Tinnitus Wins. There Is Nothing I Can Do About It. This Is My Testimony of Surrender.

First of all: Don't worry. This is not about suicide or anything related. I am mentally stable. I just want to testify my surrender to tinnitus.

It started in April 2020 after Sudden Hearing Loss. High-Pitched whistle sound in the left ear (12,000 Hz). Doctors told me don't worry, it will go away. Of course it didn't. Over the months, it slightly got worse. On some days, the "whistling" in the ear transformed into an ultra-high pitched circular saw (14,000 Hz) that ORIGINATES FROM INSIDE MY HEAD. It's a constant, very loud "saw" noise (I don't know how to else describe it). Then after a day of hell (those days are the worst, because it's unmaskable) I went to sleep and usually the next day it was "back" in my ear again.

Since November, I experienced A LOT MORE of those "circular saw inside the head" days. I didn't change any habits. I didn't change anything. I just wake up in the morning and the saw is in my head. Great. The "saw" periods have also started to last longer. Being single days back in June/July/August, It transformed into usually being 2 days in a row.

The longest "saw" period yet was 3 days. And I am pretty sure it will soon get more and more. Probably in 6 months or so the saw will become a normal day, and the ear day an exception.

I completely lost all form of enjoyment in my life. I can't enjoy video games anymore (not even Cyberpunk 2077), I can't enjoy watching movies, I can't enjoy listening to music (cause music does not mask it). In the beginning I was strong and willing to "fight" the tinnitus with all of my energy, no matter the cost. I was determined and firmly convinced that I will overcome and get my life back again.

Now, 8 months later, all my power, all my will to resist and to fight has completely vanished. Crushed by the indomitable tinnitus. It will not get better. No. I will stop telling myself this lie. It WILL slowly transform into the circular saw being constant, and there is absolutely

NOTHING I (or any doctor) can do against it. I accept that. I accept that my life will be a huge burden from now on and I accept that my bare existence is just the greatest torture anyone can imagine. I accept that my life will not be enjoyable anymore. I accept that everyone I know can live a normal and healthy life. I accept that I have won the "Tinnitus Jackpot" by (probably) having the worst tinnitus possible.

Hear my testimony of surrender.

Hereby, I give up all fighting, all resistance, all hope. I completely surrender to the allmighty tinnitus and I accept that it has taken over my life, and that I will never get that control back. Every mild day is a gift. Every other day is like it is.

Sincerely,
Simon

 

I felt this post very strongly. I, too have tinnitus at about 13,800 hz and it’s utter torture. We may look great from the outside but we absolutely do not have a healthy life at all - as you say. I have nothing else to add right now. Hugs, brother.

 

Hi Simon, I am 5 months in and my tinnitus is also extremely variable.

I would suggest trying Xanax or Kava for some temporary relief. If I hadn't discovered the effect of GABE-ergic substances by now, particularly Xanax, I'd prob be in a psych ward or dead. It legitimately drops my volume by about 75%. You can't use it often, but it lets you regain some normalcy e.g. take one, order a pizza and play Cyberpunk 2077 relatively unbothered, and since you can choose when to take it, for me at least it imparts a feeling of agency/control.

 

If you get mild days than in a year or two you might get your life back.

 

Beautifully written. But please, keep in mind that these fluctuations don't necessarily mean that it will get worse.

 

@Zaimon, I am with you. I have had tinnitus for over 30 years and have had many spikes.

I do have periods where yes it is loud but I enjoy (habituate) what I am doing. I'm currently 72 and in a terrible spike. After 30 years I'm tired.

I pray the lord take me in my medicated sleep. I pray for better treatments or cures for a lot of illnesses.

Simon you appear to be a young man. Do not 'surrender to tinnitus' please.

Habituate with me.

G-d bless and hopefully you will find joy.

Ken

 

I have loud and high pitch tinnitus (that has gotten even higher pitch over time). I use the white noise from this site, with the following settings. It took me awhile to find something that masks my tinnitus almost completely. I use this when my tinnitus gets more intense and it does provide relief.

https://mynoise.net/NoiseMachines/whiteNoiseGenerator.php

 

I don’t even get mild days.

