My Update (Two Years Later)

[coffee_girl]

Hey members of this awesome forum! I was thinking about you guys a few days ago and I wanted to stop by to say hello and also to update on my progress. =D

Like many here my tinnitus was noise induced. I went to a concert, where the music was so loud that the glasses on the table were moving and falling off the edge. I knew at the time that something was wrong, it was way too loud… but for some reason it never occurred to me that I might be suffering from hearing damage.

Everything felt like it was a bad dream for a while, I had so much anger inside me… and everything that I used to enjoy, my hobbies… all felt empty and meaningless.

It felt worse in the sense that tinnitus is such an isolating and lonely disability, my parents don't understand it and really they think I am "just making it up" or "it's really not that bad". The one thing I felt hurt the most was the "hope" that it will go away, the constant mornings of running to the bathroom and seeing if it was still there. Or the feeling of driving in my car and having my friends talk around me while tinnitus was blaring in my head was debilitating. I felt like my life was robbed from me.

Fast forward a few months, and the sense of acceptance started to dawn on me. I took a huge break from this forum because I wanted to deal with my tinnitus on my own; it was too easy to fall into the trap of "this could go away". I stopped going to the ear doctor, as I knew there was nothing they could do for me, I didn't experiment with any medication or herbal remedies… I just decided that I wanted to be happy no matter what the cost.

I had to have a difficult talk with myself, I have tinnitus…most likely it will never go away… there's a chance I will live with this for the rest of my life. The acceptance and more importantly, the forgiveness was the most important part of my life. From that point on was all about healing, I had to "adapt" to life with my little loud friend.

Honestly I never understood these threads about "it gets better over time", because 2 years ago I really never thought I would get to this point… you DO get better and you DO go back to normal. It takes a huge amount of time and a huge amount of suffering… but you will make it, I promise.

The best advice I got from this forum was this: "you have tinnitus, if it doesn't go away in 1 month…most likely it is permanent"… I know it sounds harsh but for me the realization that this was final really opened up the path to acceptance for me. At worst I will wake up tomorrow and be cured of tinnitus… but chances are that it is not likely.

My life has been restored 100%, I am sewing, hiking, perfume collecting, baking, cooking, playing video games (no head phones though!!), and eating too much ice cream. Tinnitus is never far from me, but I don't notice it anymore… it is there in the shadows like a sibling, but it doesn't scare me as much as it used to.

 

[Roy114]

Hi there!

Thanks for sharing your story. Mine is very similar. Got noise induced tinnitus from a festival 1,5 years ago and the worst thing I did was hoping it would fade. It obviously didn't, but to realise that it's permanent also makes you open to acceptance. I've accepted my tinnitus but since its incredibly loud and high pitched I can hear it throughout my day. This still bothers me a bit at times, but not to the point of ruling my life anymore like it used to.

It's weird how I'm doing better with this insane tinnitus as loud as a jet than others that can hardly hear it in their daily lives. I guess sound and pitch don't really matter with this condition. So no matter how bad yours is you should just accept it and you will be able to live a normal life again.

I enjoy reading success stories like yours way more than the ones where someones tinnitus actually fades. Stories like yours give hope to people that are suffering from something permanent and feel like they will suffer for the rest of their lives, which isn't true at all. Thank you so much for sharing it!

 

[Bill Bauer]

The best advice I got from this forum was this: "you have tinnitus, if it doesn't go away in 1 month… most likely it is permanent"…

I would modify the above as "if it doesn't go away or fade in one month, it won't go away any time soon."

There are so many insane and false statements in the two posts above (for example).

sound and pitch don't really matter with this condition

If someone refers to black as white, how do you argue with them?

 

[Michael Leigh]

My life has been restored 100%, I am sewing, hiking, perfume collecting, baking, cooking, playing video games (no head phones though!!), and eating too much ice cream. Tinnitus is never far from me, but I don't notice it anymore… it is there in the shadows like a sibling, but it doesn't scare me as much as it used to.

I am very pleased that you have habituated @coffee_girl and getting on with your life. I wish you all the best for the future. The fact that you are not going to use headphones is music to my ears, because if you want trouble, start using them even at low volume and you'll find it FAST. By all means go out to places where music is played if you wish, just be careful of loud sounds even when wearing "noise reducing earplugs".

Take care
Michael

 

[coffee_girl]

Yes!! Honestly I get so bummed when I return to these forums and see that topics about temporary fixes, experimental medications, and dangerous self-diagnosis still dominate. Unless it is a permanent fix for me it isn't worth it to give a 2nd glance, I went to an ENT once to check my hearing and I never returned... I knew it was for real and no amount of coming back will make them cure me.

Since then I stopped worrying, my life went back to normal, I learned to live again and be happy even with a buzzing in my ears! The old me would think the new me is in denial (you have TINNITUS WHY AREN'T YOU FREAKING OUT), but now I know that it is completely the opposite...complete acceptance and forgiveness is the best medicine.

I couldn't live every day counting my tinnitus levels, or checking to see if this person's experiment worked or not, or chasing down doctor's who only ends up telling me the same things I already knew... it is a dance of madness that I feel would only lead me down a path of depression and anger. Constant disappointments and failed attempts for something that is un-fixable can only be destructive to your mental health.

It sucks that tinnitus is something that is both debilitating and yet also so unbelievably hopeful, the fact that any one's tinnitus can disappear tomorrow is reason enough to hope every day that it will go away... but honestly I am just resolved that it will be with me till my last breath... and so I stopped waiting and just accepted it.

The best thing about tinnitus is that it is SO humbling, i never take a thing for granted...life is so beautiful to me and so delicate. Your health is truly the best riches a person can have, more than millions of dollars.

