Hearing Loss and Severe Tinnitus — From Loving Life to Suicidal in 2 Months

For god's sake I hope you're right.

 

Keep your expectations in check. Although the treatment may be available to most people in 2 or 3 years, you can't assume that "condition is going to be gone", as the study itself only showed about 5 dB to 6 dB reduction in the tinnitus volume compared to the control group, and only clinically significant for 65% of the participants who met the requirements to participate. It's not a silver bullet and won't work for everyone.

 

I might have one of the most complicated tinnitus cases of anyone I’ve read about. In my case I went from 100% normal to bilateral tinnitus in the middle of the night for seemingly no reason. I had been using a nitro cream for a colorectal issue that was causing massive headaches but turning the literature inside out, it should not be a true cause of ototoxicity.

I went on to see a TMJ doctor who adjusted a crown after my ENT proposed I might have TMJ (I had zero known jaw issues prior)... And then... I developed TMJ!

I also found a brain tumor near my DCN. Because it’s not an acoustic neuroma, neurologists can’t be sure if it’s the cause, AND I have clinically compressive disks in my neck, though no known true instability as I understand it.

On paper, I’m an otherwise active and healthy 39-year-old guy who has always eaten well and worked out daily, not ticking the boxes for tinnitus from the typical lists.

Add it up, basically collecting all the common somatic causes for tinnitus plus a possible neurological cause!

This condition is just so elusive and hard to study, I realistically reserve no confidence an effective drug can or will ever be produced. The only real analogous condition would be pain (subjective) and we’ve done darn well with that, but the pathways of the auditory system and perception are exponentially more complex. OF COURSE I hope to be very wrong as I’m 15 months in and still struggle most days.

 

Hey @Pixelito. Thank you for your support. I envy you your optimism. Me, I still cannot believe I stepped onto the mine called tinnitus/hyperacusis. So avoidable. If I had only researched the topic of misophonia (from which I suffered) better, I would have learned about tinnitus/hyperacusis and I would not have them now. I have mentioned it many times here.

I also do hope Dr. Shore's device will see the light of the day, but the progress is excruciatingly slow. Indeed, at this rate, maybe, just maybe, my tinnitus will get better on its own. It already has to some extent. I still have wild swings, I am desperate often, but I am able to escape it more often somehow. It gets quieter and/or moves into the back of the mind more often. It is still torture, but I am functioning somehow. At a very reduced capacity, but I am.

The great things that will happen in my life... to be honest, I am not sure they will. Even when I am coping better, I feel my life has been thoroughly destroyed. I am just trying to survive for a little longer, I honestly do not see how I can be happy until this shit disappears, or is reduced to a consistently low ignorable level.

But we'll see. It can go in several ways. If I get really bad, I might pull the plug. If I get better, I will be sure to let you know.

One profound effect this has had on me is that it lowered my capacity for any other pain, and my willingness to fight for life. A bad headache is terrible now. I can't imagine going through some worse shit, like even flu with pneumonia. I had it a few years ago and it was awful. I can't imagine how it could be with tinnitus. Or maybe COVID-19. If I get it, it is possible it will finish me. Basically I feel like the death is much closer. Maybe it always has been, but now like, eh, if this gets worse, I am out. If that something will not finish me, I may help it. I am damn sure not interested to live to 70s or 80s and be a sick old man. Nah, I am definitely out before that. If I get cancer diagnosis, I don't think I am doing chemo. I am out.

I do not want to die just yet, but I am less afraid of dying. Turns out life is way more ephemeral than I realized.

I became okay with suicide, when one reaches the limit. If there is God - and an after life, maybe then he can be merciful, because so far I have not seen that from him (or anything at all from him, for that matter). If there is no God, then there is no afterlife, and thus just blissful nothingness without tinnitus. That's damn beautiful, too.

 

That's crazy, man. Seems like you have a few possible culprits (tumor, neck issues). Most likely you can't blame yourself for them.

I know I am to blame for my tinnitus and that feeling sucks. At the end of the day, I don't know if this is worse or better.

Good luck to you.

 

I am so tired of this. Today was a bad, bad day. I woke up with a mild headache, but enough to put tinnitus in overdrive. I slept most of the day. My hyperacusis also increased. I must have caught some virus or whatnot, as I later had some diarrhea. Tinnitus adds insult to the injury really - and big time. What would be a minor indisposition, becomes a debilitating event. Finally, now late at night, feeling better.