 

This seems to work for me too. Although I prefer having the next two sliders down on to balance it out, and have my tinnitus blend in, because it's hard to mask using a normal volume setting.

How loud do you have to put this to mask yours?

 

Ahhhh wrong buddy.

Imagine circular saw plus loud whine multitonal madness. That's what I got so no, you don't have the worst tinnitus possible.

I used to have just the saw and I was OK.

Unmaskable tinnitus does not mean it's a bad type. You will get used to listening through the noise, but it takes a few years.

You are in acceptance stage, that's good.
Next is habituation stage but you will stay in acceptance for some time.

 

I agree with Dan. It will take some time for true acceptance to kick in and some shape of habituation can still take place so you can at least reclaim some enjoyment of life. Surrendering to a trial of life is a good approach. I read about the miracle of surrendering from Eckart Tolle in his book "The Power of Now" and practice its concept. It has greatly released the mental stress and burden of constantly fighting, fearing and worrying about my tinnitus. Such acceptance will take time for sure. Give it a year or 2 you may find you will have a new perception of tinnitus quite different from now. Keep up the hope brother. God bless your recovery.

 

In a paradoxical sense, you’re doing the right thing, as from my experience, the less you fight it, the better. Sooner or later you have to give in to it and stop fighting it as there is no other choice.

Also, it’s still early days for you, so anything is possible. If you continue to focus on your life the incessant noise will slowly lose its grip over you and become less of an issue. The caveat here is that this may not be true for everyone, but for the vast majority, it is.

Re-engage in life as much as possible and let time do it’s thing. It’s a very difficult journey, but there can be light at the end of the tunnel.

 

Well, you have hardware that can run it apparently, so congratulations. My advice: force yourself to play it anyway, even if it feels like unfun torture, it will pass time.

Also, try to think of tinnitus as your own Johnny Silverhand's engram: it's in your head, it has a mind of its own, you don't fucking want it there, and there's nothing you can do about it barring some future intervention from Leneire / University of Michigan / the Arosaka corporation / whoever.

I think @dan's advice is well intentioned but tone deaf. That is, @Zaimon I agree with Dan that you're probably just in the early phases of this, your brain hasn't remotely plasticized all the changes, and your pessimism and expectation that this will "only get worse" is unwarranted and counterproductive when many people experience tons of instability and up and downs over the first year and then do have things calm down.

I think it's tone deaf because there are a considerable number of people who are not lucky enough to get a second chance, especially in the case of severe audio trauma. If you're inside a humvee, roadside bomb gives you 165 decibels and a TBI, you might just be waking up in that VA trauma ward with a permanent and very severe tinnitus on top of very severe and permanent hearing loss.

I understand the wisdom in telling scared newbies they will get better because this is generally true, but it's unrealistic to say that everyone can habituate the first time around and it's disrespectful to people who did not get that chance.

 

I use it when I'm sitting right at my computer so the volume is not high. I also use it to take the edge off, not to completely mask it.

 

I have never read a story like that ever on multiple tinnitus forums over a decade.

 

That's interesting, there's a bunch of them right here on this very forum. (I don't want to link here, there's no need to alarm OP, but happy to discuss in another thread; alternately, if you pick through member introductions for about 5 minutes, you're probably at least as smart as I am).

If you think there's no plausible mechanism by which a single event or trauma can be so devastating that it leads to severe permanent tinnitus, I don't know what to tell you. Do you also believe that there is no single event or trauma which a bone or ligament can be subjected to, which will be permanently deforming and disabling? There's nothing magic about the anatomy of the ear, DCN or AC that makes them immune to instant permanent damage.

 

@Zaimon, Dan's word of advice is from someone who has done the hard battle with the worst type of tinnitus and I can bear witness to that. I had seen his mighty struggles from his first posts about a decade ago. What an awful struggle it was and yet he has the fortitude to later gather the worst sufferers in thet forum under his wing as a small group with his constant advice and support. He is someone who has walked the talk. I have much admiration for @dan doing the best he could for the worst cases of totally desperate people. Now that I have SSNHL to deal with and a new loud multi tonal tinnitus besides my hitch pitch chain saw type, Dan will be a person I look up to surviving this type of tinnitus. So trust him and not give up on yourself thinking you have the worst tinnitus. This will help you soldier on and give yourself plenty of time to get better over time, particularly you are now on the right path of acceptance. Take good care. God bless your recovery.

