Not Much Left (Not for Those Wanting to Feel Uplifted)

[Joek97006]

I'm just about 1.5 years into my devastated life. Suicide is not an option (have three little ones) but several times early on I've come close to what I would call a moment of failure. Your body works it self up to the point of logic override. It's total hell. I almost feel like it's a bodies defence to prevent continued suffering.

People talk about it getting better with time. Mine is exactly the same today as a year and a half ago. Hearing aids help somewhat during the day but my sound can't be masked. The louder the ambient noise, the louder my T is. I can literally be on the freeway with the windows down and my music up and still hear my T above everything the same level as a quite room.

I break down about once a week or so. I have Xanax for these days but I always feel like a zombie the next day. I have 30-40 years of life expectancy left which actually scares the hell out of me despite an otherwise bright future that I worked so hard for.

Guess I should add...I've talked to a shrink, I've seen tons of ENTs, I've tried what can be tried. My T was caused by SPL so high that not only did it blow out my hair cells like a candle, it likely ruptured the cochlear membrain allowing my remaining cells to be poisoned. Some studies indicate rapid damage seems to cause greater T. I still feel like no one understands how bad this is.

 

[Andrea Lopez]

I'm so sorry you're suffering. I know the feeling . If you don't mind me asking, what is SPL?

I'm very new to T but I try and not project into the future. Think that maybe they'll be a treatment or cure in the near future or that you will find something that works for you.

Hang in there!

 

[Joek97006]

SPL is sound pressure level. I'm glad you are hopeful.

 

[RonnieCarzatto]

Joek97006-

I'm only two months in but those feelings you've described, I've been feeling them myself. I know it's not much comfort being told "you're not in this alone", but you have to be strong for your three little ones. Believe me, I've pretty much come to the conclusion that life is some kind of cruel joke, this blaring T has taken over my life and thought patterns, I'm obsessed now. But you have to, have to, HAVE to hang in there, and fight another day.

This forum is a lifesaver. I've read all sorts of posts that strike a resonance when I'm feeling low (which, as you can appreciate, is constantly).

As much as T ruin well, everything, it's still important to find joy in the little things. For me, it's food, or focusing on a good film to temporarily forget about my T (to the best of my abilities), or seeing my fiancé when she comes home from work.

I'm curious to know, have you looked at any therapies of the alternative variety? I'm not getting my hopes up on them either, but I figure the action of constantly trying to help my T helps me in some ways, at least stay somewhat sane.

Hang in there man, I'm sure if you dig deep down inside, you'll find that will to keep fighting.

You can always shoot me a PM with anything going on on your mind too.

 

[Joek97006]

Thanks Ronnie. In addition to every possible traditional thing I've tried alternative medicine, acupuncture, meditation, etc. I've followed research including vegas nerve stimulation, and Transcrainal magnetic therapy. Nothing in those things brings hope. If you really understand what T is than you start to realize how impossible it is to fix. Maybe you know this at 2 month in but it took me longer. T is caused by the brain fusing cerebral connections. Even 20-30 years from now if stem cell research allows us to regrow the damaged nerves, it still won't fix the problems in the brain. I'm not good at pretending my life isn't permanently spoiled. Do you have hearing aids? They are the only things I've received benefit from. T is what killed quality of life for me but I miss my hearing too. I'm the guy that bought the electrostatic speakers to hear every little detail in a well recorded album. I played piano. I loved to watch people play and sing too. How did you get T?

 

[EddieMar]

I'm just about 1.5 years into my devastated life. Suicide is not an option (have three little ones) but several times early on I've come close to what I would call a moment of failure. Your body works it self up to the point of logic override. It's total hell. I almost feel like it's a bodies defence to prevent continued suffering.

People talk about it getting better with time. Mine is exactly the same today as a year and a half ago. Hearing aids help somewhat during the day but my sound can't be masked. The louder the ambient noise, the louder my T is. I can literally be on the freeway with the windows down and my music up and still hear my T above everything the same level as a quite room.

I break down about once a week or so. I have Xanax for these days but I always feel like a zombie the next day. I have 30-40 years of life expectancy left which actually scares the hell out of me despite an otherwise bright future that I worked so hard for.