Other than that, my tinnitus has been somewhat stable in terms of sticking to its usual pattern of being loud after waking up and getting quieter later. I have moments of it being rather quiet, relatively minor hiss/static in left ear only - vs. being in both ears and filling my whole head when it is cranked up.

On a good day, I notice louder noises do not really spike or trigger it more. I dropped some utensils in the kitchen the other day, nothing really happened. And few other incidents with louder noises here and there without spikes. I remain (and intend to remain) careful, but it seems reassuring that my ears are not made of glass anymore it seems. It is quite certainly related to improvement in hyperacusis, and the related lowering of reactivity. My tinnitus still remains reactive to car noise, but not that bad on a good day - I was bombing around in my louder car the other day (plugged, of course) and it was fine.

When I played a stupid game (using a tool without hearing protection), I won a stupid prize. So now I am playing a survival game, which is still going on for the time being.

I keep revisiting the question of faith, God, the meaning of life.

God? It is very hard to believe in him. If he is there, he really does not seem to care or get involved at all. I really think there was a force that created the universe and us, it is seem mathematically impossible we, life, exist due to some random chain of events - evolution from a single cell organism? What BS. That's honestly a religion that is harder to believe than that there is an "old dude in the sky" religion. But, frankly, beyond the act of creation, it is possible the creator does not give a damn. Maybe he lost interest, maybe died, who knows. Regardless, I do not think he is particularly good given how the world has been designed. It is dog eat dog world, after all. Full of sorrow and suffering. If there is afterlife and he is merciful then - maybe that's how he can make up for the suffering here. Maybe. No evidence whatsoever. But a nice thought.

The world is beautiful, too, in so many ways. I so loved seeing nature, especially deserts and mountains, vast open areas. Clouds, sky full of stars at night. Setting sun. Full moon. Sounds of birds and insects. I loved human creations, too. Art, paintings, music. Oh, how much I loved music. Rock, jazz, some classical, choir. Sung poetry. I loved architecture, technology (though less and less). Machinery. I loved modern performance cars. Heck, I sometimes loved people, too. Not too often, to be honest. I met some interesting and inspiring people. But, sadly, we do live in dog eat dog world, and that probably determines how most of people are. Self-centered, egoistic, antagonistic, or at best indifferent.

There is something about tinnitus that destroys all that. Destroys both enjoyment of life and capacity to deal with life's challenges. Maybe it is not just tinnitus, a chronic pain would have similar effect, especially pain in the head. Like chronic headache/migraines would be perhaps similar or worse.

I am still asking God (however futile and nonsensical it seems) for the 2nd chance. I'd do anything he wants in return (ok, maybe not everything, I'd not go around and e.g., shoot people if he wanted that, or at least I don't think I would), be a better person, serve others, certainly stop focusing on accumulating "things". Maybe I could find the meaning of life, beyond just regular life of a corporate drone, the consumer, living mostly to selfishly enjoy his time on earth. Alas, it does not seem likely the 2nd chance will be given... unless the time indeed heals that enough and I am lucky to endure until then. But I am so tired.

The bottom line, all I want is to feel healthy again. And that means silence in my head (or near it). Then I would live more than I ever did, I think. I still do not know what I would want to achieve. I would want to do something good and be independent. I would so love to be free of the corporate and modern world slavery. I so wish I wanted that earlier. I had every chance to be free. But I did not want it then, I wanted things.

Just felt like writing some more semi-coherent ramblings, thank you for bearing with me here.

 

You said you're getting more quiet days. This is a great sign and could mean you're moving toward healing. I mark my quiet days on a Calendar. They are actually becoming fewer and fewer, but my bad days are becoming lesser in volume. I'd say around 4-5/10. I don't know if I'm adjusting or if the volume is getting lower. It's been 4 months since my incident. I'm just grateful the initial 7-8/10 volume I had the first couple of weeks is gone.

Suicide, yeah. My thoughts on that have always been, who is to say that will fix your problems? When I was depressed earlier in my life I wondered, who's to say death will change that? I feel the same with tinnitus. What if you end up in a worse place? Stuck in some purgatory with ringing in your ears for eternity.

And what if months after you're gone, the Auricle device or some other treatment/cure hits the market? Life is funny and cruel that way. What if it goes away on its own? There are plenty of cases here worse than yours, where that has happened over time.

When I have ringing I tell myself that I know it will be temporary, and I wait for the quiet days. When it's quiet it's like I have my life back and I'm more grateful than ever, I take nothing for granted and I live those days to their fullest. It is ironic what it takes to appreciate the little things in life like a day without ringing, but that's what it is now.

