off by the ENT, waved off by the audiologist, even my family can't really give me the empathy I so desperately need as they simply can't relate or don't know how awful it is.

My tinnitus was brought on by a random incidence of SSHL in my left ear when I was ill. Which is really killing my hope that I will be able to be treated ever especially after the recent failures of Frequency Therapeutics as I'm guessing tinnitus would be a symptom of my hearing loss, albeit mild, and it would also explain why it's far louder in my left ear.

The struggle is real.

 

How long did this take you? Was your pain severe? Were you ever able to not drive?

 

Hi XiviaN,

I am sorry to read that you are suffering so much because of your tinnitus. I can empathize with you very well. In the last 20 years, I have had three very difficult situations where my tinnitus became very loud due to certain incidents. And right now, I am fighting against this tinnitus that I caught two weeks ago at a concert, despite using professional hearing protection.

What I want to tell you is that just like back then, I am completely devastated now and don't see any light at the end of the tunnel. Moreover, I can't sleep at all and lie awake in bed with a speaker playing masker sounds.

But when I look back on my other severe tinnitus experiences, I can say that each time I reached a point where I felt very good again, even though there were some very good and carefree years in between each downturn.

Nevertheless, I can't take it calmly right now because it bothers me too much and scares me. Still, I hope that time will help me (and all tinnitus sufferers) a lot. I managed to overcome it three times, so I should this time too. In my case, it took several months to overcome.

Can you sleep reasonably well?

 

I should have kept a log, my niece told me to, but I didn't. Looking back I would say 1 year of debilitating hyperacusis and then things started to shift for the better. It hurt and my right ear felt massive pain from nerve damage and hearing loss.

@Juan, who knows a lot about hyperacusis, mentioned eating salmon and garlic. I had soups with garlic, ginger and salmon and downed Magnesium when I could get some. I was not able to drive for about 6 months and then drove with earmuffs which is dangerous. I was like a rat, coming out at 4 am when things were quiet, avoiding noise and wore foam earplugs running simple errands. I have kids, I had to wear double protection, foam earplugs and earmuffs, with my youngest, which was heartbreaking.

I pushed through.

Something shifted and my hyperacusis mended itself. This may well happen for you too. If it doesn't, then call the Silverstein Institute in Sarasota, Florida, you may be a candidate for surgery.

Many people on this forum have had their hyperacusis get better in 1-1.5 years.

Don't overprotect inside, eat really well, and do anything under the sun to calm your nervous system down.

Exercise, sweat every day. Take hot baths, have massages. Head massage and massage around my ears - even inside my ear lobes - helped me. You must instruct the practitioner.

Love, if you can give it, and if you can get it given to you, everyday.

Bryson, I cried constantly and had my life turned upside down just like you. I am in such a better place now and am full of love and a full heart.

I am writing on my kids' tablet and people are distracting me as I write, so I hope I was able to help you. Everybody here is praying for you.

Love and hugs coming at you,
Daniel

 

What an age to live in, where you rather have any other disabillity or impairment but severe tinnitus and hearing problems. With no urgency withing the hearing field, how am I supposed to survive any longer?

Almost 4 years to get better, but only got worse. If there was a last ditch effort - and I wish there was - I would be the first to jump in, but there is not a single clinical study that I can enroll myself into, nor anything else to try either.

It is what it is, you can't function without hearing and severe tinnitus, let alone lead anything that resembles a normal life, and believe me, I have tried. I can only pretend that I have even 5% of the function I used to have.

This paragraph from the article "Loud Music and Leisure Noise Is a Common Cause of Chronic Hearing Loss, Tinnitus and Hyperacusis" sums the grim reality some of us deal with. This is the only description within a publication that truly describes the urgency that should be emulated and the disability these problems cause:

 

Hey tomytl! I'm hoping with all my heart that this tinnitus I have currently dies down or fades a little over time as it's an entirely different beast to any tinnitus (the ringing kind) I've experienced in my prior life which usually faded into the background once I'd become distracted enough and forgot to focus on it.

My sleep has been rather bad to be honest since the onset. Even last night I slept only 3 hours mostly due to being stuck in a state of fight or flight for the past 3 months or so. I've taken Clonazepam for awhile and it does help my sleep (can get a full night's sleep) but I'm very concerned about others who've used it and it exacerbated their tinnitus badly, so I've been trying to just wing it with white noise which is rough because my tinnitus is not really tonal so to speak, it's more of an electrical hissing static that jumps up and down in intensity every second. So most nights I also just lie awake with the white noise blaring away.

