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Tinnitus - waiting for MRI results, any success stories to share (please!)

(13 Posts)
WeAllHaveWings Wed 28-Jan-15 22:22:57

Ive always had minor sounds in both ears, thought it was normal and never mentioned to GP.

I then Had an ear infection last June and since then have had severe tinnitus in one ear. It varies from a constant loud low drone, to high pitch whistle and feels like its getting worse and starting to really get me down now. I can't concentrate at work to the point i nearly walked out of a meeting today, it s really impacting my work. i struggle to fall asleep, its like trying to sleep beside an air conditioner switched on full blast right beside your ear.

I've been to GP, ENT, audioologist (hearing test was ok even though I struggle to work out what people are saying in open office, or if not directly facing them, dr says this is normal hmm). No earwax, infection,or pain. Waiting for results of an inner ear MRI scan. The dr who reluctantly referred me for the scan believes that it will rule out any physical problem, but I get the feeling he will then say tough luck, have a look at the leaflets i gave you and go learn to live with it.

Music and tv used to distract me from the noise but no more. Background noise (natural or played on a white noise generator) sometimes works but not consistently or for long and I read this can actually make it worse as the brain starts getted used to them and fills in even more noises when they are switched off. Drumming on skull technique stops it temporarily (for maybe a minute or two).

The only thing that consistently stops it is driving in a car (recorded car sounds don't work). I haven't tried any specific vitamins (I take a general multivitamin) or medicines, dr didn't think they would hurt, but wouldn't help either.

Had Anyone had successful treatment for this, or will it be a case of living with it? Has anyone had treatment (NHS or other) to retrain their brain to stop the tinnitus, did it work? Any suggestions on way to try next? I am getting desperate now!

ShootTheMoon Wed 28-Jan-15 22:28:09

I'm sorry, I don't have any help for you, but as a lifelong sufferer of tinnitus I am interested in the responses! I had two sets of gromits and have scar tissue on my ear drum so I have always assumed that was responsible.

I have a pet theory that if I have my tongue tie separated, it will help my jaw sit properly and let my sinuses drain - some people have reported improvements in tinnitus. But there isn't any actual science to this effect.

supadupapupascupa Wed 28-Jan-15 22:29:57

I have permanent tinnitus. Always make sure you are hydrated. Cut the caffeine if need be. Smoking makes it worse. Loud noises make it worse. Illness makes it worse. Other than that and distraction, as you have discovered, there isn't much you can do. But please don't underestimate how much difference hydration can make.
Sympathies, it can be a living hell. I'm used to it and ignore it and it doesn't bother me even though it is so loud that on a hearing test they have to make a pattern with the sounds so I can distinguish them from the noises in my head. Listening to your tinnitus can actually make it louder - really - so ignoring it and relaxing is crucial.

MrsBradleyCooper Wed 28-Jan-15 22:34:45

I too have permanent tinnitus. It used to bother me a LOT, but now I only notice it if it is extremely quiet. I don't know if I've got used to it or if it has actually improved. I saw a specialist tinnitus counsellor through the nhs - she explained all about it in full detail. (this was after MRI results and appointment with consultant). I hope that helps?

MoonshineWashingLine Wed 28-Jan-15 23:05:55

I've had tinnitus since I was 11, it's in both ears and has got worse over the years along with my deafness. I'm now 30 and wear two hearing aids but don't let that worry you, tinnitus can occur without hearing loss. I found it got much easier to ignore once I got my hearing aids as they amplify all other sounds and my brain has sort of learned to block out the tinnitus noises. I only notice it now occasionally at night or when there's a strong change in the frequency or loudness of the tinnitus.
I would say though, it's not really normal to not be able to hear people if you're not looking at them, that's a classic symptom of someone who has maybe a slight hearing loss and has learned to compensate by lip reading, I did it for years before getting my hearing aids!
I would suggest perhaps getting a referral to a different hospital or different consultant.
You could also try Tinnitus Retraining Therapy which is available on the NHS.
Good luck, it does get easier to ignore over time smile

JazzAnnNonMouse Wed 28-Jan-15 23:34:56

I have constant tinnitus which started around the age of 11 too.
I'm 24 now and it's got worse. I think my hearing has deteriorated too. It feels like there's a blockage in my ear when there isn't. It's so loud the ringing urgh

Someone told me that Everytime the pitch you hear changes you've lost the ability to head the previous pitch -does anyone know if that's true? I dread it changing as I think of the hearing I'm loosing. I love music and singing sad

McFox Wed 28-Jan-15 23:37:55

I agree with everyone else, it's awful and upsetting sometimes, but it does get easier to ignore. I have hearing loss in one ear, have done for about 14 years now, and the tinnitus started when the hearing went. It really only bothers me when it's quiet now. It's loud just now because I'm sitting in bed in silence, but I'll listen to an audio book to drown it out which helps me get to sleep. I sing (really, really badly!) a lot when I'm at home which also helps.

