I don’t normally like to write about my tinnitus because I find that thinking about it or even seeing the word written down makes me focus on mine and seems to intensify it. But, today my tinnitus is so bad, I figure writing this post isn’t going to make much difference. I’ve suffered with tinnitus since I was a child. [I use the word ‘suffered’ quite deliberately because I feel that it is something unpleasant that I have to endure. I will explore the terminology and attitude later in this post.] I remember being very young and not being able to go to sleep because I thought I could hear the garage door banging repeatedly. My tinnitus then (and often still now) resembled the sound of a metal up and over garage door being slammed shut over and over. As you can imagine, I found this distressing. My Mum tried to reassure me that the noise was just my ear hearing the blood pumping round my body and that it was nothing to worry about, but it still kept me awake night after night, on and off for years. When I started to lose my hearing in my thirties (as a result of a condition called otosclerosis), I began to notice my tinnitus more, and sometimes not just at night but in the daytime too. The audiologist who fitted my first digital hearing aid referred me to a hearing therapist. I thought that because there was such a thing as a hearing therapist who took referrals from people with tinnitus that there would be something she could do to help. Perhaps she was going to teach me self-hypnosis or something? The lady I saw was really nice. She had hearing loss and had also suffered from tinnitus all her life. She told me there was no cure for tinnitus and that it was something we were both going to have to live with. She said the best way to deal with it was to distract myself from it. She recommended that I ask the people close to me not to ever ask, “How’s your tinnitus today?” because asking the question would make me focus on it and therefore tune in to it. She also recommended listening to music while falling asleep, which I did for years and found comfort in. After my sudden sensorineural hearing loss left me completely deaf in my good ear, I found that the residual hearing in my other ear was not sufficient to be able to listen to music through a pillow speaker or an ear bud. So, it was just me and my tinnitus once again.
What does tinnitus sound like? Here is an audio clip from the National Acoustic Laboratories. Please don’t listen to it if you have damaged or sensitive hearing. Listen to other sounds of tinnitus here.
Before I got my Phonak hearing aids, I didn’t have much sound stimuli for nearly seven months. My tinnitus became unbearable in both ears 24 hours a day and I was referred to a Tinnitus Therapist. The appointment letter requested I take someone with me, so my husband booked a half a day off work to accompany me. We wondered if I was going to be given some drug to trial – perhaps something which would impair my driving and thus necessitate bringing a chaperon to the appointment. The therapist asked me some questions about what I thought my tinnitus sounded like and how it made me feel [tired, irritated]. He then lost me completely and my husband suddenly tapped me on the leg and said, “Can you hear that?” “Hear what?” I asked. “He’s playing you some sort of white noise,” my husband said. Good heavens! This guy didn’t even know I had hearing loss. Even once we explained about the profound loss and the severe loss in the other ear, he still kept going on about playing white noise at bedtime. It was laughable in so far as, for me to be able to hear it without a hearing aid in my right ear, it would have to be about as loud as a fire alarm – and that might just possibly keep my husband awake. The therapist was clearly used to dealing mainly with people who ‘just’ had tinnitus – as opposed to people with severe to profound hearing loss and tinnitus, and he seemed a bit out of his depth. He asked me more questions about my tinnitus and then he said that I, like many people with tinnitus, had a ‘negative attitude’ to tinnitus, and that I needed to develop some positive associations with it. He advised that when I was doing something I enjoyed or was in a place that made me happy, I should stop, focus on my tinnitus, remember that feeling and then use that memory the next time I noticed my tinnitus. Now, I don’t wish to insult people who subscribe to this approach but for me personally, on that day, I thought I’d never heard such nonsense. I was almost profoundly deaf and living trapped in tinnitus hell and here was this guy telling me to listen to very loud white noise to help me get to sleep at night and to find a ‘positive’ in having tinnitus. Sheesh! Talk about a lack of insight. I asked if he himself had tinnitus and he said that he did not. To this day, I have yet to find anything positive about having tinnitus but, since getting my Phonak CROS II hearing aid I now have sound stimulation (rather than the near silence I had before) and, I also now take an anti-vertigo prescription tablets, which help but don’t eradicate the tinnitus. I still have tinnitus 24/7 in both ears but, for the most part I can distract myself from it. It’s one of the reasons I use Twitter so much: when I’m tweeting, I don’t notice my tinnitus. For me, Twitter is the perfect distraction! Do you have tinnitus in addition to hearing loss? How do you cope with/manage yours? Have you been given conflicting advice about tinnitus? Which approaches have you tried? Have you tried the Phonak sound stimulation? Has it helped you?