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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.

OP posts:
saraclara · 28/06/2024 16:07

I have mild tinnitus, so I'm incredibly careful to avoid any medications (even ibuprofen) that might make it worse.
My late husband's tinnitus was so bad that it caused him to have a breakdown (think loud helicopter rotors in his head 24/7) so I'm desperate to avoid mine (which I can largely ignore now) getting any worse.

When mine started, I insisted on being referred to audiology. My GP was very grumpy about it, and said "they won't do anything about it, you know". But they did. In addition to testing for any physical cause, they referred me to their tinnitus counsellor, who taught me lots of strategies and relaxation techniques, advised me on ototoxicity, and provided me with a white noise machine.
I only wish my husband had had that help.

FictionalCharacter · 28/06/2024 16:00

SmileyHappyPeopleInTheSun · 28/06/2024 14:51

FIL say his has finally gone away with hearing aids - I'm hoping hearing loss creeping up on him is why he's seeming more and more confused and not early signs of dementia* *as I was starting to think - though apparently hearing loss that age can be a factor for it anyway.

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.

Applepencilplant · 28/06/2024 15:57

I have a hearing loss and tinnitus in one ear which is awful. When I have my hearing aids in I barely notice it. Think about getting hearing aids.

Guesswhosbacktellyourfriends · 28/06/2024 15:56

@OneTC Thank you. Minor annoyance is the holy grail!

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Guesswhosbacktellyourfriends · 28/06/2024 15:54

@Globetrote Yep, adult glue here too and EDT. I’m two months in, MRI clear.

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Guesswhosbacktellyourfriends · 28/06/2024 15:52

@Rowen32 Phew. So life as normal?

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Guesswhosbacktellyourfriends · 28/06/2024 15:49

I’m sorry about your friend @pbdr. I can see why that would be really sobering.

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ExpectationsRunningHigh · 28/06/2024 15:43

There are times I barely notice it, and other times when it drives me half mad, but a level of acceptance about it really does help. It’s been 9 years since mine started.
Background noise helps a lot so I’m not solely focusing on the ringing. I sleep with Alexa playing wave sounds to help me drive off to sleep and, if I wake in the night I just get her to restart it again. Poor DH! In the day if I’m home I often have the radio on or the tv for background noise

Guesswhosbacktellyourfriends · 28/06/2024 15:41

Thanks @Friarclose. I need that!

OP posts:
Guesswhosbacktellyourfriends · 28/06/2024 15:40

Thank you so much all of you. This is exactly what I needed to hear. @FictionalCharacter I’m so so sorry, that sounds rubbish. Thank you for being so honest.

I’m generally using a fan or low noise at night. The earphones sound amazing but I’m still cosleeping and breastfeeding so I need a bit of an ear out really. Have lots of you managed to move beyond masking at night and habituate then too? God I’ve got a few years yet haven’t I?

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Friarclose · 28/06/2024 15:23

Yes.

I'm 10 years in. If you'd told me 10 years ago that I'd still be alive, still have tinnitus, and be living a normal life I'd have said no because I cannot live like this.

But I did, and now I think about tinnitus maybe 2% of my day. Sometimes 0%. It used to be 99%.

It does get easier. For me, the tables turned when someone said to me what are you so scared of? Its just a noise..

And I realised I was living my entire life in fight or flight mode. Once I stopped, that's when habituation happened.

White noise helped me so much. I urge you to use it if you aren't already.

You will be OK, you know. Coming from someone who honestly felt that death would be preferable to life with tinnitus!

Kittea · 28/06/2024 15:14

Mine is worse when I don’t wear my hearing aids.

Most of the time I can filter it out. I listen to ocean waves or tricking streams on an app on my phone when I take my hearing aids out at night especially if it’s particularly intrusive.

FictionalCharacter · 28/06/2024 15:09

Mine is very, very, very bad. I can’t “learn to block it out” because as well as a lot of regular, constant noises I get sudden, loud, intrusive new ones that appear out of nowhere. Imagine someone suddenly playing a loud, high, screeching violin note right in your ear one day and making you jump, and doing it at irregular intervals of a minute or a few seconds for several hours.
There have been times when I have not wanted to live. But I do live with it, though I’m not happy.
I hope yours is nowhere near as bad and you can learn to cope with it.

freshbluesnow · 28/06/2024 15:06

Mine has been going on for thirty years (rock n roll!). It was so unbearable at first I was suicidal, but now I am used to it and only notice it when I pause to think about it, like now - or if I'm under extra stress.

