To ask for reassuring stories about tinnitus?!

[VeepVeep]

I posted last week that i was having a bout of tinnitus, and whether to stop my exercise class (which plays loud music).

I am here again! It's 10 days later, and it's still 24/7. There have been long stretches where it's low level, but at night I have had several unsettling nights - even listening to a white noise app - and then it freaks me out as it feels like it's never going to go.

I have seen my GP, and as it's unilateral (in one ear) he sent me for an urgent referral and I used my health insurance. I saw an ENT consultant who is going to test my hearing and I'll have an MRI but he was pretty a) nonplussed 'tinnitus is a medical phenomena' was the opening line. He doesn't think they'll find anything in the tests, so what I took from him is that it's something I'll have to live with.

He 'didn't think' it would become persistent - most people he sees have intermittent tinnitus - but obviously can't say.

He also told me a) it had nothing to do with listening to music loud on my earphones in my thirties when i went running b) not to change a thing about my life now. ie.keep going to my classes.

I feel really wretched about it today. The night was bad. I feel very scared that it's going to hang around FOREVER. I work in silence. I love silence. And I'm terrified that;'s gone for good.

Please, does anyone have any reassuring personal tales? Or any thoughts?

Hi OP,
I have permanent tinnitus and I always have done, probably due to many ear ops. When I was a child I would ask friends if they “heard things”! I have absolutely no idea what silence sounds like and it is in both ears and changes from ringing to buzzing to just high pitch noises.

There is no cure but sometimes it isn’t permanent. I know this may not comfort you but it doesn’t have to rule your life. I find people whispering hard to hear because my tinnitus gets louder the more carefully I listen but other than that it doesn’t impact me.

At the moment you are very much focusing on the problem. In my experience it makes it louder. When I sit to listen to my tinnitus it becomes deafening. You have to train yourself into listening to the music or white noise. I like the noise of a clock ticking and a fan in the summer.

I have tinnitus in one ear. Tests discovered I had moderate hearing loss in the high range in one ear and the tinnitus was a product of this (so it's not an unknown phenomena). I wore a hearing aid for a while and saw a hearing councillor about it. I still have it (10 years on) but now I don't notice unless I think about it. For example writing this has made me 'hear' it. It used to really get me down as I felt like I'd never hear silence again and it was so persistent but now it's just part of my life. Don't let them fob you off though as it really really got me down st first and you need that support. I was 26 when first diagnosed.

Also if “most people” he sees don’t have it permanently then there is nothing to say you will be any different!

I've have tinnitus as long as I can remember. I just thought it was normal until I was in my early 20s. However, if it's a brand new thing for you I expect it's pretty disconcerting. As it's new to you I expect you are focussing on the tinnitus sound and do it seems overbearing. The trick is to mentally learn to zone out from the sound. You can learn to do this with time.

The RNID shop has some products available that can help mask the tinnitus.

2 stories of tinnitus here. DM developed overnight hearing loss (total hearing loss) and tinnitus in one ear aged 68 - GP didn’t take it seriously 14 months later after DM had returned many times she was diagnosed with a benign acoustic schwannoma (2.5 cm) in her brain which required a 12 hr operation to remove. To put your mind at rest these are pretty rare 1 in 85,000 and when DD aged 16 at the time even I who suffers terrible health anxiety developed tinnitus I wasn’t worried about a tumour!! Anyhow DD is now 17 and the tinnitus is still on going. Hers seems related to anxiety and she has never listened to loud music. It started with an ear infection and has never gone away. It’s always unilateral but sometimes bilateral (if that makes sense!) She was also told it would go away but is coming to terms with the fact that it probably won’t go away. She copes very well with it - her main strategy being always having something to listen to that isn’t the tinnitus.

I have tinnitus in one ear too, I've had it for about 5 or 6 years. It just came on suddenly one day and hasn't gone away. I also had an MRI, which is to see if you have a benign tumor as that can sometimes be the cause of having it just in one ear. I don't have the tumor or any other reason for having tinnitus, apart from slight hearing loss.
I found it unbearable to begin with, found it worse when I was stressed or had a cold. The good news is that you do get used to it and it becomes much less of an issue. I only notice it now if it's very quiet or I'm thinking about it. I do miss silence. I had CBT which helped a little bit but mostly I think it's just getting used to it. I do think some people see tinnitus as a minor issue, but I bet they don't have it!

I felt the consultant, while very nice, could afford to be a bit glib as he didn't have tinnitus.

I hate the idea of no silence. I work in silence. I CHOSE to work in silence.

So, am I assuming that it's here to stay? That it won't just go now?

Should I be doing anything preventative? I'm soon to take a long flight which now really alarms me - what if it makes the noise even worse? Should I not fly?

No, you shouldn't assume that it will be permanent, it might go or it might not. Did you have a hearing test when you saw the consultant?

