How Do You Maintain a Career with Moderate and Severe Tinnitus?

I’m about 2 months in with very little if any improvement. At 28, I’m struggling just to get through each day. I absolutely cannot be indoors. I would categorize my tinnitus as severe. I recently went on disability leave from my job and dread going back if things haven’t gotten any better. I’m not sure how I would sit around doing analysis and making slides all day with this alarm going off in my head. But everyone here seems to function just fine.

For those of you with moderate/severe tinnitus that never went away, how do you do it?

 

My tinnitus is only moderate at worst but this is how I deal with it.

First: keep busy. I've found the only way to "not pay attention to it," is to just get totally absorbed in some activity that matters to you. Anything from a simple hobby to working, as long as it's an engaging priority in your life. I don't ever stop hearing the tinnitus, but I can become less cognizent and obsessed with it when I'm truly engaged. That is until I "check in" on the tinnitus.

Second: Don't monitor it from day to day, hour to hour, or it WILL consume you. You will have spikes, good days and bad. But it will always suck because it's tinnitus. Don't try to establish any trends or causality, the ears are so god damn fickle and have a mind of their own. Nothing sucks more than thinking you've turned a corner only to be deceived. Again, it will drive you insane. Ears healing slowly is an understatement, I didn't *notice* any improvements until well past 6 months. I know exactly where you're at dude, by 2 months I had completely given up and welcomed a swift death. Give it more time. After 1-2 years you'll have a better idea of what you're gonna be left with. Just pass the time and let the ears do their thing. Cochlear damage isn't always permanent, inflammation can take ages to resolve. @FGG has a great theory on this.

Third: I took an interest in studying WW2 and other modern conflicts of war. I found myself feeling guilty for letting my own hearing problems tear me down, when guys came back with absolutely DECIMATED hearing, and all the rest of it. I tell myself, if those guys can come back and raise families, work in factories, then I can push thru this shit too. Makes me feel a lot less alone and helps embrace the suck.

You're still in very early days, so don't make any rash decisions. You sound like someone with a lot to lose. You're making disgusting money for a 28 year old, in what I can only presume is a relatively quiet white collar environment. And you're in the position to afford regenerative medicine when it all hits the market in 3-10 years (FX-322, OTO-413, PIPE-515). I'm 27 and my income was roughly $35k before taxes, and I left my job under the guidance of forum members and hearing clinicians alike because it was actually noisey.

What was the source of your acoustic trauma, and do you have a history of noise exposure? We might have an easier time mapping out your recovery if we know what kind of SPL in dB's you were exposed to and for what duration.

Hang in there.

 

Thanks. Re the cause it is hard to say honestly. I had some sort of cold/virus, then got microsuction done. I noticed a small noise right after that but didn’t even think of tinnitus. Then I was walking a few weeks later and a train horn went off very close to me. I believe the virus/microsuction did some damage which would have gone under the radar, and a big blast from the train kicked everything off. A few days after that I developed tinnitus which is scarily loud in a quiet room, so much so that I have to leave, plus distortion of noise, and light hyperacusis. Only mild pain but lots of loud noise sensitivity.

Honestly I just feel like I went from 0-100 in a matter of days, and I’m completely on the edge of losing it. The noise is so loud and intrusive I started speaking with my family about moving somewhere I can be outdoors most of the time, and I’m on disability from my job. I also started on Mirtazapine as a sleep aid and to help stabilize. Tried Nortriptyline which didn’t help, and my psych wants me to try Xanax. I know the stats - most get better and some don’t - I know no one can prognosticate, it’s just honestly scary as hell and I haven’t had a good day in 2 months.

 

I second the sentiment that between your age, semi-straightforward cause, length of duration, wealth, and regenerative medicine in the pipeline, you are the prime person to not do anything rash.

 

Life with tinnitus isn't easy once you get into the moderate severe range, but it doesn't mean your life is over or that you cant enjoy life. If you work in a quiet environment, see if you are allowed to play music or soundscapes to help distract you from your tinnitus. Try and ask your job for a reasonable accommodation to help with your situation.

 

Thanks, although every day I have ear splitting whistling... I’m not even sure what FX-322 would do for me - I don’t have hearing loss on an audiogram. My best guess is nerve damage so maybe if Hough Ear Institute is successful, but that’s in 6 years. I know I sound like a downer but I am in pain every day.

it’s depressing to hold out just for a chance at improvement when things are so dire. Also I know you are in a similar situation albeit with very different circumstances.

