So This Is How It's Gonna Be?

[Tempest]

Hi!

The following text will be pretty negative in nature so sorry about that, but I just need to vent.

Here's my story:

I'm currently in my 20s and, had my ups and downs. I've always been interested in audiovisual things ever since I've been a kid. I've done graphics, editing, camera and audio related stuff for over 10 years now, first as a hobby and now as a profession. Most of my free time was used in learning more about this stuff and I've also been a person who likes to be alone and enjoys silence.

Not sure if this is a sign of OCD and being on the spectrum, it's possible, but then again, lot of people in my field are little weird and perfectionists. For many years now, every time I would watch a TV show, in back of my mind I would analyze it as well, the camera work and editing. Same goes to audio and music, so I'm an audiophile and had "trained" ears.

So everything was fine and dandy until two months ago I agreed to go to a family member's concert as a camera man. Ironically, even though I've worked with audio for many years now, I've never attend a lound concert, so I didn't know what it could cause. There were earplugs present, but I wasn't told about them until it was too late. So what ended up happening was that I lost hearing from my right ear for a bit while photographing, it came back right away, but with morse code tinnitus. At that exact moment, I knew deep down that I figuratively just killed myself in the most ironic and tragic way.

Next morning I could tell I had lost some hearing from high frequencies and beyond, even without hearing test, because my trained ears could tell the water from the shower didn't sound right. And in music, some instruments that were meant to be in the center, are now panned to the left. And the music in general now sounds flat. Also, as people speak, their S sound more distorted, probably due missing frequencies.

After all this happened I've done 4 different hearing tests and 2 HBOT sessions.

Now let me give you my opinion in general about hearing tests: they're pretty poor and cheap way of telling if you have any hearing loss and they cannot detect if you have hidden hearing loss. First of all, most of them are only up to 8KHz and that range only covers speech range and some everyday noises. Though, if you have worked with audio, you know there are so so much more information beyond 8KHz. That is where the clarity lies, the space and the tails of things.

So back to my results, I did do 4 different hearing tests (all of them being only 8KHz) and all came with different results. All, but one had hearing that was in the normal ranges and it was the first one. It might be that my hearing changed along the way, but I think it has more to do with poor headphones which is yet another complain of mine. All of the places I went to, all used different headphones and some weren't even fully noise cancelling. So it's kinda shocking how unregulated it was, because it can effect if you get -10 or -30 on some of the ranges and ramifications of that.

Also, what comes to HBOT, I'd say it's yet another snake oil and money grab for naive desperate people (like I was, I did two of them, but had to stop due side-effect scare). Did really nothing for me and I don't think it would have helped even if I would have done 20 of them. The reason why I say this is because everytime someone talks about its efficiency for hearing loss and tinnitus, people recycle those same few studies, especially the one from 1998. Or they heard a story about someone who was cured or they were told by the HBOT clinic itself. As far as I know, there's not a single first hand story of a person whos tinnitus was directly cured by HBOT. Of course the clinic itself will tell those stories and advice you to do those expensive sessions, because it's a business and they don't want to lose that.

But enough of that. Back to present, my hearing is still bad and I still got tinnitus. Thankfully it's quite silent, I can usually only hear it in a silent room. Morse code on my right ear and low tone inside my head if I cover my ears. Though that tone can be heard sometimes even if I don't cover my ears.

It's bittersweet how ironic this all is. I can no longer enjoy my hobby, music or watch a TV show because it just reminds me what I've done to myself. This has also made things with my family kinda akward and even though they keep trying to support me by telling that I should keep doing my thing, I just can't. At this point, I cannot just untrain my brain or keep doing stuff at a lower level, because it's just way too painful, tragic and depressing.

I don't really get relief from anything anymore. Talking does help, but it just feels like taking a deep breath until your head is put under cold water again. I've been a person who likes to be alone so it's really weird that only relief I now have are other people, but I can't do this forever.

After two months, this still feels like a bad dream. I'm currently on meds and have professional help for the time being as my life is on-hold, but I know my only hope is the new research being done for hearing loss, otherwise this will be the end of me.

I know this is what nobody wants to hear, especially when just getting tinnitus and/or hearing loss, but man, it does suck.

Anyway, that was my story.

 

[Joel Waterman]

Tempest,

I'm very sorry for your loss. I've never had my ears trained like you have, but I also really miss and long for the ability to be able to experience silence.

I know you mentioned some research on hearing loss, and I just saw this article about some potentially hopeful research about regenerating hearing:
https://www.businesswire.com/news/home/20171221005185/en/Frequency-Therapeutics'-First-in-Human-Safety-Study-FX-322-Hearing

I hope that you will be able to over time adjust to this unless/until they find a cure, and that you'll be able to once again enjoy sounds from music, TV, ext. even with the hearing loss and tinnitus.