 

[dpdx]

@coffee_girl

So did it reduce in volume and you habituated?

 

[coffee_girl]

I would modify the above as "if it doesn't go away or fade in one month, it won't go away any time soon."

Yes it is true that people's tinnitus has gone away and it is a very real situation that can happen, but for me the fact that it might never go away was something that pushed me to acceptance. I honestly don't care if I get cured or not now, it doesn't bother met at all... and I admit there are times when I actually don't mind it at all.

I only think about my tinnitus once a month, because my parents invite me to a house party and I have to decide if I have to bring plugs or not. That's about it, my brain completely ignores it because my mentality is: I don't give a damn.

I still drink coffee btw lol.

 

[Bill Bauer]

I honestly don't care if I get cured or not now

Is it the case that this attitude makes it easier to not protect your ears? Could you not protecting your ears from noises such as a blender be the reason why your tinnitus hadn't faded?

 

[Bill Bauer]

That's about it, my brain completely ignores it because my mentality is: I don't give a damn.

There exists a tinnitus volume for which the above will stop being true. It makes sense to spend a lot of time and energy thinking about how to ensure that your tinnitus doesn't get louder.

I have to decide if I have to bring plugs or not

The upside is that your tinnitus will be less likely to get louder. What is the downside, and can this downside be even compared to the upside?!

 

[coffee_girl]

So did it reduce in volume and you habituated?

Yeah for me it reduced in volume about 4 months in, before it was really loud and it sounded like a dial tone... but after 4 months it reduced to a hissing noise... then to a low murmur. Ironically the sound helps me sleep at night =]

Honestly the fact that I don't care and don't worry about it tricked me brain to not give a damn so 90% of the time, the only times I hear it are when I am in bed and the fan is not on. But I just sleep without any white noise, I force myself to get comfortable with my tinnitus instead of avoiding it at all cost. It feels more like an annoying friend now instead of a terrible disease.

 

[coffee_girl]

Is it the case that this attitude makes it easier to not protect your ears? Could you not protecting your ears from noises such as a blender be the reason why your tinnitus hadn't faded?

Oh I still protect my ears consistently, all my applications are set to a base volume... I rarely use the blender but when I do I have a pair of headphones in my kitchen that I just throw on, the same when I use a vacuum cleaner. I never travel without my ear plugs and I ALWAYS put them on when there is a possibility of loud noises. My point is that it's become so ingrained in my daily life that it is just a habit now and requires no 2nd thought.

I don't like to look back and think... well if I had done this or that, or if I had been more careful this way... I don't want tinnitus to control me any more than it has. I think there comes a point where you have to accept and move on... my tinnitus is not that bad and I can live with it forever and be happy with life. I have a lot to be thankful for and getting tinnitus is not the worst that has ever happened to me. I am sure the future will bring crazier things, and I am prepared for that.

You are right though that being too comfortable can lead to carelessness, now I just plant ear plugs all over town in secret spots LOL!

 

[Bill Bauer]

My point is that it's become so ingrained in my daily life that it is just a habit now and requires no 2nd thought.

Neat. Same here.

Would you say that your tinnitus had faded (if only a little) compared to how it sounded a year ago?

 

[coffee_girl]

Neat. Same here.

Would you say that your tinnitus had faded (if only a little) compared to how it sounded a year ago?

I would say yes... compared to a few years ago it was a 9... now it is a 2. Because I don't really check or anything I can't tell if it's better or not from 6 months to a year ago, but to me even in empty quiet rooms I don't hear it any more...but when i think about it... my brain instantly finds it and i hear it. The truth is that I have "stages" of my tinnitus... I wake up with no tinnitus at all (like zero), then it gradually builds throughout the day. I also drink a lot of coffee in the morning and at 6 pm which kickstarts my tinnitus... as the day goes on and the caffeine wears off the tinnitus goes down to baseline and around 2am it goes away almost completely.

Honestly though even if my tinnitus does fluctuate my brain is so adapted to blocking it out that I don't notice that there is even tinnitus somewhere in my ear... there are days where I'm sure I drank so much coffee that my tinnitus should be noticeable but I don't hear it at all... it took 5 seconds for me to search for my tinnitus and I eventually found it but that's how much i have learned to just ignore it. These posts are as much thinking about tinnitus as I have done in a year... and because of it I can hear my tinnitus now... kinda strange right?

 

[coffee_girl]

I am very pleased that you have habituated @coffee_girl and getting on with your life. I wish you all the best for the future. The fact that you are not going to use headphones is music to my ears, because if you want trouble, start using them even at low volume and you'll find it FAST. By all means go out to places where music is played if you wish, just be careful of loud sounds even when wearing "noise reducing earplugs".

Take care
Michael

Hey Michael!!! Yes it was actually your posts that stuck with me the first few years of tinnitus... I always remembered how vigilant you were about the topic and it always struck me how knowledgeable you are about tinnitus. I followed all your advice though and never wore headphones, I came back to these forums and was wondering if you were still here... just wanted to say thanks for all your help. It really helped me get through some tough times!

 

[Bill Bauer]

I also drink a lot of coffee in the morning and at 6 pm which kickstarts my tinnitus... as the day goes on and the caffeine wears off the tinnitus goes down to baseline and around 2am it goes away almost completely.

It is nice that you don't mind your tinnitus to the point that you have a way of keeping it quiet, but you choose not to do it.

Consider the possibility that by drinking coffee you are preventing your body from healing, keeping you more vulnerable to getting a louder tinnitus should you (accidentally) get exposed to a loud noise again. The above is just my uneducated guess (I don't have any medical background). If I were you, I would avoid coffee and hope that after a year my body would be able to heal itself enough so that coffee would no longer have any influence on tinnitus.