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

You had a transition from tonal to hiss right? That happened for me before leaving.

 

I hear you my dear Tara...

 

@GBB no hissing, it’s just all over the place but it seems lower when wearing ear plugs so I hope that means it’s fading.

 

@dan I wish I had known about tinnitus before my years of headphone use.

 

We all did things we regret, but yours is fading so you get a second chance, even though tinnitus may not completely go away, low tinnitus is no tinntus.

 

Hang in there! Over time you may develop some habituation which may help your situation.

 

What does that mean??? You want your hearing loss to get worse so all you hear is tinnitus?

 

I have hyperacusis so bad (severely disabled, can't whisper, take off earmuffs, leave my house, tolerate any sound at all etc.) that in my mind, being unable to hear well, but having the ability to be around sound would be better. This is obviously an irrational fantasy, conjured up from the depths of hell. Hearing loss would suck majorly as well.

 

OMG. How did this happen? Noise trauma?
EDIT: Nevermind, I read your story.

 

Mine got worse after initial onset 2 months later. I had occasional fluctuations in which I could tell tinnitus volume reduction. It was significant when it happened but my ears haven't been the same since.

So, it's just getting worse. I think ultimate suicide is my only recourse. Eventually, I will just try to do it.

My severity is so bad. Loud and intensity of tones. I don't know how to describe it but it's torture. I don't think too many here have it that bad as I keep reading of people here traveling, working, etc. etc.

People talk about not hearing it in the shower or outside. Nothing masks mine. On "good" days, cicadas and outside noises help a little at night. But, so what?

The research threads are depressing. I don't think there's anything on the horizon. No one even knows what actually led to the tinnitus - nerves, hair cells, loss of hearing. What about the relationship with the brain? I can't even tell which ear is worse for the tinnitus and it seems the tones are ringing in my head/brain. I wish euthanasia was legal here.

It's difficult to plan a suicide, imho - at least, for me. Death is scary plus possibly failing and the result. But, I think ongoing tinnitus at this severity is not worth living with. Especially, if it's inevitable that it will get worse. It's already 10/10 severity. I don't want to wish I was dead every day. At some point, I will try to end things.

 

I have total understanding of every word.
The only way I can cope is with ‘stoical acceptance.’
A torture that the world in general knows nothing about.
We are unsung heroes.
My heart goes out to everyone of us.
The practice of meditation helps me to hang on to my sanity.

 

Hey just wanted to ask whether you had tried AD’s - Nortriptyline seems to have helped reduce my volume, though it is still very intrusive.

 

@PeteJ do you hear your tinnitus while in the shower? How loud does your shower register on your phone?

 

That's actually very creative!

 

For me localizing sound was one of the first abilities lost to hearing troubles. Do you remember the old Nokia cellphones that only had one ringtone? And there would be phones ringing at a meeting and I was like... it's obvious that lady's phone is ringing, but everyone was reaching for their own phones, just in case... that was when I was still able to localize the sound source... fortunately, today we have infinite options for ringtones

As for captions, this has happened to me very recently, this year... the result is I seldom watch TV anymore, as I find it annoying, you know.. reading captions and getting chunks of sentences and random words. For me it is more about the quality of sound of a certain movie, or TV show, also the layers of sound in a movie (like noise or background music, make it harder to understand). News are best, and also people who speak slowly...

I am curious about your audiogram, because you don't seem to have a lot of hearing loss, if it is all above 12 kHz (it wouldn't even be tested normally) or below 100 Hz, at the lowest end... in theory the lower-middle frequencies are the most important to get speech etc... although TV has a particular quality to it... being one of the first signs of hearing trouble.

 

I hear sooooo much worse and distorted than my audiogram suggests. But Macrolides ototoxicity is weird and affects things like the Na/K strial ion channels and the brain stem as well.

An audiogram does not tell you about sound quality, it's a binary "yes or no" for hearing a tone. Weirdly, I passed my speech in noise test fine too but as I said I need captions for TV.

Like you, I have an easier time with News than anything with background music or noise.

 

I understand what you are saying, as my audiometric test was ok until it dropped in the lower frequencies, and this was enough to make me perform poorly in the speech in noise test (maybe 60% of right words, versus 95% 6 months before). The audiogram did not change that much really, maybe an additional 5 - 10 dB less in the lower frequencies, but this affects speech recognition so much. It is like now sounds merge and it is hard to distinguish several sources of sound...

As for music, right now I am listening to The Rolling Stones, Exile on Main St, which was one of my favourity albums, and it sounds more and more like cats and people banging on pans... hehehe... well, I still try to be happy with whatever... there's not much to do about it.

I would like to find out more about why TV is one of the first signs of trouble with hearing. This is routinely mentioned on all the "warning signs" lists of "go see an ENT and get your hearing checked"... trouble understanding TV.

 

I will probably update the Aldosterone thread soon but it seems that it is helping my low frequency hearing (has no effect on my HF hearing or tinnitus). The theory (in my case) is that it makes my remaining, undamaged Na/K channels more efficient. In any case, the apex is the most flexible part of the cochlea and the larger the mechanical force produced by the base-heavy sounds, the better you can hear. Aldosterone seems to help (in my case and a few others online I have read) potentiate this effect with better fluid ion distribution.

