Me & Tinnitus: entry 5 [blog]
It's been a few months since I last wrote about my tinnitus and since there's been some change (sadly not positive) but also I've had a few people contact me asking for advice, and though I'm terrible on email, perhaps I can offer some here.
An update with the Lenire device
The short version is that it's not gone well for me. Last time I wrote I was on a break from the treatment. In the end I never returned - on the advice of the Nuromod clinic (who at the start of the year had a brand change).
I hadn't thought to ask the clinic originally but in the original trial there was a number of participants that didn't complete the treatment. Of course when I realised to ask last year, it was because their tinnitus had become worse and they didn't want to stimulate it further. This is what's happened to me. Except in all the cases (I'm told) the tinnitus returned to an original level for those individuals.
For me my tinnitus is stuck on a loud on position. All day. All night. Before I got to bed. Right when I wake up. It's unrelenting.
Sometimes it gives me a headache. Often I'm missing spoken words, though looking back at my hearing test last year I'm not sure it's because my hearing is particularly bad, it's actually because the sound of speech has to compete with the tinnitus. My hearing levels looked to top out around 8,000Hz, which isn't unusual for someone getting old, but I do wonder if that's because where my tinnitus is loudest and the sounds just mesh together.
So I'm not going to return to the treatment. It didn't work for me. In fact, it's made things worse (or somehow a negative environmental change has happened to coincide with the treatment). I do believe in the research and I do believe this can work for others and decent number of others, but if you, dear reader, are considering it, I'd recommend waiting until the prices have reduced a bit at least. Though it's hard to put a price of silence…
A small positive effect
Around November last year I finally returned to the gym. I'd been off for most of the two years of the bulk of the pandemic. I mention this because doing exercise (surprise, surprise) actually helped to ease my mind and helped me carry the ringing in my head.
That's to say that improving my mental health through exercise had a positive impact on my mental health and my ability to cope with tinnitus. Who knew! </sarcasm>
I'm currently trying out Oto though I can't particularly recommend it as I'm still early days into their app. On what I've seen so far, it might be better suited to someone who's just started out with their tinnitus as there's a lot of talk of how to deal with the anxiety around tinnitus, whereas myself as someone who's been ringing away for over 20 years, I long lost my desire to smash the place up to stop the noise (I realised there's no winning).
Though both Oto and Lenire have the Cognitive Behavioural Therapy in common and from my understanding of what tinnitus is1, this is the right path to follow either way.
1. Tinnitus is your brain thinking it can hear a sound, so as compensation, it registers a sound, to counteract the sound(? I think!) so you end up with noise in your head… because your brain - and mine - are a bit silly.
If you're new to tinnitus
My mum has tinnitus, she's a "bit" older than me and fairly deaf these days, but her tinnitus is her company. She's so used to the sound that it's part of her noises. Indeed when it stops abruptly it's more disorientating for her, though equally if her tinnitus brings another sound (like when the tone changes), it's very uncomfortable - but in both cases, it all settles back down. I can't fathom it, but she said she'd feel wrong without it now.
I'm hoping that's in my future because I'm damn sure my tinnitus won't magically disappear. And as much as I hate to share this with anyone who's been diagnosed with tinnitus (either by a doctor or by self diagnosis), unless there's something physically wrong with your hearing (and do get a hearing test as if it's "external" it's potentially a fixable thing) and the sound is internal, it's the brain deciding to make the sound and that's unlikely to ever change.
I know that over the two decades I've felt sadness, desperation, anger and frustration at not being able to stop the sounds. Not to have silence or quiet any more. But as you can guess, that made no difference.
There's no escaping tinnitus, it's something you and I have to learn to live with. If there's anything that helps distract your mind away from the ringing, then do more of that. Usually music worked for me, though as I write this, my tinnitus is very much in the focus of my brain and it's tiring.
There's lots of apps and even sound tracks on iTunes, Spotify and probably the random mp3 of white noise (equally it's worth trying other colours, pink, brown, etc).
I've got a subscription to brain.fm which I use for development and sometimes sleeping.
Breathing, intentionally, helps me a little. Five seconds in, seven out - just to take a bit of a pause off the tinnitus.
If you're in the UK, I've been told that the NHS can provide CBT for tinnitus (though being a hypocrite I've never followed up on this).
One last thing is that you're not alone. Tinnitus is a hidden ailment, certainly tell your family/partner/friends. For me telling my partner, Julie, that my tinnitus is bad today helps them understand what's going on in my head that day. There's also communities online which might help if only to lurk around.
Oh, and sleep. Or try. And good luck. You're not alone (and you can even imagine there's a tiny hamster inside your brain playing a super annoying whistle all the time - so then you know you're definitely never alone!).
Originally published on Remy Sharp's b:log