Apparently the BTA wants a world wher... - British Tinnitus ...

British Tinnitus Association

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Apparently the BTA wants a world where nobody suffers from tinnitus.....

Knoll80
Knoll80

And they think the way to go about that is to spread the message that tinnitus isn’t that bad and nearly everyone just gets used to it after a while. Looking at all the desperation and despair on numerous forums this is blatantly untrue and how on earth does it serve the charity in terms of raising funds? Why would anyone give money to something that’s portrayed as a minor annoyance? Where are the testimonies on the website of the once happy and normal lives destroyed by this hellish affliction? The people driven to constant suicidal ideation by the relentless noise and lack of help. The jobs and marriages and dreams of the future swept away by a shrieking tsunami? In the BTA’s world it seems all you need is a hobby and a sound machine and you’re good to go. The truth has been whitewashed. Tinnitus has destroyed my and countless others lives. We’ve gone from happy, content, positive people to marginalised, tortured, recluses often addicted to drugs (legal or otherwise) and alcohol. We cling to false hope with a spineless charity misrepresenting our suffering and pain and ensuring all our friends and family will belittle our plight.

EDIT: I wrote this post when I was angry, frustrated and quite frankly hopelessly sad. Severe tinnitus does this to you. Luckily the BTA does care and does exist. You will see this from Nic’s very kind responses. My apologies to them.

85 Replies

Yay Knoll80, so, what would you suggest, exactly?

Hidden
Hidden

Well I trully believe anyone can get over a small hill or mound and money needn’t be the obstacle.

Knoll80
Knoll80 in reply to Hidden

I read this again and it truly sums up what a **** you are. And you are trying to ‘help’ people. God help us.

Yey! Read what I’m saying Xene. They need to be brutally honest about this affliction if they’re ever going to promote a cure rather than just another 100 years of live ‘miserably’ with it.

Hidden
Hidden in reply to Knoll80

All you’ve done is attack the BTA so far. Why not say what your real problem is? I’m not saying I have any answers...lol.

BTW, I do this for free!

Xene
Xene in reply to Knoll80

Yay Knoll80, I can relate to what you're saying but to be totally honest apart from those who suffer with extremely loud, intrusive T 24/7, apart from their family, friends and various T charities. I don't think the general populous give a s*** about T! That maybe because of lack of knowledge about it but I would think they are far more concerned about getting a possibly killer cancer than T even if it was promoted more regarding exactly how it affects some people!

T is s*** and those who sometimes come on here thinking they can talk for everyone, apart from the T guru as I affectionately call him as he does have to generalize but he always puts in his blogs "I can't talk for all people with T" which I very much appreciate, literally have no idea!

My real problem is screaming 24/7 tinnitus that has laid waste to my life. I’ve lost everything and to add insult to injury the NHS and BTA leads my family and friends to believe tinnitus is a little problem that’s easily surmountable by learning to ignore the ringing. I would ask the BTA how many of their so called success stories on their website are guzzling anti depressants and benzodiazepines to ‘ignore’ the ringing, irreparably damaging their bodies and minds? Tinnitus goes way deeper than just the sound. It tortures and kills. Brutal but truthful. Do cancer charities raise funds by saying, ‘Lung cancer. It’s a pain at first but everyone eventually adjusts’.....No they lay it on thick because that’s how you get money and attention for an affliction. Do we see tinnitus adverts with a father hanging from the stairs or a mother being wrenched from her children and committed to a mental asylum? This is what’s happening every single day all over the world. But no in BTA land we see some old Doris in her garden coping with the noise by pruning her Roses and doing a wordsearch while listening to cicadas on the wireless. How the hell is that going to raise awareness of the genuine pain of severe tinnitus sufferers who all too often hide themselves away until they can take no more. You people either have very mild T, no T at all or you’re freaking deluded.

The dialogue has to shift from learning to live with it, to learning to live with it is simply unacceptable. We’re so obsessed with human rights that we baulk at any slight injustice and yet there’s an entire community of tinnitus sufferers being tortured 24/7 for years by screaming noise. If it’s unacceptable for the CIA to do this to prisoners in black sites why on earth is it acceptable to inflict this on us without even a discussion on the medical option of ending your life? Another thing the BTA should sensibly advocate in the abscence of a cure for severe sufferers.

And I’m sorry but if you think severe tinnitus is a ‘small mound’ you should be here trying to help anyone even if it is for free. I’m teetering in the verge of ending my life because of this ‘small mound’ so excuse me if I come across as a tad peeved.

How can they promote a cure when there isn't one? You talk about adverts that should show hanging bodies - I've never seen an advert anywhere for T prevention / management / charities. Taking the BTA to task over this is coming at it from the wrong angle IMO. They're a small charity, entirely reliant on donations, doing their best with limited resources. Direct your ire to your MP and press them for better / any funding of tinnitus research.

I share your pain / frustration / experience - I've been 'on the verge' several times in the past and I no doubt will be again in the future. I don't believe people who haven't experienced severe tinnitus have the faintest idea of the level of suffering people like us have to contend with, but you have to ask yourself what are other people dealing with? If you look at the Health Unlocked website, there are different sites for countless other health conditions, some of which will probably have their own charity trying to help sufferers, who will all be saying 'why isn't there more being done'. The unfortunate fact is, despite the best efforts of the medical community over the last 40yrs, the best treatment they've come up as yet for T is learning to live with it.

