Is the Thought of Tinnitus Getting Worse Scarier Than Your Actual Tinnitus Level Right Now?

What I mean is if you could confirm with a doctor that the sound(s) you hear today wouldn’t get worse as you age or are exposed to loud sounds (excluding concerts/clubs) do you think the condition would be as scary to you?

Would it make you be able to accept your current tinnitus level more easily?

For me, my sounds bother me a ton, but particularly the dysacusis and moderate noise sensitivity that accompany my tinnitus, plus the potential of it getting worse with anything I do. I miss the privilege of not knowing what this condition is and being able to go through my normal days not worrying about further damage from places and noises other people don’t think twice about.

How do you guys feel?

 

That's the scariest part of it. I'm only 28 and its inevitable. My tinnitus started around 4 years ago, and it went from very mild/mild/moderate/moderate severe in the span of that time while being cautious most of the time after mild. Fuck this condition. Small random events and bad luck made it worse for the most part.

If it didn't fluctuate depending on mood that would help too.

 

I would no doubt feel much better if I never had to worry about if this will get worse. Not having to worry every day about occasional loud sounds potentially making it worse, would be a massive relief.

 

Yes. Big part of my mental health problems related to tinnitus is the overwhelming fear of it worsening. I'm 31, I know it's embarrassing, but I just started to live my life, and bamm, tinnitus pulled the rug out from under my feet. I don't see any future for myself. As I guess, acute said in her profile post, I started dying the moment my ears started ringing.

The sound I hear now is not particularly loud, it's a 4 at most, but shrill, high frequency and very, very annoying. But I know what it's like to have really loud T, because my low frequency buzz, which thankfully went away, was probably an 8.

And after nearly 4 months with the high frequency T, I still can't cope. I just miss not having to think about dB levels all the freaking time, not having to blow dry my hair with earmuffs on, having control over which sounds I want to hear, and which I don't. I know it's a nuance, but I miss earphones and music a lot. And sleep, oh wonderful sleep. I think I would not be half this miserable if I could sleep. I have had depression for a decade now, but T made everything worse. Yesterday, I gave up, took Xanax, still could not sleep, but it made the sounds softer and quiter a bit. But that's not a solution to get hooked on benzos.

Everyone who doesn't have T always tells me to try to distract myself, but I just can't, if the outer noises are louder than my T, I still have earplugs in to remind me of this ordeal, I have to plan my days around T. It's just not possible for me to forget about it. I miss spontaneity.

I know, I should consider myself furtunate that my T is not severe at the moment, and I really don't want to offend the severe sufferers by complaining about struggling with my mild/moderate T, but my mental profile, my personality is not strong enough to even deal with this severity.

 

Seeing as mine comes from hearing damage I only expect it to get worse as I age and naturally lose more hearing. But if it was guaranteed to stay at a 4/10 I could live with that. Hopefully the regen drugs in clinical trial are everything we need them to be. I hope to one day eradicate the tinnitus and get my hearing back in the process.

 

No. I think I’ve got relatively severe T so there is a little of a WTF attitude. I guess thing could always be worse but that seems pretty unlikely or at least difficult to imagine. So I spend literally 0% of my time worrying about worsening, but entirely too much time thinking about how I am now.

 

Yes. My T comes and goes and that also fucks with me. I'm very very grateful for my good days but I never find a sense of acceptance or safety. Every time it comes back extremely loud I wonder "was it really this loud ever before? What if it doesn't go down again?". But it always does, so far..

I still feel like I'm living on borrowed time though. Like I will look back at this time in my life and be like "boy, you had absolutely no reason to complain over your tinnitus back then, just you wait...". Tinnitus has given me a sense of urgency. I'm not 30 yet but I still feel like time is running out and that the gruesomeness of life will accelerate very fast from here.

 

dude don't worry your 30s rule. You just become dumb as shit, your brain atrophies so you actually become somehow even more neurotic, you start enjoying whiskey on the rocks on a routine basis because "you're cool, classy grown-up... not a guy who drinks too much" and the best thing of all? Increased posting power.