Whatever you do, never let a doctor/nurse syringe your ears(flush them with water) to remove ear wax, as many people who do this themselves or have a doctor do it get much worse hearing problems. This procedure is unsafe, and it's a tragedy that not all doctors yet realize it. My tinnitus used to be more like yours, and then got severely worse when I tried flushing my ears out.

Tinnitus is sometimes temperary, and since it's only been 2 months for you it is possible it could go away. Although, even if the t goes away, I'm sure the hearing loss will certainly still be tough for you. Hopefully the hearing regeneration research will prove successful.

I hope that you can figure out how to cope and try to stay positive despite your loss. The ability to adapt to whatever challenges/losses life throws at us is very important, though very difficult. I've been dealing with louder t and hyperacusis (sensitivity to normal sounds) lately, and it is an every day struggle to try to see the positives in life, and adapt to my new challenges.

All the best of wishes to you in dealing with your challenges, and I'm sorry you're having to deal with this crap.

 

[Bill Bauer]

As far as I know, there's not a single first hand story of a person whos tinnitus was directly cured by HBOT.

Nobody is ever cured overnight. It is a gradual process that takes many months or even years. HBOT might place one onto this track to healing. It will never be clear whether or not one has been on that track all along.

 

[Tempest]

All the best of wishes to you in dealing with your challenges, and I'm sorry you're having to deal with this crap.

Thanks Joel, everyday is a struggle, but I do try to find some positive light, even though it's hard. Tinnitus itself is already hard, but having to cope with losing your hobby, your dreams and music is just too much. If it wasn't for the news that there is hope for recovering hearing loss, I'd be gone by now since this is no life. I really hope Frequency Therapeutics are successful with their trials, because otherwise I don't think I can make it. Though, even if they are, the waiting itself will be a battle of wills.

Nobody is ever cured overnight. It is a gradual process that takes many months or even years. HBOT might place one onto this track to healing. It will never be clear whether or not one has been on that track all along.

Yeah, I know where you are coming from, but have we actually heard from anybody first hand who had done HBOT and their tinnitus went away at some point? I haven't ran into anybody like that, it's always "nurse from HBOT clinic told me about this one lady..." type of deal and I've done some heavy searching on HBOT. And that's why I think this is yet another snake oil and I would advice you to save your money.

 

[Joel Waterman]

I really hope Frequency Therapeutics are successful with their trials, because otherwise I don't think I can make it. Though, even if they are, the waiting itself will be a battle of wills.

Tempest, I too really hope that Frequency Therapeutics are successful.

If they aren't however, there's still always a chance that new research could achieve the goal. Medicine and technology keeps advancing every day, more resources than ever before are being used to study T and hearing loss, and we never know what discoveries might be made on this front in the near future.

Gotta keep in mind that there's always still hope in this area, and whatever disappointments might arise, never give up 'cause there's always a lot of potential and possibilities still out there.

 

[Bill Bauer]

have we actually heard from anybody first hand who had done HBOT and their tinnitus went away at some point?

All of the soldiers in one of the studies listed on
https://www.tinnitustalk.com/threads/spontaneous-recovery-stats-over-70-recover-3-studies.21441
had HBOT done, and most of them had recovered.

 

[Dana]

So you did not have an audiogram above 8khz, to see what you have lost in those higher frequencies.
I would suggest to try to have one, the sooner the better. Although you may not like the results, it may relief some anxiety. At least you would know where you stand. Or the results may be better than what you are expecting In both cases your spiralling downward will stop.

It's bittersweet how ironic this all is. I can no longer enjoy my hobby, music or watch a TV show because it just reminds me what I've done to myself. This has also made things with my family kinda akward and even though they keep trying to support me by telling that I should keep doing my thing, I just can't. At this point, I cannot just untrain my brain or keep doing stuff at a lower level, because it's just way too painful, tragic and depressing.

This phase will pass, what you are saying above is perfectionist talking. In time the love for what you do will win and you will accept to continue anyway. Beethoven composed great music while he was deaf and he also had tinnitus. You will adapt.

This happened only 2 months ago. Right after getting tinnitus, one is measuring what he lost and analyses what he cannot do anymore. This list in time turns to be incorrect, too pessimistic. Some things that a person thinks he won't be able to do anymore will become possible in time.
If the person believes too much in the list he quickly makes with things that he cannot do, a negative self-fulfilled profecy will happen.
Right after getting tinnitus is the worst time and the person sees the situation in darker colors than it is.
Although you think that it will always be like this, the truth is that you cannot predict how it will be in the future. There is the ability of the brain (with its auditory system) to adapt, and you did not take that into account.
You will see that the future will not be as bad as you think it will be now, when you are still so upset because of what happened.

Do not jump to conclusions yet.

Also, as people speak, their S sound more distorted, probably due missing frequencies.

