Losing Myself — Considering an Exit Because of Unbearable Tinnitus

[another_person]

My tinnitus story. Trigger warning: assisted suicide.

Last year, I got a potential ear infection that caused tinnitus on my left side. I got medication to treat it, but during the treatment course, I got worried about having a brain tumor, since people online in Facebook groups said to watch out, given that sudden symptoms could be a sign.

It freaked me out. I got an MRI in which the ear protection wasn't in properly, causing ear damage and more tinnitus in my right ear.

I tried all the things that people said helped them, except that instead of helping or doing nothing, I developed a reactive central tinnitus, I assume from mixing supplements and a medication that hasn't gone away to this day.

Over the course of the last year, my left ear has healed, my right ear has improved, but my central internal tinnitus has persisted and worsened. Normal sounds like the furnace turning on, a fan next to my bed, the car vents, cause it to spike to a piercing noise. Lately, just hearing people speak can cause it to react and spike.

I've tried the tinnitus app and can't seem to match my frequency. When I do, the tinnitus goes away temporarily, but I also think the sound inside my head is higher than my ears can hear, due to the MRI incident and/or age.

But I just cannot stand this anymore. For some reason, the past month has seen it spiking to unbearable levels, to which things that I could use to mask it previously aren't helping, like a shower or going outside. White noise used to be something I used for calming, and now it's like a weapon against me.

I'm relatively still young, in my 40s with a spouse and 2 kids, also relatively young.

My life isn't the same anymore; any joy that I had is gone. I'm an empty shell of a person. I don't feel joy, happiness, excitement; all I have is this piercing and reactive frequency in my head that just doesn't leave me alone. It's agonizing, and mentally, I've reached my limit. I'm booking an appointment with my doctor to discuss MAID, and I'm sitting here crying because of it.

My spouse and I had planned out our lives, and I can't see a future trying to live like this. We had talked about the elderly people you see on TV walking down the beach and wanted that to be us one day, but I can't see it. I'm not here anymore, I'm not present. My youngest (5) learned how to wash dishes, and they were so happy and excited, and I couldn't be with them because of this unrelenting tinnitus that doesn't stop.

My spouse asked me to try continuing on, for them and the kids, but I can't explain to them how impactful this is.

This is a torture that cannot be explained, even to other tinnitus sufferers.

 

[hey]

Hello, I'm really sorry for what you're going through. From what you've told us, it seems that your ears have been able to heal, which is amazing and a wonderful thing in itself. I'm truly happy for you about that.

As for the head tinnitus, there is always a chance it will improve or that you will gradually habituate to it. There are people here who have experienced the same thing for years, so you're not alone. We all understand what you're going through, and we care about you and are rooting for you.

 

[RocketJSquirrel]

Give it time. You are still in early stages. I've had tinnitus for decades, and while I can't say it's decreased, I can say I can ignore it much more easily than before. Please take MAID off your to-do list and give yourself more time to adapt. You will almost certainly adapt to the point you can live with it, as have I.

 

[Jupiterman]

It can be explained to other tinnitus sufferers.

There is nothing you have written that has not been said before.

You have reactive tinnitus, and it also worsens easily with additional noise exposure. These factors make your condition more serious.

Do you use earplugs and earmuffs in environments where there is a risk of significant noise exposure? Doing so may help reduce the spikes, reactivity, and further worsening.

 

[another_person]

It can be explained to other tinnitus sufferers.

There is nothing you have written that has not been said before.

You have reactive tinnitus, and it also worsens easily with additional noise exposure. These factors make your condition more serious.

Do you use earplugs and earmuffs in environments where there is a risk of significant noise exposure? Doing so may help reduce the spikes, reactivity, and further worsening.

Yes, I carry earplugs with me just in case.

Give it time. You are still in early stages. I've had tinnitus for decades, and while I can't say it's decreased, I can say I can ignore it much more easily than before. Please take MAID off your to-do list and give yourself more time to adapt. You will almost certainly adapt to the point you can live with it, as have I.

