Curious What It Is Like Having Tinnitus for Years

[Starthrower]

Do you still miss silence?? Can you still recall what silence "sounds" like or is tinnitus just your new silence?

I have been wanting to write in this thread for a few days now. As you can see it has been about 15 years for me living with tinnitus. But remembering or recalling those first years is very emotional and I don't know how to explain without others becoming more scared or worried about this tinnitus not going away or becoming quieter as time passes by.

Today my life is wonderful. I have limitations which many do not need. No movies or loud late dinners out. I really do not miss that though. In fact a few weeks ago my husband and I met up with friends at a local nice dinner place and after 45 minutes of horrible noise - tiled floors - crowds of people chattering - dishes clanging together ect. I had to excuse myself and leave. No big deal but I come first when I find myself in those situations.

I often talk with my niece who had her arm amputated (cancer) about the same time I had tinnitus come into my life. And we often wonder how each of us lives with the "disability" believe it or not. Now, she works just fine with one arm and usually close friends even forget about her limitations. So does she. But there are days she will have a down day and cry. But not very often.

Tinnitus for me is the same way. It is there morning till morning. Loud like screeching brakes and non-stop in my brain. But....now each morning I wake up about 4:30 am because of the noise and just start my day. Interesting side note is that after my first cup of coffee the noise seems to lessen for me.

I forgot what silence is like. And some days I get sad about that.

I am happy. Life is good. Married to a great guy who carried me for a year doctor to doctor. I knew I had to get off my butt and dust the dirt off and try to get better and find ways to cope. It wasn't fair to my husband if I didn't keep trying to get better. And I am sure my whining and crying and inability to leave the house for a year was hard for him to live with. My marriage was more important so I worked my butt off to get where I am today.

And believe me I was in the darkest of darkest places back in 2002. And if anyone told me the above I would get angry. The noise drove me almost crazy as did the lack of help from any type of "professional".

I choose to leave the negative stuff out of this. One day I may write it down. But the depth of darkness is so hard to talk or remember now.

 

[Elfin]

And for a very good reason @Ambassador I have counselled people with severe tinnitus on the other end of the telephone crying endlessly because of the distress they are in due to tinnitus.

Hi Michael,

Did they largely improve, or remain in this state? Looking for some further hope in all this!

Kind regards!

 

[MBH]

I got my T but it was not due to noise induce and no cause maybe stress, mine is all over with no pattern. But my T is nosie problems when I thought it would not for awhile I heard everything louder. And everywhere I went the nosie went louder where I know it's normal sound. I had to retrain myself each day that it is normal sound, now it is a lot better. I don't think just due loud t or h I believe it is with a lot of combinations of t. I heard everything very loud I had to change my fear factor to move on with myself.

 

[Michael Leigh]

Hi Michael,

Did they largely improve, or remain in this state? Looking for some further hope in all this!

Kind regards!

I have counselled many people with tinnitus and the ones that had the manners to telephone and say thank you they had improved. Some improved and didn't have the common decency to pickup the phone to let me know they had got better. One gentleman (if you can call him that) used to telephone me and was in quite a state. Things got so bad he was admitted into a psychiatric hospital because he tried to harm himself. He phoned me 5 times one Sunday in distress and crying. This went on for a while and then I stopped hearing from him.

A friend of mine that has tinnitus and does counselling too knows the gentleman in question and told me he had made a full recovery, meaning the tinnitus had gone away. My friend had telephoned him to find out how he was as he hadn't heard from him for over 3 months. He was as surprised as I was that the man couldn't be bothered to let him know he had improved.

Some people are so transparent. When they are in need of help they are so humble you wouldn't believe. As soon they glimpse light at the end of the tunnel they revert to their true character.

I was helped many years ago in a tinnitus forum similar to this by tinnitus veterans. I also joined a tinnitus organisation and they gave me telephone numbers of people to contact that knew about the condition and how to cope with it. This is the reason I try to help anyone that asks me for it.