 

Yeah. If my T and Visual Snow stays where it is now, I can live with it. But the anxiety of them possibly getting worse is almost paralyzing some days. Until a proper treatment is found, though...I just have to do the best I can, and keep my mind of it.

 

Now hang on pal, that sounds like my 20's!

*canned laugh*

 

I definitely think thoughts of increased tinnitus can be worse than the current tinnitus itself. Since I've been improving a lot lately, I hardly care about my remaining episodes of tinnitus during the day: this is completely different from the period where the sounds had no improbement at all.

That said, I'm actually worse off when it comes to energy: I've called in sick on and off for a few weeks now because my tinnitus fluctuates all the time when I lie in bed (posture related). This impacts my sleep a lot, and I have no energy reserves anymore to compensate. So while I consider myself extremely lucky that the remaining tinnitus is mild and that things in general are improving, it is a strange time with the sounds never being the same.

But yes, the fear for the future is worse than dealing with a relatively constant condition IMO.

 

I've never been one to think about my tinnitus getting worse but in my 9 years of having it, it has gotten worse. Yet my attitude is the same. Actually better as I don't obsess with it as I did in the earlier days. What I've learned from having tinnitus is that the mind has an incredible ability to accept those things we can't change.

 

I’m 26 and have the joy of having what I think is Hyperacusis along with it

 

My T went from mild and almost unhearable to severe in the span of a couple hours. So the fear, and the reality that it's very likely, going to get worse at the drop of a hat has always added to the terror of T. I'm dealing with the idea that it will better now, but it's always a looming terror.

 

If your T doesn't go away. This is the dream. Hope I can get there. Sooner rather than later.

 

Mine is fluctuating less and less. I think tinnitus just get worse in the long term. Maybe it fades for months or few years but it always come back.

 

Some brains do. Some.

 

Would definitely make life more enjoyable since I'm unable to do a lot of things due to tinnitus. My tinnitus has gotten permanently worse multiple times over the years, so when a CBT therapist tells me it's just my fear holding me back I feel like we're not talking about the same condition. I'm not worried about it getting worse, I probably won't be able to prevent it anyway but I'm very limited in my life due to it. But at the end of the day, having a stable level of severe tinnitus would still be debilitating, though at least I'd be able to have a more "normal" life.

 

Hahaha you made me laugh. I once read a quote that goes something like this... "life is made up of little islands of ecstasy (it has to be Ibiza!) in an ocean of boredom, and after 30 we seldom catch sight of land"

 

For me hearing loss is a bigger problem than tinnitus or hyperacusis, even severe hyperacusis. Although with severe hyperacusis there is a lot of pain and many things that one cannot do...

 

Mine fluctuates a lot, after a couple years of it being bad 24/7. So yes, I get really stressed out on bad days. Like posters above I'm not mentally built for this shit. On good days I'm pretty stoked and feel normal but sad it won't last. Either way we need some good treatment! Many of us are young and I feel like things are going a good direction.

 

Yes, absolutely.

But guess what? If our tinnitus stays the way it is, then it will something else that gets us. A blown heart valve, a tumor, a car crash, a virus. And if by some miracle of healthy living neither of these happens, it'll be climate change turning our planet into an uninhabitable hellscape.

It's kind of empowering TBH. I don't care about societal expectations any more. I'm hoarding money and spending it on gamer shit and pimping my apartment. No matter how much they try to shame me, I refuse to marry and have kids - why would I? so they could suffer here, too?... I'm doing testosterone and buffing up the way I always wanted. Resigned the soulsucking corporate job and work with a cool startup for less money.

Even despite the fucking tinnitus I've never felt freer. No matter what we do, the end is near. Live it up!

