Hello everyone, My name is Graham (age 54) and just been diagnosed with T. Unfortunately, a long long time ago I had an Acoustic Neuroma brain tumour and had this removed but I could no longer hear in my left ear and never will. I had adapted over the many years to listen with 1 but a a couple of weeks ago I started getting a high pitched tone in my good ear. The sound never breaks and is constant, I went to my GP who said my ear was rammed with wax, she referred me to an ENT department where I had the wax sucked out, unfortunately the tone was still present so an ENT consultant examined me. I went for a hearing test in the ENT's audiology and the results were that I had loss of hearing in my 'good ear' when high pitched tones are played.
The consultant said my ear was now free of wax and I had Tinnitus, I have now been given an appointment for an MRI scan in a weeks time. (Must say I am impressed with the NHS service so far).
A week has gone since seeing this consultant and I am at my wit's end. The tone just will not let up, I am a postman and when I'm on delivery I can hear the tone but the noise from traffic masks the high intensity. I dread going home because the tones seems to get louder and as for going to bed... I just cat nap throughout the night, I am taking Amitriptyline 25mg before I go to bed but this doesn't make me sleepy or reduce the tone volume in my head.
I'm googled out on looking for miracle cures and have downloaded endless Apps. I listen to music when in bed but the tone is so loud I struggle to relax. Last night I switched the music off and played pink noise through the mic of the phone, as well as annoying my wife the pink noise did nothing. So, I got up again for the 3rd time and plugged in my ear phones and listened to music. Sleeping with an earphone in was very uncomfortable but I will give it another ago tonight.
Today, I went to my GP and pleaded with her to give me something to reduce the high pitched noise or give me something to knock me out for 8 hours. Sadly, the GP although was genuinely understanding of my desperation, she could not prescribe anything and told me to wait until the ENT consultant had seen my MRI scan and given me an outpatient appointment.
This could be ages and I'm so upset.I feel the world's against me and this unwanted gift given to me is going to ruin the rest of my life.
I have read about Hypnotism. the Titinus Clinic. App sound Therapy, accoustic therapy and so on and if I'm honest I still don't know what I should do.
Is there anyone that has had a similar experience as me and can advise the best APP, sound therapy or anything else that I can try?
Also, once the ENT consultant has seen my scans and if says there is no underlying problem causing the 'T' then what do I do, where do I go from there or do I just suffer for the rest of my life?
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Hi Graham and welcome to the forum. I think we can all empathise with your post. It's pretty much a classic description of what we all go through when we first get loud intrusive T - panic, despair, anxiety, insomnia, a feeling that your life is ruined etc. We all spend hours googling Tinnitus and end up more confused than ever. First of all, if you've only had T for a week then it's not considered permanent - there is a chance it might improve. The good news is that even if it doesn't, you won't always feel like this - it does get better. The bad news is that there is very little you can do right now that will give you much relief. At the moment you are in "fight or flight " mode and it's all very scary. Your T sound is all you can hear all day and you are totally focused on it. My advice is don't pay for any therapy - stick with the NHS and the advice you will receive on here. The first issue to overcome is lack of sleep. Sound therapy at night does help. I'm not saying you will immediately get a good nights sleep but most benefit from playing nature sounds like rain or the sea set at a volume just below that of your T. It shouldn't be loud enough to mask out your T sound. The idea is that your brain will push aside the T sound and focus on the other sound. If you're really not getting any sleep then your GP may be able to help here. I would advise not to fight your T. Stop searching for ways to make it quiet or stop altogether. Accept that you have have it and concentrate on leading as normal a life as possible. Keep busy and active and avoid quiet situations. We all find our T is loudest when we go to bed and when we wake up in the morning but in time it just won't bother you. Get out in the fresh air as much as possible. Habituating to your T is a long slow journey. If it hasn't happened yet it soon will - you will suddenly realise that you hadn't noticed your T for maybe the last 15 mins or so. This is the first step to habituation. You will have proved to yourself that your brain can learn to ignore it. Slowly these periods when you don't notice your T will get longer and longer. When you listen for it it will always be there but if your brain is ignoring it it's pretty much the same as not being able to hear it. I'm sure others will chip in with lots more advice. Michael has written an article on tinnitus which would be good reading for you. He will probably be along soon to reply to you.
Hi John, Thank you so much for replying so soon. At the moment I feel like I have an unwanted guest in my house and no idea how to get rid. I've read about Habituating to your T but to be honest, I've read that much that nothing is going in due to panic, I think I'm scanning material in the hope I see the word 'cure'.
I guess I need to be patient, I have downloaded a few Apps and currently listening to Tinitus Sound Therapy Service, It's a little strange to hear yet more high pitched tones but I am bearing it because I am in control over it and not the other way.
