I Don't Know What to Do Anymore — Sacrificing Everything to Prevent Tinnitus from Getting Worse

[grime]

I don't want to make another gloom and doom post, there are enough and they're probably scaring the shit out of people who don't need it. But I don't know who else to go to about this and it's eating me alive. I guess I just want to see if anyone has been through similar motions of having to sacrifice everything you love just to prevent it from getting worse.

When my tinnitus started it was out of nowhere, I just woke up one morning to a nice "EEEEEEEE" sound. I'd had it before from loud concerts, so I knew what it was immediately, but now it wasn't from a loud concert. I had no idea what it was. No idea of the cause, and even less of an idea of whether or not it was going to go away.

In the past couple weeks I've been making extremely slow progress with doctors to find a cause, until one of them eventually "revealed" that I had a perforated eardrum, and that the whole thing would likely clear up when the eardrum healed. But today I've been told what to me is more or less a death sentence. I finally met up with an ENT after a month of trying to get a hold of one, and I asked about the tinnitus and about whether or not it would heal from a perforated eardrum. He told me there wasn't even a perforation there at all.

That, I guess is to say, that it probably wasn't from infection, and it most likely is never going to go away.

To a lot of people that would suck but they could live through it, but I feel like I have sort of a particular case. Most of my life I was suicidal. I found practically 0 enjoyment in anything in life and had no idea how to until i went to college and started using soft drugs. Caffeine, weed, and LSD have been the only things that keep me going for the past 2 years, and now because of tinnitus I have to give them all up if I don't want to make it worse. Music, too. I've heard nothing but "don't wear headphones for very long and keep it at a low volume". I usually wear them all day. All these things were my only release. The rest of my life is fucking infuriating, and now because of this stupid fucking ringing that won't stop and never will I have absolutely no release. No catharsis. I don't know what to do. I don't know if I even want to go on, but I don't want to kill myself either because some part of me has completely obligatory hope (or I'm just scared and don't want to accept whats really happening).

I guess what I'm saying is tinnitus has ruined my way of life. I have no inclination of where to go from here and where to find enjoyment, and I'm furious that as soon as I turn 20 I have to live the lifestyle of someone who's 60 where all i can do is sit in quiet rooms and read books.

Has anyone else felt similar? Had to make huge sacrifices for the sake of this stupid, evil fucking sound?

 

[sirhand]

Tinnitus sucks, but you're in the early stages. In time you'll be able to use coffee, weed, LSD and headphones again. Just be careful with the headphones, take breaks during long sessions.

 

[Wolfears]

Tinnitus sucks, but you're in the early stages. In time you'll be able to use coffee, weed, LSD and headphones again. Just be careful with the headphones, take breaks during long sessions.

I have no issues with LSD or weed, but using any headphones may not be the best idea, even if his tinnitus does go away...
That could be one good way to bring it back, even if he "takes it easy".

 

[Zeneth]

Tinnitus sucks, but you're in the early stages. In time you'll be able to use coffee, weed, LSD and headphones again. Just be careful with the headphones, take breaks during long sessions.

If my tinnitus ever went away I would refrain from doing anything that could bring it back.

 

[robHing]

Please be patient with your tinnitus.
Try to habituate it. Don't think too far.
Try to live one day as a step forward ...

I do firmly believe ... ( in your life time )
There will be a cure of tinnitus through surgery injection or medicine.

God bless !

 

[Jack Straw]

Tinnitus sucks, but you're in the early stages. In time you'll be able to use coffee, weed, LSD and headphones again. Just be careful with the headphones, take breaks during long sessions.

He can cross that bridge when the time comes. There is a lot to think about when it comes to those activities and substances.

 

[Michael Barton]

Hey @grime ,

What I'm reading constantly is that T gets better over time. I'm in week 2, and can say, I was scared at the beginning (days 1-3), then relaxed, even started to sleep reasonably well. Then just yesterday, my whole evening was consumed by it, I just couldn't get to the state of mind that I was in the previous couple days, but then today, suddenly, I'm having no problems coping once again. The key, is to accept it, listen to it thinking, "ah at least I don't hear people arguing in the distance, or hear kids screaming at the playground" Humans are unique like that, we can turn things around mentally.

I've installed a mindfulness app which I'm on day 5 with, and I've installed a meditation app, which I've yet to start, but I will do so tonight, and unfortunately, I'll really need to have at those apps to figure out this whole meditation thing, because apparently it's the key to all of this in the long run. It'll help making your response to the sound be a calming one, instead of a stressed one. At that, all I thought I wanted was silence and sleep, but all I want now, is plain old rest, just well being, which luckily I'm getting by slowly accepting it's there.