Every day is agonizing. It no longer feels like living, just existing. I yearn for a moment of silence, a chance to be at peace with the sounds around me. For what it's worth, I'm a former member here who deleted their account but has now returned, so I'm not entirely new to this. My story may sound familiar to those who responded before.

Hello, I'm really sorry for what you're going through. From what you've told us, it seems that your ears have been able to heal, which is amazing and a wonderful thing in itself. I'm truly happy for you about that.

As for the head tinnitus, there is always a chance it will improve or that you will gradually habituate to it. There are people here who have experienced the same thing for years, so you're not alone. We all understand what you're going through, and we care about you and are rooting for you.

I still have ringing in my right ear that I've mostly become used to, unless I'm wearing earplugs or AirPods. It doesn't bother me nearly as much as the central reactive tinnitus, which I just can't adapt to.

 

[PeteJ]

I got a horrible spike from a dog bark. My worst spike in the last six months was from a truck in a parking garage. I was in a car, got out, and walked away, but the truck was still making noise. That spike lasted a long time, though I cannot remember exactly how long. It eventually settled, but I was so worried that my baseline would change and get worse.

Now, I am worried again. This spike is terrible. It feels somewhat different, but it is definitely just as bad, and I cannot fall asleep when I want to. With my usual baseline, I could eventually get to sleep, even though it was hard, but now I stay awake one to three hours longer than I want to.

This cycle of getting spiked by loud sounds and then worrying that my baseline will worsen feels endless. I am just so tired of it all, and MAID feels like the only way to make it stop. I think I would reach a point where I would just sign whatever forms are required, and if it were approved, I would feel I had no choice but to go through with it. :-(

 

[another_person]

Today, the reality of my MAID decision has really started to sink in. Back in January, I wrote a goodbye letter to my family when I was deep in depression caused by this newly developed tinnitus. I read it again yesterday and was devastated.

My wife doesn't seem as upset this time about my thoughts of exiting as she was before. I know it's still affecting her deeply, as she hasn't been sleeping, but I think she also realizes that my suffering hasn't improved. I know it's hard on her, and I plan to go about this with as little involvement from her as possible. She'll need her strength for the kids and for herself. Google says this process takes about 90 days, which I think is enough time to get my affairs in order.

My five-year-old, who used to be so proud of herself for doing the dishes, asked me to teach her how to make mac and cheese. While she couldn't do most of the tasks, she was still happy to participate as we made it together.

I broke down. Luckily, my wife was there to give me a hug, and my five-year-old thought I was laughing instead of crying. She did see it, but my wife brushed it off because she had just been cut by glass a few minutes earlier when one was dropped on the floor.

I have an appointment with my doctor next week to discuss MAID. This tinnitus is unrelenting.

Instead of being happy to teach my youngest new things, I have this awful reactive ringing just piercing my brain.

She wants to learn to ride a bike. She's growing out of her balance bike, and with the season changing, we looked at bikes today since sales have started. It was another situation where I should have been able to enjoy the moment, but it was taken away from us again.

Today on Reddit, I actually met someone else who seems to be going through exactly what I'm experiencing, though theirs was caused by something different. They're young, only 22. I hope things get better for them. I'm sure they will, since at 22 the brain can still heal, as it's not fully matured yet, but close.

I guess this will become my journal.

 

[Saba]

Saying prayers for everyone who is struggling. May you find relief from your suffering very soon, so you can live life for and with your loved ones.

@PeteJ and @another_person,

Is there any way to get compassionate care for your severe tinnitus? I would hope that some type of treatment currently going through FDA approval could provide medical access before it is officially marketed, considering the severity of your condition.

I was rejected from a clinical trial last April, a study out of Wayne State University in Detroit. The treatment involved a series of injections to study their effects on tinnitus. When I called to ask about the status of the study, I was told that another one is in the works, this time a non-drug trial. I spoke with a team member, Lydia Bourke, who said she would submit my name and that Dr. Zhang's study team would reach out.

