1. Hi Dave, tell us a bit about your condition. How long have you had tinnitus? What symptoms have you been getting? Is the sound you hear there all the time, or is it intermittent?
I’ve had tinnitus since waking up at 5:30am on June 21st, 2012, so it has been with me for nearly nine months now. I have a high-pitched whistle/escaping steam sound at about 10kHz in my left ear only. It’s not particularly loud, but because I have been diagnosed with 40dB hearing loss at about 6kHz in my left ear, it is not masked by television or radio. Music with plenty of percussion is pretty good, though. On a bad day I can clearly hear it in the shower, and in the car with the window down and the CD player quite loud. The sound is there almost all the time, but sometimes disappears completely, maybe for a few hours. This happens without any pattern about twice per month.
2. How did you actually develop tinnitus in the first place? Has anything in particular triggered it? Can you tell (or guess) what the underlying cause is?
It first started about two weeks after attending a really loud rock gig and standing near the speakers, a bit daft at my age (56). I blamed it on that to start with, and really beat myself up with it. So did my (very ignorant) doctor, and ENT consultant. However, after talking to an audiologist and a couple of tinnitus counsellors I believe it’s far more complicated than that. It’s most likely due to gradual noise-induced hearing loss, age-related loss, and a series of very stressful events in my life over the past few years. This, combined with a life-long dread of developing tinnitus, a perfectionist personality, a love of “silence”, low tolerance of background noise, a musical background, and a relatively high IQ ( I’m not boasting, or joking, by the way), makes me an excellent tinnitus candidate. My current view is that my slight hearing loss has made my auditory system “turn up the gain”, and produced an amplification of random brain noise that I’m obsessively locked onto.
3. How did it use to affect your day-to-day life when it started? What impact has it had on you in the past?
The effect on my life was completely devastating to start with. I had a full-on panic attack at work, and had to take two days off, during which I hardly slept at all. I felt my life was over, and that I would be unable to cope with anything. I felt extremely depressed, and the world around me hardly seemed real. I stopped eating much, and lost a bit of weight. This is a guy who hasn’t had a day of work for 20 years, regards himself as very secure and stable, and never has any health problems. I was an emotional basket case for months, frequently breaking down in tears. I have made such a huge improvement since then that I can hardly believe what I’ve just written.
4. Have you had somebody to diagnose it? Have you been to see a GP, audiologist, or any traditional health care providers about it? What treatment did they offer?
GPs and ENT specialists were worse than useless. I got comments like “it’ll probably wear off in a couple of weeks” and “that sort of thing can drive you mad”. Thanks! A nearby NHS tinnitus referral unit was much more informative and reassuring. But no treatment was offered.
5. Have you tried any alternative treatments, dietary/lifestyle changes, or treatments not offered by traditional health care providers? Have you had any success with of them?
I am absolutely convinced the best treatment to start with is carrying on with life as normally as possible, looking after yourself reasonably well, and avoiding getting over-tired or stressed. For me, intake of all the things you are warned about like salty or spicy food, alcohol, quinine etc etc has absolutely no effect. A barely drank alcohol for a couple of months, but then found out that a night in the pub with a few beers was hugely therapeutic, during the evening, and the next day.
6. Have you seeked counseling or therapy? In particular, have you looked into sound therapy, tinnitus retraining therapy, or cognitive behavioral therapy? Did any of them help?
I am very interested in TRT and CBT, and believe these are very effective if administered properly. However, I’ve made such good progress recently that I don’t feel the need. The main problem is convincing yourself that tinnitus doesn’t matter when you feel so awful. There are so many vicious circles and Catch-22s to work around. I tried various types of sound therapy, but quickly discarded them because the background sounds soon became just as annoying as the tinnitus.
7. how did you eventually start to cope with it? Do you manage it better now than when it first started? What impact does tinnitus have on you today?
The best way of coping is to find someone to talk to who has gone through the recovery process. I got hold of a volunteer through the British Tinnitus Association, who gave me some time on the phone, and convinced me that I would be OK. I am lucky enough to have a friend of a friend who runs a local support group, and she too reassured me massively by explaining that she’d gone through all this 20 years previously, and now could only hear the sound when she listened for it.
8. These days, What do you do to manage your tinnitus? What do you do when it gets particularly bad?
During these past nine months I have made an excellent recovery, but it’s been very much up and down. Over the last two weeks I have made a big leap forward. Although the sound remains the same, I find I can easily ignore it after I get out of bed in the morning and get busy. It’s kind of in the background during the day, but I don’t give it much attention, and just recently, started to forget about it for quite long periods of minutes or even hours. I went to a noisy party last Friday and didn’t hear any sound at all for 6 hours, a record! The only way to manage it when it gets bad is to have confidence that it will son die down again, or to seek out company and get talking to people. I find that reading and writing are good distractors, but TV and radio make it worse. Anything that uses the verbal processing part of the brain seems to work.
9. Do you believe there's a single “silver bullet” cure for tinnitus? Do you believe there will ever be one?
I don’t think there will ever be a single cure for tinnitus because of its enormous variability in cause and symptoms. I’ve read up huge amounts about the latest theories of neurophysiology that seem to point to a large number of brain functions all interacting to sustain this weird perception. But now I don’t care if there’s no cure because I believe that one day it won’t bother me. I would prefer not to take any drug treatment because of the inevitable side effects. The most effective approach has got to be counselling and therapy of some kind. If more specialists had training in CBT and tinnitus relief, I think that would be really useful.
10. Anything else you’d like to tell us that we might have left out?
Main advice: find out as much as you can about success stories, and keep doing whatever you normally do, but avoid prolonged loud noise. Most importantly, be patient, more patient than you’ve ever been in your life, and you will almost certainly get back to enjoying life to the full.
Thank you Dave Monteith