 

My tinnitus is severe; I hear it over everything except the shower. Plus, I have TTTS type symptoms where I have some sensations inside my ears. My job involves a lot of reading and analyzing (reading submissions from lawyers), writing, quantitative analysis, using software, and doing calculations. For the first eight months or so, I was basically a zombie at work since I was sleeping about 2 to 4 hours a day. You can imagine. In fact, I thought about taking time off but everyone including doctors told me to push on. During this time, I was also helping my church weekly on slides and other multimedia stuff. Now, I'm doing much better, but I have unproductive moments. My cubicle area is very quiet so unless my work takes my mind off the tinnitus, I can go through a slump. I've been thinking about purchasing maskers for a long time but have not bought any so far. Thankfully my job doesn't have too many immediate deadlines, and I can kind of set my own schedule so that helps a lot. Most of the time, I work solo and only need to see my supervisor about once a week (except during deadlines where it could be numerous times a day).

 

You aren't kidding. Honestly, I have a few rational reasons to keep holding out, but a lot of it is just a fear of death, fear of suicide, fear of failing suicide, fear of ruining my loved ones' lives, etc. The crazy part of my story is I still don't know what's damaged in my inner ear. It's possible that I have nerve damage/inflammation and little (maybe even no) hair cell death. I have found a doctor that is throwing compassionate use immunosuppressants at me, so certainly I'm not dreaming of actually committing suicide anytime soon, even though I have thoughts. I also plan on cycling through mood stabilizers next. I do believe that suicide can be a form of compassion, but a hell of a lot of people commit suicide impulsively. I never want to be in that situation.

I know this sounds absolutely horrific, but a big reason why I am holding on is a belief that eventually, the hearing loss will be significant and central gain (hyperacusis) won't be possible anymore. I am fortunate in that I have the kind of personality to have a life worth living in silence. I like to read, study, problem solve, etc. I am not an extrovert. We will see.

 

In my case, the volume of my tinnitus varies by day (sometimes louder than others), and I am definitely less productive on the louder days. I'm not sure there is anything I can do about that.

Another challenging aspect has been the following. Before I had tinnitus, sometimes my mind would chew on problems even when I wasn't thinking about them - and this would help me come up with good solutions to things. Kind of like when you get an idea in the shower. Nowadays when my tinnitus is louder, this just doesn't happen, because my mind is on the tinnitus rather than on my work. This seems like an especially hard problem to "solve," given that what my subconscious mind chooses to think about is not really in my control.

FWIW I would classify my tinnitus as either mild (on good days) or moderate (on bad days), but never severe. I'm very much hoping your tinnitus calms down over time.

 

You just have to rearrange your whole life around tinnitus or hyperacusis, as it can take months or years to get better, but it can worsen in just a second.

So if your tinnitus is recent, it is best to slow down and take things easy, try to live a simple life in a quiet place. Try that for a year or two and see how it goes. For me that was the best course of action and in the end it paid off, as I could survive the worst years with severe hyperacusis.

Trying to carry on, and trying to survive, around noise, in a big city, working stressful jobs, having lots of obligations, being under financial pressure (high rents, high property prices etc), working long hours... all this is a very bad idea, as it will ramp up stress levels and make tinnitus worse, and chronic.

 

I have moderate tinnitus but enough hearing loss and bizarre unsettling distortions after ototoxicity that it was too difficult to continue my job. I have really bad visual snow now too which doesn't help. In fact, I had to quit my entire career of 15 years as a veterinarian.

I now support myself with an online reselling business. I work with a partner and we each have our niches. My partner's niche is gaming and he makes decent money buying broken gaming consoles for around $20 each and then fixing them (9/10 it's as simple as cockroaches got in the console) for $100-200 profit each.

This can be done with things like Facebook market, eBay, etc even without leaving the house. You can buy things at auction on eBay that are selling too low (usually listed at an odd time like middle of day, middle of week) and then get it shipped to you and resell it at a much higher "Buy It Now" price. We got the whole business off the ground doing this with sports cards to start.

It's not a dream job. It's not what I devoted my education and 15 years to but it pays the bills a little more than disability pays (without the hassle).

I'm waiting for regenerative medicine to help me and if not, I don't have a lot of interest suffering through the rest of life but for now while I wait, staying busy helps.

Anyway, whether it's reselling or something else, there are ways to make money from home and for some careers, they can be done entirely from home in a controlled environment (mine just wasn't one).

 

First, look up RL-81 which is promising for tinnitus regardless of hearing level.

Secondly, I was like you 9 years ago and took something like 4 years to get used to it and stop wanting to kill myself. However, I'm back to square one after worsening.
I'll be honest with you, if you have the progressive type tinnitus, your life is over as you know it.
Hopefully it's the stable or getting better kind.

 

Although I know we’d all rather be somewhere else, from the limited amount of time I’ve been on here I already know you are a badass and an invaluable contributor. I appreciate you weighing in.

Also, do you have any theory on the mechanism of distortion? I have it bad too and am not sure if it’s damaged hair cells or damaged synapses/nerve, would be curious what you think.

 

Thanks, I had it very minorly once before and it went away. Now it’s back after I allowed myself to be in a somewhat dangerous situation. Hoping it slowly fades again as my life kind of depends on it. Also went from one ear to two so that is a profoundly greater level is suffering...