Hi Graham. Yes patience is a virtue when it comes to T. I'm afraid there is no quick fix - you just have to take things at your own speed. And even when you think you are really starting to make progress you will get setbacks. We all do. Tinnitus Sound Therapy Service is a new one to me. It sounds a bit like Acoustic Coordinated Reset Neuromodulation where a sequence of tones and beeps are played, as offered by The Tinnitus Clinic. Don't be swayed by the testimonials you will read on any websites regarding this sort of therapy. I'm afraid there is no good scientific evidence that this treatment has any benefit over placebo. Let us know if you feel it helps though. I have been using sound therapy at night now for years. I've never bothered with an expensive sound machine - I just use phone apps which play nature sounds and white, brown and pink noise. There are quite a few available and they offer more variety than a sound machine. The one I keep going back to is "Relax Melodies: Sleep Sounds" by Ipnos software available on the Google Play store and probably IOS as well. There is a free version which has a good selection of sounds but it's worth paying the couple of £s for the pro version which gives you a lot more sounds to choose from. One of the features that I like is that it lets you mix different sounds together and adjust the relative volume of each sound and then save the result as a favourite.
Hi John, you are right with the App I downloaded, it has a slide bar to let you set the pitch of your T tone, then it adjusts the play back with intermittent tunes . I have just downloaded the Relax Melodies App and will give that a go. Thank you
John has given you some very good advice. If you would like to read my tinnitus article that John refers to then, please send me a Private Message with your email address. Please don't post it in the main forum.
Hi John I have had t for just over two months. This more or less sums up what I have experienced. I am able to habituate for short periods of time, but when I hear it it is just as loud as when I first heard it. I have an appointment for t therapy next week. Im hoping that will help. I am still unable to work as a musician. Can it get better than this after over two months of living hell?
It is good news to hear that you experience periods of calm with your tinnitus and find it acceptable to live with for short periods of time. With respect what you are experiencing isn't habituation. It is quite common for tinnitus to fluctuate in the early stages, within the first 6 months and longer to be precise until it settles down.
True habituation to tinnitus is when one hears it but is not troubled by the noise and this takes time. A period of 2 months to habituate to intrusive tinnitus is rare I believe and something I haven't heard of. Just give it time and I believe you will continue to make steady improvement. The tinnitus therapy that you will be having whatever that entails should also help your habituation process.
However, regarding playing music as you're a musician I advise caution. Loud sound and tinnitus do not go well together. Even if one wears the best hearing protection in the world; if external sound is loud enough it can still reach the inner ear by bone conduction and irritate the cochlea. Sorry to sound so sobering. I'm not saying that you shouldn't continue playing a musical instrument or playing in a band, but I do advise caution.
If you would like information of sound reaching the inner ear through the skull via bone conduction, then please email me and I'll send you a website link.
Hi musician12. I agree with what Michael has said. It's still early days for you yet but the fact that you can ignore it for short periods is a great start. I still hear mine on and off throughout the day and it's still as loud as when I first heard it. To be honest I think my perception of how loud it is does vary a little but you shouldn't expect the volume to go down the longer you've had it. The only thing that changes is your ability to ignore it and when you do hear it, not to be bothered by it and to quickly ignore it again. I can't yet say that my T never bothers me even after nearly 4 years so I don't consider myself fully habituated yet but I do know that I'm better than I was this time last year, and that last year I was better than the year before and so on.
Hi john thank you for your post it is very informative which I found very useful to know. I now realise that I have to learn to deal with the volume as it is and not wait for it to go quiet, and if it does then it's a bonus, but not to think about it. It seems that acceptance is half the battle and then you can move forward? It's good to know that you improve in someway as the years go by, it gives me hope.
Hi Grahame, I was exactly where you are a year ago, and i can promise you it does get better! You'll always get great advice on here, I would also add STOP GOOGLING!! That way madness lies, it will only cause you to focus on the tinnitus, and the best thing you can do is focus on absolutely anything else! Yes that feels impossible right now but you need to try.
A great app I've found is simply called 'white noise' it's the 1st one that comes up when you type white noise into the App Store on the iPhone. The amazon jungle sound is great for me.
I'll also add that being fitted with hearing aids has been a life saver for me, my T was caused by hearing loss, I don't know if this is an option for you but I highly recommend.
Anyway keep posting on here, we understand, they're a lovely group of people. Best wishes-Bev x
Hi Bev, I'm so glad I found this site, because its not a physical injury or disease I feel like people I talk to about the intensity of the T don't understand how mentally debilitating it is.
Because I am permanently deaf in my left ear, the last thing I want is to damage my right ear. I will ask about hearing aids when I next see the ENT consultant, in the meantime I'll give the App sounds a go, Are these therapy sounds just for night time sleeping or do we use them during the day too?
I am currently using my sons ear phones that sit inside the ear, very uncomfortable for sleeping, are there specially designed ear phones for sleeping in ?
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