I am so deperate

[Petra1988]

It is this "you have tinnitus forever" what makes me absolutely desperate. That it will beep until I die is so horrible for me. And I can't overhear my T. My focus is everytime on it. It makes me crazy and so depressive.

[happyrosie1]

you may well not have tinnitus forever. I only have tinnitus

- if I’m ill

- after a noisy car, airplane or coach journey

- when I’m writing about it here.

Otherwise it just isn’t there, because I don’t think about it.

Have a look at the replies to the post made by MAC0811 about one day ago.

[Petra1988 in reply to happyrosie1]

Yes, that is my problem, mine is there every second and I can't stop thinking about it. I would be glad if it was like yours, that I just don't have to think about it. But I am absolutely obsessive to think about it and that is so exhausting

[TinnitusUKPat Partner]

Just as Rosie says, Petra - you may not have intrusive tinnitus all your life. Nobody is a mind reader and so the idea that we will have tinnitus forever is more to do with catastrophic thinking and depressive mood than with the condition itself.

What is your focus on T giving you other than constant knowledge that it is there? What would you rather be doing, thinking about or experiencing that tinnitus currently isn't allowing you to have in your life?

If that depression and anxiety is something which you can get support with, it may have a positive impact on how you see tinnitus and how much of your life it occupies.

[Petra1988 in reply to TinnitusUKPat]

For example: I play with my kids, and my mood is bad because I hear my t., the next thing I think is that this will be like that forever. And that makes me absolutely sad. Never be happy and without sorrows again, because the ringing in the ears disturbs me in every second and doesn't allow me to be fully focused on the things I am doing...

[Petra1988 in reply to Petra1988]

I would be so happy if I could be free from those obsessive listening to it and thinking about it - even if I don't hear it when the surrounding noise is louder than my t

[Steve1978 in reply to Petra1988]

Hello Petra1988

I really really feel for you, I read each post you write.

I have no idea if this helps you in anyway but I will try it, you can choose to ignore it if no good, I understand.

I got this in Dec 2015, really bad loud ringing, all day, all night and everyday. I was in a very very dark place ( I hope it is ok to say that).

I had at the time a 7 year old son. I decided he was my medicine. It didn't matter how loud it got, I just put everything into my relationship with him and I kept working as I needed money. I lived for him, I slept for him, I breathed for him.

I threw all my love, all my energy and everything I had into my son. Other than my son and my work I let go of almost everything else because I could not cope with the sound, it took all my joy for life away. I got to a stage of - what am I here for, what is my priority, what is my reason? Like you my great old life was gone. But then I got this new life.

My obsession with every website, every cure, every post, every person slowly transferred to an obsession for the person I loved most in my life - my son.

I went on a fantastic parental journey, he is the love of my life and my devotion. Almost 10 years later and he is 16. He's been top of his class at school for years, he's been in the local paper for his amazing GCSE results last year, he's got over a hundred trophies and medals. He became one of the best junior tennis players in the country and played for England juniors at 10 years old. He then went onto play pool for England U15 at 14 years old. And now he is about to apply to go to Cambridge University.

I'm not saying all this was down to me, but I honestly think something good came out of my horrendous tinnitus. Because I spent so much time with him, educating him, playing all those sports with him and most importantly spending the time with him every moment of everyday (aside from work), he has gone on to have an exceptional life and growing into an exceptional adult.

Petra this is such a tough journey you are on, some of us really do understand your words, I see myself in you back in 2016. You have your children, what a wonderful medicine to have.

I took my obsession away from my condition and transferred it to my son. Every time I thought of my tinnitus I change my thought to my son, because I absolutely love that boy, I refused to let tinnitus take my mind from him. For me the tinnitus slowly faded to a very low level after a few years, my brain had no space for it, all my brain was focused on my son.

I know my son saved me, and he doesn't even know it...

[Petra1988 in reply to Steve1978]

Thank you for sharing your story with me! It really has touched my heart, I have tears in my eyes now.

