Two Year Anniversary

[Allen Y.]

So this is my two year anniversary (I take 6/18/2016 as the day my tinnitus started, give a day or two since it kind of sneaked up on me, low a first, and then louder and louder until I couldn't deny that something was wrong). It's been the hardest two years of my life.

I debated what I should write. On the one hand, I could write a "Yippee I am in a happy place now" post and it wouldn't be completely inaccurate. In many ways, I have adjusted to the high 12-13khz eeee, sometimes glassy, sound in the head. I don't get angry any more. I don't even hate it. I have come to accept it. Many times, I have even caught myself feeling "happy" playing with my children or playing on the piano despite a roaring noise in my head.

But on the other hand, I am not happy. T is all pervasive. Every day I hear the sound, I ask myself, how did I get here? I always protected my ears ... didn't have trauma... am only in my 40's... You know, I used to treasure silence. I looked up the quietest places on earth and planned to visit each of those places.

If this shit can happen to me, anything can - including things much much worse (e.g. life-ending things...). That realization is both terrifying as well as liberating...

After two years, this is my standard pattern. 50-60% bad, 20-30% mediocre, 5-10% good (4-5 bad days, 2 ok days, once in a while 1-2 good days). In the bad times, my head aches; the sound is all pervasive (nothing masks it). In the mediocre times, the sound is all pervasive, but the ache is not there. In the "good" times - I sometimes don't hear it when outside. And even when I hear it going to sleep, those low levels wouldn't bother me.

I feel like living in hell, but I am ok. I accept my T as a amputee might accept a missing limp. I will live despite my condition.

For the newbies, this post might sound bad, but please don't freak out. Life is about change and adapting to change. It is the case even if you don't T ... even if you are cured of T.

Until one day, science and technology progresses such that we all become immortal and healthy (bacteria is immortal for example), the human condition has to be defined by the will to survive ... the strength to live another day ... despite challenges.

And so many things are in our head, too. Take for example, my love for "silence." I used to love silence because that was when I felt most calm, and I treasured calm immensely. After T, for the longest time, I found no calm. It was terrible. But more recently, I have found calmness despite T (one time playing piano, another time running in the park with my 5 and 7 year old boys, for example). So while I may have lost "silence" forever, I know I don't necessarily have to lose the "essence" of "silence" forever.

I want to wish everyone strong mental fortitude ... and luck. Getting mad at T will just let T rob that many good seconds of your life from you. Don't let it. Find the will to live ... and live well...

Try, we deserve it.

 

[dpdx]

The problem is that I cant focus, concentrate, or work with this. I cant read, sleep, write, listen to music, watch tv, etc. When I had mild T it was totally adaptable to, but with severe Tinnitus it is extremely hard. I had Severe T and H since January 17 after caloric test and VEMP, which caused mild-mod hearing loss. The noise remained constant however now the tones are changing and the worst tone of all is coming back. I dont think I will be able to adapt to this it is simply not possible. This is why we here to push for the cure/treatment ASAP.

 

[Allen Y.]

The problem is that I cant focus, concentrate, or work with this. I cant read, sleep, write, listen to music, watch tv, etc. When I had mild T it was totally adaptable to, but with severe Tinnitus it is extremely hard. I had Severe T and H since January 17 after caloric test and VEMP, which caused mild-mod hearing loss. The noise remained constant however now the tones are changing and the worst tone of all is coming back. I dont think I will be able to adapt to this it is simply not possible. This is why we here to push for the cure/treatment ASAP.

I am with you...

I guess what I am trying to say is even if a cure for T were to be found right away, soon I believe we will run into other health issues ... and we need to dig up the same mental fortitude we need to overcone or at least adapt to T.

I am not trying to say T sufferers are mentally weak or anything. It's the same fortitude needed to overcome say amputation or blindness or other debilitating conditions.

We need the fortitude to make do. We need a cure. And even while I have made do, I am still suffering...

 

[Nice]

I hope you feel better soon.

 

[New Guy]

Thank you for sharing your feelings about t after 2 years. It sounds like it's not as big of an issue as when you first got it. You've moved on with life.