Knoll80
Knoll80 in reply to Ruud1boy

I’m not asking them to promote a cure I’m proposing they and the NHS ditch the coping with the use of inappropriate drugs not designed for this condition, ditch the ‘awareness’ rubbish (nobody thinks they’ll ever get t so will never wear earplugs or care however much they tell people) and ditch the useless advice. 100% of funds and focus should be on a cure so in 50 years doctors are still not looking at people with the dreaded face as they declare, ‘ I pray it’s not tinnitus.’....those are the words I heard and i’ll never forget them.

HI Knoll, I know how you feel, when my Tinnitus was mild for 10 years I never even thought about it or would ever dream of coming to these sites or forums, 7 months ago I got I got a eat infection, and its like the level went from 1 to 10, its crucified me, i am still not sure if I can live with it at this level, everyone says its get better with time, so I exist (not live) until this happens, i am on antidepressants, never had to take any in my life until this arrived, I understand how you feel, not sure what else the BTA can do tho there is no cure , I to feel doomed....

Knoll80
Knoll80 in reply to hazyfan

I feel you. Unfortunately having T is crap but having severe T is unthinkable. The BTA could at least make the distinction.

Yay, Knoll80 I don’t know if you realised that aiding and abetting suicide in the UK is a criminal offence! So I don’t think the BTA will be talking about it now or in the near future!

Knoll80
Knoll80 in reply to Xene

My point is that it shouldn’t be even in the category of ‘suicide’ it should be a humane end of life solution for people in extreme suffering.

Hi Sunil how's your tinnitus now ? From how many ears your suffering from tinnitus.

Hidden
Hidden

The facts are that most people with T do move on to a normal happy life, and the BTA do a lot of good work to help people get through the suffering stage of T. I don’t understand why anyone would want to criticise that unless there was some kind of ulterior motive.

You bring up the age old argument of ‘my T is worse than yours’. We have no idea how bad other peoples T is. I know my screech was enough to consider suicide 6 years ago.

As has been pointed out, there is no magic cure for tinnitus but the good news is that the existing methods, promoted by many of those who have moved on for free, DO work. So why critisise them?

Just to add that two people who have spent lot of time helping people deal with T on the Tinnitus Talk forum were recently rewarded with a ban. It seems that these existing free methods of dealing with T are a threat. I wonder why?

Knoll80
Knoll80 in reply to Hidden

Unfortunately the ‘suffering stage’ you talk of can last forever not to mention the damage it can do to your health, life and spirit. Sometimes it’s just too much to bounce back from. I honestly think even if the noise ended tomorrow the trauma of what I’ve suffered would last a lifetime. Also I’m sure you’re aware as you herald your triumph over your ‘little mound’ that a nice big mountain of T could be waiting for you around the corner.

Hidden
Hidden in reply to Knoll80

Knoll = Small mound. Sorry my sense of humour is a bit weird...

Knoll80
Knoll80 in reply to Hidden

Aaah! I did wonder why you were being so incredibly belittling having supposedly been through the suffering

Hidden
Hidden in reply to Knoll80

Well your opening post and thread title did raise suspicion to be honest. There are people out there who would dearly like to derail the BTA as they offer people help for nothing.

Why not just share your problem without attacking a charity who are doing what they can to help?

Angela-H
Angela-H in reply to Hidden

I am always thankful that the BTA is there; I use no other forums or groups and I trust them.

Knoll80
Knoll80 in reply to Angela-H

I know I’m wrong to criticise them. I’m lost Angela. Tortured, confused, bewildered and lost.

Angela-H
Angela-H in reply to Knoll80

Hi Knoll80, I am so sorry to read of your suffering. On this forum we all care. Believe me, I went through what you are suffering when T got me 3 and a half years ago. Mine appeared the day after a major op. The pain in my head was so unbearable and I begged my partner to take me to Dignitas ........ I went to the GP, ENT consultant etc etc; all the usual useless routes. Then I found the BTA and realised that I was not alone, suffering. I had no sleep for weeks and I lost 2 stones (I was already slim enough). My family could not possibly understand. My life was over and I wanted to be left alone in my suffering Fortunately my grown up children had flown the nest - I certainly never wanted them to be involved in my nightmare

My route to habituation was - GP prescribed Zopiclone for sleep and Mirtazapine to lessen anxiety. I bought the Sound Oasis machine and a relaxation cd from the BTA (I still use the Sound Oasis each and every night). I went to CBT sessions which were not much use. What was a great help was the audiology department at the local hospital - I was found to have slight hearing loss inone ear for which I was given a hearing aid, plus a masker for my good ear. I would say that this is what lessened my T, over time.

My recovery was slow - I can write the whole of 2015 out of my life. I missed so many special family occasions.

After about 8 months I realised that I had not heard my T for a short time and it just gradually improved. I came off the tablets after 12 months and my life regained some normality.

I have habituated and most days i don’t hear my T and when I do, it is much quieter.

I have to manage my T so as not to aggravate it. Distraction works too.

Please read through all the positive posts for advice and you will find the folk in the BTA office very nice and helpful.

Angela xx

Knoll80
Knoll80 in reply to Hidden

Why would anyone want to derail the BTA? That’s not my intention. As I stated I just wish there a more honest stance on very severe tinnitus and what it can do to people rather than the constant downplaying of t suffering. Again I make the point on other charities....does Shelter show smiling, laughing homeless people happily dining on super brew under a cupboard box making the best of having no home? No it shows shivering depressed people suffering.

