Acceptance

[Jbard]

Hi

I haven’t posted on here for a long time, over a year I think. I wanted to try to completely blank out my severe tinnitus, in the hope that not talking about it or thinking about it might allow me to habituate more

Unfortunately that didn’t work, I’ve had it now for over 2 years and over time it had just increased in severity gradually. It has robbed me of the many relaxing times I used to enjoy. For example I was a keen rambler, used to go walking all over England enjoying the stunning peaceful countryside listening to the birds and the wind blowing and trees rustling. It used to be so lovely. I don’t do that anymore as I can’t enjoy the peace and quiet of the Yorkshire dales or the Peak District due to my world being disrupted with extemly high pitched loud hissing combined with even louder buzzing, humming sounds that echo throughout my head. Nothing masks the high pitched screaming that resonates 24/7 in my head and the quieter the environment the louder it becomes so the peace and quiet of the beautiful outdoors is now lost

Other enjoyments that Iv lost are things like reading a book. Nothing nicer than curling up with a good book and relaxing. I could only do this if I had The Tv on full volume or loud sound therapy blarting out in order to attempt to slightly mask the sounds in my head. This defeats the object of the enjoyment, I also no longer enjoy my garden which used to provide a lovely peaceful oasis on a summer day but is now an area where it just serves to heighten the tortuous noise that blasts down my ears and echoes through my head in short tinnitus takes away any relaxation method whatsoever relaxation for me means peace and quiet and tranquility and that disappeared long ago

Yes tinnitus has taken a lot from me and it makes me so angry some days, what makes me angrier though is the suggestion that if you stress it will become worse. NO IT WONT. Tinnitus is a real physical condition it is not psycho - sematic and is not dictated by ones mental outlook. The suggestion that if you chill and relax ( which in itself is impossible) you will habituate and the tinnitus will get better simply isn’t true. Tinnitus creates stress, stress DOES NOT create tinnitus. There are so many suggestions that tinnitus can be helped or made worse by ones state of mind. If you’re tinnitus suddenly gets worse it is a real physiological deterioration in your condition not an imagined interpretation to stress or anxiety. If you had for example a chronic ailment with your eyes or throat or kidneys even, and it became worse you wouldn’t put it down to anxiety you would recognise it as a physiological change for the worse in your condition. This is the same with tinnitus. To relate tinnitus with anxiety, stress depression trivialises it to the medical world and I believe as such this is one of the reasons it has a very low profile, has little research invested into it, and very few specialist minds interested enough. Because tinnitus is not generally painful, doesn’t kill you ( other than by suicide) can’t be seen or x rayed or scanned (unless of course underlying cause is identified) then it is not viewed as warranting much intervention or recognised as the devastating debilitating condition that destroys lives instead it is far easier to link it anxiety and suggest that ones mental state or outlook can control it or effect it I can absolutely categorically state that my anxiety levels (or lack of) have never ever impacted on my tinnitus level my tinnitus has grown worse over time, it is completely beyond my control, it is independent of how happy sad angry frustrated I am feeling. it’s deterioration over time has resulted from the progression of a chronic physical ailment nothing more

Over time I have tried it all, hearing aids tinnitus maskers sound therapy, ENT consultants etc yet it continues to worsen. I am accepting of it now, there is nothing that is going to remove it so I have to accept that this constant racket through my brain is part of me , I have accepted that enjoyable pastimes have gone and won’t be enjoyed again, I accept that the word “relax “ will always have a very different meaning to me than to others I accept that my once lovely life is now a very different one a darker one and a sadder one. However im alive, living this life waking each day and going through the motions I suggested to my ENT consultant that I have both my auditory nerves surgically severed as complete deafness would be preferable to this but he explained this wasn’t an option as the tinnitus may still continue. once told that I then quickly came to realize that the only option that may help me slightly was to give up searching for an end to it, to stop discussing it, to try and stop thinking about it and just reach a state of acceptance This is what I have done hence why I haven’t posted on here for so long. has it made my tinnitus better?? Absolutely not. it continues to wreak havoc throughout my head every hour of every day but at least I no longer waste energy searching for treatments or therapies that will take it away I just accept that my life is different now

