Does Life with Tinnitus Actually Become Better?

Hi guys,

Has it actually gotten better for anyone with long term tinnitus?
I’ve had tinnitus for about 3 months now and I’m tired of people telling me it will get better - it is actually getting worse.

I can’t go 5 minutes without thinking about it. It has affected my social life SO badly. And whatever I do, I have to plan around my tinnitus. It’s like a disability.

I’ve been so restless, I’m always on the go so I can keep my mind off it. As soon as I get time alone, all the horrible thoughts are back.

Every day I’m figuring out a new thing that I that CAN’T do because my tinnitus could get worse. Well what’s the point anymore? What’s the point in living if I can’t enjoy anything?!

The rare occasion I feel happiness and smile/laugh, is instantly ruined the ringing, then comes intense anxiety.

I don’t know if I can live with this much longer. I’m just taking it day by day, but I feel like eventually I will have enough. It’s only been 3 bloody months. I’m so helpless.

My heart goes out to those who have had it a lot longer.

And I feel so much anger that I have this for no fault of my own!!!

I’m sorry for this rant, I need to get it off my chest to people who actually understand what it’s like.

 

You're still in very early days...
My tinnitus is liveable when its not spiking or other issues playing up like ETD.

Give it time. Keep busy through day get plenty of rest at night, mask if you have to at night, just a little lower in volume than your tinnitus.

 

Better is maybe the wrong word. Less acute fight-or-flight, maybe. You learn to surrender to the fact that the old you is gone and this is the new normal. After all these years I still am conscious of the tinnitus being there. I make countless mental "notes" of it being there through the day even though I really don't want to. How I adapt to this is through a combination of masking and keeping my mind occupied. The old me would be able to actually relax my brain and not have to think about anything, but part of the adaptation is to always get my mind focused on something so as not to fall back to the default state of trying to relax in a quiet room and being driven bonkers with the tinnitus. It's exhausting and kind of depressing just to have to do this, but it's necessary as a matter of survival. YMMV.

 

That's how mine was in the beginning and to be honest it was that way for the first two years. There are days now where I can go hours or most of the day without thinking about it. That is unless I'm having a spike (which I am right now), or if I've been around loud noises which cause it to spike for me.

I agree, it is like a disability. This is especially true when it's accompanied with hyperacusis.

 

Even if it won't fade, there is a good chance that after 1.5-3 years you will habituate...

If your tinnitus is the result of a perforated eardrum, you are likely in luck! Many people see their tinnitus disappear months after their eardrum heals (ears take forever to heal).
Check out the study below, and then check out the many other studies linked on the pages of that thread

https://www.tinnitustalk.com/threads/spontaneous-recovery-stats-many-recover-3-studies.21441/

 

Preface: I'm talking about mild/moderate tinnitus. I'm not a severe sufferer and I have no right to talk about their experiences.

The bad:
It's never going to be as great as before onset. I've had tinnitus for 31 years (born with it) and even after a literal lifetime of habituating to it, a spike can still affect my sleep and make me afraid. Having tinnitus forces you to recognize how frail a human body is and how terribly it can fail.

The good:
You can use this horrible disruption of your life to mold a new, better one. A bad tinnitus spike is what finally forced me to exercise regularly, because I couldn't sleep otherwise. It made me stick to a strict diet and sleep schedule, for the same reason. It made me protect my ears religiously, possibly preventing a much worse spike down the line. Overall I think I'm living a better life after tinnitus forced my hand than I would have had otherwise.

I hate having tinnitus, I hate how human bodies can't regenerate hearing (while certain animals, such as birds, can!), I am sleep-deprived right now because of an ongoing spike, but still - it is definitely possible to have a full life even with this shit condition.

 

It got better for me, but only so much (my reaction, not the tinnitus and hyperacusis - that got worse).

I still find having tinnitus and hyperacusis means a huge negative impact on quality of life. I still find myself being depressed and anxious about it after nearly 3 years, although I also have good days here and there.

 

I think it's a matter of one's perception of what is better. As I've mentioned before, I came from another tinnitus support group where habituation means not having tinnitus bother you at all in less than 5 years and that's a promise! I was considered negative and got crapped on when I did not agree it was that simple.

On Tinnitus Talk for example, I see some people singing TRT praises but are still suffering or bothered by their tinnitus. If it were me I would consider having been ripped off.