 

[Bam]

To say 'if you didn't get T some other health condition would have come along anyway' is ridiculous. Look at the OP. 60% of his days are basically miserable. He now enjoys around 5% of the happiness he used to have. This is utterly devastating for a man in his prime trying to support a family and give his kids a happy upbringing. How can you offer love and joy when you're living under these awful prisoner of war style conditions.

However you dress this up. There are very very few health conditions that can have this devastating permanent effect on your happiness and well being without any chance or hope of relief.

This is why people with tinnitus kill themselves day in day out while the rest live on the edge of a cliff that might collapse anyway.

As the OP's statistics suggest, it's not a life.

 

[Wolfears]

I feel like living in hell, but I am ok.

Sorry to bring up that particular quote, but it just jumped at me.
You are a very strong person my friend

 

[Bam]

Thank you for sharing your feelings about t after 2 years. It sounds like it's not as big of an issue as when you first got it. You've moved on with life.

I would say the grim acceptance of only having 5-10% of 'good days' for the rest of your life while trying to raise a family is a pretty f***ing big issue.

 

[Anselmo]

@Bam: We must have fortitude. Suicide isn't a choice, it is giving up. I won't do that. And there are worse conditions & diseases out there than tinnitus, although when we are in the midst of t, it is all consuming. I've had t since 2014, and the first 2 years were extremely difficult, but I have prevailed. You will too.

 

[Tempest]

Happy for you Allen Y.

But I have to say the more I've read these stories the consensus most of the time is that life just isn't as enjoyable anymore. And it really depends at what point in life you are once you get this horrible condition and what coping mechanisms do you have on hand.

I'm not saying it's easy for anybody, but it's still much harder for anybody who's in his 20s rathen than in his 50s. Once you get tinnitus, you really have no future, you live day by day. It is an endless marathon. And when there is no way of actually relaxing and just being, what there is to gain in life anymore exactly? How can one fuction when he cannot relax in peace after a hard day at work? Like people get depressed and even kill themselves much easier, for example stressful job/school or when one gets a kid and they're just fed up for not having own time and listening to that crying. Like that's the easy mode, imagine that stress for the rest of your life, because that's what tinnitus is. We're playing on nightmare mode.

 

[TLion]

I am so fed up by the negativity here. Seems like there are 2-3 people who just want to post negative to every topic raised.

What's the point? I am 38 and have 4 young kids. They are wonderful. And I have a hard time coping with my Tinnitus. Hope and knowing that it gets easier is what keeps me going. And the faith that God does know my condition and knows that I have to be there for my kids.
A story like the above gives hope. I just cannot understand why there are always the same people who answer to these kind of posts and spread the negativity.

 

[Tempest]

I am so fed up by the negativity here. Seems like there are 2-3 people who just want to post negative to every topic raised.

What's the point? I am 38 and have 4 young kids. They are wonderful. And I have a hard time coping with my Tinnitus. Hope and knowing that it gets easier is what keeps me going. And the faith that God does know my condition and knows that I have to be there for my kids.
A story like the above gives hope.

Sorry if we come off as negative, but it's also the truth.

And let me get this straight: you said it gets easier, but you also just said that you have hard time coping with tinnitus, despite you having it since 2006. So that just proves that it doesn't actually get better and it's your kids that keep you going.

So everything I said above in the earlier post is not false either.

 

[Anselmo]

To suggest that it is easier for somebody with tinnitus in their 50s than in their 20's is nonsense. It is tough on all of us, no matter your age.

 

[TLion]

Sorry if we come off as negative, but it's also the truth.

And let me get this straight: you said it gets easier, but you also just said that you have hard time coping with tinnitus, despite you having it since 2006. So that just proves that it doesn't actually get better and it's your kids that keep you going.

So everything I said above in the earlier post is not false either.

It's not that easy. My stress induced Tinnitus in 2006 initially gave me a hard time. But it almost completely went away and I had no problem till 2011. Normal life.
In 2011 I experienced an acoustic trauma which led to a worsening Tinnitus. I had a very hard time again, was even in a psychiatric hospital for 6 weeks. And guess what? I FULLY recovered. Normal happy life till 2016. I then developed another stress, depression and anxiety induced worsening. Again had a hard time and also FULLY recovered. Every single worsening felt like a new onset of Tinnitus. Because every time before I felt Tinnitus free.