So in short I just want to say that whilst tinnitus isn’t recognised or described as a disease as such it behaves in exactly the same way in terms of its impact on lives but please please avoid linking it to anxiety/stress as this is not helping its recognition as a chronic physiological ailment that is crying out for research and funding to pursue progress towards treatment. it is not psycho-sematic it is not caused or made worse by stress, it acts independently due to its chronic pathological progress. “mind over matter” theories are only serving to demean this dreadful ailment in the eyes of the medical world and the public in general which is not going to help any of us

To people with long term severe tinnitus like myself Accept that you have a long term chronic condition that is a physical and real condition for which there is currently no cure and little in the way of treatment. If it should become worse it is not made worse by your stress levels, it is not because you are anxious or depressed it is because your condition had worsened. Oh yes you may very well feel anxious or stressed but remember it’s your tinnitus that is responsible for that and NOT the other way around

I wish everyone all the best and hope that you can all gradually move towards acceptance as I have once you do accept at least you can attempt to move on with life, just knowing it will be a different one. one in which a part of you will always grieve the lovely things of the quiet relaxing and peaceful life that you once took so for granted

[Woodentop99]

WOW, this is a remarkable post, exactly how I follow that I have no idea, though your “pain” is very clear throughout your post, I need to ask you this, as a retired mental health nurse ( Rmn) I hope I have misread what you say here? Please tell me your are not saying “goodbye “ to life I hear clearly the word “acceptance “ in your T but there was nothing about carrying on regardless,is there anything in your life you “ enjoy “ look forward to?? I pray I have taken your post incorrectly and that you are continuing the fight come what may, I also hope the day comes when we read “ breakthrough in T”, again an absolutely incredible post , stay strong.

[Xene]

Yay Nicu09, welcome to the acceptance and resignation club! It's not easy (understatement) but when all else fails that is all we have left! Many people do habitate their T in time but for those who don't It is indeed a very harsh learning curve!

Best wishes

Xene

[Mille23]

Hi Nico09

Thank you very much for sharing your Tinnitus story. It is so Well described. I am sure we are many who has the same story, but still try and try and try.....to quiet down the devil. How did you get tinnitus from the start?

[dsh2358]

Thank you !!

I wish I could afflict this on the non Believers just for 1 week . Just for them to

See and feel what we go through everyday of our life . I think then someone would

Pay attention!!!!!!

DSH🇺🇸

[Sally07]

Hi. This is an amazing, insightful post. Thanks so much for sharing! I just wanted to add - I think one of the worst things about tinnitus is how there seems to be no logic to it! It's absolutely true that it strikes some people and never relents, doesn't respond to any therapy or treatments, and that's completely awful! For some people though, their tinnitus does seem to respond to therapy or vary throughout the day or just 'get better', though no one knows why this happens in some and not in others.

For instance, I believe that my tinnitus does vary with my stress levels as well with levels of fatigue, but this doesn't mean I think it's psychosomatic. Intense emotions make a real physical impact on the brain. For instance, I know that prolonged stress or depression can reduce the quantity of grey matter in the hippocampus (and probably other regions too, but that's the one I know for sure). Grey matter is where all the neurones are, all the nerves, and a change in how these nerves communicate is often implicated in tinnitus, so it's no wonder people with a history of depression are more likely to develop it. When I developed mine, I was in a state of unrelenting worry and panic that had lasted for many months and I link the onset of my tinnitus with this state.

To be clear, I am NOT trying to belittle your experience in any way. I'm very sorry if it's coming across like that. I agree that tinnitus is often triggered by a physical cause that cannot be repaired such as hair cell damage in the cochlea and I know that for some people there is no cure and no relief. I have a friend who's in this situation, and I WISH that medical science would do more to help her, and that doctors would stop telling her to 'learn to relax' or whatever. I think you're doing a great job in a horrible situation! But I know that for some people, stress does play a part in this incredibly baffling condition, and that there is hope for improvement for them if they deal with any chronic mental health condition.

Very best wishes!

