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?

One of my parents has severe hearing loss, and intermittently has periods of tinnitus, often brought on by certain medical procedures. So his varies between debilitating and going completely.

He was advised by an ENT consultant, who fortunately had a special interest in tinnitus, to invest in a really good quality pair of headphones and a personal radio/music player - he doesn't use a smart phone. When the tinnitus begins he plays music slightly louder than the level of the tinnitus. He then turns the volume down in relation to the decreasing level of the tinnitus. He found this really effective.

Lack of sleep, stress and becoming really anxious about the tinnitus all contribute to making it worse when it comes on. There's a good website by an organisation dedicated to tinnitus, really worth a look.

He also had very different reactions from doctors, to those who basically said that's life, get on with it, to others who were hugely sympathetic, discussed how he felt and suggested techniques and other people to see/talk to.

Thanks all, some good suggestions

I have it most of the time (possibly result of ADs as that's when it started). I find the only thing to do is to ignore it and try and focus on something else. As soon as I think about it (like when reading this thread!) it is still there but there are fair chunks of time when I don't notice it at all.

I once got advice to always have some other noise in the background to focus on, like the radio, which distracts one from the internal noise.

I have tinnitus, brought on by chemotherapy 8 years ago. You do get used to it eventually. With regards to your class, I don't think it will make it worse in the long run but mine is always at it's worst the few days after being somewhere with loud music!

Thanks. But can anyone confirm the noise cancelling earbuds actually work in loud places?

I developed tinnitus when pregnant 10 yrs ago - i thought my life was over. to this day i do not know what the cause is.
what i did find was that using a swimming ear plug- the silicon "screw-like" earplugs enabled me to alter the pitch of the tinnitis!!
it goes from monotonous high-pitched to a kind of white noise but that may be a weird treatment trhat just worked for me.
so that helped and then i forgot to use them and then i forgot about the tinnitus! and it went and i rarely think about it now. i think it occasionally comes back- say at night (but i wear sleep ear plugs so thats prob inevitable!) but it doesn't bother me and has largely disappeared, I guess.
it could well have a hormonal component as i know pregnancy can be a time when tinnitus becomes apparent.
i'm menopausal now and as i say don't really notice it/think it's largely gone.
but golly i went to some dark places with it and i want to say to you- it's normal, you will get over it- even when it returns i'm not bothered and i never thought i'd say that.

just to say " to this day i do not know what the cause" WAS rather than is as it does go and is v much something the past!!

Hi
I replied on your other thread about tinnitus, I had a really really hard time with mine in the beginning (caused by headphones). I ended up with depression and went through a very bad time. Although the tinnitus has not gone away, I have found ways to cope.
Because its worse at night (or perceived to be worse because of there being nothing else to listen to) I invested in a sound machine from BTA (British Tinnitus Organisation). Its basically a machine which comes with a tiny card which plays any manner of nice relaxing noises like waterfalls, rain, different tones, birdsong, whales etc, that you play either like a bedside radio or with headphones. I use 'sleep-phones' which are like a soft headband with tiny speakers, they are super comfortable and you can wear them all night. You can set the machine to turn off after a certain amount of time so that you fall asleep to the sounds, or you can, like me, keep it going all night. Its amazing how fast you become used to it, and now I can't sleep without it. The technology also makes the music slow down over time and get quieter and is supposed to actually help you fall asleep by changing your brain waves (something like that anyway!). I love it.
This has been a game changer for me and I no longer dread lying in the dark listening to the screaming inside my head and ears.
I really dread for the future generations when I see young people merrily blasting their music through headphones that you can hear feet away from them, they do not know the lifetime of hurt that they are in for.
I hope your tinnitus fades, some cases do over time, but if it turns out to be permanent there are ways of coping. Try not to focus on it, don't dwell on it, don't give it any more energy or time than you have to. Avoid excess caffeine and salt, some people say this helps.

I wish you luck.

Forgot to say, the chances of it being an acoustic neuroma are tiny. I also stared with unilateral tinnitus in one ear and had an MRI to rule this out, The tinnitus has since moved to both ears and the middle of my head.
Don't worry, the MRI will give you peace of mind and then you can move on.

I believe it can be driven or brought about by long term stress. A good thing to try is to listen to silence or near silence. Go find somewhere quiet . The countryside is a good place. Just relax,listen to nature and listen to the silence. You may well find that it will reduce or disappear .

Thanks again, all. I really appreciate your time and thoughts.

@LoobyLou1976 - if it continues, I'm definitely going to invest in both headphones and the BTA sound system. Currently, can't sleep with husband as if I wake up in night in distress I need to put the RainRain app on on my phone that musician friends with tinnitus suggested. But I was really insistent with the consultant - did my listening to music on headphones loud in my thirties - I'm not nearly 50 - cause this and he was equally insistent: no. I wonder if he's wrong. He's a tinnitus specialist.

I worry that not only will it not go, but that it will become both ears and get worse.

I'm not worried that the MRI will show up anything, to be honest. I don't think it will.