Currently I still wake up stressing, which sucks, because I can't get back to sleep, but whenever I'm not with my girlfriend, I try to sleep to the sounds of a running shower, and I have great rest, so make sure to try that occasionally as well if sleep is a problem.

Lastly, I can say, you don't want this to get worse, I'm in that boat, and I'll do what it takes. So even if I look like an idiot wearing music earplugs in restaurants, the gym, or in the car, that's peanuts in the long run, so make sure you do that too (cost me 10 bucks at a drugstore).

And the most important thing to take away from all this is, you aren't dying, that's what my girlfriend keeps telling me. There's people out there who've lost loved ones, or are about to, to terminal illnesses they cannot be cured from, and THAT is true tragedy.

Plan things with friends, go to the movies (wearing plugs), go to theme parks (wearing plugs) and live in the moment.

All of this is the best advice I can give you. That said, you've been doing this for 2 months, so I should probably be listening to you. On that note, any advice for me?

Thank you.

Kind regards,

Michael Barton

 

[Jason37]

Johnny Depp has shitty tinnitus...A tone of A in one in ear and b flat in the other. I'm pretty sure he hasn't lived a sheltered life of a 60 year old. And I know he has done LSD, although I myself probobly wouldn't. Plus Treaments are coming I suppose. I just say Fuck that noise and move on.

 

[Bam]

Hey @grime

And the most important thing to take away from all this is, you aren't dying, that's what my girlfriend keeps telling me. There's people out there who've lost loved ones, or are about to, to terminal illnesses they cannot be cured from, and THAT is true tragedy

You've had this one week Michael. Trust me true tragedy resides here too.......Big time.

 

[coffee_girl]

First of all, there's nothing wrong with sitting quietly and reading books . Second of all, your perspective right now will change with time as you learn to adapt and understand your relationship with your T, hate to be a broken record but it does get better mentally as you learn to grasp your condition. Severity in loudness aside, there is still hope that you can and will lead a normal life. Don't allow the dark thoughts to mushroom

 

[Jason37]

It sucks but there is nothing to be done about it, Everyone hates it. The road of despair leaves you aimlessly wondering around in circles. Look up Rebecca Alexander on TED Talk for some inspiration. She has ushers syndrome and no hearing and loud Tinnitus after cochlear implants. Oh yeah she is also blind! She still has two Masters from Columbia University and is a top psycho therapist and extreme athlete. Sometimes perspective can help us a lot trying to figure this out.

 

[grime]

I have no issues with LSD or weed, but using any headphones may not be the best idea, even if his tinnitus does go away...
That could be one good way to bring it back, even if he "takes it easy".

Wait really?? I hear stories about people with T who drop, and then the ringing spikes and launches them into more or less a sound hell... the idea scares the hell out of me. Do you usually trip alone or with people? Are you usually distracted?

 

[grime]

First of all, there's nothing wrong with sitting quietly and reading books . Second of all, your perspective right now will change with time as you learn to adapt and understand your relationship with your T, hate to be a broken record but it does get better mentally as you learn to grasp your condition. Severity in loudness aside, there is still hope that you can and will lead a normal life. Don't allow the dark thoughts to mushroom

I didn't mean it like that!!! of course there's nothing wrong with sitting in a quiet room and reading a book, in fact we need way more people to start doing that... we'd be in a much better place. I'm just frustrated because a normal day for me would be getting high 2-3 times and making music all day (unless I have school, where I still get high 2-3 times but go to classes and do readings and whatnot instead). I'm not used to not being constantly high, and the last time I was sober for this long I was in the darkest mental space of my entire life. In fact it was weed that saved me from it. So sitting in a quiet room reading a book, which is essentially the only thing I can really do anymore considering, is a very easy way for me to get quickly distracted and spiral into a violent depressive episode haha.

 

[Striveon]

I feel the same way, I am 20 and now I can no longer enjoy the happy lifestyle of going out and enjoying the loud music I used to love. It sucks because you always have to be very well aware of loud sounds near you and act fast during loud sounds. There's still hope, I've heard of many people including family members where their tinnitus went away months, a year or years later. Hang on tight and protect your ears, let them heal. Good luck

 

[JohnAdams]

Johnny Depp has shitty tinnitus...A tone of A in one in ear and b flat in the other. I'm pretty sure he hasn't lived a sheltered life of a 60 year old. And I know he has done LSD, although I myself probobly wouldn't. Plus Treaments are coming I suppose. I just say Fuck that noise and move on.

Do not do LSD. Especially with tinnitus. Yeah, that's the best advice I've ever heard, at least for those without HA. Fuck the noise and move on.