My point is different people have different perception what it is to be habituated.

 

@Yas, it is very likely that you will begin to have more occasions of happiness and smiles and yes, even laughs.

 

All,

I’m coming up on my three-month anniversary with the horrid beast that is tinnitus. After a bad head cold and ear infection left me susceptible, one loud band practice did me in. I awoke the next day with fullness in my left ear. The fullness was different from the feeling of a clogged or blocked ear. I knew something was up. It did not feel right.

Throughout the next two weeks, the fullness took turns switching between my ears. After 2-3 weeks had passed, tinnitus welcomed itself into my right ear spontaneously. Even worse, it reacts to all external sound. It has been nearly three months without improvement. I am suffering daily with this horrible condition.

My heart truly goes out to those that have endured this on a severe level for years - heck, I feel for anyone suffering with this at all. Though mine is certainly severe, I have only had it for a few months. I’m not doing well with this beast.

I feel like my life is over at 23 years old. I don’t see the light at the end of the tunnel. I don’t even see the tunnel. Even after looking into the prospect of future regenerative medicines and treatments, I can’t help but feel doomed. I feel like: what if it doesn’t work for me? I know potential treatments are progressing, but this condition has turned me into a pessimist. I can’t help it.

One thing that has helped me slightly is this forum. Tinnitus Talk is full of amazing people who are compassionate, resourceful, and knowledgeable. This is an invaluable service to the tinnitus community.

I loved life prior to this, but now I struggle making it through each day without breaking down. I had anxiety before this, but it has spiked to unimaginable levels. For the severe sufferers out there, how do you do it? How do you acquire the strength to fight this beast? I’ve been an entrepreneur since I was 20, but tinnitus has derailed my business ventures at the moment. All my life I aspired to make the world a better place in some facet. That was always my goal. My outlook is now bleak. Does it get better?

Emgee

 

Hi, how did you get Tinnitus? Xx

 

I'm about to enter my 6th month with T, and I would say that things have gotten quite a bit better. I'm fairly certain my T is just as loud as it was at the beginning, maybe slightly quieter (10%?) but I'm able to handle it much better. In the first couple months I was having very dark thoughts and I was having awful panic attacks and metldowns in the middle of the night.

Now I'm sleeping with quieter and quieter white noise. I originally was just filling the room using a white noise machine, an iPad with sound enrichment, and sometimes a fan. Now I'm experimenting with only having a fan running on a low setting (about 36 to 40db of sound where my head is) and I'm having a fair amount of success.

If I'm bored or tired, I still pay a lot of attention to my T. If I'm busy or having fun, I'll forget about it for a while. I've had some days where I think about it just a handful of times. Those days are rare, but they still happen.

Yes, this all sucks, but I definitely see things moving in the right direction now. I think the same can happen for you too.

 

@lightning That is some positive news to hear. I'm just about to hit week 4, and I feel like I am heading in the right direction. A lot of my anxiety has really started to drop. I am accepting this new reality that I am living a little more each day. I have been doing the journal entries from the "Back to Silence" method and found that it is helping me come to terms with this new tinnitus reality.

Wishing you and everyone on this forum the best (in recovery, habituation, CBT, whatever works for you!)

 

@Yas It got much better for me, not really the loudness of the tinnitus but my reaction to it.

I was in a real bad place with tinnitus and depression for the first year. I’ve had it for over 3 years now and the past 1.5 year.
Of my life has basically been how I was pre tinnitus.

It can be very hard and isolating for people our age as our friends all want to go out partying, holidays etc but it will get better for you.

I made a success post on here a couple of weeks ago, give it a read and feel free to direct message me if you want to talk.

 

I hold the opinion that tinnitus is one of the worst disabilities a person can have in a society, that is literally centered around loud noises, to which nobody gives a second thought.
The problem is that tinnitus is invisible and most people have never even heard of it.
This is why instead of getting sympathy and understanding, our mental health and resiliency gets questioned.

A person in a wheelchair on the other hand is visibly disabled and most people go out of their way to accommodate them.
Nobody would ever dare questioning their sanity or toughness.
Also, and they don't have to keep explaining what the problem is.

I would take the wheelchair over tinnitus any time of the day, if given the choice.