It takes time but you'll find your own coping mechanisms.

Musicaltheatremum Thu 29-Jan-15 13:34:54

I've had tinnitus for a number of years. Wonder if it was all the night clubs I went to as a teenager? I can just live with it but it is annoying and threads like this make it worse as I tune I to it.

ProfessorDent Thu 29-Jan-15 13:47:05

Well, tinnitus is an odd thing. Literally, it seems to mean 'ringing in the ears'. That is like describing an illness as 'pain in the leg' - I mean it could be caused by anything, with different chances of a cure, from gangrene, pins and needles, broken femur, cartilage trouble, cramp, you get the picture.

Now tinnitus gets a bum rap because you go on their website and they say, hey ho! It's incurable! Just what you want to hear. Then you realise the site is aimed at raising money, so they want to make it sound as bad as possible to get the sympathy vote. It also says helpful things like, hey, it can get so bad, some even commit suicide! Like, thanks for that.

Now, one element of tinnitus appears to be a tad incurable. That is when the tiny hairs in your ear are damaged by loud noise, a pop concert obv, over a long period of time.

But others can be caused by a flu like thing that you just can't shift. I seem to have that. Confusingly, I got it in chime with a load of things: going on the Atkins diet (too much protein can bring it on), looking at the PC on my lap for hours on end (it affects the muscles from your ear to your jaw line), drinking wine a bit on the Atkins and a loud concert at Shepherd's Bush. And, the flu jab when I had a bit of flu already, thanks.

To alleviate it, and stop the ringing waking me up at 4am, I took a Neurofen capsule, and then switched to Paracetomol (they are cheaper). The latter reduce body temperature, which tends to rise at nighttime, hence worsening your tinnitus. Take two at a max, however obviously.

It coincided with some urgent need on my part to gulp down pints and pints of water, and when I got to the top of the stairs I would feel exhausted. So it seemed brought on by flu.

Some say you notice it at night cos of less noise around, the silence makes it apparent, but of course it could be the body temp rise flaring it up. That said, a very low CD on in the bedroom, sort of ambient noise, trance type thing chill out whathaveyou on Vol 2 just takes you out of your head a bit and can be quite relaxing. You want to avoid a fight or flee thing.

Triggers? Cheese and egg, esp round bedtime, drink on empty stomach, certain types of coffee. You might want to sweat out the flu in the steam room and sauna but beware this might make things worse temporarily as of course your body temperature will rise.

WeAllHaveWings Thu 29-Jan-15 20:24:35

Thank you everyone. Lots of food for thought there,

ShootTheMoon the more the merrier!

supadupapupascupa I should drink more water and will try that, I don't drink coffee but have 2-3 cans of coke a day so will try to go coke free for a month or so, or maybe even kick the habit (unless there is vodka involved!)

MrsBradleyCooper Good to know the NHS have tinnitus specialists, can ask for that when the MRI results come back, assuming they show nothing.

MoonshineWashingLine Hearing aids was something I did read about, it said that even though I passed a hearing test the amplification from a hearing aid could help stop or dampen the tinnitus. I will broach the subject again with the consultant (hopefully I'll get another one this time as last one was very dismissive).

JazzAnnNonMouse I also have a feeling of blocked ears, have for years, but consultant with also dismissive of that being related.

McFox to begin with I tried, and succeeded to ignore, but its getting louder and I think the realisation that it may be hear (excuse the pun) forever is getting me down a bit now, maybe once I accept it, it will be easier.

Musicaltheatremum Been a long time since I've been to a nightclub!! (late 40's, prime age for tinnitus to develop!), maybe the damage was done during the heavy metal gigs I used to frequent in my youth!

ProfessorDent Muscles is an interesting one, got my first tablet/iPad for mothers day in March last year, tinnitus in June hmm, along with having a PC based job I wonder it they are related as I do get tender shoulders sometimes from too much use. I'm left handed and tinnitus is in left ear..........................
Temperature is also interesting, I have noticed a increase in body temperature over the last year, I used to also be the one who felt the cold and turned the heating up, now I'm turning it down and can also be a bit sweaty at night even in winter with heating off (sorry TMI). I'm in denial that the menopause maybe approaching as no other symptoms. Will mention this to GP/consultant too.

Talgur Wed 13-Jan-16 04:17:52

Here's a recent and inspiring interview with Denis W. who found relief from chronic Tinnitus using mindfulness and Stoicism. Hope you find it valuable on your own journey -->

indigo88 Tue 19-Jan-16 19:58:40

Developed tinnitus in 2008. Still have it and was very distressed when it started. I'm fine with it now.

Talgur Tue 26-Jan-16 02:49:29

Here's a recent and inspiring interview with Robin who learned to live happily with Tinnitus. Hope you find it valuable on your own journey -->

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