Auditory Implant Service

Coping with Tinnitus and returning to “The Light”

My name is David Caplehorn. I have been deaf, which is hereditary, since I was 33 years old. I am now approaching 70 and although I had some sound, I wore two hearing aids until three years ago, when I became a patient for a Cochlear Ear Implant at Southampton University Auditory Implant Service. I underwent the surgery at Southampton General Hospital during November 2013, without any problem and I do not remember having any pain at all after the surgery. However a couple of days later I became aware of tinnitus in my implanted left ear, it was a sort of gushing noise. I also had booms and banging which sounded like I was inside a tank and someone was banging the sides. img_1516

I should add here that my sister, her son and grand daughter all received cochlear implants, but I am the only one with tinnitus. My neice did have it for a little while after the surgery, but it has settled down and she hasn’t told me she still gets tinnitus. It could be that I already had tinnitus, but only became aware of it when I had no sound at all in my ear. Also none of the many other patients I have talked to at the Implant Centre since, have told me that they experienced the same, so it appears my case is an isolated one.

It was distressing, as prior to the surgery and all the years that I had been deaf, I had never experienced tinnitus and knew little of the condition. I was not too concerned at that time, as I had been advised by the medical team that it was normal to experience some tinnitus after such major surgery and that it usually settles down after a few weeks.

In my case though it didn’t settle down. The weeks went by, which turned to months and although the booms and banging noises stopped, I was still getting the gushing sound in my left ear. The tinnitus had also developed in my right ear which was a different sound, like a humming. The strange thing was that the sound would be in my left ear one day and the right ear the next, never in both ears at the same time. I also developed a sound behind my right ear, which I can only imagine that if sound could be applied to pins and needles, that’s what it would sound like.

In the heading I talk of returning to the light, which is the way I see it. During the period I was waiting for my ear to heal all I could hear was the tinnitus, roaring, booming and banging in my left ear, a humming in my right ear and I descended into a very dark place indeed. My weight plummeted, I could not sleep and was petrified of being left on my own, in my mind I could not see how I would ever cope with it and the stress was going to kill me. I had already suffered a heart attack years ago. 

I began blaming things for causing the tinnitus – diet, tea, coffee, alcohol, my heart medication, maybe something had gone wrong with the operation – all of these things in my mind were causing it. My wife had to work and one morning a few weeks after the surgery but prior to switching on the implant, she had left me sleeping. When I woke up I just panicked and emailed the Implant Centre pleading with them, for Mr Hellier, the Surgeon, to remove the implant. Audiologist Sarah Baumann returned my email instructing me to go straight to the Implant Centre, where Sarah activated the implant. She was so kind and reassuring with me and at last I had sound in my ear, which although I did not realise it at the time, was the start of my recovery.

Even with sound in my ear I still could not come to terms with the tinnitus and listened for it all the time to see if it was still there. I visited my GP several times and even went to A & E on one occasion. Of course, the doctors tried to reassure me but could not help me other than prescribe sleeping tablets.

I stopped taking my heart medication as I was convinced that this was the cause, even though I had taken the medication for years. I became terrified of sound, as this was also exacerbating it. I would not visit noisy places. I remember on one occasion my wife doing all the Christmas shopping on her own while I sat in the quiet of the car in the car park. What I put my beautiful wife through. As I had developed this fear of sound, I would mute the TV sound. On New Years Eve we watched the fireworks and celebrations with the sound turned off, even the fish tank had to go. From early evening I would shut myself away in the bedroom, as it was fairly quiet. On the other extreme I could not stand taking my processor and hearing aid out, as without sound all I could hear was the tinnitus. I would rush in and out of the shower or bath as quick as I possibly could and try to sleep with the processor in. I hated the implant and was so preoccupied with the tinnitus I did not realise how much my hearing had improved.

david-margaret

David and wife, Margaret

Then came, Mr Hellier, Louise and Samantha at the Implant Centre. My GP wrote to Mr Hellier, my Surgeon, who agreed to see me. He told me that sound was good not bad and that in time my brain would filter out the tinnitus and prioritise what it wanted to hear. Both Margaret my wife and I also had many emotional counselling sessions with Therapists Louise and Samantha. They gave me material to read and advice about keeping occupied, sleeping etc. All sorts of things to try to take my mind off the tinnitus. Just talking to them was such a help. Margaret, our family, staff at the Implant Centre and our good friends, all realised how psychologically sick I was. They all played their part in my recovery. Counselling, visits at home while Margaret was at work, outings, texts, emails, anything they could do to take my mind off the tinnitus and bring me out of my dark place. I shall always be grateful to them all.