It is hard, but I guess it will get easier. I'm a writer, a published novelist, and it's incredibly hard to think that I'll never work in silence again.

Equally, a friend sent me an article on neuroplasticity and tinnitus which I found quite empowering and encouraging.

vestibular.org/news/03-09-2018/neuroplasticity-persistent-vertigo-and-tinnitus

Tinnitus is awful, but there are lots of tips above.

Be very very glad you do not have MENIERE'S. Look it up.

I have and it is so debilitating. Hearing loss, fullness in the ear, tinnitus and raging vertigo that makes me fall down out of the blue. Has really affected my confidence in going out and driving now. But hopefully it will pass.

The earphones mentioned above are brilliant for Tinnitus, try them.

I am very grateful I do not have Menieres. I'm very grateful for a lot of things, that's one of them. I'm so sorry that you have it @Nicoala1

Whatever pity party I throw myself into, I do know that there is always someone else suffering more.

@VeepVeep,

Thanks so much. I hope you don't think I am being indulgent or minimising your own problem either. Tinnitus is hell sometimes. Best of luck in your journey, hope it works out.

oh OP I posted on here about 6 months ago about the onset of mine so I really understand the panic that sets in when you first have it. I've sought lots of advice, both here and on other forums and here is a summary of what has worked:

• staying off caffeine
• not watching TV or going on my phone/laptop late at night (I noticed that this worsened it and the audiologist said it was due to making the brain work whilst tired)
• setting up a sound system around my bed: i have an echo on one side that plays campfire sounds (standard alexa skills) flanked on the other side by my phone which plays soft youtube tinnitus therapy music, plus another bluetooth speaker playing audible very quietly. This arrangement of background noises really helps at night.

-finding other people who have it and live with it. If they can do it, so can you! -staying off scary Facebook pages about tinnitus. Just gather the information and go. Ignore the scare stories. Keep the panic down!

I've been taking turmeric because I heard that helped but I'm not sure as I've been doing so many things at once.

Good luck OP, any questions feel free to PM me

VeepVeep if you need to PM me any time I am more than happy to help you. I also hated the idea of never hearing silence again, but weirdly, it just becomes a 'new' kind of silence. I never would have thought I would say that 3 years ago when this began, but your brain will adapt over time. The trick is not to panic and let your limbic system become activated, as the more you panic, the more you focus on it, the higher level of importance it is given in your brain and the more you will hear it.
Try to keep engaged with other things, keep a low background noise around you all the time to keep your mind off it. Think of it this way. A candle burning in the daytime, with all the other light around it, doesn't look like much does it? It's just a light among many lights. Take that same candle flame at night, with no other lights around it. It's suddenly the brightest thing in the room, the only thing you can see. Tinnitus is like that, but with sound instead of light. At night with no other noises or distractions of the day, when its all your mind has to focus on, it becomes the 'brightest' thing in your mind. Give your brain something else to hear and the tinnitus will dissolve into the background.
I promise you will get through this.

I've had it for years. Doesn't bother me anymore. Just got used to it.

That's a really good analogy LoobyLou

I've had it since my thyroid went. It's a constant high pitched whine. It's worse when my thyroid is undermedicated, but it never goes away.
Initially I found listening to quiet white noise useful at sleep time. My advice is to learn to love it. I used to get strssed and listen to it. Now i use it as a monitor to know when it is quiet. I sort of tricked my mind into thinking that when I can hear that and only that its super quiet.

Its worse when i'm stressed and it's taken years to accept it but I kind of have now.

I too have tinnitus for about 4 years. Drives me insane sometimes. Also had the MRI, hearing tests etc and was found to have noise induced hearing loss and tinnitus is common with this. The shape of the audio graph curve shows if this is the case apparently. I have high frequency loss and wear hearing aids which help in the day enormously as the amplification of the lost pitch lessens the tinnitus. Also coincided with a period of stress and onset of the menopause - do who knows ? At night I have started to wear white noise hearing aids. Sounds like rain through the aids and only you can hear them. Available on the NHS. Getting used to these once you get used to 2 noises in the ear !!

Learn to relax because if you concentrate on it and get stressed, it will get worse. So breathing exercises, keeping occupied, not focusing on it all help. Avoid completely silent environments because if you can hear it, you will focus on it and it will feel worse.

I have it permanently in my left ear. Most likely from standing too close to speakers at concerts.

Best advice I can give is when you lie in bed at night rather than letting it annoy you try and tune into it. Use it as your own white noise. If you can get into that mindset and listen in to the hum it stops the brain working overtime and sends you to sleep.

For those of you who had tinnitus as a result of noise/noise induced hearing loss - how long after the event did the tinnitus strike up? Soon after or some time?

I feel so upset with myself for listening to music loudly and having done this to myself - even though it was over 8 years ago that I've done that with any regularity

I’ve had it for years. Also had mri but nothing found. Thankfully doesn’t stop me sleeping but it can be annoying when it’s a quiet environment.,