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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

to think you can live a happy life with tinnitus

135 replies

Guesswhosbacktellyourfriends · 28/06/2024 14:26

The posts on here re: tinnitus have really got me through the last two months, so I'm just back to ask (pleadingly) - if you were really down about it in the beginning, and really fixated, did it change for you? I know it sounds so melodramatic but I just think it means I can't live the same life I did before. I guess I'm worried too that it could all get so much worse (quite mild in the day, no hearing loss, annoying at night)

Can you really learn to block it out? Do most people manage that? I read posts that say people can go for weeks or months forgetting they have it but it's on my mind all the time (and I know, I'm doing what I can to not have a stress response to it but it's so alien).

I've got ETD and fluid in my ears which also make it hard not to overthink it. And I'm a writer by trade, so I miss my silence. Sorry for the whingy post.

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Guesswhosbacktellyourfriends · 28/06/2024 17:35

@WhatNext24 And when you do register it, can you zone it out again quite quickly?

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norasand · 28/06/2024 17:30

@Guesswhosbacktellyourfriends I'd say yes you can hear baby. They are really light weight, but of course it probably depends how loud your volume is. I have it on very low, just to mask the ringing. They are so light weight they feel quite flimsy tbh, but my first pair lasted years and it's the flattest I could find.

And yes most of the time i can zone out now; if I can't sleep, it's mostly peri insomnia arrrgh!

Edited to say this was to your question about the sleep phones

WhatNext24 · 28/06/2024 17:22

I've had it as long as I can remember and only think about it once in a blue moon when either it's very quiet around me (mostly at night) or the tinnitus dials right up for some reason (which is random but rare). I am thinking about it now you mentioned it though!

TinyTigress · 28/06/2024 17:21

FictionalCharacter · 28/06/2024 16:00

Untreated hearing loss is a huge risk factor for dementia! Hearing aids are far from perfect but if someone with hearing loss gets them and can hear better (not necessarily hear wonderfully well), the risk of dementia drops drastically.

Sorry to be that person but that's not true. There's a lot of controversy over the research that tried to suggest hearing aids reduce the risk of dementia. Sadly it's no longer accepted that hearing aids reduce cognitive decline.

Ruffpuff · 28/06/2024 17:20

I randomly went deaf in one ear around two years ago at the age of 25. No cause was ever found and the hearing loss persists.

The tinnitus started at that point and has continued (constantly) since. I really struggled for the first 6 months and I’d say it had a big impact on my life, particularly my social life and my ability to sleep.

It irritates me sometimes now. I’ve mostly learnt to block it out. It’s much harder after I’ve been somewhere with loud music or echoey noises.

For the most part though I’ve acclimatised and accepted it.

One of my favourite things used to be going on a walk somewhere rural and basking in the silence and quietness. I miss that. I deal with it by trying not to think of it and distracting myself. I’m not sure of that’s a good way of dealing with the upset, but it’s what I do.

TinyTigress · 28/06/2024 17:18

Oh just to add if I'm not using the app at night I've normally got some sort of TV programme or audiobook on going through my headphones. Perhaps not the best option for chilling out and getting an early night but it distracts me long enough that I'm so tired I just fall asleep.

SmileyHappyPeopleInTheSun · 28/06/2024 17:11

FictionalCharacter · 28/06/2024 16:00

Untreated hearing loss is a huge risk factor for dementia! Hearing aids are far from perfect but if someone with hearing loss gets them and can hear better (not necessarily hear wonderfully well), the risk of dementia drops drastically.

Hopefully it's not too late for him - he's mid 70s now but he's has* *tinnitus since late 50s and I suspect hearing loss steadily getting worse for about as long.

I do wonder if more emphasis should be put on hearing loss and age or more public awareness needed- as spec savers pushed for Dad to be tested - again he'd been in mental decline related to age though no tinnitus and again it was surprising how much hearing he'd lost and how hearing aids offered huge improvement.

Guesswhosbacktellyourfriends · 28/06/2024 17:01

Same @DrinkUpBabyDown - during the day. I think because I’ve got ear fluid it’s the lying down that really ruins it.

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Guesswhosbacktellyourfriends · 28/06/2024 17:00

@OneTC That’s so good. Have a good time!

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Guesswhosbacktellyourfriends · 28/06/2024 16:59

Thanks @TinyTigress. I actually can only hear it during the day in a super quiet room but at night, I think because of the ear pressure when I lie down, it really ramps up. And it’s still changing. Urgh.

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DrinkUpBabyDown · 28/06/2024 16:58

I do, but I think my tinnitus is at the mild end of the spectrum. It comes and goes and even when it's there it's annoying rather than unbearable.