It's very difficult to find the strength to keep fighting some days when the first sound I hear when I wake up is this awful noise, but I have hope that we'll see some sort of treatment in the near future, this is the one thing that keeps me hanging in here.

 

Thank you Daniel, it is encouraging you recovered.

Every time I think the hyperacusis is gone, AKA I'm out of pain, I try and go do something and it comes back way worse.

This last time I drove 10 minutes on the highway and 10 minutes back and I have been in severe pain for over 2 weeks.

Yeah, I am really not doing good as I feel like I would have been in a much better place if I had just gradually exposed myself to sound. Now I'm worse than I was in February.

It's very isolating.

 

I understand, the Isolation is a massive bummer. I really feel for you and pray you'll be on the mend.

Consider the diet I mentioned and try and keep your spirit strong and hopeful.
Dr. Neil Nayak at the Silverstein Institute may be worth reaching out to, or anybody there, as they do specialize in hyperacusis and have apparently helped quite a few people.

Hopefully, time will heal your hyperacusis. Don't beat yourself up.

Since you live in the United States, get some NAC and Magnesium, these two things seem to help the inner ear.

Don't give up Bryson, just take one day at a time and when and if you have good news, please let us know.

Big Hug.
Peace.

 

Thanks Daniel.

 

This tinnitus and hearing loss journey has made my Christian journey very difficult. I understand that I ruined my body (ears) when it was already perfect, but please Lord give me a 2nd chance. I didn't know of the consequences. If the Lord is all good, then why can't I be healed. Why is there so much suffering in this world.

 

LMAO if Lord was good, would he have allowed for example @Allan1967 to suffer so much that he had to commit suicide and leave behind wife and young children, traumatized forever?

FUCK THE LORD!

 

You all can get better. Take your time. I understand it’s different for everyone but just over a year ago, I was in a terrible time and I am now not even paying attention to it.

I know how it feels to be in that complete despair mode. The biggest thing for me was getting back to sleep. Once I got that figured out, things really improved. The worst time for me was lying awake at night.

 

What do you do to get back to sleep? Please share. Thanks!

 

I sleep well now, only with occasional bad night. Last night I slept like 10.5 hours. 7 hours in, got up to the bathroom, drank some water, went back to sleep another 3.5 hours.

Taking nothing and not doing any "night routines", like avoiding screens, etc. Never needed those so at least that part of my life is back. Well, I'd not sleep 10 hours before, I'd get up after 7-8 hours... now I'd rather never wake up.

I guess sleep is highly individual. When I slept 2-3 hours a night in my 2nd/3rd month of tinnitus, it was a hell. Total sympathy for those who can't sleep. Pure hell.

 

You are welcome my friend and thank you too. We share the same struggle and very few people can understand our pain, trials, and suffering. We are family!

I am having a tough time right now as well, so I hope that we can both report soon that things are a little better.

Catch you later and take care,
Daniel

 

I'm sorry you are having a tough time, and I hope things get better for you.

 

You and me both <3 When it comes to tinnitus, I feel like you and I are two peas in a pod, so to speak. I'm sorry that your condition has worsened. I wish I could say mine was any different. Only thing keeping me alive is people I love. I sometimes pray. I don't know who I'm praying to. Sometimes it just feels like crying into the void. I desperately hope that it isn't a lot.

 

Thank you @BrysonKingMe.

 

21 F. I'm at my limit. I got tinnitus 3 years ago and my relationship with it was okay. However, 1 year ago I got a permanent spike, and multiple new tones for no clear reason, one of which sounds like morse code and makes me insane. A year later and I still can't accept it. I already had severe depression from the challenges of growing up neurodivergent. Now I can't even be depressed in peace...

I mean what is the point? If I live on, I get to miss out on loads of fun activities with my peers due to noise exposure risk. My life will always be mediocre at best, and I'll always live with the paranoia of my condition worsening again. I cope with the tinnitus by playing white noise and such, but I can't envision doing that for another 50 years or more. This is BS.

A year in and I am doing worse than ever psychologically. I've tried therapy and medication for years but my depression does not respond to treatment. Tinnitus is the nail in the coffin. I am 100% certain that if I could go out and live carefree right now, and listen to music on headphones and smoke some weed (spikes my tinnitus horribly), my depression wouldn't even be an issue. Unfortunately, not every story has a happy ending. I was a loner all through my school years and my 20s were supposed to be a time where I can leave all that misery in the past. Instead I am facing a far worse hell. I feel like I exist just to make other people feel better about their lives at this point.