Her email is ae5493@wayne.edu or you can call 313.577.1579.

 

[Sydnears]

Please don't do it, OP.

Are you in Canada? I doubt they would approve MAID for tinnitus, though I'm not completely sure.

Can you afford to take time off from life, maybe a year or more, just to rest your ears? Spend a lot of time in nature. Calm your brain. Relax. Even if you have to go somewhere solitary for a month or two, it may help things settle down. It sounds like you're less than a year into the worsening, which isn't long in the grand scheme of things.

 

[Vincent R]

Today, the reality of my MAID decision has really started to sink in. Back in January, I wrote a goodbye letter to my family when I was deep in depression caused by this newly developed tinnitus. I read it again yesterday and was devastated.

My wife doesn't seem as upset this time about my thoughts of exiting as she was before. I know it's still affecting her deeply, as she hasn't been sleeping, but I think she also realizes that my suffering hasn't improved. I know it's hard on her, and I plan to go about this with as little involvement from her as possible. She'll need her strength for the kids and for herself. Google says this process takes about 90 days, which I think is enough time to get my affairs in order.

My five-year-old, who used to be so proud of herself for doing the dishes, asked me to teach her how to make mac and cheese. While she couldn't do most of the tasks, she was still happy to participate as we made it together.

I broke down. Luckily, my wife was there to give me a hug, and my five-year-old thought I was laughing instead of crying. She did see it, but my wife brushed it off because she had just been cut by glass a few minutes earlier when one was dropped on the floor.

I have an appointment with my doctor next week to discuss MAID. This tinnitus is unrelenting.

Instead of being happy to teach my youngest new things, I have this awful reactive ringing just piercing my brain.

She wants to learn to ride a bike. She's growing out of her balance bike, and with the season changing, we looked at bikes today since sales have started. It was another situation where I should have been able to enjoy the moment, but it was taken away from us again.

Today on Reddit, I actually met someone else who seems to be going through exactly what I'm experiencing, though theirs was caused by something different. They're young, only 22. I hope things get better for them. I'm sure they will, since at 22 the brain can still heal, as it's not fully matured yet, but close.

I guess this will become my journal.

Trigger warning: morbid answer.

I agree that death, probably, is the only getaway from tormenting tinnitus.

However, we are all going to die eventually. It is inevitable. Why not stay around until the moment comes around by itself? If you can manage one more day, then you can manage to end. Death can be a reward rather than an escape. If it is the only thing we can truly look forward to, then we should make the most of it.

 

[Jupiterman]

@another_person, how are you going to feel if you look down from heaven in a few years and a successful treatment has been devised by AI?

 

[Meinz89]

Friend, please hold on.

Before you read this and assume I'm just another sufferer with "manageable" tinnitus — here to hand you empty positivity or false hope — please know that's not who I am, and that's not what this is.

(Also, I'm sorry this is a long post)

I have been where you are now. Many of us have. Honestly, I think most of us here have lived in this darkness at some point.

I've had multi-tonal, reactive tinnitus since April 13 of this year. In July, I looked my mother in the eyes (on her birthday ), while sobbing, and told her I wanted to end my life. I meant it.

I'm a 36-year-old woman, married, 35 weeks pregnant with a baby boy I prayed for for years. I'm a singer, a writer, and I once dreamed of getting back into hospitality and event planning. But I haven't sung in seven months. I don't write anymore. And I've been terrified that I'll never enjoy being around music or social gatherings again.

None of that mattered then — not the love of my incredible husband, not my mom, not the miracle growing inside me. The noise had consumed everything. I even told my husband to hide my gun — and he did — because he knew I meant it.

For over two weeks, I lay in a dark room sobbing, not sleeping, barely eating, praying God would just let me die. I thought about how I could somehow save my unborn baby but leave this world. I grieved my old life. I was convinced I would never feel joy again.