Hidden
Hidden in reply to Knoll80

Yes, but why would anyone want to promote the suffering element when they are trying to help people take a positive step?

I know the word ‘positive’ is banded around almost to the point it’s become desensitised. However, that simple choice, to start focusing on the good bits we have left is everything. As we get older, we get more and more ailments, the earlier we learn to appreciate what we’ve got, the better for us and those around us.

Here’s my short story and take on it. I’m sorry if I offended you BTW.

sites.google.com/site/tinni...

Knoll80
Knoll80 in reply to Hidden

No need to apologise. T has offended me I’m afraid. I was a happy fun person before all this. Now I can’t bear to wake up every morning. I have zero interest in digging deep to find the positives of struggling on with this nightmare. As I pointed out unfortunately T never truly goes. Guys like you all too often end up back in hell after a few years of coping it seems.

Hidden
Hidden in reply to Knoll80

With that negative outlook how can it ever leave someones focus?

Actually for many people T does actually go and not come back (especially after recovering from some physical injuries and drugs). For many more others, they simply stop noticing it in the same way people get used to wearing glasses. Whenever I get a spike I just make sure I don’t give it any attention (don’t attach any emotion to it) , then the brain gets on with the job of pushing it away from my consciousness.

For 99.9% of the time now, I don’t notice it’s there until I am reminded of it. When I am reminded of it my brain quickly filters it out again because it has rewired itself.

People can help to a degree but in the end, if we can’t help ourselves then nothing moves forward. If it’s if any help, I found counselling helpful in my first year. Forums are helpful to a degree but can’t really replace professional help.

drumcraw
drumcraw in reply to Hidden

who were the 2 people? they must still be members that's ridiculous banning them. my T IS very loud I measure it with the planes that go over my house as they approach Edinburgh airport to land, they are very low and loud and on a bad day my T is louder than the planes engines,i was a sales rep and semi pro musician till march 13th 2013 which is when I awoke to the horrendous whistling high pitch of my T. that was effectively the end of my life as I knew it, no more playing drums. music,socialising in bars and clubs. Listening to bands play and of course NO SLEEP.i have went from and outgoing person to a virtual recluse thanks to T my lifestyle has been completely changed and sadly the thought of having this for rest of my life is some thing I don't want to suffer! I was an outgoing cheery chatty person on the go 8 days a week spending time with my family and going holidays now I sit at home fighting the depression this afflicition has caused. when I tell people they usually hardly know what T is and then say" I cant even begin to imagine how that feels" then usually change the subject, I agree more needs to be dome to raise the profile of this dreadful curse and more needs to be spent on research I will NEVER learn to live with it

I’m of course aware that there are other horrid diseases but we are in a uniquely s*^t position in that our affliction is incurable, belittled and doesn’t even show us the mercy of killing us, we have to do it ourselves. Comparing it to cancer is absurd. Cancer brings your family around you in love and understanding and ultimately it’s very beatable in the vast majority of cases and if not, it’s over and no more suffering. There’s not a severe tinnitus sufferer on earth in his right mind who wouldn’t take those odds and circumstances over a lifetime of screeching.

I have zero alterior motive I’m just annoyed by my family and friends dismay at what tinnitus has done to me. They can’t believe that ‘ear ringing’ has taken my job, my home and my relationships away. Gone. And their disbelief is because their perception of this illness is formed by looking at relentlessly positive tripe on the NHS and BTA sites that tinnitus is easily managed by doing bloody meditation or riding your bike and the like. There is zero talk of varying levels of tinnitus and how ‘severe’ tinnitus is basically unliveable or at best your life will be unrecognisable. Hence our families think we’re just hypochondriacs at best or at worst insane.

As for the euthanasia debate, yes I get it, it’s illegal and a year ago I too would have thought it crazy that ear ringing would be so bad that you would consider it, but the reality is thousands of real tinnitus sufferers literally dream of the choice because the suffering is SO severe and endless. It’s truly terrifying and absurd and our minds cannot fathom a lifetime of it. Im a severe tinnitus sufferer, my T is unmaskable and hovers at around 15,000hz. It’s indescribable. I have no history of mental illness, I’ve led a successful ‘normal’ life I genuinely would feel relief if I could contact end of life charities and ask for a peaceful end because my life is now nothing but torture and I can’t imagine another 40 odd years of this. It’s inhumane. I’m basically jealous of animals now. I wish I was a sick dog rather than a sick human. In the same way the guy who has acid thrown in his face or the paraplegic it’s unrecognisable from the life I had before. Yet they get the choice, why on earth don’t we?! Is constant noise torture not deemed bad enough even though it’s a confirmed torture method?

Hidden
Hidden in reply to Knoll80

However bad things seem, I’m afraid it’s a choice in the end. There is nothing wrong with having a good rant. but in the end we have to decide whether we want to let it beat us (which does affect those around us) or find ways to focus away from the T and reduce the strsss in our lives which may be the root cause.

If you talk to anyone who has moved on from T, they will tell you that they don’t notice it unless they are reminded of it. This is because the brain is plastic and can learn to filter it out if we let it.

Unfortunately many people who think that a magic cure is the only way forward, get stuck. Of course that also plays into the hands of those who stand to make a lot of money out of a potential magic cure.