I developed tinnitus after going to a concert. I thought I'd have it forever and finally got used to getting to sleep with the noise in my ear. Thankfully after 9 months it seemed to fade and now I'm 100% clear. Hopefully yours will be temporary as well.

Oh and I flew with it, only a short flight but it didn't make any difference to it.

I have tinnitus and have for years. As @Ourownpersonaltrap says, if its on the forefront of your mind, you hear it much more. There is no cure as such but you can learn to manage it and live with it. There are some great white noise tinnitus apps, which help to train your brain to focus on another sound rather than the tinnitus, i can tell you which ones help me if youre interested?

You won't have any problems flying. If anything the all the back ground noise you get in an aeroplane will mean you notice the tinnitus much less on the flight.

I have semi permanent tinnitus now, it started last year and I got very very upset by it. Now I'm sort of used to it, as a previous poster said, I just don't think about it and so don't notice it as much. When I do I put something on. Obviously now I've noticed it today but honestly, it gets so much easier.

I have tinnitus in one ear,have had it for about 6years now. Had an MRI but that was clear. At first it was awful & really got me down but as others have said I got used to it & only notice it occasionally.
Using noisy tools e.g jet washer or if I go to a concert (although I tend to wear special earplugs now,especially as my choice of music is particularly loud - Slipknot!) makes it more noticeable & annoying.
But I reckon I'm stuck with it for life now

Thanks all. I'm reassured that you all get used to it after a time.

I also have it permanently per some posters above. Also had MRI etc. Nothing can be done. You do learn to live with it. The ringing is “ok”, the pitch changes less so. I also now get what sounds like a baby’s heartbeat on a dopler. All fun and games OP. I hope yours is only temporary. And yes I’d probably lay off the classes with loud music or else wear noise cancelling earphones/earplugs.

I had timeouts for about a year in my left ear. I don’t know why it started and it really bothered me. I read somewhere to try and think of it as brain music and I think that thinking of it like that helped me accept it. Eventually I noticed that I no longer had it all of the time and gradually the gaps got bigger until it finally went. Hope yours does too.

*tinnitus

God, baby's heartbeat sounds awful - isn't that a different sort of tinnitus? Pulsatile tinnitus? I would check that out

As for noise cancelling earplugs - I have them. Bought them this week.

Do you think they will be enough to counter loud noise/music or should I be avoiding those places completely?

I saw a brilliant pair of noise cancelling headphones but they are £300!!!

Developed tinnitus 5 years ago. Was refereed to ENT and MRI thankfully normal. I now know it was triggered by both the start of the menopause and extreme stress. Stress is now gone and tinnitus although still prese t rarely cause me problem. It's a mixture of having got used to it and it not being as bad as used to. At times it was so bad it woke me up.

One supposition, I also have very low blood pressure. My GP told me to increase my water intake a lot and since then, the tinnitus has been much better so maybe it does help, directly or not (also stopped all caffeine).

I have permanent tinnitus caused during pregnancy. My hearing is fine otherwise, saw ENT and the only thing they suggested was counselling to help cope with it but I didn't bother. It's worse at night and I hear all manner of strange things. I have had it for so long (9 years) and I have just learned how to cope with it. Strangely, even though my ears are fine sport from the tinnitus, when I yawn I can't hear a thing (although DH thinks I make that up)

That's interesting - I don't think i drink enough water and I've gone though a difficult menopause

My acupuncturist said my pulse is very mixed - as in worn out

It wakes me up every hour - I can cope fine in the day.

I've had it for 20 years after clubbing as a teenager. I can hear it if I listen for it, but otherwise it doesn't usually bother me at all. The exception is one office at my workplace which is completely sealed and if I'm the only person in the I have to leave the door open.

I have tinnitus and have never seen a doctor about it. I've had it since childhood (music on max in headphones) and always assumed it was normal because I couldn't remember not having it!

Silence was literally always not-silent to me because that's when I would hear the high-pitched tone. It just goes on and on and on, but I'm so used to it that it doesn't bother me. Most of the time it fades into the background so I can focus on everyday noises but if I think about the sound then it gets louder and comes nearer the forefront.

So, while it has never gone away or gotten any better or worse, it is bearable.

You know those coloured spots you see in front of your eyes when you close them, or if you press into your eyelids? I see those all the time took with my eyes open, since childhood, as long as I can remember, but not to the point where it gets in the way of my sight. It's like seeing air, like the air particles are little dots of red and blue and green and yellow and they are floating in the air all the time, and if I focus my attention on them (more noticeable at night in the dark) I can make them flow in certain directions - I used to pretend it was me using magic as a kid ((again, the reason I have this is because I spent a lot of time as a kid pressing my fingers into my eyelids because I enjoyed seeing the colours and if I did it long enough it felt like I was flying, very weird, but seemed to have caused some permanent damage)). Again, never seen the doctor because it doesn't impair me.