hbep

Hey Gloria,

I just saw your post asking how I habituated to tinnitus. A while back a member called Ruth asked me about this too. She was v. distressed having just got T, so I wrote something for her which I have posted again below. She said it had really helped her, it may be helpful to you, and if it's not, obviously just ignore it. I know you're considering TRT, which I understand can be v. helpful, so this certainly isn't an attempt to dissuade you from doing that. T is a personal battle and how people cope with it comes in many forms. This is just an outline of how I see T and how I coped with mine.

I said I’d have a go at explaining the thought processes that allowed me to habituate to tinnitus, in the hope that it might help you. What took me from being terribly distressed to being able to cope with it. Before I do, to avoid offending anyone else who might read this, I want to say a couple of things. Firstly, for the sake of brevity and clarity I won’t pepper this piece of writing with ‘in my opinion, or ‘this is what works for me, another way of coping may work better for you’ etc… It does, however, go without saying that there is no one way to deal with tinnitus, the important thing is to be able to lead a happy life with it, how you get there is a matter for each individual. That said, this way of thinking has worked for me, so I am writing it in the belief that there is a good chance it might help others. Secondly I will stress again that my tinnitus is not deafening. It is a high pitched ringing in both ears, very audible at night, and, if audible during the day, it doesn’t block out other sound but exists alongside it. I have never walked in the shoes of someone who has deafening tinnitus, so would not presume to be able to talk about how to cope with it.

When I first got the tinnitus, age ten, (now in my thirties) a high pitched ringing in both ears, I was taken to the hospital for the routine visit to an ENT. The specialist laid it on the line – he said he couldn’t do anything and that I’d have to learn to live with it. I remember this v. well, which probably means it was a shock. I was young, so believed what a doctor said was ‘the truth,’ (learnt a lot since then, lol.) I was also left with the impression it would definitely never go (not always true) and that there were no therapies or drugs that might help, also not true. It never occurred to me to question what he said, think that it might go, or hope for relief from it. In retrospect what happened seems quite brutal, but I actually think by removing all hope that specialist did me a favour and made me habituate far quicker than if I’d been led to believe there was any. With an illness like vestibular neuritis, for example, hope is a critical component of getting well, it makes people seek help, pursue vestibular rehabilitation therapy and sets them on the road to recovery. With tinnitus I think the opposite is true, a daily diet of hope that it will go is the enemy of habituation.

Why? Firstly because whether the T stays or goes is entirely random. It could go tomorrow, it could go in 5 yrs, or never. Coping with T by only deriving relief from the possibility of its cessation, could ensure you are miserable for a very long time. Secondly, by hoping the T will go it means you are angry, anxious and upset that it is there. Obviously these feelings when it first happens are totally natural, but, if they continue, you are, for as long as the T chooses to hang around, trapped in a futile battle. In as much as the T is a part of you, it’s like being angry that you have an arm. Also, anger and anxiety draw attention to the T, make you dwell on it, and even if this doesn’t actually make it louder, it can make it seem louder. Imagine a close friend, how much do you think about them during the any day? Probably not very much, the odd pleasant thought perhaps. Now imagine you’ve had a blazing, unresolved row with them. How much would you think about them now? Probably a lot. Possibly an intrusive amount as you struggle with how furious you are with them. I believe that the misery T causes is not so much the noise itself but your feelings about the noise, the grief that you’ve lost ‘silence’, the frantic anxiety about whether it will go, and then the fury that it’s still there. In order to habituate to T you don’t necessarily need to make it your friend, but it does need to at least become an aquaintance you get along with passably. And for that you have to let the anger about it go and accept it.

How do you accept an irritating noise in your ears? First of all by understanding that hardly anyone ever really hears silence. Even in supposed silence we are constantly hearing things, the wind, a radiator, noise from the street outside etc.…Ok, so these noises are pleasant, but people are constantly habituating to unpleasant noises. When I first bought my flat I realised that the stupidly loud hum from the fridge was audible in every room. I got irritated about it, dwelt on it, lay in bed at night unable to sleep because of it. Eventually I tired of being angry, decided it was too expensive to replace, so I’d just have to get used to it. Shortly after I made this decision I stopped noticing the hum. Ok, you might say, but I could get away from the fridge, which is why it was easier to let the anger about it go, but the fact remains the fridge is still there. I work at home and it’s audible day and night, but it’s become background noise, and for the most part I’m unaware of it. A friend of mine lives in a house that backs on to a railway track, at first it drove her mad and she thought she’d made a mistake buying it. Now she doesn’t even notice the trains.

After that initial consultation with the specialist, for over 20 yrs the tinnitus never bothered me. Now that it’s got considerably louder I would be lying if I said I didn’t sometimes have to take a few minutes to re habituate to it, but, because of all the reasons I have outlined above, it is only ever a few minutes. On the few occasions it keeps me awake, I still think that it’s not the T or its new louder state that are causing the sleeplessness, but rather the anxious thoughts I enter in to about it - Why is it getting louder? Does this mark a shift in my illness? (I have a vestibular disorder as well as the tinnitus) Will it suddenly become deafening? which make me focus on it, cause it to become more audible to me, and make it more irritating than it actually needs to be.

Although I’m guessing many other people with T will feel differently about this, personally I never attempt to mask the tinnitus other than sometimes leaving a window open in summer so I can hear the noise outside. Masking it would reinforce the notion that it is a bad thing to be avoided. I totally understand preferring to listen to something more pleasant than tinnitus, but personally I'd find it a drag being dependant on an external noise to sleep…. I don’t need to mask the sound of the radiators in my house in winter or, indeed, my noisy fridge, so why the T? It’s just another background noise, alongside lots of other background noise, which, because I have accepted it is there, doesn’t grab my attention. A noise cannot harm you, the idea that you have a noise in your ears therefore it must be intolerable, the endless spiralling thoughts about will it, won’t it go, and the fury and rage when it’s still there, can. They will cause you to constantly focus on the noise, lead to misery, and ultimately, when the anger has no place to go, anxiety and/or depression.

I know how difficult this is, if this had just happened to me I would be struggling with it. I’ve had over 20 yrs to learn how to manage tinnitus. I can’t promise that thinking about tinnitus in this way will work for you, we are all different and it may be you will find a way of coping that suits you better. Please also understand I am not saying ‘you ought to have accepted it, why aren’t you coping,’ this has happened so recently for you, you are still shocked and reeling, habituation takes time, and understanding from others as you go through what is a difficult process is critical. But I do believe you will not always feel as you do now.

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hbep