We need your feedback for a major campaign coming up later this year. Can you summarise your tinnitus and its impact on your life in ONE sentence? Please comment below. Thank you for your support!
Warmest wishes
Nic (BTA Communications Manager and Forum Administrator)
Relentless daily torture.
totally life changing devastatingly relentless mental torture
Pure pure HELL.
Like being taken hostage by a hissing, head haunting , spectre of sound
Not living, more like just existing!
Completely life changing with little help from GP !
Endless empathy with other sufferers, hopeful for relief one day soon!
I will never have a quiet space in my life.
Unfortunately it's all in my head so no one else can quite understand what it's like, whereas voices in someone's head is classified as as serious disability -i.e. schizophrenia so why doesn't tinnitus get the same recognition?
hi afm2, I totally agree with you.T should have a mental health status and be given a much much higher profile and more help offered! were hearing so much about mental health in our society and how help for it should be heightened and given a higher priority well tinnitus should be right up frint there with all the other live changing debilitating mental probs. maybe the B.T.A. should be seeking fuding from the nhs to eradicate theis awful affliction and life chabhging torture which is there 60/60/24/7/52 take care drumcraw
Yes exactly WHY ?.
Stressful/depressing .. no one understands how the slightest sound might heighten it to which you could suffer for days with it being like that
''Its completely destroyed my life, and my loved ones.. who are watching me suffer! ''
On a side not went to see a consultant last week at the Royal E T in grey inns road she drew me a diagram of the vicious circle I am in , she said ill get used to it, come back in 12 months. she let me keep the diagram.
I hope to god she is right. It would appear to be the best we can hope for.
I try not use that expression - "it's destroyed my life", it's too ........negative/end of the road???
I'm quite willing to use - it's made my life difficult, less enjoyable, stressful, caused mental health issues, relationship stress, made me give up my job due to inability to concentrate etc,
It's a bit like the Meatloaf song "I'll do anything for love but I won't do that"!!!
But then again I can be very pig headed and obstinate
Make your life a living hell.
My tinnitus is like a Rock concert without the great music, only the hissing, buzzing and high pitch noises competing with the city awful ones until nighttime comes and my eternal bed partner triumphs in his overwhelming solo performance.
At my worst nearly four years ago - suicidal, my life ruined - now recovered I have my life back again.
Lynne,
Scrolling through this is quite depressing in itself but such is the nature of this affliction. Thank you for this, it re enforces the need to think positively🕯
I've had it for so long I don't really notice it much. I do wish that a cure could be found.
Cure? A cure you say! My guess is that a cure for tinnitus will be found on same day a cure for cancer is discovered.
I've had severe bilateral tinnitus for 15 months and still wake up every day shocked that it is actually a real condition, such is its torture.
After 15 months I still wake up every morning shocked that this is actually a real condition!
I can't get my icon thingy to come up so it doesn't look like me 😱!
Tinnitus is a tormentor of the soul, I fight tooth and nail against admitting this to myself, let alone others. Nevertheless, although the world is full of suffering I think it's important to be aware it is all around us, and there are worse torments of mind and body than Tinnitus. I find great comfort in not burdening others with my T even when it is very,very loud, In doing this I feel in control , and it works for me. The world is full of suffering, it is also full of overcoming of suffering.
I'd like to thank everyone for your comments so far. It hasn't been easy reading, and obviously living with it is worse.
However, it is really helpful for us to be able to use your words to raise awareness, and encourage research to make progress towards our vision, which is "a world where no one suffers from tinnitus".
For those of you who are struggling, we are doing our best with limited resources but we are here to support you. Our Helpline 0800 018 0527 (Monday-Friday 9am-5pm) (outside the UK you can call +44 (0)114 250 9922) can also answer your questions and give you support.
Warmest wishes
Nic (BTA Communications Manager and Forum Administrator)
Incessant and persistent hissing with very little relief.
Respectfully submitted,
Keoni
I had the hissing for many years but was not actually aware of it until my hearing was tested and then soon afterwards I got an 'ear worm', not in fact a musical one but a repetitive rhythm - da DA da DA da DADA, daDA da DA da DA A A. Luckily it is very quiet so no real bother, the real nuisance is Boing Boing Boing in the early hours of the morning. I have never sought help, if I get fidgety I put words to my ear worm eg I came this way first week in May to see the dragon fly (! ~!~~) Fortunately I am beginning to sleep better, but I still feel very tired during the day.
I have it but it won't beat me....no way😊
Since it spiked again it has been relentless and it is gradually grinding me down, making every a struggle and taking the joy pleasure out everything I do.
Know how u feel
Tapping banging and high pitched screech! Trying relaxation no cure irritation
Absolute Nightmare 24/7, I’m Totally Deaf, balance problem, sleep problem, deep depression.
It’s hard to ignore being Totally Deaf.