So, how long have you had T and how does it manifest itself?

I’m sorry all that you’re saying may be true but you sound insane.

Alas I’m nearly a year in and let me tell you I would rather have spent the tens of thousands I have already wasted on sound therapy, oxygen therapy, fasting therapy, CBT, etc etc on an expensive cure that actually works. My sound manifests as a horrid metallic high pitch sawing that never lets up and is caused by neck trauma and worsened by severe tinnitus PTSD. Another thing the BTA don’t even address- severe T can cause a lifetime of ‘permanent traumatic stress disorder’.

Hidden
Hidden in reply to Knoll80

How did you get the neck trauma? Is it possible that that caused the PTSD?

Temporary T is normal in most people after being subjected to some forms of physical or mental stress. The problem is, like many ailments, that we can become over focussed on it, even obsessed. When that happens it can get locked in and become more permanent.

Fortunately o

ur brains are very plastic. Once it realises that it is no longer a threat, it turns the volume down. The same happens with pain. Like pain, T is an important warning mechanism.

It does take a lot of will power to break out of the vicious cycle of T causing strsss and stress causing T. When you’re locked into this fight or flight state the T appears worse as the senses are heightened, including our hearing!

NicBTA
NicBTAAdministrator

There's a lot to take in this thread so excuse me if I miss anything, if there's any point you want clarifying, I'll do my best.

Our vision is a world where no one suffers from tinnitus. And we genuinely mean that. This vision and this hope encompasses everyone - whether you get tinnitus and you manage it well, in which case we hope the advice we give has helped, or whether your tinnitus is severe and all consuming, in which case - we are on your side, we want to help, we'll do the best we can, and we are fighting for funding and research that can take us further.

We possibly have shied away from talking about the grimmer aspects of life with tinnitus before, but I don't think that's true now. We have worked very closely with a number of families bereaved by suicide who have been superstars and very generous with their time helping us raise awareness and funds. In fact, even this week, one of our stories in the press is about how Liz was suicidal, but the help she's had has turned her life around: dailyrecord.co.uk/news/uk-w...

We do try to present a positive and reassuring face for tinnitus, because the fact that it becomes less intrusive and manageable is the case for the majority of people. If people's first contact with us was all doom and giving the worst case scenario that wouldn't be honest, and it would possibly prevent people who could habituate to the noise from doing so. Would you wish that on anybody? Of course not.

At the BTA, we're trying to do something for everyone. We're teaching young people about prevention. We're educating GPs and other health professionals. We give reassurance and information for people who aren't particularly troubled by their tinnitus, but want to know what's going on. And we can - and do - speak to the desperate, the suicidal and the ones without hope. Sometimes the same person, day after day, until they get to a place where they feel they can cope.

One final point - we are working very hard behind the scenes on pushing the research community towards a cure. I can't say much more at the moment, but if you follow our website over the next year or so, there should be a lot more news.

I do see why you say what you are knoll80, but I think it's a little unfair.

Knoll80
Knoll80 in reply to NicBTA

Thanks Nic for responding. It just becomes so difficult when family/friends etc start turning their backs on you and victim shaming because they’ve got a neighbour who has mild or fleeting t and he’s not bothered at all by it and they’ve read the NHS/BTA advice and apparently according to that I should be absolutely fine by now. My own brother screamed at me the other day that 50 million people manage to live fine with it! This ‘fact’ was relayed to him by a doctor friend of all people. He genuinely believes that there are 50 million people with severe 15,000hz bilateral unmaskable screaming in their ears because the official online advice makes zero distinction between volumes of tinnitus. He doesn’t care that I now deliberately seek out the noisiest environments like a town centre with multiple sounds so I can to just get a moment where I don’t feel overwhelmed by the noise in my head. This for a guy who loved spending hours walking in the countryside is a miserable subhuman experience which is entirely misrepresented by the BTA site.

Sadly my experience of severe T is that it’s an isolated wasteland, population of 1, with an impenetrable wall of screeching noise that isolates you from the rest of the world. I feel like I’m pressed up against it screaming for help but nobody can hear me.

Sadly I fear my family won’t be one of those willing to work with you even if they see my body carried out of my home because they’re so convinced tinnitus is no big deal and it’s my reaction to it that’s causing me so much distress.

Hidden
Hidden in reply to Knoll80

Many people on this forum would describe their T as severe. Mine was 6 years ago to the degree I had hyperacusus and couldn’t hear if my guitar was in tune when I was playing in the band

As I said, the first step is to change the negative mindset. How can you move on if you keep blaming others? Did you read my story BTW? Did you take on board my suggestion about having counselling? Do you want to help yourself?

Sorry if I sound harsh, but if a few people weren’t harsh with me 6 years ago, I probably wouldn’t be here.

Knoll80
Knoll80 in reply to Hidden

You raise a valid point and I concede I’m so traumatised that I’m not sure I do want to help myself. It’s literally like I’ve died and gone to hell. This experience has wiped out every positive memory I’ve ever had in my life. I’m devoid of love, joy and most importantly hope. T has been like a targeted assassination of all that I loved. I’m sorry I wasted your time and I do appreciate your responses. I’m just all over the place at the moment. I feel vulnerable, lonely, paranoid and angry. Words I would never have dreamed I would use to describe myself.

hazyfan
hazyfan in reply to Knoll80

Hi Mate, I could have written the above too, its traumatised me to levels of suffering I never thought were imaginable, and i am still suffering to a lesser extent, every minute of every hour of ever day.... I wake up everyday and its like a nightmare I woken up in with no escape, its take your mind and soul, like I say I exist, its got to get better, I cant believe this is it for us in life to suffer?? It has to get better......