Also, lots of drugs can ramp it up. Aspirin, eg. And some H2-receptor antagonists and PPIs. Worth checking if any otc or prescribed medications you ever take are ototoxic/cause ringing in ears.

List of Ototoxic Medications - Sound Relief Hearing Center

List of Ototoxic Medications - Sound Relief Hearing Center

Our list of ototoxic medications includes those known to cause tinnitus and hearing loss. Hopefully, this helps you make good decisions.

https://www.soundrelief.com/list-of-ototoxic-medications/

MrsCarson · 28/06/2024 15:00

Mine started as very mild in the day and more noticeable at night 30 years ago. It's one ear only.
You do get used to it, I can ignore mine and could hear past it for most of the time I've had it.
Now it's more noticeable in the day as I have hearing loss on that side and it has got louder for me in the last 5 years. Still I can ignore and hear past it with a hearing aid in.
On the plus side I can lie on my good side at night and sleep though any noises.

ohthejoys21 · 28/06/2024 14:59

At first I found it really hard. The only things that worked for me and changed things were a radio on low sound as background noise, and ignoring it. The more i ignored it, the less of a problem it was .

EilonwyWithRedGoldHair · 28/06/2024 14:57

A lot of the time I don't notice it now. It's more noticeable if I'm stressed or tired, and at night, but DH has tinnitus as well so we usually have an app that plays rain or wave sounds on when we're sleeping.

theugly5 · 28/06/2024 14:56

I've had tinnitus for around 4 years (thanks covid!) To start with I found it quite distressing - it just suddenly started one day and I was extremely upset at the thought of never 'hearing' silence again!! Now I barely notice it most of the time, but it is worse if I'm ill (it seems to echo in my head if I'm congested) or stressed. It used to annoy me when watching TV or trying to sleep, but now I would say I rarely think about it at all.

pbdr · 28/06/2024 14:54

My tinnitus used to drive me mad, and I couldn't imagine how I could put up with it for the rest of my life. Then I watched a young friend in her 20s slowly die of cancer, and it totally changed the way I thought about my own health. After that when I noticed my tinnitus instead of getting worked up about how unfair it was, I would just think about how lucky I was that something so relatively trivial was the worst health condition that I had to deal with, and it almost became a reminder of my good health and fortune when I noticed it. I stopped stressing about it and then over time it just seemed to disappear. If I pause and listen for it, it's still there, but when I'm not actively thinking about it I never notice it anymore.

OneTC · 28/06/2024 14:52

Aquamarine1029 · 28/06/2024 14:48

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

Yeah white noise and transients are what makes it change from a ring to a hiss

SmileyHappyPeopleInTheSun · 28/06/2024 14:51

FIL say his has finally gone away with hearing aids - I'm hoping hearing loss creeping up on him is why he's seeming more and more confused and not early signs of dementia* *as I was starting to think - though apparently hearing loss that age can be a factor for it anyway.

mansplainingsincethe90s · 28/06/2024 14:51

I play white noise from an app, or other sounds, like rainfall, forest sounds, wind etc. It masks the tinnitus and for a while I forget all about it. When I'm bored of background noise I listen to music or podcasts.

Rowen32 · 28/06/2024 14:48

Honestly doesn't bother me anymore and going to concerts doesn't worsen it so don't worry about those..
Stress does aggravate it so I hear it more then but I take it as a sign to distress and take care of myself:-)

Aquamarine1029 · 28/06/2024 14:48

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

LemonySnickets · 28/06/2024 14:47

I've had mine for 12 years. It took a very long time to get used to it. It was distressing for the first couple of years. Now I just get on with things. I'm used to it now.

I usually always have the radio on if I'm in the house or car. I find that helpful. But it doesn't bother me the way it used to.

I do find, though, if I'm upset or stressed it gets a bit worse and then it can upset me and I end up with a headache. But day to day I don't notice it as much. Notice it a lot right now as I'm writing about it!