Guess I should add...I've talked to a shrink, I've seen tons of ENTs, I've tried what can be tried. My T was caused by SPL so high that not only did it blow out my hair cells like a candle, it likely ruptured the cochlear membrain allowing my remaining cells to be poisoned. Some studies indicate rapid damage seems to cause greater T. I still feel like no one understands how bad this is.

Can a cochlear implant help you?

I saw this young buffed kid refilling our vending machines, he had a cochlear implant. He said it was a pretty easy and quick surgery, but he was born deaf in that ar.

 

[Joek97006]

An implant won't correct T. It may be a good alternative to the hearing aids though.

 

[GregCA]

An implant won't correct T.

Don't be so sure, see https://www.ncbi.nlm.nih.gov/pubmed/28132726
Quote: "45% of patients reported total tinnitus suppression"

 

[RonnieCarzatto]

Joek97006

To be honest, I'm not sure how I obtained my lovely T. Like you, I was a music album lover. I always splurged on super expensive headphones and would listen to all production details in a song. I also loved live gigs and went all the time. So it may be noise induced. However, back in January, I suffered a mild head injury. Nothing serious at all, just a hit to my right eye. The T started about 13 days after (about a week after I hit my head, I had some nausea/brain fog. I suspected a concussion, doctor never check though). So it could be trauma induced as well. I also quit pot, and understand there are mild withdrawal symptoms including T, maybe the stress from that is aggravating it as my brain rewires itself.

T started off slowly in the right ear/side of the head, then one night it was so loud it woke me up from my sleep. Feb. 8th 2017, I'll never forget it. I haven't been the same since, lost 10 pounds due to depression 3 weeks.

I've been doing acupuncture but it only helps with anxiety, and all the Chinese herbs I drink seem to give me T spikes which has never happened before. From all of the research I've done, I'm slowly starting to accept that there is no cure (though a New Zealand University believes the key is in MDMA, Google it); either I get lucky and T goes away in a few months, or I have to accept that this is a life sentence. No hearing aids yet, my hearing seems to be fine, though I'm planning on seeing an audiologist to confirm that.

There's a company near my town that offers sound therapy devices that play classical music (Sound Options) and apparently they have a good success rate as well, I'm thinking of looking into them.

I tip my hat to you sir. 1.5 years is a long time, but here you are. I admire that you do it for your little ones. Trust me man, pretending life is what it used to be is a demanding experience daily, so I can relate.

 

[volsung37]

Over a year into this bout of T. Its louder and I have more tones than at the start. However I enjoy my sleep now and can enjoy a good book, wine or a walk by the sea.It s just noises. We don't get annoyed with other bodily noises like breathing. Mind you it would be nice if I were to wake one morning and just hear outside sounds like the birds and the wind. Anyhoo...

 

[Alue]

I know the feeling. I got my T the same way and around the same time. I can't mask it, and it doesn't fluctuate much like most other people's T. That is unless I'm on medications that reduce it, but there are no safe medications to take long term.

 

[Foncky]

Over a year into this bout of T. Its louder and I have more tones than at the start. However I enjoy my sleep now and can enjoy a good book, wine or a walk by the sea.It s just noises. We don't get annoyed with other bodily noises like breathing. Mind you it would be nice if I were to wake one morning and just hear outside sounds like the birds and the wind. Anyhoo...

Maybe you have no hearing loss ? No hyperacusis ? You can drink alcohol without worsening your T, fine. You can walk by the sea without earplugs, fine. You can focus on a book, fine. Some of us can't do that. Please don't tell to people who are suffering that's "it's just a noise" and that breathing is a noise too. You're not helping.

 

[volsung37]

Maybe you have no hearing loss ? No hyperacusis ? You can drink alcohol without worsening your T, fine. You can walk by the sea without earplugs, fine. You can focus on a book, fine. Some of us can't do that. Please don't tell to people who are suffering that's "it's just a noise" and that breathing is a noise too. You're not helping.

So moaning about how bad everything is is helpful? I hear T pretty much 24/7 bar when I'm sleeping. In the end you just have to accept it and get on with life.

 

[Foncky]

You're basically telling the OP that T is not a good reason for suffering.

I would tell him : you have the right to suffer because T is serious. But there are many ways to overcome this suffering and we are here to help.