TinyTigress · 28/06/2024 16:57

I'm sorry it's at a really bothersome level for you OP. One thing I've found helpful has been downloading the resound tinnitus relief app and purchasing a pair of sleep headphones so that I can listen to sounds as a distraction before bed. Good thing is I can avoid the white noise sounds (ugh) and use bird sounds, water sounds etc. I personally love the beach type sounds you can get through them. The take on tinnitus website has been a great resource too as it has patient stories and other management techniques.

This isn't for everybody but I'm a big fan of yoga which has really helped on the relaxation side of things (weirdly, given how strenuous it can be).

Some hearing aid departments offer tinnitus therapy too - does your local trust offer anything like that? I can't comment on how good it is as I've never tried it but might be something to look into if it's on offer near you.

OneTC · 28/06/2024 16:55

My bedroom is opposite a bus garage so no it's probably one of the noisiest bedrooms in London

However I'm going out camping tonight and will sleep outside and it won't bother me one bit.

Our brains are kinda wired for this I believe, it regularly filters out shit we don't need like seeing your nose, other people's birthdays and constant or repetitive noises

Dahliasrule · 28/06/2024 16:55

DD has had tinnitus from a road accident as a teenager. In quiet situations eg working, going to sleep, she has to have radio on low for background noise. She seems to be able to cope then.

NeverDropYourMooncup · 28/06/2024 16:53

Aquamarine1029 · 28/06/2024 14:48

Listening to thunderstorm sounds at night helps massively. I highly discourage using white noise.

Oh, those bloody tinnitus app sounds - they're even more annoying than the bloody hisssssssssssssssssszzzsszszszzzzzzzzźsssssssssssssssssssss

Guesswhosbacktellyourfriends · 28/06/2024 16:49

Are loads of you going to sleep in a quiet room having totally tuned it out? Will that happen?

I would pay millions for that to happen.

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Horses7 · 28/06/2024 16:47

Think I’ve had it since teenager, it got worse after covid jabs.
I forgot about it most of the time and if I do notice it I try hard to ignore it and focus on something else. Otherwise it would drive me mad.

Guesswhosbacktellyourfriends · 28/06/2024 16:43

You really are all so helpful, thank you so much. I don’t know how many of you can remember how it felt at first but you’re doing me an invaluable service and I can’t wait until I feel the same.

I just need to try and write books on the meantime! Concentration has taken a dive.

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Guesswhosbacktellyourfriends · 28/06/2024 16:39

@norasand Very tempting. Would I be able to hear my baby next to me?

So you only need them every now and then? You can actually sleep without “hearing” your tinnitus? That’s amazing.

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Guesswhosbacktellyourfriends · 28/06/2024 16:26

Oh I’d so love not to notice it at night. That would be amazing.

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Tilly22222 · 28/06/2024 16:22

Do some people hear tinnitus in most rooms?

Yes, mine is there everywhere at all times. But I am habituated and only really notice it when I think about it.

The trick is not to actively listen to it, because you are then effectively training yourself to hear it all the time.

CoffeeCakeAndALattePlease · 28/06/2024 16:20

Yes, I’ve got used to it more or less. It is constant but I kind of ignore/forget it and it sort of becomes another annoying background noise.

If I’m really stressed I definitely feel far more bothered by it.

norasand · 28/06/2024 16:19

I've had it like you for about 8 years. Over time I've learnt to tune out. A game changer for me at bedtime was sleep phones. They're a completely flat on ear headband and not noise cancelling, so you can still hear what's going on around you. They feel a bit pricey for what they are, but worth every penny for the sleep.
My first pair lasted about 6 years.

I'd recommend the breathable light headbands. Fleece ones are very hot.

Used to use them every night with a play list set to sleep timer. Now I only use them occasionally

https://www.sleepphones.co.uk/?gclid=CjwKCAjwvvmzBhA2EiwAtHVrb96EQa5ydv9MXSj48wWLa9z6roHvcrU5AR_dM6Q4rd2rALuqhIWp3xoCAc8QAvD_BwE

OutwiththeOutCrowd · 28/06/2024 16:17

I would say that, yes, it does get better but it took me some time to accept it. In the period leading up to developing tinnitus I was stressed and suppressing a lot of anger about having to be dutiful and responsible - apparently this is quite common.

I found that it was having my DS that put me in touch with life again and helped me to accept the loss of silence which I had always cherished so much. If I sleep well, it does not seem so loud. I have never been able to go back to gritting my teeth and pushing myself through things though as the tinnitus really ramps up. But I have certainly found joy in living again.

Guesswhosbacktellyourfriends · 28/06/2024 16:09

So having not habituated yet - and even constantly banging on about it - I can’t generally hear it unless I’m in a silent room (but once I catch on, it can take a while to shake). Is that a good sign? Do some people hear tinnitus in most rooms?

I’m so bloody grateful I can listen to the birds. I’ll never take it for granted again.

And I guess I’ve got a minuscule chance of it going away if the ear fluid clears but I’m not being naive, and waking up every day hoping it’s gone is actually hellish.

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