(Moderator's note, this post and thread contain discussion of tinnitus and suicide. If this is likely to be triggering for you, please take care of yourself and use our pinned resource list for support)
I wish people would stop and think before they say “tinnitus is almost always harmless or not serious “. Tinnitus can cause severe stress, depression and anxiety. It causes social isolation, destroy relationships and marriages. It can prevent parents interacting with their children properly. It means people cannot listen to music or the TV and radio properly. It can be severely debilitating. It can lead to suicidal thoughts and yes actual suicide. It can cause unemployment and the poverty that goes with it. TINNITUS IS ALWAYS SERIOUS. If we go round peddling the idea that tinnitus is harmless, how the dickens do you expect the government to spend any money on research???
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Pipster25
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Some toxic positivity is awful especially some psychologist or audiologist who claims to have loud tinnitus and overcome so easily if u can live withit
Tinnitus makes me feel tired, as I cannot sleep well at night. Tinnitus is a terrible disease with no cure!
B
I am lying down and con despite hearing tinnitus. This is the second best compared to a deep sleep. Resting helps to energise me. Even if there is no cure, I can still live well with tinnitus
2
A Tinnitus affects my sleep and concentration. Hence it reduces my efficiency. I can no longer be in control at my workplace.
B
I can concentrate on my tasles most of the time. I can do whatever I need to do despite the difficulties caused by tinnitus. This makes me feel strong.
3
A.Tinnitus invades every aspect of my life and makes me feel useless.
B.
Tinnitus is present most of the time and is a nuisance Regardless of tinnitus, I can do whatever I need to do. This makes me feel useful.
4. A I make lots of mistake coz of my t
B.
I can do most things as well and accurately as I used to before I had tinnitus. It may take me slightly longer to complete my tasks. It is OK to double check my work for accuracy. My performance is intact despite tinnitus.
5
A.
Tinnitus is like a fog that affects my performance.
B.
I can see, hear and think even when I hear tinnitus Loud and clearly.
of the night, and achieving restorative sleep. About 70 per cent of patients seeking help for tinnitus report some form of sleep difficulty. But it is not clear whether the degree of sleep difficulty is related to the loudness or quality of the tinnitus of whether it is related to the psychological impact of the tinnitus
In a study conducted in our clinic in collaboration with the Universities of Nottingham and Cambridge, we assessed whether the loudness of tinnitus was related to sleep dis turbances (insomnia), based on data for 417 patients. The analysis showed that the loudness of tinnitus is only indirectly related to the severity of insomnia. In other words, louder tinnitus does not necessarily lead to more sleep disturbances The severity of insomnia depends on the amount of depression and annoyance caused by the tinnitus. The more depressed and annoyed a person becomes due to their tinnitus, the more sleep disturbances they tend to experience. According to the theory behind CBT, emotional disturbances such as feeling irritated or depressed are not directly due to hearing tinnitus but rather are the result of our thoughts about tinnitus and its impact on our behaviours. Therefore, in order to reduce tinnitus-related sleep disturbances, we need to manage our thoughts and behaviours. This is the aim of CBT for tinnitus as described in this book. Listening to music or background noise at night-time is an avoidance behaviour, and it does not address the key cause of the sleep disturbances, namely the tinnitus-related negative thoughts. In the chapters on treat ment, we discuss how to use CBT to sleep difficulties. manage tinnitus-induced
Pipster25 I don't disagree that Tinnitus is not serious. In fact, we should always eliminate anything underlying that is life-threateningly serious and get any necessary treatment. However, far more often than not it is a unfortunate symptom of aging, hearing loss, that with longevity is more and more common. Stress is an awful "burden" on society - and I don't mean those who suffer from stress.
As someone who says, "always almost harmless or not serious", I'm saying we have to changed our mindset. I also use sleeping tablets, antidepressants, a music headband at night and carry earplugs during the day. Yes, this is serious, but in the grand scheme of things I'd rather have Tinnitus than a lot other illnesses and disabilities. All these things help me keep a positive mindset.
I've learnt this from experience and I care deeply about sharing my experience which requires me to think of it as "always almost harmless or not serious". Unfortunately what works for one doesn't always work for others, and we all have to find what works best for us.