Psychedelics can be a mental challenge alone and having tinnitus through that may not be the greatest experience. I would compare that to taking a 4x viagra dose, burning your glans with a lighter and then being tied up and ruthless fucked by nymphomaniac. For 6-8 hours.

 

[jasonbourne]

You've had this one week Michael. Trust me true tragedy resides here too.......Big time.

He mentioned terminal illnesses that cannot be cured which is exactly what tinnitus is. Just because we can't die from it doesn't mean its not a tragedy (having to do it yourself is worse). Your girlfriend has a very basic way of thinking.

Also he said this "There's people out there who've lost loved ones". What's this got to do with other people losing others, that's completely irrelevant. This is about our suffering.

 

[Lane]

I've heard nothing but "don't wear headphones for very long and keep it at a low volume". I usually wear them all day.

Hi @grime,

It would seem headphones are high on the list of possibilities as to why you got tinnitus to begin with. And also high on the list as to why it hasn't gotten better the past couple of months. You're so young, and there are LOTS of things in this world that bring enjoyment and fulfillment besides headphones (and drugs). -- I think if you give your ears a break for a while, they'll have a good chance of healing. -- All the Best!

Do not do LSD.

Totally agree on this one. LSD leaves behind discordant vibrations in the brain and neurological system long after the physical LSD is out of the body. I believe this can set up a condition akin to "maladaptive plasticity", which I can't imagine would ever be good for anybody, much less for somebody with tinnitus.

 

[grime]

He mentioned terminal illnesses that cannot be cured which is exactly what tinnitus is. Just because we can't die from it doesn't mean its not a tragedy (having to do it yourself is worse). Your girlfriend has a very basic way of thinking.

Also he said this "There's people out there who've lost loved ones". What's this got to do with other people losing others, that's completely irrelevant. This is about our suffering.

I agree. I mean I do have to say it's important to be grateful for the fact that this is a livable condition. Not because of some moral competition where some things are worse, though, but because, for me at least, realizing that I am still completely alive and can do things with my life still is an ESSENTIAL part of getting over this shit. Fuck anyone who says that this isn't a horrific fate to suffer, but for ALL of our sakes I think we should acknowledge, however difficult it is, that we aren't dead yet and we can keep going.

 

[grime]

Hi @grime,

It would seem headphones are high on the list of possibilities as to why you got tinnitus to begin with. And also high on the list as to why it hasn't gotten better the past couple of months. You're so young, and there are LOTS of things in this world that bring enjoyment and fulfillment besides headphones (and drugs). -- I think if you give your ears a break for a while, they'll have a good chance of healing. -- All the Best!

Totally agree on this one. LSD leaves behind discordant vibrations in the brain and neurological system long after the physical LSD is out of the body. I believe this can set up a condition akin to "maladaptive plasticity", which I can't imagine would ever be good for anybody, much less for somebody with tinnitus.

Thank you for the hopeful words!!! I've been having a hard time thinking the same thing, but I realized today that there are people with serious drug addictions that also have to go sober. A lot of them make it through and find SOMEHTING to do. I miss drugs and headphones like hell, but I guess there has to be something out there for me. Not gonna give up this early at least.

 

[grime]

@jasonbourne AYAYA at least we're in the exact same boat!! somehow. 2 random people dealing with the same cruel fate.

I'm thinking the same thing! The more I look into it the more I find that the internet is a harsh form of availability heuristic. Of course every single story in the forums is going to be somewhat depressing, considering how small of a proportion of total amount of tinnitus sufferers it actually accounts for. What seems like oceans of negativity accounts for only like 25 or 26 horrible stories in an average desperate google search. Tons of people recover.

In the mean time we just have to do what we can - visit doctors, find the cause if we can and see if there's anything we can do. And in the meantime, do things that keep us sane until we habituate.

 

[Arseny]

Hey man,

I recently got this too in my left ear for unknown reasons and got a huge setback after an MRI.
I've had a power tool incident in June without any apparent consequences and everything else in my life stayed the same. Headphones to play games at 60-90% volume, music in cars, using trams and being in somewhat loud places (no bars or concerts). The fact that I've got it mostly in my left ear (It's ~90% in my left and ~10% in my right. It fluctuates. I'm not even sure there was anything in my right ear before the MRI) really baffles me. My habits didn't change, nothing has changed. My friends live the same lifestyle, I would say almost identical, because we play the same games with almost the same headphones on the same volume, drive around in cars listening to the same music. They have no problems at all. Maybe I just got unlucky or I didn't get enough vitamins, because last 6-7 months my diet was very strict due to my allergies. Or maybe my nerdy life style (I work behind the monitor 8 hours a day and than use my computer at home for 3-4 hours) got the best of me. I've been having some neck problems for the last 2-3 years, doctors say that can lead to pinched nerves, bad circulation, etc which in turn can cause this.