For you, did the actual tinnitus get better or did you just harden to it the first time?

 

That makes sense - I’m pretty much in constant severe territory though literally for hours at a time it has dipped to moderate before ramping back up. It still currently changes pitch, sound, frequency (continuous vs pulsing), really everything, but 95% of it is horrible...

 

That’s pretty admirable - I really feel like you’re a strong person!

 

Thanks, my problem is I also have hyperacusis / reactive tinnitus and distortion right now so it’s just tough. I can’t really “mask” in a traditional sense. If I could I don’t think I’d consider my condition life threatening, which justified or not I currently do.

 

It actually got a bit better + hardening.

 

My distortions are multi factorial. Macrolide ototoxicity is relatively rare and very poorly understood. I can't hear anything over 12000 Hz at all in either ear or below about 100 Hz (thunder sounds clipped and bizarre). I have severe increasing to the cochlear base profound damage in my ultra high frequencies and I also think I have more diffuse IHC damage, too.

Macrolides are also completely unique in that they also seem to reversibly damage the stria vascularis (but in my case it seems to have been irreversible). I think this is a factor for me because I do respond somewhat to Aldosterone treatment (makes my remaining Na/K pumps more efficient), I can kind of hear down to 70 Hz when it's very loud when I'm taking the drug and can't without it (my tinnitus however is high frequency from hair cell loss so the Aldosterone doesn't do much there).

I also have difficulty localizing sound, and cannot watch TV without captions (though in person I can converse pretty easily).

All music sounds horrific and in fact these are my worst distortions (and the thing that saddens me the most because music was a huge part of my life). Aminoglycoside antibiotics can occasionally affect the KV3.1 ion channels in the brain stem by binding to them and distorting their structure (and function). Macrolides are theorized to do the same and, as Kv3.1 is needed for "dynamic sound," I wonder if this is part of my issue.

In your case, i don't think we have similar structural issues but hearing issues are incredibly complex and there is a lot of overlap. Oh and as others have pointed out, inflammation can cause some of these problems initially. Some of the most alien noises improved for me initially. As you are still very acute, it may get a lot better for you. ::fingers crossed::

 

If it constantly changing pitch, etc. this could be a good sign as opposed to 100% 24/7 non-changing... I would say up to 12 months for it to settle down.

 

I still think you should discuss with HR about them helping you figure something out so you can work and also be "comfortable".

 

@GBB it went away entirely? How long did it take?

 

Thanks, I will likely do that. The thing is I am subsisting now just by staying outside and it’s still tough. I think in theory I could work remotely and work outside where my tinnitus is still audible but bothers me less, but I’m still in such a state of severe discomfort I would be really limited on effectiveness. Honestly I’m basically hanging on by a thread right now - but trying to pull out all the stops for some improvement (e.g. supplements, fasting, laser, witchcraft). I really need some improvement for life to be worth living

It really bothers me that I can hear my tinnitus outside - I think a month ago this was not the case, though it may have been due to cicadas/crickets which are now gone.

 

I was really lucky - it was only really obvious for a few months in silent rooms - then I noticed all of the sounds kind of got a fizzy or muted effect to them, so like the pattern of pings I would get would instead sound like atonal pfff pfff pfff which was much softer and easier to handle. I think I had it in the only hear it when I put my head on the pillow stage after a few months, and then I just sleep with a fan so stopped keeping track. One day I noticed I didn’t need to sleep with a fan, and could hear silence. I think all told it took about 3 years, during which I continued to use headphones at reasonable volume, and was exposed to normal noise. I’d give anything to go back to that tinnitus now - it was actually relaxing as it just sounded like very quiet ambient noise that was never intrusive at all.

I would say the loudest it ever was was still quieter than what I have had now for 2 months straight.

Microsuction really beat up my ears, and hurt quite badly when it was performed. Stupidly I didn’t think twice about it - I had never had any problem with my tinnitus whatsoever so was not cautious/guarded.

Also, I only ever had it in my right ear, whereas now it is in both, and high pitched like a dog whistle whereas before it was lower.

Prior to this things were really starting to align for me - I had just been offered a very lucrative dream job and was looking forward to helping out my family and getting onto the next stage of my life. Now I have spoken very openly with my family about going on long term disability, how I will save enough money to live, where I can move to that has crickets year round to mask my tinnitus, and just generally suffering through each day.

 

@GBB that’s amazing it faded the first time. I need silence again in my life. And I hope for you too!!! I hate everything about this.

 

I should also mention I took chelated magnesium basically every day during that period as I read it was good to prevent further damage and also could help heal. I don’t know whether it changed anything but it was per of the mix.

 

@dan this is the worst experience of my life

 

I hope for both of us it is relegated to an experience, and not simply, our life.

 

@GBB I'm taking Magnesium too.

 

@GBB I like to believe it’s temporary.