I have nothing at all in ears, no ear drums, no Cochlears, no nerves, no hair cells, no bones.
But I have Tinnitus the phantom Nightmare, how I’ve survived I don’t know, but I have, it’s been pulsatile since age 5/6 until I was 12, then volume went up and all sorts of noises in R ear, continuous hisss L ear.
I’m now 67 and it louder than ever.
CJ
Life is over
After having it for 36 years I guess you just get “used” to it. I’ve had probably 6 really bad flare ups where it feels that I’m never going to get back to normal, but I do. I just go through the same procedure I always do and gradually it fades into the back ground. It’s loud today, but it’s ok I can deal with it.
Wish there was a cure, but in the meantime I’ve got a life to live and I will not let this hold me back. I know in the future I’ll get flare ups again and I’ll be completely floored, but I’ll be fine.
Ingrid xx
Sounds similar to my experience. I’m nearing 20 years and have had flare ups. Does each flare up you have seem louder and worse then ever? Mine do. But I tell myself and my partner tells me it’s the same thing I always say and it will pass. And previously it has. Currently in a flare up 
Hi, yes every time I have a flare up I tell myself it’s worse than the last one and I’ll never get “used” to it again. But I always do 😁 I think the noise doesn’t really change just my attitude towards it. Once the brain focuses on it again, it’s hard to switch off.
I’m sure you’ll be fine as you’ve experienced flare ups before and you know they don’t go on for ever.
Take care
Ingrid xx
well its like been chained to a prolific relentless one track moron and the key is lost
Exhausting spend almost all my nights rocking to my own heartbeat =( GPS don't know & don't care!!
I find Tinnitus very isolating. It’s also very distracting when you’re trying to do things and it’s loud and interfering with thought processes or your ability to have a conversation. It’s isolating because you can be sitting trying to chat to someone and then you find yourself listening to the tinnitus and not the person, then you start thinking about the fact that the person your with doenst know Youre not concentrating on what they’re saying and you then miss even more of the meaning in the conversation and then the person asks you ‘Are you listening to me’ and you say yes - when really you weren’t.
I usually try to listen to the different ‘layers’ of it and then count what I’m hearing and then say to myself ‘that’s ok now - I k is what I’m hearing so let’s move on and ignore it’, but it’s not always possible when it’s at its worst.
Tinnitus is somehow worse when the person you’re talking g to knows you suffer from Tinnitus- and it wears you out because you can’t say a million times a day that your Tinnitus is bad that day - and if it’s a family member - sometimes you feel that they have no idea what you’re going through because they keep trying to act like everything is normal - when it’s far from normal. It’s not that they don’t want to understand that you have tinnitus or s brain injury or whatever - it’s just that they don’t have it and they’re busy / so they forget. If your partner doesn’t remember what you’re trying to cope with then you feel very isolated. My tinnitus started when I had an accident and head injury. I don’t think it will ever go away now.
It is a maddening frustrating ailment, sometimes to the point of tears.
It's like having a permanent swarm of mozzies in my head, I want to swat them away but can't, how tinnitus is it not taken as seriously as having voices in your head by the medical profession I don't know.
My silence is not golden. I would like to relax by reading but I find the constant high pitch hiss so distracting, I then listen to music but thats off putting to read. I have learnt to distract myself over the years. It is like any other hidden ailment, its hidden to the outside world and therefore (unless you have a similar condition), you can't expect others to know. Long live forums like this where people are supported by others who have a better understanding.
Absolute nightmare it’s torture, neverever stops, when I went Totally Deaf, I thought well at least peace.
But no it’s HELL non stop phantom noises. My Left side has gone back to Pulsatile Tinnitus Soldiers Marching LOUD. Whooshes more frequent.
CJ Totally Deaf
Roaring loud and very intrusive and annoying.
Angry swarms of bees who often like to impersonate a car alarm and compete even with with hearing aids and give me headaches with the concentration to hear anything over the constant racket. Thankfully have reverted back to acceptance (ignorance?) mode like of youth and resigned to fact it was there from day 1 so don't recon it's gonna leave me now. The medics need to take on board that this wreck lives.
P.s. Sorry if sound flippant as I empathise with everyone cos I remember all to well how mega irritated, frustrated, angry etc etc as young adult realising not everyone had it and the years of embarrassment wondering why I couldn't understand stuff n pretending I could n making excuses n dreading being asked a question by teachers. I felt devastated and wished I could be totally deaf. Thankfully I'm not and I'm back to normal and with my heart hope everyone who suffers this flaming thing finds a place of acceptance and able to notice and enjoy the good things we have. Best wishes to all.
I have had it for years and it is getting worse after my heart attack .I have been to hospital about tinnitus had loads of tests to be told nothing can be done .even my doctor can do nothing.
Living in a world where there’s no peace and quiet
Severe Bilateral Tinnitus and hearing loss due to Menieres Disease...don't give up..
It's life changing!
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