 

I'm not sure if I've answered in this thread before, but yes, it went really well for me. I even reached a point where I lived and enjoyed life exactly as I did before the onset of my tinnitus. Of course now and then I can get a spike or my tinnitus can be more reactive, but it's almost always due to stress and anxiety. Once I settle down, it fades away again and I enjoy life again. Have patience, as hard as it is with tinnitus.

 

I can think of 100s of disabilities that are worse than tinnitus... blindness,deafness,losing a limb, ALS...

That’s not to say tinnitus can’t be extremely debilitating though.

 

The people that have terrible medical conditions would say they rather have tinnitus and those with tinnitus would say they prefer to have the terrible medical condition.

 

No one would rather be blind than have tinnitus.

 

Try sleeping about 2 hours a night just for couple of weeks due to extreme screeching sounds inside your head and then tell me this again.

I'm willing to bet that you would change your tune very quickly.

Personally I'm 100% certain that I would trade couple of limbs for tinnitus to stop, if given this choice.
Remember that tinnitus has no limitations as to how bad it can get.

 

If you’re suffering so bad that you’d rather go blind then I’m sorry to hear that and I hope your situation improves. The vast majority of people with tinnitus can still work, and still live their life exactly how it was before albeit avoiding loud places. For the minority (us folk here) it is bothersome enough that we seek additional support, but even so the majority of people will see improvements over a period of a couple of years. Then there is an absolute minority who seems to deteriorate further,but that is far from the norm.

 

Painful disease and conditions versus tinnitus has been discussed before. Conclusion by compassionate members has been why compare.

 

It is a disability.

But if you look into how people with disabilities cope, you can have two people with the same exact condition and one person copes better than another. THAT is what you have to focus on, not to return to the life you led before (which is impossible) but to just do better than the average person would likely fare if placed in your shoes. That IS possible.

 

Yes I'm very likely the minority within a minority.
Being blind would be horrible, but at least I could sleep and relax without being actively tortured 24/7.

Getting disability would be easy and people would show compassion, instead of questioning my attitude or mental resiliency.
With tinnitus, most people get the exact opposite.

Also I could at least still enjoy few little things like listening to music or socializing.
Tinnitus takes away every little joy and replaces it with permanent torture.

 

Here’s the long version of how the emotional roller coaster ride of getting tinnitus was for me

When I first realized I had tinnitus and I began to learn how serious it was- I was beyond devastated.
Fearful to the extreme, depressed and suicidal- and it was relatively mild at that stage.

I believe my ears became comprised by lifelong cumulative over-exposure to dangerous noise levels.
I have been playing electric guitar since I was 12 in 1983.
I began going to lots of excruciatingly loud heavy metal concerts in clubs and concert halls before I even hit puberty.
Because of hassles about my long hair I ended up working in construction where muscles are more important than looks.
My ears Permanently damaged before I was even done growing.
Fast forward to 2016 when I was working 15 hours a day 6 days a week non-stop for almost 2 years in a prison kitchen using an industrial pot and pan washer that had been modified so that any parts that were not absolutely necessary were stripped off the washer = no noise barriers.

This was done so that prisoners could not steal these metal parts and make weapons and also so the guards could easily see directly inside the machine in case someone decided to send a child molester through the steaming hot washer to cleanse his soul and meet his maker.

(Yes-of course someone did it. If there is some totally absurd rule or restriction preventing a prisoner from doing something- its because other prisoners already did it.)

The kitchen was a brutally loud environment to begin with and the majority of convicts seemed genetically incapable of placing down a 60 pound solid stainless mixing bowl without dropping it from at least a foot above the ground.
Resulting in a sound that will temporarily deafen anyone within ten yards.

Also, everyone in there is always screaming down the corridors at the top of their lungs like wounded animals and cell doors are constantly being slammed shut on you.
......my ears began ringing constantly and I just figured it would stop when I got out of jail and away from that environment.

In the meantime to cope I paid the guy who mops the tier a bag of Folgers Instant Coffee every week to move a 1950’s era industrial fan right near my cell.

It sounded like a single prop propeller but with an electric motor.
Perfect for masking my tinnitus.

Well to my dismay- the ringing didn’t stop when I got released and now that I had internet access I found out what tinnitus was.

I immediately learned that if I began protecting my ears then maybe it would get better- but what I didn’t learn yet was the word OTOTOXICITY.
My Cryptonite

So instead of being happy and free I was suicidal, depressed, having panic attacks, sleep deprived, hopeless, helpless and a walking nervous breakdown.