Knoll80
Knoll80 in reply to hazyfan

I seriously hope so my friend. I too wake up and feel completely devastated every single day. Like an awful never ending loop your mind can’t see a single way out of. I’ve just spent the best part of 3 hours walking around town like a zombie. A year ago I was running a successful business and was happy and full of life. I look back on the weekend before T hit and I was out with my mates laughing over a few drinks and it seems like a different lifetime. I would literally sever both my legs with a rusty spoon to have that life back. Now quite frankly I look like a total down and out. I have so little left to hold on to. Tinnitus is the only affliction I know of that can reduce in a heartbeat fully functional intelligent people in the prime of their lives to ghosts clinging to the final shreds of sanity.

xCyborg
xCyborg in reply to Knoll80

That's exact me, walking around town like a zombie, unfortunately for me it's not London or somewhere in a 1st world country.

No past happy and full life either, so no matter what your volume, I'm willing to be in your shoes in a heartbeat.

Hidden
Hidden in reply to Knoll80

You haven’t wasted anyone’s time. I’ve also experienced exactly what you are describing.

The reason I asked that question, is because I remember being asked a very similar question by someone who was counselling me. She asked ‘Do you want to get better?’. At the time I thought it was a very strange question but later I realised that I may have been thriving on a kind of ‘poor me syndrome’. Also, having something like tinnitus can give us an excuse to blame our other failings on.

Another point raised by a diffeent counsellor was that if I was serious about committing suicide I would simply have done it and not bothered going to see her. She had a point.

That’s why I think counselling is so important. Preferably from someone who isn’t too close.

If you do get around to reading my short story you may find quite a few other things in common.

You definitely sound like you are stuck at what I call Stage 1. That may mean you are stuck in fight or flight mode as you are continually seeing the T as a threat. That does make the T worse. That’s why calming techniques can help to settle things down a bit.

Have you had short periods (even seconds) where you suddenly realise that you haven’t noticed the T? One of the tricks when this happens is not to ‘listen’ for it to see if it’s still there. It takes a lot of will power but you should find that the ‘silent’ periods will get longer and longer as you build up confidence in the brains ability to rewire itself.

It also helps to have other things to do which can take your focus away from the T. I know it feels like you are paralysed to start with but try to force yourself to do the things you like(d) doing. Walking in the countryside is very good one. So is socialising because it’s dificult to hold a conversation when you are only focused to your T.

Most importantly, you can beat this as the majority of people do. Many without the help of the medical profession, forums and alike.

Knoll80
Knoll80 in reply to Hidden

Oddly I’m not sure I am stuck in stage 1. My anxiety is really pretty low. I mean I sleep without meds and albeit I have to surround myself with noise (radio, sound machine etc) to distract my mind but I get a good 8 hours a night. I think I’m more in a second stage of being massively depressed about how ‘imperfect’ I now feel upon waking from that sleep to piercing noise and frustrated how I can’t actually do anything about it. The dreadful helplessness. I always felt like a can do person. I was a real entrepreneur and in to diet and fitness. I enjoyed being healthy and strong and now I feel horribly flawed and quite frankly frail. I can’t hold my own in day to day life anymore. I’m constantly backing down because I’m on the verge of tears. I sometimes tremble for no reason. Even my walk and general stance are different. I guess im cowering rather than standing tall and I often stumble like an old person. As I said I have PTSD yet it’s not ‘post’ because the trauma remains shrieking in my ears every single second.

I tried AD’s but they only increased those dreadful feelings of worthlessness and ruin. I did therapy early on- I was hospitalised- in the first month after a total meltdown and have since tried CBT. Unfortunately I still feel tortured and worst of all teetering constantly on the brink of insanity- like I can no longer trust my own mind. But worst of all I just feel like a disgrace to who I used to be. I don’t mind admitting my confidence and self worth were clearly built on much more fragile foundations than I ever imagined and are now shattered.

Sadly I’ve not enjoyed a single moment of silence except if I’m in a very sound rich environment and engrossed in talking to someone. But how is this helpful when all you crave is this those precious moments of relaxation and mental rest at home and a chance to recover from the ongoing trauma?

Sadly I really do wish someone would take me out back and put me out of my misery.....But that’s another hopeless avenue.

NicBTA
NicBTAAdministrator in reply to Knoll80

I think this sense of isolation is not uncommon in people struggling with their tinnitus, which is why places like this are so important. I hope this has helped you realise that you are not alone, and that people know what you are going through, and they get it.

I'm sure Steve (asw21) would be the first to say when he first got in touch with the BTA he was in a very similar place and it's been with pride - and admiration - that I have watched him escape from that dark place, and make the best of his life.

And I could give you dozens of names and stories like his - including one person who was suicidal and who flat out disbelieved me when I said his tinnitus wouldn't always rule his life, and who phoned me to apologise six months later ...

Hang in there, take on board some of the suggestions people are giving you, and the whole community here will work with you to get you through.