 

100%. If I knew it was going to stay just as it is, I literally wouldn't care. I'd get on with my life and just enjoy it. But I don't know the origin of my tinnitus, and I'm terrified I'm going to make it worse. I might feel okay about it one day, feel like I can get back to life as long as I'm careful etc and the next... I'm just hopeless and thinking I'll never even get to enjoy a day out in the city or a meal out with my brother.

 

I'm extremely trepidatious about deafness and the cacophony of my Tinnitus being my constant, implacable companion through life. I'm 27 years old and my family is predisposed towards hearing loss: my grandfather is deaf, my uncle is deaf, my eldest brother has only a few decibels left at 32, and my mother is persevering with diminishing hearing as she ages.

I will go deaf, it is inevitable. And my brain will simulate such discordant sounds that this such intrusive T will be wistfully recalled. I already have incipient musical ear syndrome so I might have some accompaniment from the odd song to anticipate.

 

I can actually relate to this so much. Up until I got tinnitus, I had this set plan for life. All these expectations and milestones and whatnot. Now, things don’t really matter. I mean I still love my parents, and I go to work and pay my bills. But life kinda just seems like a game now. Like I’ve lost complete control of everything and I can just do my best to survive. This sounds so silly but I always thought I was special, like it never crossed my mind I would experience a suffering like this.

Like you see all these people with rare diseases or life threatening illnesses and in a way it almost feels like it’s not real. Until you also join that side of life. The side where other people read your story and think “WOW, I’m so happy that’s not me”

 

I think this is common to most young people... I also had this feeling. Bad things happen to other people. Until one day when they happen to you. It's a rude slap in the face.

 

It is quite enlightening in that way: suddenly experiencing something like other people with a chronic issue.

For example, I now completely understand why some of them can get crazy over the simple question of "how are you doing"? It's maddening when you have been fighting for months without seeing some real progress, and over and over again you have to answer "still the same, bad". It feels like you're disappointing them in some way, even though it's not your fault or anything.

I notice that even though I'm doing much better now, I still avoid the question because tinnitus has a tendency to strike once you start feeling alive again... I can't imagine how it must be for people who have had problems with their body for years.

 

I've had health issues for most of my life. Absolutely nothing related to my ears/hearing. We didn't know what or how when I was a child but I got diagnosed with a chronic condition (I was born with this!) when I was 16. And again with another chronic issue when I was about 19 years old, although we'd had suspicions for many many years prior. So I know what it's like to live with chronic conditions - resulting exhaustion was something I could at least combat by resting in bed, in silence... now I can't cope that way, and it's taking a huge huge toll on me. Probably the biggest out of all things tinnitus have changed for me so far.

I never really had a plan for life though. I've spent the majority of my life depressed and before tinnitus hit me, still didn't know what I wanted to do. I did have some plans for this year, some really big and important I finally felt ready for, but now we're here and it seems like none of it even matters anymore. I'm only 23.

I lived a fairly quiet life, honestly. I don't have many friends and I'm not super social, but I loved just going out to the city and be out and about for a while. An occasional movie, etc. Right now I'm just not even sure if all of that will be possible for me just because I'm so terrified it'll get worse. As if having a life full of crap wasn't bad enough, I now also get to deal with this... it may still go, but I'm not counting on it at all at this point.

 

Until last week I would have answered: I would definitely be cool with that and probably live a life 99% as happy as anyone else. Now my tinnitus has become substantially worse and I have e really mind-wrecking low humming noise which keeps me from sleeping. With that I definitely would NOT live a happy life, although I hope it will either go back to baseline over the next few weeks or at least that I'll habituate properly.

But bottom line is: Yes, most of the time the fear of worsening is much worse than the actual tinnitus itself.

 

I worry about my T getting worse all the time. I have noise induced T, and I'm only 21. Unfortunately, I want to be a performer/producer/songwriter, so if I follow my dreams, my T will become unbearable. If it would stay at its current level, I wouldn't really care that much. Now, I feel depressed and dejected all the time because my dreams are dead and I can't even listen to music with headphones to make me feel better.