Sorry for the negativity, but I am curious if anyone has ever felt THIS bad and come back from it. I literally feel like the devil has possessed me and is urging me to kill myself, like that is how bad this depression is... I've been struggling to survive most days since the spike, it fuels the depression which was already treatment resistant.

I have hopes and dreams, I dream of being in love and having amazing experiences... but unfortunately it is NOT looking like things are going to end well for me. The day to day is impossible.

 

I am in late 40s, I had a happy life, I have wonderful wife and children. Great career, job, good future professional prospects. Good money and savings. Fun hobbies, toys. Yet, I am in the similar spot like you. I don't believe I will be able to crawl out of that deep depression. 4.5 months since the trauma, 2.5 months since it got really bad, and it is getting worse. Mentally reaching new lows, severe tinnitus maybe stable (for) now, worsening hyperacusis. Hyperacusis is a true devil. Struggling to survive now.

The worry is about the loved ones. The harm this will do to them is unspeakable. Do you have loved ones, @Chk2.023? Parents at least maybe?

I don't know what's worse. I guess I had a good run and many happy years and memories. Should I be happy I had them? Yes. But it makes the loss so much profound. It's too early. It's too early in 20s, 30s, 40s, 50s, heck even in 60s. Maybe in 70s or 80s this would be palatable. Still would be terrifying.

I still can't wrap my head around it. From happy, wonderful life to suicidal in 2 months, basically.

 

Beside Dr. Shore's device, is there anything we can look forward to in the next couple of years? XEN1101?

 

I feel you on the neurodivergent bit. I recently got a new therapist and it was just the first appointment but when I detailed my struggles with my diagnosed ADHD and possible Autism and then told her that was barely scratching the surface of things I have had to struggle with my whole life or just things that have happened to me, she even had to admit that it was a lot. Thankfully she's had 40 years of therapy experience so she said she didn't think I was a challenge. That remains to be seen in my honest opinion.

I also have hope and dreams. Been back and forth with religion/spirituality/agnosticism/etc for the last 9 years. Still going back and forth. I think I'm just trying to find something/someone to hold onto but my brain can't wrap around a lot of things.

 

Good luck with your new therapist! It sounds like she recognizes your problem (which sounds very similar to mine so I definitely get it), which is a good start. I hope to one day find a therapist that gets it as well. Treatment just seems to get complicated when your issue is more multi-layered than anxiety/depression. Add a health condition like tinnitus and it's even more complicated. But people overcome incredible things so I think there's hope for us

 

I tell people how bad hyperacusis and reactive tinnitus can be, but they still don’t buy it — those who don’t have them, I mean. Ignorance is privilege, but when they’re bad-bad, these conditions don’t care who you are or what you’re about. They can make people and the world itself kryptonite, literally, where everything is off-limits — everything — as sound is everywhere. It’s built into the framework so intimately, so thoroughly, that it eradicates life when it becomes a torture device. Everything requires sound … every little thing. When every sound hurts or causes setbacks, you’re incompatible. On this planet, there aren’t many diseases that make the world itself and the people in it toxic allergies, where your condition gets worse if you don’t hide from them; where even protection offers no resolve, no cessation of the hell you’re fighting daily. That’s inhuman. That’s otherworldly. But the combination of hyperacusis and tinnitus are capable of that — the total, seismic destruction of everything — when they’re profoundly severe. You’re basically on the wrong planet.

But for some reason, they get no respect. People mock them or deny their existence, even though — in all seriousness — they’re some of the worst conditions in the world when they reach severe levels. Your quality-of-life goes to 1 or 2%. You can’t do anything without worsening; can’t even brush your teeth or shower without worsening; can’t be around people; can’t work; can’t even get disability rights because the world doesn’t buy it. You’re in a state of quicksand, fighting for your life. When they’re severe, it’s one of the absolute worst situations a person could ever find themselves in, no exaggeration. You’re treading on grounds that no mere mortal has ever seen before: displacement from reality; total abandonment from all corners, nooks and crannies, every angle possible. Your life is consigned to hiding. That’s all you can do. You’re playing hide-and-seek for the remainder of your days, but no one’s “it.” It’s just you, alone, playing with yourself ... a thing of hellish torture.