 

Thank you all for your replies. Something really strange happened after I posted this. About 1 week later (around Christmas) my tinnitus was suuuper quiet for like 1 week. I first thought of it to be a miracle but I could really really enjoy the holidays. As soon as I started working again (Software Engineer, forced home office due to COVID-19), it began to get louder and went back to the good old random pattern again. 1 day good, 1 day meh, 1 day super hell, etc. So I start to think that a big factor is psychic. I think that whole COVID-19 and home office situation (I really hate home office and the isolation, I need to be with my colleagues) are causing stress and that stress pushes my tinnitus.

I try to stay relaxed, take GABA, etc, but I honestly believe that once COVID-19 is gone, my tinnitus will get better.

 

Yeah so exactly 1 year ago I got sudden hearing loss with tinnitus and extreme vertigo. ENT had no clue what caused it. 2 weeks later vertigo and hearing loss was gone but tinnitus stayed.

I have been actively monitoring my tinnitus because for me it is super fluctuative. There are days where I don't hear it at all, and there are days where it's a heckin loud circular saw inside my head spinning at 14,000 Hz. Today is one of the "saw" days. I can barely focus at my work (Software Engineer) and my mood is below zero. Yesterday I heard nothing. I was happy. The sheer randomness is the worst part.
I have been monitoring my tinnitus every few months to track any kinds of improvements.

So what changed after 1 year?

Absolutely nothing.

It did not get any quieter. There are no fewer days of it being super intrusive and loud af. It did not get any more consistent, still random "screw your life in particular" days. I can not cope with those bad days better. My wife still cries at a weekly basis because she sees me suffering and is helpless. I spent hundreds of Euros for supplements of all kinds. Useless. I bought and read a lot of tinnitus books. Useless.

I read a lot on Tinnitus Talk (this helps a little because the people are awesome and reading those success stories is really inspiring). My Quality of Life went down a rough 80% since developing my tinnitus.

I was hoping that the whole COVID-19 situation and the psychical stress was the cause of my tinnitus, now one year later all my family is already vaccinated (even I got my first Pfizer vaccine) and I was hoping that this would take away some stress and improve my tinnitus. Haha nope, nothing. Why should it go away?

I eat healthy, I do sports, I sleep a lot, I drink much water... It does not improve even by 1 percent.

Habituation? Not possible when you have such a fluctuation.

So here I am, 33 years old, a broken man with no future. If we want kids, we should do something soon because time's running out slowly (wife is also 33). I said I can't handle a kid like this. Whenever I don't get enough sleep, my tinnitus gets even louder. Also imagining a kid crying and shouting around in ADDITION to the ringing... No way.

My life taken away by some ridiculous bullshit which isn't even my fault. No hope for a cure, no hope for relief. Just have to cope with it and struggle day through day until one day you are granted the mercy of death.

 

Man I'm with you.

My name is Simon, too.

My ex girlfriend just left me because I see no future for me, can't handle kids etc.

I can't fucking sleep since over 2 years!

 

I've had tinnitus for one year and 1 month. It came with a sudden hearing loss in the left ear. Transformed into a highly fluctuating, ultra high pitched (14 kHz) spinning chainsaw inside my head. So there are days where I hear only crickets chirping or nothing at all, but then there are days where the chainsaw is spinning like mad inside my head and I can't mask it or do anything against it (like today). On those days I usually get very tired in the afternoon (eyes begin to get heavy) and I go to bed quite early. The next day is usually (more) silent. So sleep seems to be a factor, but even if I sleep 10+ hours at night I get the chainsaw days. I already tried that.

Habituation is simply not possible because if you don't hear it for a full week and then it hits you like a truck the next day you start again from 0.