All the best
Michael

 

[Sean]

I have counselled many people with tinnitus and the ones that had the manners to telephone and say thank you they had improved. Some improved and didn't have the common decency to pickup the phone to let me know they had got better. One gentleman (if you can call him that) used to telephone me and was in quite a state. Things got so bad he was admitted into a psychiatric hospital because he tried to harm himself. He phoned me 5 times one Sunday in distress and crying. This went on for a while and then I stopped hearing from him.

A friend of mine that has tinnitus and does counselling too knows the gentleman in question and told me he had made a full recovery, meaning the tinnitus had gone away. My friend had telephoned him to find out how he was as he hadn't heard from him for over 3 months. He was as surprised as I was that the man couldn't be bothered to let him know he had improved.

Some people are so transparent. When they are in need of help they are so humble you wouldn't believe. As soon they glimpse light at the end of the tunnel they revert to their true character.

I was helped many years ago in a tinnitus forum similar to this by tinnitus veterans. I also joined a tinnitus organisation and they gave me telephone numbers of people to contact that knew about the condition and how to cope with it. This is the reason I try to help anyone that asks me for it.

All the best
Michael

@Michael Leigh , it is so awesome that you take your time and help out fellow sufferers.
As far as people forgetting that you or other people have helped them is so common . You should be very proud of what you do .
Even though I don't agree on one subject with you ( which is avoiding loud places ) I truely admire you that go out your way to help people .

 

[Michael Leigh]

@Sean

Hi Sean

Thank you for your kind compliments they are much appreciated. I agree with you that some people forget so quickly once they are no longer in need. They do not realize or think their actions can have repercussions but they often do. It is all about showing manners, respect and being appreciative towards a fellow human being that has helped you and doesn't matter how small the help is. If one isn't careful such practices can have a detrimental effect on one's character.

I am a small cog in a very big wheel at this forum. There are many people here that give their time to help and support others and are to be commended for what they do. Unfortunately, there are some that try to derail this good work with negativity, arguing and the use of vulgar language and believe this behaviour is justified, because they have an axe to grind as life has dealt them harshly by giving them an affliction called tinnitus.

I suppose this is to be expected when one considers the large membership at Tinnitus Talk, for it is a collection of minds that have been brought together by one particular topic. There are always going to be differences of opinions between people because rarely two people agree on every single thing. If this weren't the case, just think how boring this world would be. There would be no discussions or debates. How would we develop and improve ourselves if we didn't exchange differences of opinions? Hopefully, whilst doing so we can be respectful and show manners towards each other even if we don't always agree, somewhere along the line we can arrive at peace and true concord.

Unfortunately discussions at this forum can easily spill over into something quite ugly, as certain individuals become passionate in their beliefs and will defend them rigorously using profanity and other disparaging remarks. When that isn't enough, their attacks become more personal. I advise onlookers not to let such behaviour and vulgar language become a part of you. There is a saying: show me your company and I'll tell you who you are. If you are easily influenced or reverie in such conduct and want to adopt it as a way of fitting in then it will destroy you. Within a short space of time you will find yourself just like the individuals I've mentioned and go out into the real world and conduct yourself that way with people that you meet. You may well find after a while people start distancing themselves from you.

I have seen some people change in this forum over a period of time which hasn't been for the better in my opinion. The use of profanity and being disrespectful to other forum members is now commonplace, which I did not notice in their character when they first joined this forum. It is surprising and very sad to see.

Michael

 

[Screamin Ears]

I have counselled many people with tinnitus and the ones that had the manners to telephone and say thank you they had improved. Some improved and didn't have the common decency to pickup the phone to let me know they had got better.

Don't do things for other people to get thankyou's, do them because it makes you feel good, that way you wont be dissapointed.

 

[Michael Leigh]

Don't do things for other people to get thankyou's, do them because it makes you feel good, that way you wont be dissapointed.