In the long run, we can't let Tinnitus beat us and I hope you find your solace too; I hope we all can.
On waking my T is scretching to the point I have to get up, its at its worst.
I have been to see ENT once in 4 years as they consider my case non urgent to be seen again, I have been to the T clinic many times and feel there is no understanding of the impact this has on you. Read a book try meditation is all being suggested i have tried that for 4 years !!
Or you could have drugs which make it worse !!
As you can tell I am so at a loss , sorry for the rant
I’ve had this incredibly loud jet engine screaming since a virus almost 10 years ago.
Day after day I see things crumble around me. Relationships, work, social you name it, it’s all seriously affected.
I’ve heard it so many times, ‘T’ doesn’t cause ‘no longer being here’ as if that either helps or is true. I personally knew one person who could no longer take this and decided to leave the party.
I get it, don’t pay it any attention and don’t be negative about it. Absolutely that does have its place but it cannot be downplayed either.
I think you are right to bring this out because it is the ‘ugly’ side to this condition.
If people are allowed to dismiss it as being ‘annoying but not that serious’ it will never get the respect and funding it deserves for treatments or possible cures.
The reason that there isn't a universal treatment for tinnitus - well one of them - has nothing at all to do with it not being viewed as a serious issue. It has everything to do with the lack of an objective measuring point of tinnitus being available.
Without that, there's no baseline to interpret the efficacy of medications, of treatments - the input in clinical research right now is based on patient questionnaire responses.
Pharmaceutical companies like money - what they don't like, and what prevents the arrival of a pill-sized treatment is any way to quantify the effect of a drug in development. They know there's money sitting on the table, but in lieu of biomarkers, there it will stay.
Vincent, how would a treatment be able to mitigate a subjective reaction?
Nobody is any doubt that some people describe themselves as suffering as a result of tinnitus - the issue is 'how can how someone feels about tinnitus be medicated or managed by another form of medical treatment?'
If we sit down and think about that for a while, the scale of that problem - medicating or treating a reaction which has no objective measurement other than what the person is describing - is massively daunting.
I get it , thats why some research showing like loudness make no difference in suffering is always not objective outcomeIts always about how u think about tinnits,
I remain skpetical, like as i said if one transprent man keep next to u in your ear disturb u, i m using analogy not hullination, u can treat it as nth?
Talking about "input in clinical research right now is based on patient questionnaire responses", I would like to react on this.
The same thing happens with psychological and psychiatric problems in general.
I am pointing the approach of this issue that is focused mainly on the psychological impact of tinnitus.
And if you ask me, this has everything to do with the reasoning that we ( doctors and specialists ) say "that we can't do anything about the source that's creating tinnitus" so we focus on what we can do mentally.
At the same time I've red somewhere that science is doing research ( with rats ) in the field of stem cell therapy.
Developments are not yet advanced enough to apply this to people. At this stage it ( stem cell therapy ) can lead to cancer, so it's a big risk.
But I can't assess how slow or fast these developements are going and what factors influenced this.
So it's very logical that in the meantime we have to deal with tinnitus and the focus on mentally influence.
To be honest, I feel disappointed about this also because I am a musician who can't play his guitar anymore ( even nylon acoustic on a low level and playing for just a few minutes ) without having spikes afterwards. I've become my own enemy.
I joint the musician-tinnitus group last monday for the first time. I don't know if it will bring me something usefull? I'll give it a try for some sessions and see.
All the best to people ( who are ) dealing with tinnitus.
So sorry , my first time with T was similar to your description. Started with a flock of screeching parrots which woke me up. I was terrified. I couldn't even get out of bed. It quietened down a bit after an hour and I managed to call my doctor. Left me with a constant high pitch T . Totally wrecked my life for the next few years. It did get quieter over the next 10-15 years. The new T ( thanks to Atorvastatin) is similar, constant high pitch , but I am dealing with it better this time. T comes in all shapes and sizes, That I think makes it so difficult to treat. ... ps if anyone finds the computer makes their T worse ( it does mine), try wax ear plugs. .
