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Reeny's story

Watch Reeny tell her story (Mpeg 10.4 Mb)

Video transcript

My tinnitus is a sort of hissing sound, rather like a kettle on the boil, that kind of noise. Again, like the kettle it can start very quietly, and then gets louder and louder, but unlike the kettle it won't turn off; it just goes on and on.   I first noticed it after I'd had tonsillitis when I was about 17 years old.  When that cleared up I noticed this noise in the left ear, so after a while and it didn’t go away I went to my doctors.    Now he just prescribed some drops and said "oh, it'll probably go in another couple of weeks".   However time went on, I ran out of drops and it didn’t go.   I finally went back to the GP and he referred me up to the Ear Nose Throat Hospital London.    They told me it was probably to do with the bones – otosclerosis - and unfortunately they could do nothing at all about it; I'd have to learn to live with the noise, and later on when my hearing got worse I could get a hearing aid, which is exactly what happened. 

I found it very depressing.  I felt I was the only one in the world that had this; I didn't know anybody else. But when it's bad you can't ignore it.  But other times since, I've now had it for most of my life, I've had quiet periods in which it's always there but doesn't intrude too much but then for some unknown reason it will suddenly become very, very loud.   If this goes on for so many days it begins to get on top of me.   Now over the years I’ve gone to various doctors.  Now what I do is I have some cipralex tablets which help me to feel a little better in myself and, if I can't sleep at all then I will take a sleeping tablet, but I try to avoid this as much as possible, keeping myself as busy as possible, getting out rather than staying in doors with it. 

It's been hard on family members at times when I've said to them "don't talk to me, I've got a bad head" – I didn’t use the word tinnitus I just said I‘ve got a bad head and they would know mum was a bit down. As my hearing has got worse and worse, now in fact I’ve got very little left really, and of course the noise is harder to mask then since I cannot use maskers any more because I can’t hear them. But there have been times in my life when it's affected me very much.   When my children were small it got very bad and I did get to the edge of a nervous breakdown.  I’m still coping with it and still hoping that there will some day be a cure for it.

Please note this person's name has been changed to protect their identity.