Tinnitus
Alan Hope, 19 August 2021
How it began
Welcome to my world. A few years ago I woke up one morning with tinnitus. "Annoying", I thought, "but it will settle". After two weeks of continuous very high-pitched whistling in both ears I began to realise I might have a problem. So I set out to fix it. I didn't realise the uphill task that lay in front of me.
This is what it sounds like, volume varies
My story
There are advantages to working as a doctor in a major hospital, so I squeezed myself in to one of the tinnitus clinics with an experienced ENT consultant—the hospital's "Mr Tinnitus". He was known to call a spade a spade which was exactly what I wanted. He put me through the mill and I awaited his wisdom.
"Your hearing is normal. Bilateral tinnitus like this is common but we don't know what causes it. It might be vascular or it might be neurological. No, there is no point in doing virology: viral infections cause deafness not tinnitus. Scans never show anything in bilateral cases like yours. It's been nice meeting you."
And that was it. Where was my treatment? Where was my hope?
The internet
As you do, I turned to the internet. Wow, there's a ton of stuff about "1000 crickets" type tinnitus like mine. And what a confusing mish-mash of pseudo-science, money-seeking quacks, distressed sufferers who were systematically trying everything they could find, and bland official medical advice along the lines of "live healthily and don't get depressed".
Having a medical background came in useful allowing me to cut through some of the nonsense. It was relatively straightforward to rule out many of the claims I found on the web.
Fact 1: the incidence of tinnitus is exactly the same (8%) in the UK, the US, and India.
This usefully rules out dietary causes or deficiencies, environmental causes, and genetic causes, because diet, environment and genetics differ dramatically across these three populations. These variables may of course play a minor role in a multi-factorial aetiology, but that is all.
Fact 2: there is no "gold standard" way of quantifying an individual's level of tinnitus.
Tinnitus is a slippery symptom. Think about it and it gets louder. Concentrate on something else and it diminishes. So how bad is my tinnitus? It depends. Is it better than it was a month ago? Hard to be sure. Research is difficult when you are measuring the unmeasurable.
What is it like?
There are "spikes". These are times when tinnitus gets dramatically worse (badly named because they are typically prolonged). After a while you become familiar with the sort of events precipitate these spikes. For me these include "stress" (dramatically), some sounds (eg car tyres on a rainy road, a hairdryer), opening your mouth very wide (pressure in your TM joint), and simply being in a very quiet environment (silence is your enemy).
Sufferers also become familiar with a few welcome things that reduce their perception of their tinnitus—typically alcohol (though it will be worse the next morning), a quiet general hubbub, and certain types of continuous sounds (the whirr of a quiet fan).
Tinnitus never happens in your dreams. Sometimes, half-awake, I go "wow, great, no tinnitus" then, bang, there it is.
Initial attempts at treatment.
First I organised a blood test to confirm I did not have toxoplasmosis (a common parasitic infection you can catch from cats where the symptoms include tinnitus). Then I, full of hope, underwent several hours of intravenous lidocaine infusion (a treatment which had been noted as an incidental finding to reduce tinnitus in ICU patients). Sadly this made no difference to me. I also gave up caffeine, simply going cold turkey which was, um, exciting (that is one special headache). After a caffeine-free year I restarted my coffee again. It had made no difference and I like coffee.
I tried noise-cancelling headphones (yes I know that seems illogical for an internal sound, but people had tried notch-filters and reported some success). As you would expect, a negative result—these simply made the tinnitus louder.
At this point I felt I had reached a dead end and I was pretty down. By now I had accepted the generally agreed explanation for tinnitus: that the brain is a noisy organ and that the neural mechanisms that tune out that noise gradually fail as you get older. Then one day your underlying "brain-noise" reaches your consciousness and once you have noticed it is effectively impossible to un-notice it. A symptom caused by failing neurological mechanisms didn't seem to offer any clear treatment path.
At this pont that I took a second look at a treatment I had initially rejected as fundamentally a non-treatment. CBT.
Cognitive based therapy.
For tinnitus this is a basket of therapies designed to gradually change the way your brain perceives the tinnitus. These include techniques to reduce stress, coping strategies, self esteem enhancement, sleep hygiene etc. However the treatment method which interested me most, had a clear mechanism of action, and seemed perfectly logical, was the use of prolonged exposure to a sound which mimicked the tinnitus. This has the aim of modifying your brain so that it tunes out specific audio frequencies, recognising these as harmless background noise and ignoring them.
There's a railway at the bottom of our garden. Often it seems like a whole day goes past with no trains passing—there were of course, it's just that with time we don't notice them any more. The hope was that CBT could do that with my tinnitus.
My tinnitus is a continuous 11,000hz squeal so I used a recording of violet noise, a hissing sound that peaks at that fequency. The recommended strategy was to listen through headphones, at the same volume level as the tinnitus, 8 hours a day for a year. I had a life to live so couldn't achieve that timing but I put headphones on any time I was sitting at my computer—which is a lot!
Violet noise
Sometimes the violet noise seemed to make the tinnitus worse, so I simply turned the volume up until the sound exactly matched my tinnitus volume. It was a fairly pleasant experience. I used open headphones so I was not totally cut off from conversation, the phone, the doorbell, etc.
After a couple of weeks I had a day when I didn't notice my tinnitus at all. Wow. But don't get your hopes up, son. So I persevered, and over time these days became more frequent. This was good, seriously good. I began to enjoy listening to my beloved hifi again. Playing the piano. Things that had been lost to me.
A few years on.
I'm now in a good place. I've come to terms with the fact that never again will I be in a quiet place and able to listen hard for tiny subtle sounds. But apart from that I've achieved my goal: most days I am not aware of my tinnitus from the moment I get up until I go back to bed. If I talk about it, I'm suddenly aware of it. And the old trigger sounds will still spike it, but it's manageable and at a level I can handle.
Quackery
What about all the other treatments? Well, here's the problem. Take any random "treatment" (say wearing a copper bangle) and persuade a bunch of tinnitus-sufferers to give it a go. At the end of, pick a timescale, 2 months ask them to report whether it is working or not. In a condition like tinnitus which varies a lot from week to week there will always be three groups: "it's the same"; "it's better"; and "it's worse". And the problem is that the group who say "it's better" will then go on to tell the world, "hey everybody, you should try this—it worked for me."
Search for "tinnitus treatment" on the internet and what you will find is the result of this process. None have been properly subjected to RCTs, or even to some cautiously applied logic. Charlatans selling books like "My Amazing Tinnitus Cure Revealed" by "Dr Daniel B Funnyname III, PhD" wear sharp suits, have big houses, and drive sports cars.
Ginko Biloba is a chinese herb with many proposed uses including tinnitus treatment. It is as effective as placebo—no more, yet people are desperate enough to give-it-a-go. Guess what: they recommend an initial treatment time of 6 months before you evaluate how effective it is. That's a lot of money for a treatment with no known mechanism of action, almost certainly because there is no mechanism of action.
If any of these proprietary "secret" treatments actually worked, someone would have spilled the beans and we would all know about it and be able to use it for ourselves. The fact that this hasn't happened speaks volumes. Save your money!
Finally
If you have reached this far, I'm guessing you are a fellow tinnitus sufferer. If so, you have my sympathies but don't give up. If you have hearing loss then hearing aids may help your tinnitus. If your hearing is normal (like mine) and your tinnitus is bilateral (like mine) then I can only suggest you try CBT as I have described on this page.
If your tinnitus is louder in one ear then you may need a medical consultation and possibly a scan to exclude underlying pathology. See an ENT specialist.
All the best!