Warmest wishes

Nic

Angela-H
Angela-H in reply to NicBTA

Hi Nic, you can add me to your list of successes. I was on the GP's and audiologist's suicide watch initially, and I didn't believe my caring and professional audiologist when she said that my T would settle down. It has and I am habituated to it. I am also very grateful to the BTA for being there and to the forum posters who supported me at the beginning - and still do!

Angela xx

Knoll80
Knoll80 in reply to NicBTA

Nic I’m sorry. I know you guys do your best and are trying. It’s no excuse but as I explained to Angela I’m just lost and feel trapped in a whole range of terrible negative emotions. I’ve spent over 10 grand on trying to ‘treat’ this and got nowhere. I now have no job, no life, no one to comfort me amidst this blizzard of torment and my sense of self is completely shattered. Like less than a year of T dismantled 38 years of confidence and self esteem. I can barely look people in the eye anymore when I used to stand up in front of hundreds of people confidently. My life is hanging by a thread I’m afraid. The only thing keeping me alive is fear. That’s no life.

NicBTA
NicBTAAdministrator in reply to Knoll80

That's okay Knoll, I know it's tough. And if sparring with us on the forum helps you get through minute by minute, hour by hour, then I'm up for it... as long as you aren't too rude about it! :D :D

Knoll80
Knoll80 in reply to NicBTA

To be honest Nic I’m not sure how much sparring I have left in me. I fear I may soon be about to become another ‘poster boy’ for the cause.

Ruud1boy
Ruud1boy in reply to NicBTA

I'm intrigued about your 'one final point' Nic. Come on, give us a sneak preview! We need positivity & hope!

Knoll80
Knoll80 in reply to Ruud1boy

Sadly my friend my guess is that drug companies have zero interest in a cure and will probably try and defeat the likes of Susan Shore’s device at every turn. They probably now full well how to cure tinnitus but why do that when we’re the best customers in the world for AD’s, Benzos and sleeping pills. Think how many billions they would stand to lose on that crap they peddle if there was an actual tinnitus cure?

Knoll80
Knoll80 in reply to Knoll80

God I know that sounds like conspiratorial paranoia but my fear is that it’s entirely true. We’re such an easy to target, vulnerable and huge market of sufferers.

NicBTA
NicBTAAdministrator in reply to Knoll80

But how much money could they make from a cure? A condition that affects one in ten people? What if there was a drug that could prevent tinnitus, much as aspirin helps prevent strokes, and it gets universally prescribed?

Drugs companies would love a pharmaceutical cure for tinnitus, almost as much as people with tinnitus would love one!

Ruud1boy
Ruud1boy in reply to Knoll80

The American military pay out billions every year in compensation to their veterans suffering with T - it's the #1 post service medical complaint. It's a big enough problem for them to put significant efforts into prevention & treatment. The hope of a 'cure' I fear is a pipedream, but I'd quite happily accept something that could reduce the volume & intensity of the screaming steam-whistle in my head, even if it doesn't get rid of it entirely.

Hidden
Hidden in reply to Ruud1boy

That’s really interesting, I didn’t know that. I wonder how many of them think exposure to gunfire was to blame and how many think it was the emotional stress and PTSD? Maybe it’s both!?

Which comes first? The tinnitus or the PTSD? (thinking about Knoll80’s post)

Knoll80
Knoll80 in reply to Hidden

Good point but I do know that despite lost limbs etc, tinnitus is reported by many to be the most debilitating of all injuries by service people. A fact I would have been amazed by until I got hit with this - therein lies the problem. Nobody can quite believe how apalling this is until the day the ringing starts. Now of course I would let you take my arm, leg, both testicles and a fair proportion of my brain for a shot at silence.

Knoll80
Knoll80 in reply to Ruud1boy

I do wonder a bit with these figures though how much of it is ambulance chasing. Why wouldn’t you claim for an affliction that is immeasurable in an area of employment where it’s well known to happen?

NicBTA
NicBTAAdministrator in reply to Ruud1boy

I honestly can't at the moment, but rest assured, it's an international effort; it's all based on our work driving towards a cure - you may have seen the roadmap we've had out for consultation - it's taking that on and running with it

Hidden
Hidden

From what you are saying it sounds as though you are locked into a deep depression. Again I would strongly suggest counselling. Unloading on a public forum is brave thing to do but there may be stuff you need to get off your chest in private.

The mind is a complicated beast and there may be many different issues to deal with on top of the tinnitus. In fact the tinnitus may be trying to tell you something! I’m pretty sure it did with me.

BTW, when I was referring to stages I was referring to the 5 stages I experienced in my book/blog. I was fortunate that I didn’t experience a deep depression at the time, it was more severe anxiety. So no, deep depression was not Stage 2 for me.

Having said that, I have had 3 bouts of severe depression in my life. Looking back it was taking a more positive stance which helped me pull out of each bout. Depression is another vicious loop but by taking small steps you can pull out of it.

I realised that as soon as I woke in the morning, my first thought wouild be ‘There is something wrong with me....oh yeah, I’m depressed’, as soon as I thought that it set me up for gloom and doom the rest of the day. By using will power, getting up immediately and getting on with something constructive I gradually pulled out of the vicious cycle of depression without realising it.

Basically, if you think yourself depressed, you will be depressed.

Anyway, this all from my personal experience, I appreciate we are all different but if you take anything away which is helpful then that’s good. Please try to get some counselling!