In life, I used to believe that paradoxes couldn’t happen, but I’m beginning to recant that. What we have here — in a raw, demented form — is a true paradox, one that stifles the very construct of creation. If you have hyperacusis or tinnitus, guard them with your life. Do everything you can NOT to worsen. Whatever you lose, you may never get it back. Don’t take any risks. If you do, you could meet the darkest shades or shadows that the human experience has to offer — total abandonment, where you lose your place on planet Earth; your sacred, precious life. This is my story; my downfall. Don’t be like me. If you have a livable life with mild or moderate symptoms, be happy (if you can). Don’t test fate. Let time be your hopeful healer. That’s the safest, most secure strategy. But trying therapies could potentially be your downfall, like it was for me. It can lead to a state of degeneration that has no end in sight, where you can’t climb out of it. I’ve talked to so many people who wish they could go back and change things, never trying anything.

Sadly, intervention can be bad with these diseases, even though that runs contrary to most diseases and logic. Usually, intervention is necessary for a disease. There’s nothing normal, logical, or human about severe tinnitus and hyperacusis, though. They’re on a different level. They defy the laws of nature. With hyperacusis and tinnitus, you can’t even trust the doctors usually. These unfortunate, perverse truths are not always true, though, which makes it even worse. Some people can genuinely find things that help, but there’s no way to know until you try, and for a lot of people I’ve talked to, trying was their downfall. So either possibility is relevant. But it’s tragic and sad that you’re forced to play Russian roulette to find out which is true for you. The shapeshifting qualities of hyperacusis and tinnitus make them unconscionable, and profoundly evil. Best thing to do is keep what you’ve got if you’re mild or moderate. Don’t gamble it. You can learn to be happy with time if you’re just mild or moderate, maybe even low severe.

EDIT:

If my above post was triggering to anyone, don’t be too worried about it. It’s just one of many possibilities. That’s the problem with hyperacusis. You can jaywalk and potentially end up in prison for life, like me, where you barely did anything and your crimes don’t fit the punishment, or you can commit murders and robberies and still bounce back. It’s all a game of chance or fate of circumstance, with so many uncertainties.

I’m a rare case. All I did was take Turmeric for 6 days at a normal dose and used 2 gels on my leg for an ulcer, and it made me go from mild to catastrophic (both tinnitus and hyperacusis). Most people do way more than me and recover decently or significantly, especially if it’s their first time getting these conditions. I’m only trying to warn people because they might be in the rare group who won’t recover, which is maybe 1/3 or 1/4 of people overall, based off my observations.

There’s a lot to be hopeful about unless you’re in the rare group. That’s why I say to let time do its thing first before trying anything (before intervening). I personally believe that a lot of people can recover from doing nothing and just waiting for the body to heal or recalibrate, like it often does with time when it comes to hyperacusis and even tinnitus. If it’s been several years and you haven’t improved, then maybe you could try stuff. But it’s always a risk. If you’re somewhat happy in life, then don’t try anything. Settle for less. A lot of people try stuff and get a lot worse and wish they could go back to their former level, which suddenly doesn’t seem so bad after they’ve met the new one.

 

Probably not a good omen for one of my first posts to be in this thread but here we are.

I had mild tinnitus for some 15 plus years but a recent testicular cancer diagnosis and the subsequent chemo have skyrocketed it. I got a new high-pitched ringing to my left ear that I can’t mask even in the shower, in there it sounds like lasers firing, and I still have one chemo cycle left to do.

If I had known this would happen, I would have just let myself die of the cancer. My quality of life is already fucked, and am inevitably going to end up on anti-anxiety medication. I know meds are risky as a tinnitus sufferer but I’m hanging on by a thread barely a month in.

 

Some of us, including myself to some extent, who suffer from suicide ideation on here seem to be saying they really suffer from not getting validation from others. This is not unique to severe tinnitus/hyperacusis. For example people who suffer from neuropathy, colitis, IBS, scoliosis, fibromyalgia, some brain injuries, severe depression also experience this as well since it's not physically noticeable to most people or they just can't relate to it personally. People who have never suffered with chronic pain in their lives & are not in the health profession really have a difficult time understanding & empathizing with others that do suffer. We have to accept this unfortunate fact of life, otherwise it can only contribute further to our decline in health & possibly prevent us from some recovery. A loved one should never question you about your suffering, unless they have some reason to based on your past. We need to surround ourselves with those who support us & trust what we tell them. We shouldn't have to convince anyone of our suffering, especially health professionals who for most part have little understanding about this condition. Because there is no real objective tests for this condition it puts an extra burden of evidence upon us. If your physician doesn't believe you, then give him/her a list of websites that explains this condition such as ATA & Tinnitus UK. Also a list of those on YouTube who suffer with this condition or a print out of some of comments on Tinnitus Talk.