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Original poster

Tinnitus pity party

63 replies

Whatdoyawannado · 12/09/2021 17:54

Had this infuriating condition for nearly a year. Coping better generally but sometimes I get days when all I want to do is scream. I know there are worse things and it's not life threatening but it's just too much sometimes. Anyone else have this? Any words of wisdom or positivity?!

OP posts:
Hen2018 · 12/09/2021 17:55

Had to my whole life! Right ear is a constant hiss. Left ear is much worse and has a constant pressure cooker noise with a two tone siren over the top.

ItsSnowJokes · 12/09/2021 17:59

I have had it since a burst ear drum about 4 years ago. A really bad infection caused the burst ear drum and its been there ever since. I have a ringing in one ear and in the other it's ringing and a pulsatile tinnitus.

It sucks but the more you think about it the more you start listening for it. Having a fan or white noise on helps at nights. I have seen that these calmer ear plug things can help and I am tempted to get some.

Wendalicious · 12/09/2021 18:01

Just wanted to offer support- my husband has it terribly and it’s been a dark time, the same as you, over a year! It’s taken a long time to accept it but he feels stronger mentally now, all the best x

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General health
FedUpAtHomeTroels · 12/09/2021 18:06

I've had it for years too, after a nasty ear infection.
I have some hearing loss in that ear too now. I find keeping background noise all day helps me. So either the TV or radio are on. Dh hates that I have it too loud for him, but he understands why and deals with it.

sylbunny · 12/09/2021 18:08

I've had it for about 14 years now. I'm late 30s. It was due to hearing loss from viral damage. I don't honestly notice now unless I think about it - can hear it now pretty loud as I'm writing about it!

tpmumtobe · 12/09/2021 18:10

Another sufferer here. Mine's caused by TMJ. Good days and bad days. Do you know what's caused yours? Mine massively improved when I got a new pillow to relieve the pressure on my jaw joint/ear canal.

ItsSnowJokes · 12/09/2021 18:11

@FedUpAtHomeTroels

I've had it for years too, after a nasty ear infection. I have some hearing loss in that ear too now. I find keeping background noise all day helps me. So either the TV or radio are on. Dh hates that I have it too loud for him, but he understands why and deals with it.
I have the hearing loss as well. About 3/4 in one ear and about 1/2 in the other. I am the same with TV have it on nearly all the time with subtitles. Subtitles drives husband mad.
Original poster
Whatdoyawannado · 12/09/2021 18:14

Not sure about the cause, may be TMJ, anxiety, stress who knows! Have an MRI tomorrow to rule out anything obvious but I suspect nothing will come out of it. No hearing loss thankfully. Sorry you are all afflicted too.

OP posts:
awaynboilyurheid · 12/09/2021 18:15

Yes I have it too started in lockdown and it was so very tough, I struggled for about a month , appetite went, sleep affected, the noise was all consuming.
I spoke to Tinnitus UK helpline and they were so lovely. Also speaking to someone I know with it really helped, she just was like oh yes that, anyway how’s things? And her matter of fact approach to it really helped. It did go up and down in volume still does and I’m still trying to adapt but can cope so much better now. I just think oh yes loud afternoon or whatever, but try to ignore best I can and that helps. Distraction is good going for a walk, tap running or dishwasher on helps when I’m out now I’m not aware at all of it but there are still times at home it does its best to make me hear it but again just listen then go do something else. I think if others can cope I will too, till a cure is found. I do notice when I’m dehydrated it can make it louder too.

Seemssounfair · 12/09/2021 18:17

I've had nearly 9 years of tinnitus. It started in November 2012 after a series of ear infections, I remember the date as the ear infection was ongoing and I had a job interview. I had to apologise and keep asking the interviewer to repeat their questions 🤦🏻‍♀️. Got the job though!!!

1 year in is early days, it takes a while to accept it and the issues it causes. You will cope better in time.

Level75 · 12/09/2021 18:18

How old are you? It can be related to perimenopause

Original poster
Whatdoyawannado · 12/09/2021 18:21

I'm 35, too early for perimenopause? It does help to hear from others who live with it - it does make me feel determined to cope with it and not let it affect my life too much when I hear others are just cracking on. But then I do have the down days too but becoming less.