Knoll80
Knoll80 in reply to Hidden

Thank you. I’m amazed you’ve given me so much time given I’ve been a bit of a **** to you here. You seem like a genuinely kind person. I am too, not that it’s overly evident in this thread.

Hidden
Hidden in reply to Knoll80

Yes, my sense of humour lets me down sometimes as does my slight paranoia (especially after few Jameson’s!).

Guys, Ive been moved to tears by this conversation. Knoll dont be amazed as he obviously thinks your worth it, as do I. I have no advice or words of wisdom, I dont know you and am never likely to meet you but, by god Im bloody rooting for you.....just felt I had to let you know

Knoll80
Knoll80 in reply to Shellipops

I’m rooting for you too Shellipops. To get this from ear syringing is insanely cruel. I too got the floaters and blurred vision, following T. Perfect eyes before. It’s basically the nervous system gone to pot from what I’ve gathered. An alien noise invading your head will do that strangely

Knoll, not being flippant, but its now of no interest to me anymore how I got it. I have it and for the sake of my 10yr old I need to deal with it. I go from despair to hope on an hourly basis. A lot of what you say deeply resonates with me but a lot of what Steve says makes sense. For me getting it out of my head helps. Talking, be it on this forum or to a therapist or whoever helps. I intend, eventually to reclaim some of my old life back, I dont know when or even how but its that belief that gets me through the day just now. Just looking forward to a month, year, decade from now

Knoll80
Knoll80 in reply to Shellipops

What an amazing Mum you are. My heart goes out to you and everyone dealing with this. I have no kids but I have a dog. He was very aggressive when he was younger that we nearly put him down. The night we talked about it I cried my eyes out on the sofa and sobbed so hard I thought I was going to die of the pain. In that moment I just knew that even though I could see no way forward with his behaviour I simply couldn’t do it. I loved him too much. I vowed to fight on and it took a long time but finally he started to change. Today people often see him strolling around without even a lead and they say ‘wow your dogs so well behaved, he’s amazing.’ And every single time I here it it brings a lump to my throat and I remember the time when we nearly gave up on him. He’s the single biggest achievement off my life. I’m so proud and filled with love for him. He’s also the only reason I’m still alive today. The thought of him wondering where I’ve gone and running up to strangers hoping they’re me breaks my heart in two. It’s not a human life but in that way in understand why you fight for your child and I honour and praise you.

Kids , pets.....they are all family and depend on us........tinnitus or not. You had faith that your dog could change and thanks to you he was allowed the chance to do that...dont forget that and have faith in yourself to do the same.

Knoll80
Knoll80 in reply to Shellipops

Lord I’m trying but as you know this goddam T brings you to your knees and holds your face in the dirt.

Hidden
Hidden

That’s the beauty of forums. Everyone has different experiences and needs. The reader can pick and chose whatever they wish to try.

Your technique seems to be working for you and that’s good. By the way, it’s typical on forums to find that for every post someone makes, there may be around 20 readers. So someone may well be trying out your ideas without you knowing about it. Lots of people are quite shy about writing on forums.

Another thing to bear in mind is that it can take months/years to move on from the onset of tinnitus. So you may not hear any feedback for a long time. Also, as a big part of moving on is avoiding thinking about anything tinnitus related, you very rarely see ex-sufferers come back to offer support for this reason.

I feel sufficiently confident in my brIns ability to switch off the sound now that it’s not a problem, however I still have to be careful I don’t spend too much time thinking about it. There are much more fun things to do anyway...lol.

I didn’t say you were insane. I said you sound insane. And you do. What’s even more insane is you don’t even realise it. I mean come on! I’m not going to avoid the sound of my own voice or my ‘voice mixed with other voices’ anymore than I’m going to avoid butter,stress, allergens, beer, meat, aliens etc etc etc.

Honestly! Sometimes I feel like I’m up s**t creek and I’m surrounded by people who don’t even know what a f***ing paddle is.

Hidden
Hidden in reply to Knoll80

I know that feeling of being on our own well!

Edited to say I thought a couple of posts were deleted but they were on another thread. My bad.. sorry!

I'm with Knoll on this one to be fair. Your rambling posts about breathing exercises & yoga poses just clog up the board as far as I'm concerned.

Hidden
Hidden in reply to Ruud1boy

On most forums you can block members from appearing when you log in. I’m not sure if you can on this one.

Personally I don’t see much point really. We are all entitled to our opinions and I don’t think Sunni is trying to make any money out of it. More like he seems passionate about helping people.

I think most people find that relaxation techniques do help by reducing anxiety levels. I found going for walks in the countryside did the same.

It’s difficult not to keep repeating things either as newbies don’t often read through all the threads (or same thread) before posting questions. That’s why I often post a link to my book/blog. Most of my thoughts are there if anyone is interested.

Nothing naïve about it, it's just that in the main the stuff you post is impenetrable gobbledygook (IMHO). You said in a post a while ago, that your T usually goes away after you do a 2-3minute breathing exercise, so you'll forgive me I hope for my assessment that you are NOT in fact fighting the same monster that I, and I suspect Knoll, are fighting.

I do usually try to bite my lip on this forum, to try and keep everything positive & supportive, but I find it difficult with your posts.

Knoll80
Knoll80 in reply to Ruud1boy

Amen to that.