I was never disappointed I assure you. If I were I wouldn't continue to do what I do.
Michael

 

[Philippe79]

To put it simply.. One of the positives I have found out about having tinnitus (unfortunately, I knew nothing about it until I got it) is making sure the people close to me (close family and friends), don't make the same mistakes I did. And to me that is a big positive ! People talk about a cure but to me there is also a serious lack of awareness.

 

[Tinker Bell]

To put it simply.. One of the positives I have found out about having tinnitus (unfortunately, I knew nothing about it until I got it) is making sure the people close to me (close family and friends), don't make the same mistakes I did. And to me that is a big positive ! People talk about a cure but to me there is also a serious lack of awareness.

Absolutely. My children are now very aware of the risks and even warn their friends.

This summer we went to a small outdoor theme park. It had one tiny roller coaster and was more nature themed (horseback riding, playing in water). But they had an outdoor show with a couple loud noises. Nothing too bad, but I skipped it while my friend took my children and her own. She sent me a picture of the kids, sitting all in a row covering their ears before the show even began.

This is how greater awareness starts and spreads — teaching younger generations.

 

[glynis]

Like @Michael Leigh,
I counsel people with tinnitus and lovely to see them move on in life.
Tinnitus and the unwanted emotions can be hard to cope with and the forum can be a supportive place to come.
However it saddens me to see threads taken over with silly banter that get personal and off putting.

I have had tinnitus many years and it can be really tough and thats why I dedicate my life to supporting others.
Love glynis

 

[John Meyers]

Yes, this is something I have been pondering on for quite some time now

What is it like to have had tinnitus for several or many years?

Does it become part of you??.... Like all other bodily functions....

Do you still miss silence?? Can you still recall what silence "sounds" like or is tinnitus just your new silence?

Do you wake up in the morning, and not even take notice of it till maybe during the afternoon?

This is merely some curious questions that have been on my mind... I have really wondered what it must be like to have lived with tinnitus say example for 10 years.

I think we all miss silence (except for that gentleman above). -- I still imagine what it was like and think it is funny how I never really appreciated 'the sound of silence' (great Simon & Garfunkel song by the way

I hear my T all the time but am learning more and more on how to ignore it.

The key thing is to let T become part of you and not the other way around.

I was in control until some stress came into my life. -- Now it is louder than ever but I am confident it will go down again.

Keep reading this forum's "success stories". -- It really helps, especially when T gets extra difficult to deal with. -- I can't wait for the day that I can post my own which knocks everyone's socks off!

 

[Bill Bauer]

The key thing is to let T become part of you and not the other way around.

I like this a lot...

 

[Jazzer]

It wasn't fair to my husband if I didn't keep trying to get better. And I am sure my whining and crying and inability to leave the house for a year was hard for him to live with. My marriage was more important so I worked my butt off to get where I am today.

Exactly!
While we are healing, we are living to preserve the lives of those we love, who dearly love us.
You wrote a lovely piece Star,
Thank you
Dave xx

 

[Rohit Saluja]

Ironically, i 'treated' myself to an expensive pair prior to T

Does headphones quality matters? I got my tinnitus from the headphones too, I overused it at lower volume in the office, the headphones are of the office's, not mine, the quality is not superior, those are of HP with microphone the cheap ones.

 

[Petronius]

Does headphones quality matters? I got my tinnitus from the headphones too, I overused it at lower volume in the office, the headphones are of the office's, not mine, the quality is not superior, those are of HP with microphone the cheap ones.

It does. Cheap headphones produce harsh sound with lots of distortions, which the auditory system perceives as unpleasant. In addition to that, their poor design also has negative effects.

 

[Jazzer]

It does become a part of you

I used to live in sheer hell on earth with loud chronic Tinnitus - which I still have of course - for a very long time.
Some of you probably know that.
I did not believe that 'normal' life was possible.

Over time - things changed.
It is still there of course, but in a very strange way, I just don't care about it any more.
It can "go and get stuffed for all I care!"