I don't know if you believe in God or not, but please hear this: when the lights go out, it's a decision you can never take back.
None of us really know what comes next — and I believe it's either someplace worse than tinnitus, or a dark void of nothingness. Either way, it means leaving behind the people who love you most to live with the pain of losing you.

I slowly crawled out of that hole and began noticing the small things in life that make it meaningful.

We have limbs and can walk and lungs to breathe.

We are not disabled — though this condition certainly builds new barriers in our lives.

This world is not quiet. Why am I chasing silence in a world full of noise?

I'll likely never have true quiet again. I can hear my tinnitus everywhere, over most everything, and it's still hard not to cry every morning when I wake up. But I get up anyway — and I'll keep getting up.

A part of me died on April 13, but I am not dead. There is still beauty left in this world to look forward to.

I believe, deep down, that this noise will calm with time. It does change, and the body does adapt. We get this one precious life, friend. Please don't let this noise take that from you.

Try, even for a moment, to stop fighting it. Stop asking "why me?" and start noticing what's still beautiful — your children, your wife, the people who love you. You are still here and above all else, you matter.

A year from now, this will be a painful memory, but not your reality.

I'll be delivering my baby in two weeks, and yes — I'm scared. I know I might visit that dark place once again. But I also know I can crawl out of it, because I already have — and so will you! You will!

Please, please don't give up!! You're not alone in this. We're all here — scared, struggling, but here.

And that's where we want you too -

Still here. Still fighting. Still living.

 

[another_person]

@another_person, how are you going to feel if you look down from heaven in a few years and a successful treatment has been devised by AI?

Looking at the history of these forums, people have been saying, "Just a few more years, just wait a little longer," for over a decade. I'm sure that even before these forums existed, people were saying the same thing many years ago. Frankly, even if AI found a cure, I doubt I would benefit, as my type of reactive tinnitus seems to be very rare and not linked with hyperacusis.

Please don't do it, OP.

Are you in Canada? I doubt they would approve MAID for tinnitus, though I'm not completely sure.

Can you afford to take time off from life, maybe a year or more, just to rest your ears? Spend a lot of time in nature. Calm your brain. Relax. Even if you have to go somewhere solitary for a month or two, it may help things settle down. It sounds like you're less than a year into the worsening, which isn't long in the grand scheme of things.

I am in Canada, yes. Nature causes my reactivity to spike, but I understand what you're saying. Unfortunately, it isn't possible for me to take time away from work, but my life insurance would ensure that my family is taken care of financially for the rest of their lives.

 

[another_person]

As I read through the forums, I remember why I deleted my previous account. Most threads were started a decade or more ago, and we are still nowhere closer to a treatment than the hopeful souls of years past.

I see a thread and feel a flicker of hope, only to notice the original date and realize the same people posting back then no longer visit. They were all hoping for something, anything, to give them a bit of life back. I'm sure that in ten years, if this site is still around, the next group of sufferers will read these same threads and feel exactly what we feel today.

It seems like research has fallen off a cliff. The only thing in the news about tinnitus lately is the SSD, and honestly, I don't think it's coming to market. I think many people have given up hope on it.

Today is Saturday, and the family is around. It's taking everything in me not to break down. As I write this, my eyes are teary, but I'm holding back the tears.

My five-year-old, who is more attached to me than you'd ever believe, makes these feelings so much harder to bear. My older child just got their first job, and I should be excited for them. They tried so hard, applied to countless places, and finally landed something. They jumped for joy, and I could see their excitement, but I felt nothing. How can a parent not celebrate their child's big achievements? It makes me feel like a soulless person, parent, and partner.

Now the tears come. I guess I still feel something, but it's never happiness anymore. Just regret, sadness, and hopelessness.

It amazes me that so many people wake up each day, go about their lives, and find purpose through their families without having the same dark thoughts I do. I envy their strength. I envy you.

In mid-August, I developed pneumonia, most likely caught from my five-year-old, who fought it like a champ. For me, it turned into a drug-resistant strain that lasted for weeks, with multiple hospital visits and four different antibiotics before I finally got through it. It spread in my lung, dropped my blood oxygen to the low 80s, left me weak and barely able to move, with fevers reaching 42°C and coughing up blood. I was one failed antibiotic away from being admitted for IV treatment.