Please do continue. If nothing else it provides an amusing diversion. It’s also so bloody confusing that when I’m trying to wrap my head around it I actually don’t hear my tinnitus.

Hey I’m reading this again, trying to see if maybe there’s some sense in it and it occurred to me that in point 2 you say to ‘shun’ TV but then in point 3 you say to not talk when the TV is ‘ON’. So hold on- What’s it to be ....no TV or yes TV but keep very silent and ears firmly plugged with sesame oil cotton swabs while watching it?

Also if alcohol stops your tinnitus for 24 hours what in God’s flaming earth are you doing here?!?! I would be in the pub all day every day revelling in silence and real ale induced nirvana.

Looking at this device you might as well Mcgyver an electric toothbrush with a headphone earbud taped round the end. It will do exactly the same thing.

Thanks Sunny, I’m going to try it and do your breathing exercises today.

I find exposure to noise decreases my Tinnitus and Hyperacusis, silence amplifies matters considerely. I have my sound generator attached to two loud speakers and on every night in my bedroom 24/7. In the morning I have breakfast and listen to TV or music . I'm never in silence, and I sleep well to both external and internal sound.

I do agree,breathing the right way has a magical affect on the Brain and body. Furthermore, breathing through the nose is of great importance and even sleeping on the right side of your body has huge health benefits which counter the effects of Tinnitus on the mind. Sleeping on the left side and breathing through the mouth can, over time, create digestive disorders and other health problems.

I do breathing exercises as soon as I wake up and make sure my body is on the right side with my head bent as far down as possible with my body straight. Breathing for 20 minutes and cranking my head downward I can feel the tension at the top of my spine melt away and any tension in the crown of my head disappear also. When I awake from the exercise I feel as though I've had 9 hours sleep instead of 6, and a greater self awareness. I'm happier now than any time in my life despite living with constant Tinnitus and Hyperacusis 24/7.

Breathing and sleeping the right way can overcome the worst that life throws our way.

I agree 100 percent with your comment Sir,!

Knoll80
Knoll80 in reply to starshine53

You are happier now than any time in your life despite living with constant tinnitus and hyperacusis?

May I ask how on earth that’s possible?

starshine53
starshine53 in reply to Knoll80

Hi ! I do know what you are going through, my Tinnitus and Hyperacusis came on suddenly and without warning. It was utterly, utterly hellish, there were a cascade of different ear piercing, screaming noises,so much so I was terrified I could go deaf unless it stopped which it didn't,it went on for 3 months before it slowly subsided.

At that stage my wife and I rented a holiday cottage by the sea in Northumberland where, incredibly all the noise suddenly stopped completely . I was beside my self with joy but it didn't last: as soon as we were back home a milder version of Tinnitus made its entrance. Hyperacusis soon followed soon after. Curiously,my Tinnitus seems to change whenever I leave home, to either high or low for some mysterious reason, also,the longer I sleep the quieter it gets, I find correct breathing calms me whenever I get a spike. My Hyperacusis hums away in the background like an orchestra complementing the Tinnitus but, thankfully I found a way to mask it completely for better sleep.

One last point, I'm not happy because I have Tinnitus,I'm happy because I have control of my life despite Tinnitus. Many people with far greater health setbacks than I go on to lead happy lives.

At the moment your going through a Tinnitus storm, be assured it will not last at the level it is now. Concentrate on your breathing through the nose, not your mouth as this will make matters worse for you. Also it sounds as though those around you are not very understanding of your situation, this will just make matters much,much worse for you. Your going through a torrid time,it will get better.

Sunny trust me your experience of ‘tinnitus’ is so far from almost everyone else’s on the planet. Are you sure you even have it!?! Have you seen a psychiatrist? I say this sincerely because it’s widely recognised that for people with severe tinnitus wearing earplugs -unless it’s very noisy- is absolute hell. I have some 30db custom plugs. When I put them in at home or in a quiet environment the sealed in T screaming in my ears is insane. Im fairly sure that if a normal person suddenly heard the noise in their ears they would pass out with the shock and trauma. It’s that loud! It took me months to adjust to using them and not feel physically ill from the increased noise. It definitely DOES NOT silence it as you suggest.

Hidden
Hidden

It is an interesting subject actually.

I’ve come across many who get comfort from wearing ear muffs and noise cancelling headphones. Also those who surround themselves with Oasis machines. Conversely, I’ve come across many who just dealt with the fear and re-introduce themselves to sound and move on.

There is this big argument about noise induced T vs stress induced T. I think it’s safe to say that the suffering element with both is...fear.

It’s also curious that so many people can be exposed to extreme noise stress and emotional stress, without acquiring T. Maybe the stress was dealt with another way?!

This is why I personally believe the psycological element is the biggest factor.

The body has many ways of crying out for help. Maybe we just need to listen to it?!

Barking

I am so very sorry that is so bad and I am sending you a massive virtual hug. Other things plus this led me to a very dark place earlier this year. So I really do empathise with your pain and frustration. There needs to be more research but this cannot happen without money. Money can come through awareness campaigns so we all need to be doing our bit to raise awareness. Writing to our local papers, getting our families and friends on board, taking part in fundraising events and using social media can all help. Many people of prominence have T and they need to do their bit too. So let’s do what we can and in the meantime let’s continue to use this amazing forum to support each other when we are going through our bleak times because we are not alone.

Love Luverly Lucie xx

I totally agree

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