Right now I think the noise in my right ear has calmed down so that I don't really hear it anymore unless I try to search for it.
My left ear got a bit better too. It has changed from screaming alarm to more of a high pitched hiss and it's definitely less scary although it's loud and because it changed from a tone to a hiss I feel like I can hear it inside my head which is horrible. Before that it was a couple of different tones in my ear which I could separate from my left ear and my right ear which gave me some relaxation. Also there was a hum inside my head. The hum (which is most likely from circulation problems) is almost gone. The pulsating noise has diminished greatly.

I've been getting a lot of treatment for my vascular and neck problems and I can definitely say that it helped a bit. I'm starting HBOT in 1.5 weeks which is very promising.
I'm still in awful mental state, worst depressive episode of my life. I've been very depressed before due to various reasons, but this doesn't even compare to anything that was before. Every worry about things I thought mattered seems so silly and futile now. I feel like that my life has been split in half. If it gets better to the point that it doesn't interfere with my day to day tasks and my walks in the park I will become the toughest son of bitch out there. I hope it gets better for you too.

The fact that I'm getting treatment and something changed for the better is helping me to push onward and not to give up on life.

I would highly suggest you reading trough everything in Treatments section, starting steroids (Prednisone/Dexamethasone) and starting HBOT. It might not be too late and could greatly help you.
I'm currently getting steroids injections and I think they have helped a bit, although it's too early to say. The oxygenation has great potential too. Please call your local clinics and start asap if it's possible.

I hope you will get better.

 

[another sean]

When people tell me to not worry about tinnitus because I cant die from it, I ask them if they would take it easy if they were being verbally abused 24/7 . That usual ends that conversation.

 

[Wolfears]

When people tell me to not worry about tinnitus because I cant die from it, I ask them if they would take it easy if they were being verbally abused 24/7 . That usual ends that conversation.

Also don't forget that you can very easily die from it...once you stop sleeping because of the insane noises inside your head, you are half way there.
If you can't sleep, you can't live..at least not for very long.
You may not die directly from Tinnitus, but you might die of a heart attack caused by not sleeping, due to Tinnitus.

 

[SoundB0und]

When people tell me to not worry about tinnitus because I cant die from it, I ask them if they would take it easy if they were being verbally abused 24/7 . That usual ends that conversation.

I have had both, and I can say tinnitus was far worse, at least the tinnitus that I had(they measured my hearing loss at 85 decibels at 8k Hz). The mocking you can sort of ignore and tune out and you get desensitized(or should I say habituated, ha) to it, but tinnitus is this high pitched monster drilling into your head with no pause.

I have a psychotic disorder and the voices are usually abusive, they're at the moment controlled by medication and I don't have them anymore. Also I was mocked by real life people, not 24/7 obviously but about 20 times a day on minimum, usually more, for years. I had brain damage(that has now healed thank god) and people were mocking me, I lived on a busy street.

It's hard for me to even compare horrific tinnitus to something else that would put a good picture into people's heads. Acute pain perhaps? I have a friend who's being careless with his ears and he has mild tinnitus, I'm trying to make him see the light but I don't know how, I guess he'll have to learn the hard way.

 

[Jason37]

I feel the same way, I am 20 and now I can no longer enjoy the happy lifestyle of going out and enjoying the loud music I used to love. It sucks because you always have to be very well aware of loud sounds near you and act fast during loud sounds. There's still hope, I've heard of many people including family members where their tinnitus went away months, a year or years later. Hang on tight and protect your ears, let them heal. Good luck

You can have a happy life. You are young and A lot of people think there will be a treatment at some point soon, as do I. I was accepted into the FX-322 program this summer and spoke directly to The Dr. Administering the injections. They do believe it will help with tinnitus if all goes well, but they won't come out and claim these things. Unfortunately I dropped out of the study do too the extreme travel distance for me and family obligations. But after the first trip to San Antonio I am willing to wait and see until the next trial. There were just a lot of variables I wasn't ready to risk at this time. No one knows what can happen when changing the structure of the human inner ear....I just wasn't ready to risk loosing more hearing loss at this time(which is one of the risks That was explained to me). But worrying about tinnitus and what could happen in the future does nothing to promote a healthy life. We don't know what is coming around the corner, good or bad, only living for today can bring a sense of self worth and accomplishment. We can't change the past so why even think about it.