This time I experienced a worsening in April 2018. Now I am again at my Wit's end. It feels again like a new onset of Tinnitus. And I am trying to adjust, hoping, and KNOWING it gets better. It did. Every single time.
Actually I'm not good in preventing new onsets.

It's important to know for all of us that it gets better. Life does not stay as it is. Even if it feels like nothing will ever change.

 

[Bam]

To suggest that it is easier for somebody with tinnitus in their 50s than in their 20's is nonsense. It is tough on all of us, no matter your age.

Sorry it's harder when you're younger. Not because the T is worse but the years you have to endure seem endless. With all the other pressures of young/middle age this just seems insurmountable on top. Like grappling with a tiger whilst being f***ed by a bear.

 

[Bam]

It's not that easy. My stress induced Tinnitus in 2006 initially gave me a hard time. But it almost completely went away and I had no problem till 2011. Normal life.
In 2011 I experienced an acoustic trauma which led to a worsening Tinnitus. I had a very hard time again, was even in a psychiatric hospital for 6 weeks. And guess what? I FULLY recovered. Normal happy life till 2016. I then developed another stress, depression and anxiety induced worsening. Again had a hard time and also FULLY recovered. Every single worsening felt like a new onset of Tinnitus. Because every time before I felt Tinnitus free.

This time I experienced a worsening in April 2018. Now I am again at my Wit's end. It feels again like a new onset of Tinnitus. And I am trying to adjust, hoping, and KNOWING it gets better. It did. Every single time.
Actually I'm not good in preventing new onsets.

It's important to know for all of us that it gets better. Life does not stay as it is. Even if it feels like nothing will ever change.

Do you not think you're being cumulatively worn down here? I mean it's a snowball effect surely. If you had just not been gifted horrid s***ty T to begin with I can't see that the roster of misfortune you just listed would be quite as dramatic. I feel for you man.

 

[Anselmo]

@Bam: That is negative thinking. Perhaps you will adjust in time. How do you know you won't acclimate? It took me two years, but I have. Stay strong and positive, and things might turn around for you.

 

[Bam]

@Bam: That is negative thinking. Perhaps you will adjust in time. How do you know you won't acclimate? It took me two years, but I have. Stay strong and positive, and things might turn around for you.

But from what I gather you had a bit of a breakthrough on Mirtazapine. I sadly didn't. I very nearly killed a close member of my own family because of that stuff. Rage doesn't even come close to what it did to me.

Again it emphasises my point about the destructive quality of T. I had ZERO mental or otherwise health problems my whole life. I was into diet and sports. I barely touched an aspirin in 10 years before I got this. Zero drugs. Now I've been through the whole gamut of AD's, benzos and even anti psychotics in the early insanity. My health is wrecked and the things I once held dear, including my family are now a distant memory as my entire personality has been permanently altered by T and the resulting trauma. I'm not the same person at all. It's a horrid thing to witness when you see the realisation in friends eyes that it's no longer you, it's just a shell left behind.

There's not a health problem on earth that can destroy the entire spectrum of your life so comprehensively as severe tinnitus.

 

[Anselmo]

@Bam: How many mg of mirtazapine were you taking?

 

[Bam]

@Bam: How many mg of mirtazapine were you taking?

15mg at first. Tapered to 7.5 but still started becoming very aggressive. Slept like a log but during the day I was like a rabid dog. Glad it worked for you though. Luckily I have no problem sleeping. Depression helps that. My real problem as Tempest alludes it is trying to now find a 'point' to life. I only ever knew a life of goals and enjoying a healthy body enabling me to dream and reach for them. Now my suffering is such that I would hugely resent working hard, not being able to relax at the end of the day because of this nightmare and still paying taxes into a healthcare system that offers me sweet FA because they're more concerned with fitting gastric bands to fat **** who deserve to be where they are.

 

[Anselmo]

@Bam: I understand your dilemma. But you do sleep. Most people on this sight don't. That is their main concern-sleep deprivation. So you are already one step ahead of most of the people on this sight. Now you have to figure out your daytime statategy. I saw a shrink, and he was a big help. I found him on yelp.