OP posts:
ifellintoarabbithole · 12/09/2021 18:36

It's pretty shit, isn't it? I've had it as long as I can remember, and have no idea what silence feels like. It can be infuriating sometimes, but equally most of the time I don't notice it so much. You will learn to zone it out eventually, but I'm afraid I have no tips to speed up the process in the meantime!

OldTinHat · 12/09/2021 18:38

I've had it for about 30yrs. Mostly I can ignore it but when I'm reminded of it (like now!) it drives me insane. Like having a white noise machine in each ear.

MinnieMountain · 12/09/2021 18:41

It’s particularly annoying when I want to read quietly. Because it isn’t quiet Angry

A white noise app really helps for sleep.

CyclingIsNotOuting · 12/09/2021 18:44

Your hospital may have a support group. Ours does a meet once a month. Can be helpful to discuss coping strategies.

Level75 · 12/09/2021 18:44

It's early but not too early. Peri symptoms can last 10 years and menopause at 45 is completely normal. You'd expect other symptoms too though (Google them - although don't get hung up on hot flushes - they are a later stage of peri).

user7012893145776 · 12/09/2021 18:49

Had this for years. I hear phones ringing. Hearing loss in that ear. Not sure if it's tinnitus that caused the hearing loss or tmj or both.

VinnieVanLowe · 12/09/2021 19:00

I've had it as long as I can remember and don't really know what silence is. Mine is ringing and whirring in both ears.

I have noticed that it gets louder and more noticeable when I am stressed so I do try not to get too stressed with work etc, but that's often easier said than done!

I've always been a bad sleeper - not sure if it's related. If it's keeping me awake then a fan or white noise helps.

I can now blank it out and ignore it most of the time. I also have some hearing loss in one ear, not sure if it's related.

It is really difficult to explain to someone who does not have it quite how frustrating it is.

loopylou42 · 12/09/2021 19:09

You have my sympathies I've suffered for a few years now.

It's a side effect of idiopathic intracranial hypertension which I was diagnosed with in 2017

awaynboilyurheid · 12/09/2021 19:30

In the early days of coping with the awful T, I had to do yoga before bed as it helped me sleep and I had to have the sound of rain on my phone to try to block it out but now I don’t need them. I still hear it if I get up to the loo but somehow I can go back to sleep fine now.

Our car was making a noise the other day and my husband said oh silence when it stopped and I said well not for me! , it’s hard to explain to others what it’s like.
Mine just came out the blue I thought the tv was buzzing but then realised it wasn’t it was Tinnitus. Think it stress related as Covid brought a lot of stress to my family.
I still have not been to a concert or cinema I’m a bit nervous and scared that it will make the T go way up afterwards, another bridge to cross, hugs to all who have this.

Original poster
Whatdoyawannado · 12/09/2021 19:33

Does anyone else have it where it goes super loud in one ear for a while then dies down again? I've read up and it seems to be called fleeting tinnitus but I had an episode on Friday that lasted hours rather than seconds. Scared the hell out of me as I thought that was my new volume 😓

OP posts:
awaynboilyurheid · 12/09/2021 19:54

Yes ! I’ve had the sound change and yes that’s v v scary!! I’m like is this it now? But then it went back to usual sound and I was like phew as that’s bad enough but the other sound was worse! Didn’t know it was called fleeting T, what a strange condition it is!

Please support Tinnitus UK everyone as they give funding to research into a cure and have raffle tickets sponsors, etc I really hope we can treat it and switch it off in the future.

GardenersDelight · 12/09/2021 20:12

I've had it for about 30 years. Sometimes I stop noticing it for a while other times it can be overwhelming. Aggravated by some things other noises, having a cold etc. Does change tones on occasion have been known to ask OH is there a funny noise or is my tinnitus playing up! 😉

IDidntFloatUpTheLaganInABubble · 12/09/2021 20:16

I've had it since I caught covid in June, I bloody hate it.

Some days I find it almost impossible to concentrate on work, IT based role so need to concentrate, it just gets so loud.