The doctor I spoke to that prescribed it told me that he has seen it help some esoteric cases (he admits it doesn't help most people but some people it helps enough to see significant low frequency audiogram changes) with low frequency hearing specifically. Message me if you want to know more about this.

 

It sounds very technical. You are really reading a lot about hearing and its mechanisms...

I think I just lost faith on a possible cure, or medicines... I just try to keep a healthy lifestyle, although I do miss a lot of the things I did before, and particularly the possibility of just going out anywhere without having to plan for a sound map to navigate...

I wanted to go to Budapest this year and had to postpone it due to COVID-19.

I am going to look up Aldosterone.

 

FGG, why did your doctor prescribe Aldosterone? I read this is a drug for endocrine disorders. Is it an endocrine doctor who prescribed it? How is it linked to tinnitus?

Another topic: how can you make money reselling stuff you bought on eBay? I mean, how do you deal with shipping cost? Wouldn't they eat most of your profit?

 

The Aldosterone is normally used for things like Addison's disease but I don't have that. He was not an endocrine doctor. He was a Canadian GP who had used the drug occasionally for "more esoteric" hearing issues. I'm not Canadian but he had a telehealth consult with me.

It's not specifically linked to tinnitus and hasn't helped mine (which is high pitched) but it has helped my low frequency hearing some (I will update the Aldosterone thread in a few weeks because I continue to get some improvement).

In my case, Azithromycin damaged the Na/K transport across the stria (among other things) and I was hoping to make what I have left more efficient. I had one of the rare indications that it is clear it might be helpful (the other is hydrops).

Aldosterone mediates an increase in [3H]ouabain binding at Na+, K(+)-ATPase sites in the mammalian inner ear

The reason it hasn't helped my high frequency hearing (and won't) is because I have massive hair cell loss in those areas.

Re: eBay. Shipping was a huge learning curve and my business partner and I have learned a ton. Simply put, though, we had to concentrate on low weight items for about the first 5 months (like I said, we started with sports cards). For larger items, there is a lot more thought that goes into it, but as shipping is expensive you want to focus on items that make a huge return on investment and FedEx the larger items. There is way more to it than that and other shipping hacks but I don't want to take up this forum with that. Feel free to message me if you are interested in doing this yourself.

 

Do you have any good moments left in your life? Or are you doing nothing but "holding tight" onto your sanity?

 

Hi Sevv.
I’m okay.
My life as a damn good jazz trombonist has been snatched away from me.
I loved my life - I would have played up until the day I died.
I loved picking out the particular faces in the crowd who were picking up on my jazz persona.
Such a joy.

But I am determined to survive this thing.
We have to become philosophical.
That life has gone.
Of course I know that.
I can never take my beloved horn out of its case again.
My wife, kids, grandkids, are all wonderful people.
I cannot let them down.
My meditation each morning helps me to acclimatise each day.
The noise is always there, but I tend to ignore it.
Whenever I am ‘head busy,’ - writing, reading, listening to debates on YouTube (I love Richard Dawkins, Christopher Hitchens etc...) I am not always aware of it.

So - I do miss the artistic creativity,
the ‘joie de vivre’ I used to have,
but I have found a way to cope
and things to live for.
I hope all this makes sense bro...
Dave x
Jazzer

 

I see, thank you for the long answer.

With each worsening I have also moved away from the joie de vivre to just being/accepting. There are good moments but it's a bit exhausting. My main problem is that I don't have a lot of drive because I am convinced that it will only get worse because I've had too many setbacks in a short time. I am traumatised and I feel like an old man waiting for the final blow. It's difficult to stay motivated this way for anything.

 

I feel the same - like I'm very fragile and it is inevitable I will break, it is only a matter of when and how...

 

You are really new to this. Most of us have been in the position you are, and most of us are still here fighting the fight. It ain't pretty, it's life.

I was in a dire state the first 6 months, but then very gradually things got better. Don't get me wrong, I hate this SOB in my head/ears, but I am dealing with it as best as I can. It sucks, but what choice have I got.

 

Did you file for STD, and if so what kind of evidence did they ask for?

This has been an important open question for a long time, i.e. whether it is possible or not to make a successful claim for tinnitus.

 

I did file through my employer - not the government. I had an ENT note tinnitus and hyperacusis. Still waiting to see what happens with the claim, but currently am not working. We have a private insurer who will need to review.

 

Gotcha. Know for SSI claims they ask for evidence of hearing loss, which of course doesn’t show up in the slightest on audiograms for many of us, myself included.

But private insurance is different. Good luck.

 

@GBB, tinnitus ruined my whole year. How was I “normal” one year ago, or for my entire life actually, and I’ve been dealing with this? Any issue I had in my life is NOT an issue, now that this happened. I HATE having noise in my ears. Omg. Loathe it. I’ll be forever grateful WHEN this goes