But their "s" , with all their tails and space, do not contain frequencies above 20khz, they are up to 8kz, speech is around 4khz if am not mistaken, so , if they sound distorted, it may be due to another effect of a recent loud exposure, not lost frequencies. Although it happened two moths ago, the event is still recent, you are still shaken from what happened.
You may recover from this effect of hearing the "s" es distorted , in time.

I'm currently on meds and have professional help for the time being as my life is on-hold, but I know my only hope is the new research being done for hearing loss, otherwise this will be the end of me.

Not at all. You will recover, you will adapt.
If you are on meds and professional help that means that you can't you even think straight, you are overwhelmed by the negative emotions. While being so emotional people cannot see things how they really are. You have to have perfect emotional balance in order to think straight, in order to make an accurate list of what you have really lost and not exaggerate. Now you think it is the end of the world, or the end of you. No way!

Give it some time, if you can put your life on hold try to put you negative thoughts on hold too, to leave what happend behind, do not think of the consequences, they may not be as bad you think now. Try to think about other things, unrelated to what happened. Try to lift your mood by anything that you know that it would bring you joy. I am sure there are some left.

All the best.
Stay positive and optimistic about your recovery.

 

[Vincent R]

Tinnitus itself is already hard, but having to cope with losing your hobby, your dreams and music is just too much.

Whether you consider your life meaningful or not, you're going to keep exist, and you'll have to do something with your time. You may want to consider what that something will be.

 

[sjtinguy]

Thankfully it's quite silent, I can usually only hear it in a silent room

Consider yourself lucky that it is not worse. I had this level of tinnitus for a long time and I largely forgot about it. You are young and will likely heal to the point you don't even think about the ringing. Your ears will retrain themselves as well. If you don't find sounds physically painful, you can immediately start retraining your ears by listening critically to music and other sounds.

 

[Tempest]

Little update.

After Xmas I've developmented, which I believe, is a new noise which sounds like that high pitch noise coming from an old CRT. Also I've had a few cases of hyperacusis which comes and goes. Oh well...

So you did not have an audiogram above 8khz, to see what you have lost in those higher frequencies.
I would suggest to try to have one, the sooner the better. Although you may not like the results, it may relief some anxiety.

Yeah, I will be having through and through exam next month. Though I'm already prepared to hear "Sorry, there's nothing we can do".

But their "s" , with all their tails and space, do not contain frequencies above 20khz, they are up to 8kz, speech is around 4khz if am not mistaken, so , if they sound distorted, it may be due to another effect of a recent loud exposure, not lost frequencies.

Yes, but the thing is that even though speech is around 4-8KHz, it doesn't mean that it caps or ends there like a brick wall. Yes, most of the information is around that area, but it goes beyond 8KHz. And that can be proven by recording your own voice and throwing it into a software like Adobe Audition (mine went up to 12KHz). But if we are talking about "s", yeah, it mostly fades or ends around 8KHz which I do have the most hearing loss according to audiograms so that would explain why the "top" of s sounds distorted, especially when women talk.

Though I did also notice when doing a tone test while trying to find my T frequency, I do have gaps around 8-12KHz area so my wild guess is that's where the damage lies. I still hear up to 16KHz last time I checked so I guess it doesn't always mean that when you get exposed to loud noise, you lose the highest frequencies first.

Give it some time, if you can put your life on hold try to put you negative thoughts on hold too, to leave what happend behind, do not think of the consequences, they may not be as bad you think now. Try to think about other things, unrelated to what happened. Try to lift your mood by anything that you know that it would bring you joy. I am sure there are some left.

What I've learned so far is that no T case is the same and everybody has their own life situations and that's why some people can manage it and other's cannot. I think for musicians and people like me, it strikes the worst, because audio is such a crucial part of our life. For others it's not. It's amazing how much one audio accident can mentally fuck you up for good. It's not only T or hearing loss I have to deal with, but the trauma also.

Biggest reason why I'm really depressed about this and some what suicidal is the fact that even if T would go away, I know it still wouldn't be enough, I still would want my hearing back. And even if my hearing would come back, I still would live in a constant fear on noise from that point on (okay, this one I could somewhat take and be happy). So I feel I'm basically deemed to be depressed and traumatized by this event for the rest of my life.

I know the fastest way to recovery would be accepting this, but that would also mean that I would need to forgive myself which I just cannot do. Maybe due time...if I ever make it that far. At this point I'm just so depressed that only joy from life I get is the dreams I'm having where everything is still okay and those 3-4 seconds when you wake up foggy until you remember "oh yeah, I chose the bad ending". Then I manage to stay alive and not hurt myself for the next 12 or so hours so I can sleep again, repeat this until a cure is found. Not healthy, I know. Maybe the meds start to kick in at some point and I would have at least some energy to do something or at least be fooled to feel happy. Oh well, one thing this experience has taught me at least is why people do drugs.

That being said, I still do appreciate everyone's support!