@jasonbourne AYAYA at least we're in the exact same boat!! somehow. 2 random people dealing with the same cruel fate.

I'm thinking the same thing! The more I look into it the more I find that the internet is a harsh form of availability heuristic. Of course every single story in the forums is going to be somewhat depressing, considering how small of a proportion of total amount of tinnitus sufferers it actually accounts for. What seems like oceans of negativity accounts for only like 25 or 26 horrible stories in an average desperate google search. Tons of people recover.

In the mean time we just have to do what we can - visit doctors, find the cause if we can and see if there's anything we can do. And in the meantime, do things that keep us sane until we habituate.

And yes there are like 25,000 registered on this site, and how many millions have this crap? You are correct that people do recover and be perfectly normal. My Aunt is basically deaf with profound hearing loss and loud roaring tinnitus since she was a teenager from the measles. You will recover, read only success stories and get away from forums. There is like a three man wrecking crew on here terrifying everyone that come to look for support and ways to handle it. Try and loose the fear and capture your moments when you feel like yourself and build on those.

 

[Striveon]

You can have a happy life. You are young and A lot of people think there will be a treatment at some point soon, as do I. I was accepted into the FX-322 program this summer and spoke directly to The Dr. Administering the injections. They do believe it will help with tinnitus if all goes well, but they won't come out and claim these things. Unfortunately I dropped out of the study do too the extreme travel distance for me and family obligations. But after the first trip to San Antonio I am willing to wait and see until the next trial. There were just a lot of variables I wasn't ready to risk at this time. No one knows what can happen when changing the structure of the human inner ear....I just wasn't ready to risk loosing more hearing loss at this time(which is one of the risks That was explained to me). But worrying about tinnitus and what could happen in the future does nothing to promote a healthy life. We don't know what is coming around the corner, good or bad, only living for today can bring a sense of self worth and accomplishment. We can't change the past so why even think about it.

And yes there are like 25,000 registered on this site, and how many millions have this crap? You are correct that people do recover and be perfectly normal. My Aunt is basically deaf with profound hearing loss and loud roaring tinnitus since she was a teenager from the measles. You will recover, read only success stories and get away from forums. There is like a three man wrecking crew on here terrifying everyone that come to look for support and ways to handle it. Try and loose the fear and capture your moments when you feel like yourself and build on those.

I get what you mean but it is easier said than done. Thank you for the advice and I truly hope a cure is around the corner for us! There's a possibility of losing more hearing with FX-322? Do you know why? I really hope not, fingers cross this will br the cure to save us all! My life is misery due to tinnitus and it's hard to accept it since I still have a long long life ahead of me...

 

[grime]

I get what you mean but it is easier said than done. Thank you for the advice and I truly hope a cure is around the corner for us! There's a possibility of losing more hearing with FX-322? Do you know why? I really hope not, fingers cross this will br the cure to save us all! My life is misery due to tinnitus and it's hard to accept it since I still have a long long life ahead of me...

Aye man this might be some self help bullshit but hang in there. One thing I've realized since this stupid ringing started is that there were a lot of external factors in my life that I was convinced were the reasons I were happy... hence this thread. But in reality, the happiness was something that was coming from within and those external factors were, to me, sort of a short cut. You're still in tact. T might be pretty debilitating, and it takes away a lot of priveleges people our age have (like drugs and concerts... fuck I wish i could go back). But those aren't necessary to be happy.

Personally I've started focusing on hobbies that don't involve hearing, like improving my drawing skills, reading, and sort of reevaluating my life in order to improve myself. Sobriety is kicking my ass and so is this dumb sound that won't stop, but I notice that as I keep working on these things and getting absorbed in them, the periods of time where they can help me ignore the ringing I actually feel myself again. I feel happy like I was before all this bullshit.

I guess TLDR; distract yourself with hobbies that engage with your SOUL my guy. and hang in there, you have every right to be mad as fuck about this condition. just know deep down that it's not the end of your happiness, just a really tall electrical fence with barbed wire that climbing over is going to suck ass.

 

[grime]

Try and loose the fear and capture your moments when you feel like yourself and build on those.

I love this, its extremely accurate and it's something I've noticed is saving my attitude and my life.

 

[Jason37]

First of all, there's nothing wrong with sitting quietly and reading books . Second of all, your perspective right now will change with time as you learn to adapt and understand your relationship with your T, hate to be a broken record but it does get better mentally as you learn to grasp your condition. Severity in loudness aside, there is still hope that you can and will lead a normal life. Don't allow the dark thoughts to mushroom

This....Oh and I love coffee too, and maybe you I think. I'm a sucker for red heads!