I think I turned a corner when my son-in-law took me to a league football match. Although very anxious about the sound, over all the cheering and banter from the fans I could hear the referees whistle, something I had not heard for years and years. Also after the match in the relative quiet, the tinnitus was still there, but importantly, in my mind, I realised it had not got any worse.

In the articles and web pages about tinnitus that Louise and Samantha had given me, I read something about training the brain to ignore it. It is like the air Conditioning in an office – at first it is very noticeable, then after a while the sound is not there unless you concentrate on it. It occurred to me that while I was driving, I was not aware of the tinnitus. Could I train my brain to ignore it instead of concentrating on it 24/7. I started working again keeping occupied and enrolled on a stress control workshop, supported by the NHS. They advised us to identify stress and what was causing it. I realised that not only was the tinnitus causing me stress, I had all this other stuff going on in my head – little stresses I call them. My medication, sound, diet…. I considered that if I could alleviate all these little stresses I might be able to cope with the big one. I went home from the first session and took my aspirin, the first time in six months. ( I had read previously that aspirin might affect tinnitus) It didn’t make the tinnitus worse, but taking the aspirin still worried me. The other medicine I was anxious over was my statin, which I took at night and felt affected my sleep. I talked to my G.P and he prescribed me a different statin that I could take at anytime. 

Straight away this relieved that avenue of stress, as I took the statin in the morning, so I did not have the worry of it keeping me awake and took my aspirin at night, so by the time I got up in the morning I had forgotten I had taken it, thus relieving my anxiety. Diet was another thing, I started drinking tea and coffee again and eating other foods which I blamed for the tinnitus. It seems ridiculous now but at the time when your mind is taken over it is easy to blame things for causing it. 

I was very anxious about taking the sleeping tablets so gradually weaned myself off them, the longer I took them the less sleep I was getting anyway. I tried not to sleep in the daytime and stayed up until I felt sleepy and when I went to bed, in my mind I would think about the good things I had in my life, even resorting to naming all the towns in the County or names of people I had known etc. All of these things helped me get off to sleep without the need for the sleeping tablets. It is 2 years since I last took one.

I gradually became less anxious about sound and visiting the Implant Centre for tuning sessions. The tinnitus did not seem to affect my hearing and I was beginning to enjoy hearing new sounds as my hearing improved and with the Implant, I found I was able to join in conversations again, also music sounded pretty good. 

It became as a surprise to me how many people I know have tinnitus. “Yeah. I get this buzzing in my ear all the time” someone would say. I can’t explain what a great help it was to me to know that they cope with it, without looking for causes etc. One day I just told myself that this is me now, I will live with it. From then on I slowly recovered. I like to think that the tinnitus I am hearing are sounds within my own body. If anything helps me cope with it, it is this belief. I am at a state of mind now where I can talk about the tinnitus, laugh about it without getting anxious and totally ignore it like the office air conditioning. It is not there unless I concentrate on it and if you ask me if I still hate my cochlear implant, the reply will be, “Not likely, I absolutely love it!” My hearing now, is far better than any of my expectations. 

As for life, I enjoy working again, being happy and being out and about in normal surroundings, even noisy environments. I listen to the radio, music and enjoy going to live performances on stage. My hearing has improved so much since I received the Implant and am very grateful to the Implant Centre for selecting me to receive one. 

The greatest hurdle I overcame was my fear of sound. The doctor I saw on my visit to A & E told me that twelve months from now you will be able to look back at today and say ‘I am ok now’. One year to the day after turning the TV down to watch the Celebrations and fireworks on New Years Eve, Margaret and I drove to Richmond, walked up into the Park and joined the crowds and watched the fireworks over London. 
David Caplehorn