A couple of years back I was terrified to even put my car through a car wash. I sat there literally shaking to bits, trembling, while my car was being covered in soap suds.......soap suds !!
Can you imagine that ??

"Well - Get Stuffed Tinnitus - I'm on my way!!"
Jazzer
Dave

 

[emmalee]

"Well - Get Stuffed Tinnitus - I'm on my way!!"
Jazzer
Dave

 

[fishbone]

I used to live in sheer hell on earth with loud chronic Tinnitus - which I still have of course - for a very long time.
Some of you probably know that.
I did not believe that 'normal' life was possible.

Over time - things changed.
It is still there of course, but in a very strange way, I just don't care about it any more.
It can "go and get stuffed for all I care!"

A couple of years back I was terrified to even put my car through a car wash. I sat there literally shaking to bits, trembling, while my car was being covered in soap suds.......soap suds !!
Can you imagine that ??

"Well - Get Stuffed Tinnitus - I'm on my way!!"
Jazzer
Dave

Give yourself a pat on the shoulder @Jazzer . To read your progression is very refreshing and I am very happy that you can live your life, even with intrusive tinnitus. Your posts set as an example for others that suffer and they are also proud of you and your accomplishments

 

[Jazzer]

Give yourself a pat on the shoulder @Jazzer . To read your progression is very refreshing and I am very happy that you can live your life, even with intrusive tinnitus. Your posts set as an example for others that suffer and they are also proud of you and your accomplishments

You were with me fish.....x

 

[emmalee]

I like your new avatar, @Jazzer. Are you able to play still, with your tinnitus?

 

[Jazzer]

@emmalee - Yes.

I am a natural jazzer.
When I walk around the beautiful park where I live, as well as soaking up the delightful scenery, I sing phrases, improvisations which I might use later on that evening etc....
I was set to give it all up, but my wife, GP, audio clinicians all talked me out of it.
So I continue performing with great care.
An ear plug in each - firmly applied in my damaged left ear, but slightly lighter in my right.
It is a tremendous challenge.
I need to hear how the other guys are placing their notes, to be able to respond, but at low volume.
Do you know how the instruments respond to each other in traditional jazz....?

 

[emmalee]

Do you know how the instruments respond to each other in traditional jazz....?

@Jazzer, no, I don't, but I would like to.

 

[threefirefour]

Yes, this is something I have been pondering on for quite some time now

What is it like to have had tinnitus for several or many years?

Does it become part of you??.... Like all other bodily functions....

Do you still miss silence?? Can you still recall what silence "sounds" like or is tinnitus just your new silence?

Do you wake up in the morning, and not even take notice of it till maybe during the afternoon?

This is merely some curious questions that have been on my mind... I have really wondered what it must be like to have lived with tinnitus say example for 10 years.

I've had tinnitus for almost two years so I think I could respond. It's absolutely awful, no denying that. The volume has improved for me though.

 

[Steve]

It can "go and get stuffed for all I care!"

I think that this is a very good summing up of what time has done to my thoughts on tinnitus

You just get to a point where it's a pain in the backside but it doesn't have the emotional grip over you.

 

[Jazzer]

@Jazzer, no, I don't, but I would like to.

A typical traditional jazz interaction.
I'm on 'bone.
We have to listen so closely to each other.
The final chorus is a perfect example.

 

[emmalee]

Oh my, @Jazzer, I thoroughly enjoyed listening to your band! Thank-you for posting the video. I am so happy that you are able to be a part of it all, gives us all a lift. Life is good.

 

[Kratos]

I have really wondered what it must be like to have lived with tinnitus say example for 10 years.

I have a friend who has had T for ~13 years and rates his T as 5/10, and he rarely notices it and has zero distress about it (he didn't even know that that sound has a name).

 

[dpdx]

I have very intrusive Tinnitus and it is awful..cant imagine having this for another 40-50 years. I wish i was 69 right now instead of 27.