Yet I don't remember my tinnitus affecting me then. I only remember being afraid I might die. And now, today, I'm thinking about MAiD. How messed up is that? I'm still technically recovering from pneumonia.

Why does tinnitus exist? I know the same could be asked about many diseases, but this one feels especially cruel. It's so destructive, so consuming, so life-sucking.

Another journal entry.

 

[PeteJ]

The spike is still bad. I was hoping there would be some improvement by now. I'm also in Canada. I find that if I get some decent quality sleep, I wake up with it slightly reduced, if that makes sense. There's more of a hiss and the tones seem a bit lower, though it's hard to describe. Unfortunately, that effect is only temporary. I think it's because the body relaxes a little, including the ears. It always goes back up to the spike about an hour after waking.

Does that ever happen to you, OP? At night it's the worst because I'm just lying in bed with nothing to distract me. I keep hoping it will ease and go back to baseline at some point. I've been learning to remove my earplugs more carefully, and I have to be just as cautious when inserting them. I've had ear canal discomfort from foam plugs for a long time now. I'm using the most comfortable kind I can find, and there really aren't other alternatives. They're the Laser Lites.

I also have earmuffs, but they're pretty uncomfortable too. I'll have to use both somehow, because I just can't keep getting these spikes when I could otherwise protect myself or avoid risky situations. It has to go back to baseline because this spike is unbearable.

I've been thinking about MAID because I feel like I have no other choice. I agree with the OP; there's nothing that suggests a miracle treatment is coming anytime soon. I feel so crippled, handicapped, and disabled all the time from this, and the spikes are the worst part. Praying for it to go back to baseline is exhausting and deeply depressing.

 

[Kam75]

Hi @another_person, I'm so sorry to read your story.

The way you describe your tinnitus and how it affects your mood is exactly how I would describe my own experience. I use the same words as you, so yes, everyone here understands your suffering.

The first time I had tinnitus, I was 21 years old—imagine that—and I was wearing earplugs in that pub.

The second time I was 28, at a music festival. Despite wearing custom-made hearing protection rated for 25 dB, I suffered extreme noise trauma that caused me to develop at least four new sounds and hyperacusis. You can find my story here.

My life and my dreams feel over. My goal was to find a wife, get married, and have children, but that now seems impossible since I must live completely isolated in my home.

I don't mean to compare my situation with yours, but I think you should consider yourself fortunate, if I may say so, to have developed this condition when you already had a wife and two children.

Imagine the emotional suffering it can cause for a young person like me to feel as if I have lost my youth and will never be able to meet anyone again, since there is music in nearly every social place.

Be strong for your wife and children, my friend. Be an example of resilience for them. All of us who live with severe tinnitus are warriors with minds of steel for continuing to exist despite this cruel condition.

Since you've only had tinnitus since 2024, it may well improve over time. It took me four years to feel any better before my condition worsened again because I made the mistake of going back to parties.

Protect your ears, and remember that there are at least three people in this world who love you, think about you, and need you. I'm sure that one day you'll feel better.

Kamil

 

[Jupiterman]

Looking at the history of these forums, people have been saying, "Just a few more years, just wait a little longer," for over a decade. I'm sure that even before these forums existed, people were saying the same thing many years ago. Frankly, even if AI found a cure, I doubt I would benefit, as my type of reactive tinnitus seems to be very rare and not linked with hyperacusis.

I don't think you can realistically compare past research on tinnitus cures to what AI will be able to do in the future using the same metric.

As AI continues to develop, we are likely to see superhuman intelligence in the next few years, with IQs well over 1000. AI will be able to carry out thousands, if not millions, of virtual research experiments within its own digital circuitry, hopefully converging to one goal:

To invent a treatment that regenerates hair cells and synapses.