Sally

[LouisepMartin in reply to Sally07]

Really great post and so helpful to me. Thnx x

[Tarabel]

Nicu09, reading through your post, I can identify with every single word. I only joined this forum last week for the first time, having taken the view that after 40 years of suffering from tinnitus, there wouldn't be anything new which might trigger different coping strategies and I find not talking about it more helpful in some ways. My T was caused by a very serious car accident while living in France - the French medical advice quite different than the UK, medication after medication (none of which worked). Returning to the UK after 11 years, I was referred to the ENT hospital in London, I recall getting very angry when I was told to relax and try yoga. Half an hour of yoga drove me up the wall, all I could hear was the T. Over the years, I have done as you have - tried to do everything to forget about it (not possible) or mask it (impossible) - tinnitus clinics, hearing aids - I also was advised not to have surgery as this might not make any difference. I can't read a book in the quiet, can't garden, very difficult to concentrate when in meetings (I just wish my colleagues could hear the noise). Recently the volume has increased, trying relaxation music, apps etc but after 4 hours sleep, wake up with the noise - this morning at 5.15am it would have been nice to hear the dawn chorus but I couldn't due to the noise in my head. Getting advice to relax is the worst thing for me, I manage "loud" exercise, Zumba and badminton but now swimming is impossible due to the noise. I tend to not talk about T to anyone as unless that person suffers from it, you get a blank looks or a comment "oh, I had that for a month" so totally understand what you are saying I feel as though my brain is ganging up on me, with no outlet - I am not suicidal but get so down most of the time at the moment and have found this forum just in a few days a comfort to know other people are suffering. I have no intention of seeking further medical help, the last time I went, I was prescribed tranquilisers which reinforced my opinion that T is not a condition which GPs know about. Thank you for sharing your experience with others in this forum.

[Freddy17]

I feel your pain. I'm going through the same thing spent three years thousands of dollars on doctors for nothing end up buying special hearing aids for about $4,000 sometimes they help sometimes they don't. I love to sit outside and listen to the traffic go by but at the same time then ringing is loud and sometime I just sit in my house with no music no sound and just a ringing in my head knowing that there is no cure though they are lot of medical testing. There was one test done on Michigan and Michigan State which seems to help some people with tinnitus but they're still going under testing. I have two things to deal with with tinnitus and OCD we need to stay strong and just hang in there with life.

[TurkishLady]

Hi,

My T is recent but I already understand how You feel. But The Doctors say, there must be a reason for T, T is not an illness but a SIGN. A warning sign that there's something wrong with our health. That's why, I've started to do things to be healthy. Besides I will try R-TMS in Istanbul this Summer. 60/70 % success rate with Tinnitus they obtain. First They find the reason of Tinnitus and then they offer you the treatment. When I come back, I'll write here the result. Please do not feel hopeless!

[Woodentop99 in reply to TurkishLady]

Which doctors say that??? Or should I say WITCH doctors, from my experience doctors who ever they are totally disinterested in T, 60/70% success rate, certainly would buy into that, who and where were these figures obtained from? How many people did they treat?, forgive my pessimism, but been there( not turkey) done that read the book bought the T shirt ( pun 100% intended) it says TINNITUS, you won’t get it , until you GET IT,Also watched the video,,,,I await your result when you come back, mr T your days are certainly numbered!!!!!!!!

[TurkishLady in reply to Woodentop99]

If you write tinnitustedavisi and Ahmet Sirin on Google you can find his website which is in in English too. He is a specialist ENT Doctor and there are patient videos too but in Turkish.

I hope this helps:))

[YvonneTed]

So true No point getting stressed and angry about it. We unfortunately just have to deal with it. I would love a cure though !!

[Jojo313]

A very good post, I do have maskers and for me they help, but the doctors are useless, every time it’s stress/anxiety blah blah blah, they just blame that, well at the time I didn’t have any, I’d taken early retirement, bought a place on the beach and was going on a plane en route to a month long holiday! Where’s the stress in that! But I got off that plane a different person, wobbly, tinnitus joined soon after, nearly 3 years now, so far diagnosed with labyrinthitis then Mènières then vestibular migraine then MdDS then PPPD! Each time a different diagnosis, no longer bother with ENT, but I’d say the tinnitus is really distressing, only to be told, you’ll get used to it!! Why are they in this profession?