Success Story on Reddit: Skatingdark

original link http://www.reddit.com/r/tinnitus/comments/trn2m/tinnitus_16_years_later_tinnitus_oh_yea_i_forgot/
"I think one of the biggest problems with tinnitus is nobody who is "cured" of it feels the need to post about it so all you get is negative feedback."
I just wanted to share this post as I've found it linked a couple of times in subthreads, and I think many people need it. Note it isn't me in this thread

Posted by skatingdark on reddit
Tinnitus 16 years later: Tinnitus? Oh yeah, I forgot I had that.

I have been depressed lately because of something wrong with my stomach. It got me thinking to when I found out I had tinnitus and how much of a hell my life became and how much better I am doing now.

My tinnitus is something I never notice. I have had it for 16+ years. I have a good job. A great girlfriend. I still make music. Play games. Go out. Do all the normal things anyone does. I never even think about my tinnitus. The last time I thought about it or even noticed it was a year ago. So unless I look for it, its not there.
I am only posting here because I found this subreddit by using the random button. I saw some of the posts and decided to share what worked for me. I am not going to cure you with this but may be give you all a little hope and tell you what worked for me.

I think one of the biggest problems with tinnitus is nobody who is "cured" of it feels the need to post about it so all you get is negative feedback. There are not many "I am feeling fine today, nothing wrong!" forums on the Internet. When I first noticed it my life was hell. I did not sleep for more than a few hours a night. I did not eat. I cried myself to sleep wishing the noise would stop. I looked up every website I could find on the subject. All of them were hopeless. The doctor I went to see told me to live with it and it would get worse. It was a very dark time in my life. I was sure my life would never be normal again. I became a kind of zombie.

Then I found a website about TRT (tinnitus retraining therapy) after hearing how it helped some people. I checked it out. I did not understand anything. It was very confusing. It looked like a lot of BS to me if I am honest. But I downloaded all I could. And I dug into it. Over and over again. Using some text to speech software and all the text on the site I made a tape I could listen too in my car. Day and night I worked on it since I could never afford to go to a REAL TRT clinic.
Slowly, over time, I started to get it. Its not a zero sum game. To me that was always the catch. If I hear it, I am affected. I remember reading some forum posts at the time and people were so angry about TRT. Saying it cured nothing. It only made you live with it. A the time, all I wanted to do was sleep and get my life back. TRT let me do that.

So here I am, depressed about other parts of my body. But not about my tinnitus. I honestly never notice it. TRT allowed me to get my life back. All of it and more. I did it on my own. It took a while. Its not a overnight thing. But for some people it can be.

I think I am trying to say to you all who are worried about how this is going to ruin your life that it does not need too. Its not a endless dark descent into a horrible world.

I helped many friends who have come to me for help with this. My old boss had really bad tinnitus for 30 years and I spent a slow day at work telling him about how TRT works. He called me the next day and told me he had not slept so good in years. Last time I saw him I asked him how he was feels and he said he never thinks about it. He said he got his life back.
16 years ago I remember a lot of very angry people telling me TRT did not work for everyone. To this day I still think its an attitude. "Its not a pill you take therefore its a lot of mystical bullshit." But here I am. 16 years later. I once went a entire year without thinking about or hearing my tinnitus.
And that is the thing. I am a 'normal' person in so many ways. I only notice tinnitus when I look for it. And that is almost never. I used to be filled with guilt about it. What I had done to myself. I wished I could go back in time and turn down the music.
But now, very honestly, if someone said "take this pill and your tinnitus would be gone" I do not think I would even bother.

Some tips I have to help you sleep. Get one of those sound machines. Find a sound you do not mind and put the volume lower than the tinnitus. This helped me A LOT. My girlfriend at the time hated it but now if the machine stops she complains. She said she sleeps a lot better with the noise.
Audio-books. I have "read' more books than you can imagine. This helps me sleep a lot and has nothing to do with tinnitus but I find it keeps my brain busy before sleep. I sleep very good.

Do not give up what you love. Music. I still listen to music. Not as loud as I used too. But the idea that some people get that music caused this and will make it worse will remove some of the joy from your life. Play music if your a musician. Listen to it if you love it. Just don't do it a crazy person volume levels.

I know some people with say TRT does not work. Its not a "cure" or that. But I am telling you what worked for me. It might work for you too. I honestly think that if I did not have tinnitus for the past 16 years, my life would be no different. Tinnitus is just something that I never notice.

EDIT: Been getting a lot of questions on what worked for me so I figured I would add this.
http://www.tinnitus.org/home/frame/THC1.htm
That is the site i used. Its ugly and looks like it was stuck in a time warp but it has all the information you need. Yes its not easy to read and can be a little overcomplicated at times. But once your get what is being said, it will give you your life back. I am not selling anything nor do i get anything out of this. I do not know the doctor. I am just sharing for me what made tinnitus nothing I ever think about or notice.
I would consider myself cured but its really the wrong term.

 

And later on he also described T as being so loud he can hear in the shower.
Stories like these keep me alive.

 

Years without even thinking of tinnitus, life without T wouldnt differ from the one I have etc...
Sounds just like me before getting H. 100% habituation can be dangerous. that's how I got H I think.

 

@lapidus (great avatar by the way) What do you mean?

 

I mean that I have been living a happy and completely normal life with T until november 2013 when I started to get hyperacusis symtpoms (for no known reason) and also a worsening of my T because of that. I think I got H because I've been living a happy and normal life. I did not know that I was more susceptible to damage my hearing further than anyone else. And I had not heard about hyperacusis. Why would I have known this? I have never been bothered by my T so I've never even googled it.

 

This is interesting. We are so used to there being "cures" for ailments while in fact I do not think there are many cures for anything , there might be "band-aids" for various conditions but yeah...

For example , If someone told me , "just do this for 8 months and you will get better " I would go " 8 months!!!! , are you serious , I need a cure , 8 months is an eternity !" While in fact 8 months is nothing compared to a lifetime of T.
Maybe we need to adjust our time perception to this crazy condition , by that I mean that maybe we need to accept the fact that this takes time, and lots of it. I feel that the day that I accepted that , I got a lot better.

Another thing that I have realized , I felt that my life had turned gray and dull when in fact it's anything but.
Every day is a different challenge , every day can be hard , or it can be relatively easy .
That is a pretty interesting and challenging life and I kind of chuckle when I hear people complaining about trivial stuff. This has certainly changed my perspective on life and for the better.

Don't get me wrong I would certainly choose to not have this crappy experience and if its supposed to teach me anything then consider me having learnt my lesson and its time to stop torturing me.

Also , I know that when I get too caught up in the moment , when I am having a bad day , I feel miserable.
When I bypass that and just move on with my day I feel pretty ok , I kind of have a choice in the matter.
Having a choice helps a LOT as having T makes you feel helpless and not in control.

Taking control is super important.

Our reaction to T is "somewhat" of a choice and I have decided to have a great day.

I´m rambling , just had my morning coffee

 

This is the success story that has helped me the most. I would not be as well as I am now without reading it. I read it first the time a long time ago. Wise words.

 

Indeed!

 

@RaZaH

I am glad to notice you seem to be doing better these days. Have you been into music stuff already?

 

@JTP Yeah , I have been making some music lately , although I am still having a rough time to be honest.
I do think its hard to realise any progress as it happens slowly but I have definitely gotten better at dealing with this.

 

@RaZaH , Heh, after a better period, I had to find my 'Crickets & running water' mp3 today. We'll get there.

 

Im in the same boat. I know its tough but we have to carry on!