"Accept it and get on with life" : this is what 90 % of ENTs say. This doesn't help at all and add to the suffering actually. I don't know, just think about it.

 

[Abby W]

@Foncky I think @volsung37 gives a good positive outlook on the crappy situation we are all stuck with. Everyone has the "right" to suffer. But in the end the way you perceive your situation is what is going to make it livable. You can be suffering and choose to enjoy your life. I think "it's just noises" is a great way to think of it. Noises not everyone hears but a lot of us do. I still have my days where anxiety seems to take over and all other sounds are drowned out by my T but then there are days where I can push past it and let it play in the background. I like to think that the way we look at the situation can change how it effects us "suffering" will not make it better but you are allowed to suffer.

With that being said @Joek97006 I really hope you can find some comfort in knowing you are not alone and that you have a life a head of you, but you choose how to live it.

 

[Joek97006]

Thanks Abby. I think your attitude is probably the healthiest we can try for. I'm sure a lot of us (including me) will tell you to choose happiness is not something we have control over. Not saying we should strive for it but T can effect other parts of the brain making one clinically depressed. We are not just saddened by loss of hearing and having to listen to noise but actually experiencing changes to parts of the brain that control emotion. These areas surround the audio cortex. I think some might be taken back by the "choose" happiness approach because this is like telling someone with an amputated foot to choose to walk it off. I guess some (even with a missing foot) get to a place where they do "walk it off" but this type of damage will also have a more substantial impact on some than others (not just by the severity of the condition). Anyone who looses a hand would be upset but imagine how a guitarist would respond. Or an artist loosing their sight. Audio was everything to me. I would sit and critically listen to a well recorded peice of music on hard earned expensive audio equipment as a way to relax, I had a recording studio years ago where I helped people get their music to production, and I've played piano since I was two. A rifle blast (or more than one) took all of the enjoyment in those things from me and replaced it with a 6khz tone I will hear above all else for the next 40 years. I always thought bad things happen to those who make bad decisions but sometimes bad things happen by no fault of the individual who suffers the consequences.

 

[Ed209]

@Joek97006, in my opinion I think you're fighting it too much and that's why you're so distressed by it. We can't force ourselves to be happy, but we can change our thoughts and behaviour for the better. Everybody is different, and we all suffer in a unique way, but I know that we all possess the ability to overcome the most awful of situations that life can bestow upon us.

A lot of it is down to our coping mechanisms, which is largely inherited and learnt through others' behaviour early in life. If a problem is chronic - or here to stay - then we have to find a path that leads us forward. We must learn to stop going around in circles, re-enforcing our anxieties, and ultimately making our symptoms of depression worse.

I strongly believe that you are still in the 'looking for a cure' phase, and I think you need to let it go and start living your life again. You need to learn and identify the behaviours that are holding you back, and possibly find other key aspects within your life that are troubling you. Once you start to change the way you think then everything else will start to fall into place for you.

I'd recommend avoiding all things tinnitus related, personally, at least for the time being. The more you read about it the more importance you are associating with it. Find a new hobby that really interests you (maybe something you wanted to do as a kid but never fulfilled; art, photography, musical instruments etc). Really put some momentum behind it and give it your all. As your attention grabs hold of something else, your perceptions of tinnitus will slowly begin to change. In fact, you're likely to stop thinking about it all together, given more time.

In conclusion, you have to accept the cards you have been dealt. No one in the history of suffering has ever moved on until they have accepted what's happened to them first and foremost. Once you do, a new chapter in your life will begin, and you'll slowly leave all this pain behind you.

 

[glynis]

@Joek97006,
Tinnitus and the unwanted emotions can be real mental torture for some people and so easy for others say to stay positive.
Believe me ive been there and in that black hole thats hard to get out of and the sad withdrawn face looking back at yourself through the bathroom mirror.
Health issues can make life hard and depressing but we have no choice but to fight back and keep fighting for everything we want and grab the chance to be happy and laugh and do nice things with both hands and realise we can do it if we try extra hard and show or ears or bad health whos the boss and if we need to let people down now and then if not well we can do it another time.
We have the right to be happy so keep fighting ......lots of love glynis

 

[Ed209]

@Joek97006,
Tinnitus and the unwanted emotions can be real mental torture for some people and so easy for others say to stay positive.
Believe me ive been there and in that black hole thats hard to get out of and the sad withdrawn face looking back at yourself through the bathroom mirror.
Health issues can make life hard and depressing but we have no choice but to fight back and keep fighting for everything we want and grab the chance to be happy and laugh and do nice things with both hands and realise we can do it if we try extra hard and show or ears or bad health whos the boss and if we need to let people down now and then if not well we can do it another time.
We have the right to be happy so keep fighting ......lots of love glynis

Listen to the armour plated tinnitus ninja and you won't go wrong @Joek97006!