 

You make good points, @Pixelito. We do not know what awaits us after death. It is hard to believe there is anything, but what do we know.

I messed up bad last night. I picked up hearing aids. The audiologist set up them up to boost high frequencies. But he also told me to play sound enrichment via them if I'd like to - sort of TRT. So for more than an hour I was playing some crickets, etc, sounds I previously used for sound enrichment. I did not play them loud, I played them beneath the level of my tinnitus, but I think as I was adjusting them I might have cranked up too much in frequencies I do not hear. I think he said he limited the output of the hearing aids (80 dB?), but I guess it was too much. I pulled them after an hour as I was feeling they spiked me a bit, but I wasn't worried since this would happen when playing sounds on my phone before. As the night went, the tinnitus became louder and louder - nearly catastrophic - but different. The volume was more in the ears than in the head. Before, when my tinnitus was at its quietest, I'd hear it fairly faintly only in the left ear (that's how it started). When it would spike, it would spread to right ear, and than into the head - the high volume was clearly associated with it being in the head. Now it is very loud (the shower did not mask it this morning) and it is more in the ears. I really think the hearing aids damaged my ears.

I cannot believe this. I was in a poor place, but somewhat stable and somewhat manageable, now facing a huge setback. I just keep praying and praying. I really do not know how to go on with this.

 

Man, I'm sorry to hear that. I'm assuming you'll get in touch with your audiologist ASAP. It might be a coincidence or an adjustment. I'm wondering if those hearing aids are something you really need this early in the game? You are working so hard to find a medical solution. I get that, but I think you just need to give it time, be patient, and trust nature.

Look, doctors want you to come to them for treatment. They lie when they say there is no cure. There is a cure for everything in this world, it's called time. I am always encouraged by the success stories here. And the only real recovery stories I read are always the result of the same thing. Time, my friend. It's never the result of Medical treatment, TRT, drugs or therapy. These things always seem to be counter-productive.

You were making progress and experiencing quiet days without the help of doctors, so why not trust that?

 

You are right... I was contemplating medical solution, but in the end I rejected all prescription drugs because I know the depression I have is a result of tinnitus. Not a cause. Take tinnitus away from me, and you will see the happiest, liveliest person on earth the same day.

I don't know what possessed me to go after the hearing aids. It was more than 2 months ago when I made the appointment when I was in a really bad spot. The hearing aids were finally available for pick up (and the guy had availability for an appointment) so I went and took them. I really did not think I played them loudly. I was also driving my loudish car the same day (plugged), but I've done this many times without issues.

I managed to get up and do some stuff this afternoon - required driving, but I had my wife drive since I am really crushed by this (I've been fine for months now, could drive without issues). Maybe it got tiny bit better in the afternoon, but it is still bad (loud).

I hope this is a temporary spike and it will recede. This is yet another reminder and warning - no loud noises AT ALL permitted, and NOTHING directly in the ear.

You're right, there are only 3 things that can help: time, patience, protection. It should be called 3 rules of tinnitus recovery: "TPP".

 

Nuff said.

 

Hearing aids aren't suitable for those with severe tinnitus. It's as simple as that.

They aren't called "tinnitus aids" for a reason.

For those with mild-to-moderate tinnitus, pretty much anything goes; exposure to normal everyday sounds, visits to restaurants etc. As the damage is only moderate, you are likely to recover and disappear from Tinnitus Talk as many before you.

Severe cases are so different that the normal rules don't apply. The severe condition is so alien to a moderate case that there is little point in speaking to audiologist, ENT, therapist etc.

They won't help you, no one can. If anything, they will make it worse.

It's 'TPP' or risk worsening.

That's the stark choice.

 

I bought hearing aids and wore them for about a year and found that they helped with my high frequency hearing loss, until my tinnitus became louder without explanation. I set them aside for several weeks and realized that my tinnitus was slowly getting quieter. Never wore them again.

 

Yeah, as if I could not sit still and keep messing things up.

Luckily, the spike caused by hearing aids seems to have subsided completely. I am having a quiet tinnitus day - I guess what I call mild now, though would maybe be moderate for others. The hearing aids induced spike was really, really scary - very different from any other spikes I have had. The loud tinnitus was coming straight from the ears, whereas my "normal" spikes are head tinnitus. It really feels as if the direct high frequency sound to the ears stimulated the damaged hair cells - so the perceived sound actually originated in the ear. Just my theory.