 

[Bam]

@Anselmo agreed. I was always a good sleeper which was the killer in the early days. Insomnia and T is the deadliest combination there is. It will take you to your end in a heartbeat. Now I just hate being denied peace and the ability to truly relax without being constantly prodded and poked by constant T. It's also completely f****ed any faith I had and made me frankly unpleasant to be around. I'm unlovable like this because I feel constantly agitated and pretty goddamn worthless. That's a hard adjustment when I was the guy who everybody loved being around. Depression isn't an attractive quality I've discovered.

 

[TLion]

Do you not think you're being cumulatively worn down here? I mean it's a snowball effect surely. If you had just not been gifted horrid s***ty T to begin with I can't see that the roster of misfortune you just listed would be quite as dramatic. I feel for you man.

Of course every time the well known panic and anxiety come back. This sums up. BUT it is important to know for every sufferer that even if it seems impossible you will be better.

 

[Bam]

@TLion how long did it take for your first/initial T to get better if you don't mind me asking?

 

[TLion]

@TLion how long did it take for your first/initial T to get better if you don't mind me asking?

Roughly 2-3 months.

 

[Tinniger]

After two years, this is my standard pattern. 50-60% bad, 20-30% mediocre, 5-10% good (4-5 bad days, 2 ok days, once in a while 1-2 good days).

...despite T (one time playing piano,....

You play the piano?
That is one of the essential problems, that one is not sure, that noise is not responsible for the bad days.
If you have better and worse days (as I do), then it is natural to look for causes. Eliminates the causes of the bad days.
What do you think of the cause study?

 

[Allen Y.]

However you dress this up. There are very very few health conditions that can have this devastating permanent effect on your happiness and well being without any chance or hope of relief.

This is why people with tinnitus kill themselves day in day out while the rest live on the edge of a cliff that might collapse anyway.

As the OP's statistics suggest, it's not a life.

Thanks for this... I know some may think you are overly "negative," but I myself appreciate your comment.

I personally never cared much for being "positive" in dealing with T. The "positivity thread" sounds so "superficial": putting up a brave pretty smile sitting in a cess pool while inviting others in for swim.

Much of the "success stories" to me is also "depressing." Habituation to me is failure. Success can can still only mean only one thing: complete cessation of T .... and full recovery of hearing.

Still while I may have failed to defeat T, I don't have to give up the rest of our life also. That's what I think I'm getting at. Let's not throw out the baby that is our life with the proverbial bathwater.

What I offer is not "success." It's not "positivity" either. It's a realistic look at how someone with T for two years has copeed - from a fellow T sufferer to another.

I have a family that depend on me ... their lives go on ... the world goes on ... my show must go on ...

My "success" is narrowly defined as being able to publicly functional. All my friends and family who know I have T still think I have a "good life." They don't know how my life is now longer "sweet" ... how can it be when every day and every moment is pierced with a pervasive painful sound with no end ... they only see how I still look healthy, am still humorous, is still 'intelligent,' and can still make good music.

When I lay next to my sons putting them to sleep, they enjoy all the stories I tell them. I know I can't enjoy the sweet sound of silence with them, but they don't. But that's ok because I can still see them, talk to them, hear them breathe.... So I am still ok...

 

[Allen Y.]

You play the piano?
That is one of the essential problems, that one is not sure, that noise is not responsible for the bad days.
If you have better and worse days (as I do), then it is natural to look for causes. Eliminates the causes of the bad days.
What do you think of the cause study?

I stopped piano for a few months when T started, but I have gone back to playing ... and composing ... even when T is blaring.

I have found no cause. Nutrition, sleep, mood, health, anything and everything... No correlation. I have a pattern that sometimes change ...but for the most part stays constant ... it's just a cycle I have little control.

 

[GregCA]

I stopped piano for a few months when T started, but I have gone back to playing ... and composing ... even when T is blaring.

What have you done to root cause your T?

 

[Allen Y.]

What have you done to root cause your T?

I tried sleeping well ... but same (long term) pattern...

Tried taking B12 ... same ...

Acupuncture ... same ...

Changing salt content ... same ....

Various sound treatments ... same ...

Drinking self squeezed fresh juice ... same ...

Melatonin ... same ...

etc., etc.

All above tried over weeks if not months....

Allen