I couldn’t believe or accept what I had done to myself.
I was supposed to be on top of the world after being let out of my jail after 2 years- healthy, happy, free and starting my new life with a fresh start.

So...with the cooperation of my doctors at Mass General - including an ENT at Mass Eye and Ear - I began medicating with an array of ototoxic drugs to calm my hysteria.

Not once was it mentioned that these drugs were poisonous to the inner ear for someone with tinnitus.

My tinnitus got consistently progressively worse at an alarming rate.
Like a significant noticeable increase a few times a week.
I also became physically and psychologically dependent on the drugs that were making my tinnitus worse.

By the time I discovered what Ototoxicity was on my own thru Tinnitus Talk - I could hear my tinnitus outside and I could not put my ear against a pillow at night.

When I fully realized the predicament I had placed myself in-
being addicted to the drugs that were making my tinnitus worse and that I needed at the time to cope with it.

Suicide was greeting me warmly with open arms at this point.

After a couple of serious self-induced overdoses I realized that EMT’s are way too good a resuscitation techniques these days -
So I had a change of heart or maybe it was the brain damage from the OD’s.

Either way - I decided I was going to try to live with tinnitus and see how it goes.

I began to wean myself off each drug one at a time- which was not so bad because I quit the worse drugs first and covered up the withdrawal symptoms by upping the dose of all the other drugs I was still on.
In the end I just had to quit Gabapentin cold turkey- but I still had IPA and POT to ease my agony.

By the time I was off everything my tinnitus was so severe that I just stopped caring about how bad it was getting.

Coincidentally-I had also hit that 2 year point where many people begin to accept it to some degree.

Although I still can’t get over what I had done to my life in those 2 short years.

So in the early stages when I had relatively mild tinnitus I was a suicidal wreck.

Now I am in a living hell with very severe tinnitus - yet I am no longer afraid or hopeless and have chosen to see this thing thru for as long as I can.

How does that work for me?

Well-I hate to say it.
But once I came to accept the fact that my hopes, dreams, goals and expectations are crushed -
everything became less complicated.

I just let it all go.

And for anyone who says it doesn’t have to be that way for me - well with this level of intense ringing I cant even focus or concentrate enough to fully empty my bladder when standing at the toilet.

I stand there feeling like some de-formed misfit with multiple tones and frequencies
screaming in my head.


I go to work in construction doing a job that I can safely do blindfolded and half-asleep.
I used to do it proficiently while high as giraffes balls on Xanax and Narcotics-
so no problems there yet.
My best childhood friend is my boss-
so I am allowed to do whatever it takes to protect my ears.

I go to the gym and still have my prison muscles and a six pack at age 50.
And yes- working out maxes out my tinnitus level as the heart pumps all that blood past my ears- but I suck it up like some insane savage.

I don’t gain weight because eating is miserable.
I have to chew so slowly and carefully or my tinnitus will get so loud that my head spins and my eyes blur.
A great indicator of how loud this shit can and possibly will get- trust me your better off not knowing.

So if your ears are compromised from noise exposure and you now have tinnitus -
the door has been opened for Ototoxic meds to poison your ears.

If you don’t have tinnitus you can probably eat meds like candy and have no issues.

But once that ringing starts - its a whole different ball game.

If you have tinnitus for whatever reason-
Don’t ever let anyone tell you that it’s impossible that such a small one time dose of meds wont make it worse.

Or my all time favorite- “There’s absolutely nothing in that drug that can hurt your ears”.

BULLSHIT.

Everyone is different- you may be able to take an ototoxic drug and have no issues.
For real- so don’t necessarily just not take a needed med because it’s ototoxic.
Think about trying it because you may have no issues.
I am extremely susceptible to ototoxicity to a degree that seems to be absurdly rare.
Yet even I was able to get thru an emergency course of very powerful meds that I thought would surely push me over the edge of insanity- but nothing happened.

But if I take an 800mg Ibuprofen or a 30mg
adderall I’m in hell.

Too bad because the adderall could be perfect for when someone with tinnitus needs to focus on something very important.

And ibuprofen is the only thing that allows me to get thru the second half off a workday without knee pain.

Unfortunately both are off the table for me.

But I still got beer!!!
(Thank you sweet Jesus, thank you).