I tried all sort of stuff (sports, dieting, TONS of supplements, noise therapy, maskers) but it does not change. There was once a period of whole 2 weeks where I didn't hear a thing and even thought it's gone for good, but then the next day OUT OF NOTHING the chainsaw was back, fiercer than ever.

Everyone keeps telling me it gets better over time - it simply doesn't. Something is broken inside my brain / ear / whatever which will never ever get repaired. I mean if one year doesn't heal it, why should 2 years?

I am only 33 yearas old, so in theory I have a whole life left to live, but at what cost? I hate my life, I hate each day, I hate my doctors for not doing anything, I hate all people who are my age and do not have tinnitus but they have kids already and live their lives. I can't even think of having kids with this condition?

Those chainsaw days are so terrifying, I can't concentrate on work (Software Engineer), masking does not help because the pitch is so high. This week is in particular suuuper bad, already had 3 chainsaw days. I don't know what's happening right now but it's definitely NOT GETTING BETTER.

Yeah you will say "be glad that you have silent days" but I'd rather have a constant tinnitus than this random s*it so I could habituate to it. But not like this...

Should I try Lenire? I have read a lots of reports in this forum and overall it's a "meh", and it's quite expensive. I gotta try something...

 

Sorry that you're having a very rough time. I agree that inconsistent tinnitus is harder to habituate to, but it is not impossible as I, and many others, have done it. I never had a full week of silence, since the tinnitus started, it's more like half a day, or the better part of a day, but since I no longer hear it unless I listen for it, it doesn't bother me anymore.

Thirteen months is not long enough, IMHO, to get past it, especially in your case. When the brain begins to cease being as startled by these strange sounds, you will not think about it as much. Eventually, the days when you can hear it, are the same as when you do not.

This may take up to another year or so to start happening, but your chances for relief are very good. If I, and millions of others, can reach this point, so can you. It's difficult to believe, at this point in time, but this is the way it works.

Good luck.

 

I had some improvement from Lenire, I used to have several tinnitus sounds which reduced to two sounds. One of my sounds was catastrophic and that was eliminated very quickly.

The two sounds I have left still suck though!

I also had a bit of improvement from Will Sedley's sound therapy in that I have habituated further. I used to hear my tinnitus whenever I walked my dog which was very depressing, now I often find I don't notice it that much. If you look in the Will Sedley thread in Research News category you'll find details.

I still have tinnitus and I still detest it, it's just not end of the world bad which it was pre-Lenire. Hopefully they will improve the device over the next couple of years.

P.S. Please ignore the naysayers and fear mongering people here.

 

I'm sorry you are going through this. You are in my prayers.

Have you tried any medication? For the days where it's really bad maybe Xanax or Klonopin?

 

Although I am dealing with a horrible spike/new sound in the last two months from sound exposure; take it from me: The tinnitus can reduce in volume over time. My initial tinnitus was blaring loud and over the course of many years it got so quiet I could only hear it in a silent room or when I was laying my head down on the pillow to sleep.

I'm the same age and in a similar boat, I also want to start a family but I am struggling right now too. Keep your head up buddy. We'll beat this. It has only won when you let it.

 

Sounds like you’re struggling too at the moment based on your posts. I see that you’re two months into the new sounds. You’re in the dreaded first few months when it’s at the loudest and distortion is everywhere. I know it’s easier said than done but hang in there and things will get better. I’ve gotten material relief now that I’m at the six month mark. With any luck this trend will continue and I’ll eventually reach the ‘can only hear it in quiet rooms’ phase.

 

You are still just one year in. One year might sound like a long time, but when it comes to tinnitus, it's a short period.

Give it another year and you will notice how life slowly gets back to normal and eventually you will stop giving a fuck about tinnitus.

 

I would give out a limb in exchange for random weeks of silence...

I don't intend to underestimate your suffering, but you can actually take advantage of the fact that your tinnitus comes blasting only a few days a week by using benzos on those days only.

That way you have the power to lower either your tinnitus or your distress from it (or both in best case!) without the addiction component that comes along with these nasty but in some cases useful drugs.