[vincentchan]

From cbt tinnitus book

Just think B instead of A

244

Living Well with Tinnitus

1

A.

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.

Cbt is the only proved to be effective

[Petra1988 in reply to vincentchan]

Thank you for your answer.

[Petra1988 in reply to vincentchan]

But it is not easy to change thoughts if you don't feel and believe it

[vincentchan in reply to Petra1988]

Good news from tinnitus cbt book

46

Living Well with Tinnitus

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

[Ray200]

Who told you that? You will (probably) have tinnitus (to some degree) until such time as a pharmaceutical cure is available. Your tinnitus may also lessen over time, mine did. As for health burdens, tinnitus, although not a walk in the park is far preferable to stuff like Type 1 Diabetes or physical infirmity. Further, I have now forgotten what it is NOT to have tinnitus. Now part of the scenery. A bit like an unpleasant neighbour you put two fingers to when you see them. That will happen for you too. Hope this cheers you up...

[Petra1988 in reply to Ray200]

The doctor said this to Mr, that it will sray forever and my psychologist says that when I focus on T. all the time and think aboutbit all the time, it just cannot disappear and that makes sense to me. I don't want to focus all the time but it is totally obsessive and I cannot stop this. I feel so helpless because I am not able to stop this nightmare

[Ray200]

Petra. You would be better off following this site for support rather than your General Practitioner. The clue there being 'general'. I would say tinnitus is a tiny part of what they cover and they have no interest in the subject as there is currently nothing they can do for it.

How long have you had tinnitus? I consider it a journey, from my experience with basic grade tinnitus. Your most important companion in that is your brain, which has been working on your side to deal with it. I might be able to let you know how its going to help you.

[Petra1988 in reply to Ray200]

Thanks a lot for your answer! I just feel I have no control over my brain and this bad thoughts which come up every minute. Since over 1 year now I think about T. all the time. And that is making me crazy, because my old life is completely gone. I had a good life since my T. started and now it have to think about it and listen to it all the time. I want to have it in the background but I can't make it. And that makes me so sad, because I have to great little children, who now have a mother who is totally occupied by her T. and sad about it all the time.

[Ray200]

Your brain is on the case. There will come a time when tinnitus becomes like traffic noise. It's there but you don't register it. The brain already ignores your nose, which is in your line of sight. It does take time, but it would be the strangest thing if it came any quicker. I'm 16 months in, and that is how it is for me.

That's not to say I don't need a break from tinnitus, as from traffic noise. We all need that. Wireless headphones do it for me.

[Petra1988 in reply to Ray200]

But I am afraid that I can't reach this point that I can overhear or ignore the t. because I feel so horrible towards it. How can I make this?

[Ray200]

You don't have to do anything to reach that point. You will just arrive there. As I said, your brain will do it for you. Gratis.

[Petra1988 in reply to Ray200]

But does this also work if I am always concentrating on the t. and being upset about it all the time?

[Ray200 in reply to Petra1988]

Don't forget, there will come a time when you forget what it is not to have tinnitus. You won't be concentrating on it then. Trust me.

[Petra1988 in reply to Ray200]

🙏 I hope it so much

[serendog]

Hi Petra I was like you did not understand it its so loud I know and it won't stop. I did not think it would improve - but Petra it will I promise - No maybe it won't go away all together but your brain will ignore it in time - Try headphones at night i use Borrow Box it helped lots and I still use it now when I need to - And on You Tube Look for -Tinnitus Scrubber - in my bad days I found that really good try and find things that are good for you and works for you - I hope this helps you a little.

[Petra1988 in reply to serendog]

Dankeschön

[Tinnituscrazy]

That was how I felt but about a year down the line I kind of accept it and am glad it is not \Cancer. Ive just been out on my litter picking and didn’t notice it but now in the quiet of the house I can hear it. I just play classic FM through my hearing aids to distract.