Anyway.
I am willing to bet that most people new to tinnitus will be in a much better state of mind after a couple years or so.
Most will find ways to cope without giving up their hopes and dreams- and many will end up not even bothered by it anymore.

Yes Sir - most of you people freaking out right now are going to be perfectly fine.

Almost impossible to believe at first-
trust me I know and getting hysterical for the first couple years is a common reaction.

But we’re not making this up for the hell of it.
Call it habituation or acceptance or whatever you think it is that happens.

But something does change after a couple years and the way you are feeling now will be completely replaced by something much more tolerable.
It WILL happen for you too if you let it-
I promise.
Most of you newbies are going to be just fine .......for the most part.

 

A few months ago, I posted about my experience with tinnitus, and my life has only gotten better since then. Even with the Covid-19 situation, I no longer feel like a prisoner in my home, and when I'm out and about living life I can't even hear it. As I mention in the thread, the ringing hasn't gotten better, but my ability to deal with it has improved dramatically.

https://www.tinnitustalk.com/thread...tus-overprotection-and-antidepressants.40082/

 

Yes, life gets better. In the beginning it was horrific and I thought life was over. It is now going on 7 years and I live normally. I work everyday and enjoy my life. I had a major illness for the past three years and had to take cancer drugs and IV antibiotics which made it worse while in treatment but I eventually habituated to the louder tinnitus. I go long periods of the day not even noticing it and when it spikes, it really doesn't bother me. If I find myself getting frustrated I just do the next thing I planned on doing and it's okay.

I just wanted to stop by because newbies don't see many people who have gone on with life because we stop posting. I just want to show that I am still here and doing okay.

 

My story is nearly word for word identical to Kathi. I too don't post much, largely because despite it all life went on and there isn't any value in raking it over forever. Where I seemed to luck out was that the severely ototoxic chemo (my only choice) actually had the effect of shifting the frequency of my tinnitus, which moderated the hyperacusis.

 

Hi Emgee,

there is no shame at all that you have only had tinnitus for 3 months. My H only became debilitating 6 months ago and it feels like years have passed. There's no time limit as to how long you have to suffer before you are valid, suffering is suffering and it deserves compassion - including from yourself.

Don't feel like you have to be strong all the time, struggling is expected. Crying is second nature, I mean you know how people's eyes get red and puffy when they cry? Mine stopped doing that months ago because I cry so often my skin is used to it now. There's no shame in that. If anything it proves how strong a person is.

If you can be living through something that brings you to your knees, makes you cry like a child, and yet you still get up the next day and go through it all over again, then you are probably the strongest person you've ever met. Who else could do that? And yet here you are, surviving despite everything.

I don't want you to feel like your life is over. I mean, as I type this I sit miserably fully aware that I feel the same way as you do, like I was robbed of my life and potential. But the thing is, we can never give up. Never give up on the idea that there is a place for you in the world, that there is happiness, and beautiful moments that make it worth it.

Never give up on you, on how strong you are. I know it seems so unfair, I feel the same way. Why should I have to be strong all the time? I'm so tired. Sometimes I feel like Atlas, holding the weight of the sky on my shoulders, or Tantalus, completely cut off from the things I crave so badly from life. Sometimes we're just done, and that's okay. I mean I'm about ready to throw a full scale temper tantrum at the unfairness of it all.

But why is it unfair? We live in a world where terrible things happen all the time to people all around us. My elderly neighbor has cancer spreading through his body, my mother has a degenerative bone disease that we watched slowly shrivel her mother for decades, my father had his collar bone broken 7 times by his abusive mother before he finally ran away at 14 and got a job and has never stopped working. Terrible things happen in the world, but in all that pain and struggle there is a purpose. There is meaning in misery. For those who are religious, that hope is Christ, the one who suffered every single pain every one of us ever would in our life. He knew first hand the condition that was to be given you, and He knew you. That tells me that He knew you could handle it, that it would bring you to Him, that it would make you a better person. I'm sorry if you're not Christian, but I felt very strongly that was what you needed to hear.

I'm sorry you're struggling so terribly. How I wish I could take everyone's hurt away from them. Good thing someone already paid the price and is willing to help us through our trials.
Never forget how far you've come, how strong you are.
Best wishes, Tavia R

 

Love everyone in this thread for posting your stories. Thank you.