This already happens naturally in the animal world. With reptiles, fish and birds, their hair cells and synapses heal - they regenerate. Birds would go deaf from the whooshing sound of the wind when they fly if this didn't happen.

If it works for them, perhaps AI can figure out how to translate this biological repair mechanism into humans?

Your excuse about a potential future cure from AI not working for your version of reactive tinnitus is ridiculous! Reactive tinnitus is caused by damage to hair cells and synapses, just like every other form of tinnitus, albeit the reactive type has more damage.

I'll think of you if AI ever cures my tinnitus.

 

[another_person]

Today, as the tinnitus rings on and fills my head, all I can think about for the past few hours is the person who did this to me, the MRI tech who I begged and pleaded to fix my hearing protection, only to be told multiple times it is in properly and threatened to end the session because they were behind. I should have told them to end it, but I paid out of pocket for this.

I bet they're living their lives and don't even remember the event yet. Here I am, contemplating ending everything and leaving my whole world behind.

I'm crying again. I had to leave where my family is to write this, with tears streaming down my face. I can't let the emotion show to my kids.

I don't have much else to say today; the emotions are running strong.

 

[PeteJ]

I don't think you can realistically compare past research on tinnitus cures to what AI will be able to do in the future using the same metric.

As AI continues to develop, we are likely to see superhuman intelligence in the next few years, with IQs well over 1000. AI will be able to carry out thousands, if not millions, of virtual research experiments within its own digital circuitry, hopefully converging to one goal:

To invent a treatment that regenerates hair cells and synapses.

This already happens naturally in the animal world. With reptiles, fish and birds, their hair cells and synapses heal - they regenerate. Birds would go deaf from the whooshing sound of the wind when they fly if this didn't happen.

If it works for them, perhaps AI can figure out how to translate this biological repair mechanism into humans?

Your excuse about a potential future cure from AI not working for your version of reactive tinnitus is ridiculous! Reactive tinnitus is caused by damage to hair cells and synapses, just like every other form of tinnitus, albeit the reactive type has more damage.

I'll think of you if AI ever cures my tinnitus.

I know that a lot of people are skeptical about AI, but I'm not one of them. However, when it comes to what you're talking about—a real treatment for tinnitus—what are the chances that it will actually come about in our lifetime? Also, most people would still rather be around, young enough, and not on their deathbed when or if it finally arrives.

 

[pants]

The only thing in the news about tinnitus lately is the SSD

There is more going on than just the SSD. Rinri Therapeutics is researching regenerative cell therapy to regenerate damaged auditory neurons. Recently, scientists managed to keep a slice of cochlea alive outside the body, allowing them to observe how hair cells amplify sound. These are just a few examples of recent developments that may eventually lead to something that could help us. The pace of progress is frustratingly slow, but AI might help speed things up.

 

[Scruffiey]

I'm afraid I'll have to play Devil's Advocate and support your decision.

If you've truly reached the end of your rope and all enjoyment has been drained from your life to the point where you can go through with assisted dying, not an easy thing to do, and you fully understand that it means leaving behind your wife and children, then sadly, life has become unbearable for you.

Life is meant to be lived and enjoyed. There's little purpose in existing as an empty shell, just waiting for a so-called natural end that, in all likelihood, would be very unpleasant on its own.

As humans, it's natural for us to fear death and want to prevent it for those we care about. But just as I wouldn't ask you to continue suffering with a physical condition that has stripped away your quality of life, the compassionate reason behind MAID's existence, I also wouldn't ask you to endure mental anguish that may not show outwardly but has the same devastating impact on your well-being.

You're clearly familiar with tinnitus, so I'm sure you've taken that into account in your decision-making, though I do find it often clouds the clarity of thought and planning we once had.

Would I suggest giving it another year, keeping MAID as an available option to provide some comfort and perspective, and seeing how you feel at the end of that time? Yes, I would, but ultimately it's your decision.

I truly wish you didn't have to make this choice, but whatever path you take, I hope you find peace and relief.