Tinnitus: Hello I’ve just joined, I’ve... - British Tinnitus ...

British Tinnitus Association
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I’ve just joined, I’ve had T for over 60 years, and it doesn’t get any easier, not for me anyway.

I’m Totally Deaf, I had complete Obliterations in both ears, everything gone, just skin graft.

So Tinnitus it’s a Nightmare, I’m under Mental Health now, because I’m having very very dark moments because of Tinnitus.

It changes continuously all day everyday, it wakes me at 2,3,4am mornings and I’m on sleepers, guess I should be grateful for the couple of hours or more I do get.

25 Replies

Hello and welcome to the British Tinnitus Association forum. Do feel free to ask any questions, I hope that you find this a helpful and supportive place to help you manage your tinnitus.

We have some resources that you might like to check out in addition to our home here:



Helpline 0800 018 0527 (Monday-Friday 9am-5pm) (outside the UK you can call +44 (0)114 250 9922)

Warmest wishes

Nic (BTA Communications Manager and Forum Administrator)

TotallyDeaf66 in reply to NicBTA


Thank you for intro, I will find this difficult to find some sort of help for me.

I’m Totally Deaf I have nothing In Ears at all, no ear drums,no Cochlears no bones, dead nerves, no hair cells.

I’ve had this over 60 yrs and truthfully it has got worse instead of better.



NicBTAAdministrator in reply to TotallyDeaf66

We're aware that there is a lack of support available for those who are profoundly deaf. We are actively working on how we can help people like yourself.

That said, learning to relax effectively can help, and we've produced a leaflet of suggestions you might like to try which don't involve - as many technique do - sound.


As the author of that leaflet, I'd really welcome any feedback on that, and on any aspect f your experience, so that we can improve our provision.

Warmest wishes



Thank you for advice Nic, but I’ve tried acupuncture ,massage, tai chi, but I have very severe balance issue after a brain op in 1970.

I’m trying coloured lights etc in my bedroom to try relax.

Yes it’s extremely difficult for me, I’m not profoundly Deaf, I’m classified Totally Deaf because I only have skin graft from inner ears to outer ears.

Those that are Profoundly Deaf can have Cochlears if they so wish. I will never hear again.

Back To Tinnitus im under Mental health now, because Tinnitus gives me suicidal tendencies sadly.



Hi. It must be really tough not having any audible background noise to distract you from your T sound. All I can suggest is you try to keep your mind occupied. Do you have any hobbies? Maybe watch a film with subtitles? I would think getting outdoors would help with lots of visual distractions.



Hidden in reply to JohnJopp

I agree with John, it’s all about focusing on other things really. The brain isn’t very good at multi-tasking (especially us men!..lol). That is a good thing when it comes to tinnitus.

When we think about it we have 4 other senses to play with (sight, touch, smell and taste), all of these help us to enjoy life.

So we can still enjoy spending time with people, appreciate the environment, doing tasks, problem solving. pursuing hobbies. All help to distract ourselves from the tinnitus.

Eventually the brain does rewire itself so it doesn’t register the tinnitus unless we chose to listen for it. The hard bit is trying to distract ourselves with other things which are more positive and constructive.

I can’t speak as someone who has total deafness (I do have significant hearing loss though) but I hope this helps. Whatever our limitations are, there are always the two choices. Waste our lives being depressed about the bits which don’t work or, appreciate and use the bits we have left which still work.

MRDeaf in reply to Hidden

60 years with T, trust me, I’ve tried everything, I have damage to Balance Mechanism, this 75% of time stops me doing things.

MRDeaf in reply to JohnJopp

Sadly all of what you have said doesn’t help me.

I’ve had Tinnitus for 60yrs started when I was 6, it did interfere with concentration, the more Operations I was having, the worse Tinnitus got.

Operation after Operation ears, Brain, ears ears.

I have coloured lights in bedroom trying to relax.