It's TPP from now on, and nothing else.

 

Have you had any better days this week @gameover?

 

Thank you for asking. Not really. I have been intensely working this week, and that helps divert attention really effectively. But I cannot work continuously with this intensity, like 14 hours a day. I will drop dead, if I do.

But the tinnitus for the most part has been very loud and intrusive. Really bad. I have had a few anxiety attacks this week. I am not sure what is causing this, the overall tiredness and poor sleep over the last days or I am paying the price of trying the hearing aids.

I honestly wish I had not tried the hearing aids. I am not going to try anything. I hardly tried anything (no meds), but any time I did try something, it made things worse.

I can't believe I am in this situation. The really worst part of it is the inability to relax and rest. This is something I have never experienced at all, except occasional bouts of stress, but nothing, nothing, compares to tinnitus. Hyperacusis continues to be bothersome at ~80% level, but I could live with it. Just protect and avoid loud sounds. I can't see living with severe tinnitus for too long. I want to live, I so loved life. But this needs, it must get better. Otherwise something will break in eventually.

 

There’s nothing BS about it. One needs to understand how natural selection and adaptation—the underlying mechanisms behind evolution—works. It’s not a random chain of events, but a process driven by environmental pressures and genetic variation. This process doesn’t happen over night, but billions of years. Far more plausible than invisible man in the sky.

 

Has your hearing loss improved at all @gameover? Might be worth getting another audiogram.

I’d not lose hope either way, there’s quite a few acoustic trauma stories which saw improvement between 12-24 months. You’ll get there.

I’m 3 weeks in and starting to see some minor improvement and improved sleep after microsuctioning / irrigation caused my tinnitus (think it was the noise of the suctioning).

Hang in there mate.

 

No it has not after 6 months. I had like 4 audiograms done and I feel like they spiked/set me back every time. I am not doing another audiogram ever. There is no point.

I am dealing with another setback without cause or noise trauma. I was coping better the last two weeks with varying level of tinnitus, moderate, severe, sometimes mild. But since yesterday I've been dealing with huge spike, catastrophic most of the time, not maskable in the shower. I have an increase in hyperacusis, too, but not to such crazy levels as before. There is a relationship between tinnitus and hyperacusis spikes, but not linear.

Thoughts about ending it came back. I don't want to, but I feel like this is inevitable as this is getting worse and worse. I just can't believe one can find oneself in such a spot. I abhor it. It is beyond tragic and sad. I had various times in my life. But two things were 100% consistent: (1) I never, even remotely, thought I would ever think about ending my life, (2) I never had tinnitus, even for a split second, and I had my share of exposure to loud concerts and music in my youth.

I really think the damn hearing aids I tried for an hour almost three weeks ago caused further damage and set something in motion. I saw the audiologist, of course he denies that physical damage to the ear is a possibility. He even went to test / measure the output the hearing aids while I streamed the crickets from my phone at max volume (which I of course did not do when wearing them). He said about 74 dB max in high frequencies. But, who the **** knows, what is safe and what not. He at least acknowledged that he believes me about the worsening and considers me a difficult and rare case he has not quite seen before despite doing it for 20+ years.

As has been said on Tinnitus Talk, once you have damage, all bets are off and nobody knows what is the safe limit anymore, and whether there is more damage to the cochlear, synapses or simply whether sound stimulates further maladaptation in the brain. It could be all three, or more to do with TTTS and other related pathologies (which I am quite sure do not apply to me).

I need to wait more and give myself time. 1 year anniversary is within sight. Maybe 2 years. 3 looks tough. It is really crawling through hell with little hope. I need to do it for my brave and loving wife and my beloved children. Just for a little longer. And I thought I will be able to be there for them for many, many years to come...

 

Hi @gameover.

Thanks for this thread and for sharing your journey and thoughts.

I have had acoustic trauma and noise-induced tinnitus since attending a Christian music festival, just over two months ago.

I had perfect hearing before. I have never gone to clubs, concerts or festivals in my life, but as this was a Christian one, I decided to go. Truly the worst mistake of my life.

After many weeks, my hearing has returned to reasonable levels, although not as good as before. However, the tinnitus is relentless and unending.

I have totally questioned God's loving care and hand on my life.

I have similarly gone from loving life to having regular suicidal thoughts. I have never been suicidal previously.

I would love to think that the tinnitus will go away for me, but I know that for many it does not go away, so I am preparing for the worst.

Every bit of my life is negatively impacted, work, relationships, mental health, faith.