 

[glynis]

@Ed209.... we might get knocked down but bounce back stronger as we learn from each setback and fight on and on...lots of love glynis x

 

[SilverSpiral]

Does music sound bad to you in ways besides your unmaskable 6k tone? i have distorted hearing, i wonder if it is caused by the kind of damage you describe? I feel same as you except i don't have kids and am a burden to my family. i can't see how i can stop suffering if i keep have to be around so much noise or music and stuff in daily life. this is messed up.

 

[glynis]

SilverSpiral,
Sorry to hear how you are with your tinnitus.
We are always hear for you and not a burden and we are stronger together .
Keep fighting the fight to be happy and hope the future does become brighter. ...lots of love glynis

 

[Ed209]

@Ed209.... we might get knocked down but bounce back stronger as we learn from each setback and fight on and on...lots of love glynis x

I've been knocked down more times than I can remember. In fact, I'm not doing well at all at the moment since seeing my consultant on Friday. I've walked this path so many times now that it's become an old familiar feeling. I think I cope better than I used to, but it's still an awful place to be mentally.

 

[Ed209]

Does music sound bad to you in ways besides your unmaskable 6k tone? i have distorted hearing, i wonder if it is caused by the kind of damage you describe? I feel same as you except i don't have kids and am a burden to my family. i can't see how i can stop suffering if i keep have to be around so much noise or music and stuff in daily life. this is messed up.

Don't ever feel you're a burden to your family because you're not. Having to deal with tough issues like T and H is not easy; it's incredibly difficult. You must go easier on yourself.

 

[glynis]

@Ed209,
I know how you feel Ed,
Welcome pm me anytime if want chat off the forum....
Stay strong ....lots of love glynis

 

[SilverSpiral]

Don't ever feel you're a burden to your family because you're not. Having to deal with tough issues like T and H is not easy; it's incredibly difficult. You must go easier on yourself.

I don't think you have the information needed to determine whether or not I am a burden to my family.

 

[Ed209]

I don't think you have the information needed to determine whether or not I am a burden to my family.

I'll rephrase what I meant Spiral: you cannot be a burden to your family even if you feel they aren't supportive of your suffering. You're going through a very hard time, so you're not to blame in any way.

If you feel this way then rest assured that you are not the problem Spiral. I don't know the ins and outs of your situation, but you should never blame yourself. Guilt is a hideous emotion that achieves nothing.

 

[SilverSpiral]

I'll rephrase what I meant Spiral: you cannot be a burden to your family even if you feel they aren't supportive of your suffering. You're going through a very hard time, so you're not to blame in any way.

If you feel this way then rest assured that you are not the problem Spiral. I don't know the ins and outs of your situation, but you should never blame yourself. Guilt is a hideous emotion that achieves nothing.

Guilt is actually really healthy and important, aren't psychopaths the only people who don't feel guilt? But I don't think guilt is necessarily part of determining if a person's existence is, or has been a burden to the parent.

 

[Ed209]

Guilt is actually really healthy and important, aren't psychopaths the only people who don't feel guilt? But I don't think guilt is necessarily part of determining if a person's existence is, or has been a burden to the parent.

You obviously feel something is amiss Spiral otherwise you wouldn't have posted what you did. Feeling like you're a burden is either brought on by the reactions of others or you're own feeling of guilt. Guilt is never a good feeling when it's based on things we can't change. There's a big difference between the guilt of a murderer and the guilt of feeling you're to blame for something when you're not.

 

[linearb]

@Joek97006 I was a pretty severe mess at 1.5 years out from my noise trauma. Overall my life is a lot better now. Try to be patient and have some self-compassion!