When I do get to sleep, Tinnitus wakes me up, I have a variety of different noises.

I just fight it best I can.


Great respect from side....Your true fighter your fighting tinnitus from 60 years it really inspires me lot, with being totally deaf and many operations u had at young age , when you fought 60 years you can surely fight back remaining life,lots of love n respect from my side .

MRDeaf in reply to Suji778

Hi Suji 😊 you know what’s common with Totally Deaf people !! It’s Dementia, and 😢 yes I have start of Dementia, had all scans etc. I still fight but it gets harder.

Can you still hear tinnitus if you have lost your hearing .

Hidden in reply to Highwycombe

Yes. A person will still hear tinnitus if they have lost their hearing. The tinnitus is generated in the brain not the ear.


The Brain still sends phantom noises so answer sadly is Yes Highwycombe.

You don’t hear Tinnitus, it’s false phantom noise sent from brain.


The thing is that it’s still a choice. You can suffer it... or find other more constructive things in life and run with them...

Once you do. and stop using tinnitus as an excuse for a shit life...we move on and fnd happiness...

TotallyDeaf66 in reply to Hidden

Tinnitus is Not an excuse for shit life, my life has had many ups & downs health wise, and I Battle on.

You must have very mild Tinnitus to come out with comment like that asw21.

If you knew ailments, illnesses, Operations I’ve had you would talk rubbish like that.

I’m Totally Deaf hey ho I move on being good enjoying life best I can, But Tinnitus does obstruct one.



Hidden in reply to TotallyDeaf66

I’m not really into the “my T is louder than others” argument. Those who have suffered severe T (like myself) have managed to move on to a normal happy life. The brain is plastic and does rewire itself eventually but it takes a lot of will power to keep focus away from it so the brain can adapt.

Being totally deaf obviously must make it harder as you have no other sounds to distract from the T. However, if you are focussed on other things which engage the other 4 senses and the brain you should find that you notice the T less and less.

It took me a while to wean myself off babbling brook sounds at night time but eventually just letting my imagination flow before getting off to sleep was enough to distract my attention away from the T.

I’m sorry if I’m sounding harsh but it was harsh talking which helped me in the end! ;-) I appreciate we all respond differently to advice and that you don’t like my approach.

It’s good to share our issues with others but I’m afraid in the end we have to help ourselves and try to stay positive. If not for ourselves, do it for those around us.

It sounds like you’ve done Ok up to now by being strong.

Well said ...

jbradford42 in reply to Hidden

You’ve lost me, using Tinnitus as an excuse. You must have T mildly then. mine is really loud the screaming never stops it’s a true nightmare but I have only two choices live with it or !

Easier said than done living with it, yes I understand about it screaming, disturbing sleep.

Have I tried committing suicide = yes

Do I have suicidal tendencies= yes

I’ve lived with it for 61years I’m 67 now, it’s a hell of nightmare ride that’s for sure.

Hidden in reply to jbradford42

No, I didn’t have it mild (if you read my experiences from 6 years ago). If I chose to listen for it 24/7 and allow my emotions to go haywire again, I know I’d be back at square 1.

I trust my brains ability to push it away from my consciousness. At the start I found it could do this for seconds, later minutes, then hours until eventually I reached point where I rarely noticed it at all.

Like any ailment, we can focus on it and live a life of misery, or we can focus on the good things we have left. It is a choice.

I had Cochlear implants that failed, the Brain would accept the electrodes, I’ve had 3 major major Brain Operations.

Tried to commit suicide and many dark moments, so mm & aaa I’ve done ok, I’m still breathing.

I meant the Brain wasn’t accepting the electrodes, fair bit of damage.

So my Brain rejecting Electrodes from Cochlear implants, because of damage caused long time ago.

As far as I’m concerned we are all different.

I just got annoyed because reading between the lines, it’s Learn to live with it, I find that difficult, mix with people I also find it difficult with communication problems.

All I can say is good luck to you all.

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