I don't know that I want to live a life with tinnitus.

I just wanted to share that I relate to everything that you are going through.

 

You are only 2 months in, there is a lot of hope for you. No hyperacusis? That's already great news.

My advice for noise trauma - protect your hearing, but don't isolate/overprotect. No hearing tests. No MRIs. No drugs. No hearing aids. No TRT. No headphones. Try to keep busy and distract yourself. Maybe take B12 if you're deficient. Eat well, sleep well. Take walks in nature. That's the best one can do...

 

Thanks for the message.

I have been experiencing some sound sensitivity too unfortunately... but I have been very cautious about where I go, in terms of noise.

My main symptoms are ongoing earache and ongoing tinnitus. I am desperate for both to resolve. There is some decrease in tinnitus volume. The ENT doctor said to give things more time. The audiologist said that no-one can predict whether or not these things will resolve.

It is stressful...

Thanks for your advice, especially about keeping busy.

I will try to not think too much about escape options... The ongoing symptoms are quite difficult to manage though.

Thanks.

 

I hope you have a nice Thanksgiving, @gameover.

 

Thank you. I did have. The noise suddenly got quieter, almost mild for the last few days. No celebrations. All I need or want these days is less noise in my head.

 

Nice one, it will no doubt continue to fade with time. Take it easy.

 

One thing I notice with mine is that the quieter it gets, the more sensitive your ears are going to be around that time. It's almost as if they're in a recalibration phase. If you're super careful during this period, you might notice some more permanent improvements. I hope you end up feeling even better soon!

 

Hi everyone,

I would welcome your views on something.

I suffered acoustic trauma three months ago at a music festival, and have been told to avoid loud noises.

I know that this is good advice long-term, but I wondered, is there an initial period of time where I need to be very careful, and if so, how long is this initial period of time for?

Thanks for any thoughts.

 

I wish the improvement lasted. I feel almost normal during better periods. But when I have a setback it feels worse somehow, and I am descending into madness. I conclude silence in my head was the most precious thing I had. Literally the most precious. There, I said it. To the point where no longer consider my life worth it without the peace.

I am hanging out to see if it gets better, but I might have better odds winning the lottery, so it's pretty futile. It is still hard for me to plan and execute suicide, though I learned about a method that would be effective, painless and accessible. I feel I might do something stupid in a rush when this damn noise triggers me. Just a moment ago I seriously considered banging my head into a mirror or cutting my veins. But all I would achieve is creating a mess.

 

I can only speak to my own experience. I get very emotional like you during setbacks because I've had multiple times where I thought it was almost gone just for it to come back with a vengeance later. One thing I've had happen is that I'll get a really bad set of days or weeks, then the next time I get an improvement it's even better.

I'm wondering if this is the auditory nerve healing or my brain trying to recalibrate these signals. I don't really know the process or reason why tinnitus improves over time for many people.

I made a post last Monday about my right ear acting up. Right after that post my ear seemed to calm down a lot. The dentist drill tone comes and goes but seems a lot quieter for the past several days. I'm dreading the thought of this improvement going away, but so far it hasn't.

For now, try to keep pushing through and see if you get more meaningful improvement. The Susan Shore device is also on the horizon which is definitely worth a try for you.

 

You got no measurable hearing loss and you are few months in. And you get virtually silent days. Your prospects are good.

I have moderate/severe hearing loss (50-55 dB at 8 kHz). The fact my tinnitus is not screaming all the time is perhaps miracle in itself, but then my prospects are not nearly as good. I am about to mark 11 months since my acoustic trauma. I am really buying time and hoping for a miracle. I want to give myself 2, maybe 3 years to see how it is. But if it gets meaningfully worse before then, I may just give up and end it.

I have more and more moments when I feel some kind of relief when I realize end it will bring peace. And please no BS about the other side, God, threat of hell, etc. This is all such insane nonsense. It's amazing I believed in that for most of my life.

IIRC I read somewhere it may take up to 60 days for hair cells to fully die after injury (or maybe it was 30 days?). That's why steroids are recommended up to 30 days as a salvage therapy. In reality who knows, the damage can be combination of hair cell damage and synapse damage. Things evolve. My tinnitus (and hyperacusis) pretty much kept evolving for all the time I had them (almost 11 months), and still does today. It's not linear and I get better days, quite a few recently, but the setbacks/worsenings are debilitating. It is really an insane condition. Whoever has stable and no more than mild/moderate tinnitus without hyperacusis should consider him/herself blessed.