Words, Pipster25, are important. So it would be really nice if people when making threads like this consider the audience as a whole and make it clear that they are mentioning suicide.
A brief note at the top of a post will allow people who are likely to be triggered by the word or discussion around it to make an informed decision about whether or not to read on.
I am sorry Pat but I think thats just wokery , so I beg do differ. We do not need to be warned if suicide is going to be mentioned or anything else for that matter.
'Wokery' is a term which you can apply to my comments if you like. I would prefer not to get into Daily Mail-like abuse on this forum, and luckily I have the ability as a moderator to tell people that they can be polite, respectful and agree to house rules or leave this community if they feel they are being silenced.
Health Unlocked's terms and conditions for moderators are pretty clear on this -
"Self harm or suicide. HealthUnlocked does not currently provide a safe environment for professional medical advice.
Discussion that involves any apparent intention of self-harm or suicide suggests the need for professional help and advice.
Such discussion also presents a risk of distress and possible triggers to other vulnerable visitors to the community. Therefore, the principles are: • Remove the content as quickly as possible. "
I hate to be the one to break it to you, Pipster, but you're on a woke platform and what I should be doing is deleting posts left, right and centre. If I do that, I'm stifling freedom of speech and not allowing users to express themselves. If I don't do that, I'm in breach of the guidance for moderators and could have our community blocked as a result.
So, again, as politely as possible, you can follow your own thread title and be mindful about what you post or I can do it for you.
It seems clear to me Pat from the tone of your original reply to my post, that I am being both censored and censured, purely because my views do not concur with that of the moderators or established opinion. What you want me to do is to add something to my post at your say so, something which I do not freely chose to put in myself. You want to control what I write. Yes, I do call it woke, because that is what it is. You can call it abuse if you like. It has absolutley nothing to do with being disrespectful or impolite to anybody. There is no need to ban me, as I will not be making any futher posts. I will leave you to be in charge of the back slapping echo chamber you have created.
Pipster25 Your post is a powerful reminder of how deeply this condition can affect people. It’s so important that we all remain mindful of the impact our words and language can have on others. I would truly hate for this post to be removed or for you to feel unheard or misunderstood when your intention was simply to share your thoughts out of frustration or maybe kindness to want a solution for this terrible burden we shoulder.
Pat, and moderators like him (that I think are rare), do an incredible job, and I have so much admiration for him. He creates a safe and supportive space for those who need it most, often making a real difference—whether through direct conversations or by fostering a community where we can support one another. Maybe even saving lives through his direct support or indirectly by allowing us to support each other.
A safe and understanding space can be one of the greatest sources of healing. I would be genuinely saddened to see anyone leave, no matter the reason. Whatever path you choose, I wish you nothing but the very best on your journey.
I haven't created anything - I am responsible for making sure that people here are safe and if that somehow upsets your 'everything goes, nobody is accountable for their words' worldview, so be it.
Why is it that anyone who disagrees with the very understandable rules which the forum platform sets out when you make an account somehow doesn't manage to read them and then becomes incensed when they are politely asked to not act in contravention of those rules?
It's not censorship - it's reading and agreeing to behave in accordance with an agreement to use a platform. Your issue is with Health Unlocked but I somehow doubt you will be taking it up with them.
My issue Pat is with you. You are using these rules to slap down legitemate arguments or viewpoints such as the ones in my post simply because you dont like what I say. It is nothing to do with Health Unlocked. Its nothing to do with keeping people safe. You say in no uncertain terms that the Tinnitus UK forum is a platform for wokery and you speak of our tinnitus community. Doesn't a community consist people of all shapes and sizes and of all viewpoints. Not just people who read from the Tinnitus UK wokery bible. Should the Tinnitus UK forum moderators really be declaring themselves woke? So be it as you say. I'm out of here.
I advised that the platform you are complaining about may be considered woke if it has specific thoughts about asking people to be considerate about others feelings - the very point you were making in your original post.
This is not, you will notice, a statement that Tinnitus UK is 'woke' but that a platform which differs from your beliefs about suicidal ideation may be considered 'woke' if it contravenes your beliefs about unfettered speech.
Pretty straightforward stuff, Pipster. You can manufacture a conflict with me and the charity if you will, but at the crux of things is the truth that you are being politely asked to adhere by rules set by a platform holder which you don't agree with.
This is your privilege and you can go elsewhere if you don't want to comply with the platform holder's rules. Nobody is asking you to not talk about suicide or having difficulty with tinnitus.
What you are being asked to do is be polite and considerate of other people's feelings and Health Unlocked's user agreement - which you agreed to on making an account.
[DISCUSSION CONTINUES REFERENCE TO SELF-HARM AND OTHER CONSEQUENCES OF EMOTIONAL RESPONSES]
Pipster25 may I suggest you taking this all out of context? You are certainly taking this very personally.
Anyway the reason for my response, is that I've shared a similar frustration today following a conversation with my GP about my fitness to drive and lack of communication from DVLA. This follows a couple of recent car accidents (yes, more than one) I've had. The incidents may have been an indirect of my tinnitus, causing stress and lack of sleep, and further health issues. Luckily they haven't been able to find any serious underlying condition. I'm not here to talk about that specifically, but 6 months waiting for some one to make a decision, I had to be very careful about my choice of words, during today's consultation. I know, and have to remember that my doctor is just looking out for my best-interest and has a real duty of care for those around me.
Nonetheless, I'm at the end of my tether and I had to apologise for my choice of words on a number of occasions during today's consultancy. As my appointment was about my fitness to drive, it is ironic I had to stop myself from driving out of the GPs carpark until I'd calmed down.
My point is our emotions can have a considerable impact on how we view and express ourselves and make decisions. Tinnitus doesn't help. So, as you say Tinnitus it is serious and, just as the title of your post states, we have to choose our words carefully.
Tinnitus has a far broader impact than internal frustration or just a few ill-placed words; our choices and actions potentially could have a deadly impact, not just self-halm. Luckily both my recent misfortunes only involved myself, one of which I was travelling at 50 mph on impact. Although I've suffered amnesia and have no recollection of the first accident, I walked away unharmed. However, I do know I wasn't sleeping well around that time, so I can only raise my hands and say "I probably made the wrong decision to get behind the wheel". In case you're wondering, my second accident involved hitting a pile of rubble on a country road at night - could have happened to anyone - then again my sleep had been poor.
We have to hold ourselves responsible for our actions and be mindful as much as we can, or otherwise learn from our actions and poor decision making. Finally, whoever is at fault or whatever the consequences we should be able to forgive and support others during such times. None of us are immune making the wrong choices.
I am more at your end of this argument which might just be me showing my age, but the forum rules are the forum rules. So if you want this forum to continue, follow the rules. I do, so I'll give warnings if ever necessary.
So, about 10% of people worldwide have chronic tinnitus, increasing with age. I was 17 when first afflicted, after taking an expired antibiotic, and found it wildly upsetting, isolating, depressing. Only about 1% of 17 year old girls have chronic tinnitus, and I'd never heard of it. The ear doctor was dismissive. I couldn't make friends, and felt cursed. Scientists claim that some people never get very upset about it.
Mine still sounds about the same 55 years later, though its somewhat louder, I can hear it over most electronic sounds, like fairly loud TV or loud white noise. It's pretty constant though, which is good in comparison to others here. I have little hearing loss, which is also good by comparison. Sympathy to those with hearing loss and varying ear noises, that has to be harder. I'm sure no expert.
I spent years trying to hide from the noise, afraid of the feeling of being cursed. I eventually discovered I could make friends with it more or less, just experience it as an invisible scar on my hearing, like an ugly scar that you see every day, but I didn't need to feel negatively about it anymore. It took me decades to come to that insight: If you just listen to it and breathe deeply and think peaceful pleasant thoughts, it eventually stops feeling so dark and terrible. You can even use it as a trigger to feel good about yourself for overcoming the dark feelings.
I totally agree with what you say.The comment " oh everyone gets that," is soooo frustrating.
I used to sympathise with my boss who had severe T but that was before I had it myself.We had an alarm that beeped constantly & this was unbearable to the poor man,senior management's response was that he should learn to ignore it or wear earplugs.Lack of understanding is not helpful
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