Is there anyone out there with musical tinitus ? Ive had it for about 6 months now and still trying to come to terms with it.. It started with whole ororchestra 's playing in my ears 24/7 and now just a few notes on a loop, playing on and on, the same thing 24 hours a day. I've learnt to just about live with it. now ,after struggling for months. The worrying thing about it is , all music I hear on the radio etc. sounds out of tune. which for a musician is tragic . I have been a pro musician for just about all of my life, so now I cant do what I love. I am waiting for an apointment with ENT so praying they can do something fore me. Meanwhile ,please get in touch if you are in a similar situation. I would love to hear from you.
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fuzzbox31
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Beesmac here and I can totally understand what you are going through. I am EXACTLY the same as you - undefined repetitive music 24/7. I am also the same in that none of the music I used to love to listen to sounds the same as I have lost the ability to hear higher tones and everything sounds flat. I understand completely what you are going through. I was in a dreadful state when mine first started 3 years ago. I had Labyrinthitis and literally went deaf in my right ear overnight. Although not a musician I am a music lover and it is very hard to come to terms with. You do need to see ENT to rule out anything untoward and you don’t say if you wear hearing aids?
Acceptance is the main thing and trying not to fight it - I have a wonderful audiologist who tells me I must try and embrace it. I found my GP quite dismissive as he says he has never heard of it which I found even more upsetting. Don’t believe anything you read about wonder cures unfortunately we have to learn to live with it and hopefully habituate. Read as much as you can - it is more common than you are led to believe but a lot of people won’t admit to it. I also belong to a Facebook group called musical ear syndrome. One thing my audiologist told me is that all the music that you love is still stored in your brain so if you listen to a piece over and over it will become to sound as you remember it - but remember not to have the music louder than your tinnitus.
If I can help in any way then please let me know. I have an appointment with my audiologist this morning - she was my saviour when I couldn’t cope. I don’t know where you live but this is at the Royal Sussex Brighton. Don’t despair and good luck X
Hi Beesmac, Thank you so much for your reply. At last I can write to someone that completly understands what I'm going through .I must admit i kept it to myself at first,even from my wife, as I genuinely thought I was going mad. Now I'm able to share it with freinds etc. as i know it's a real thing. I'm doing as you say and trying to live with it. I've had hearing aids for many years now as my hearing got worse playing in bands etc. with no protection but I've never had tinnitus until now. Its very interesting to hear the things your audiologist has told you. I'm lookibg forward to seeing mine. Also the MES forum on facebook sounds promising.
Thanks again for getting in touch , it really has helped me.
I hope the appointment with your audiologist goes well !
Hi Fuzzbox31 I am pleased to see you are getting responses from other Musical Ear Syndrome sufferers to be reassured you’re not on your own. They put mine down to the fact that I had sudden, profound hearing loss. Apparently the brain realises that there is no noise going into my right ear and thinks I’ll help her out as I know she is a music lover so I’ll put music in there. I am a classic example of someone with this syndrome. I thought I could hear the rotary club outside playing Silent Night!! My husband went to check and said there’s nobody there !! I thought it was funny it then changed into music I’d never heard of and I began to get anxious. When I googled and found what it was I was so distraught and thought I was losing it. It takes time and stress doesn’t help. I had another great session with my audiologist today and I told her about your post. We all help each other on here which is great. Breathing exercises help when it gets too much xx
I am sorry to hear this. I have something similar which I have had since 4 September last year. I went to Harley St ENT to have what should have been a simple procedure to have a grommet placed in my left ear to alleviate symptoms of middle ear myoclonus, a very rare form of tinnitus which involves muscle twitching in the ears, which I've suffered since 2000. Previously I'd had a grommet inserted in 2015 at this clinic which worked well. This time however I woke the following morning with raging tinnitus in the left ear, not like an orchestra but musical in that it constantly goes up and down like a malfunctioning wireless/police siren - so it is nigh on impossible to get used to. Consultant blamed an infection and plied me with a week of antibiotics/anti-inflammatories/ear drops - which turned out to be rubbish, there was no infection. He did however prescribe me clonazepam which worked for a few months at suppressing these terrible symptoms. I have since gained a second opinion and this man is more reasssuring and believes the grommet may have been inserted too close to one of the bones in my middle ear, however when I last saw him in October he encouraged me to push through this period and "hope" that when the grommet expels itself naturally, the symptoms will not be as bad as they were in September. So I think we are all clutching at straws here and 2024 could either prove to be a lucky year or things may just get worse. All I know is that the symptoms were nigh on unbearable and impossible to habituate to - but it could be that is something I will need to do if and when they return with the severity of a few months back.
How did yours come on - mine was clearly caused by the procedure carried out, it did not happen naturally.
I started hearing musical notes 2 years ago, this changed to actual tunes mainly songs which are very familiar,started with Silent Night on loop all day.I found it very hard to cope with but it now has eased to only hearing it occasionally.
Hi Fuzzbox31. I'm so sorry to hear what you're going through. I went through a nightmare with tinitus last year that I have now recovered from. I did have a couple of days of musical tinitus (I am also a musician) but mostly the more common tinitus, tensor tympani syndrome and hyperacusis. I wanted to share with you the details of a very brilliant and very experienced audiologist called Myriam Webster who I had a zoom session with (sharing with her hearing test results I'd had etc) : dwmaudiology.com.au
I found her after 3 disastrous appointments with 3 different ENT's. She told me that ENT's are typically not great with subjective symptoms such as tinitus, which was indeed my experience. She takes a lot of time to explain to patients the interplay between the mechanical and the neurological aspects that contribute to tinitus (and how this understanding can be empowering), and she is also trained and specialises in helping people therapeutically to handle what they are going through emotionally.
Julian Cowan Hill went through a terrible time with tinitus, and now helps others as does Joey Remenyi, who is also an audiologist. It may well be worth you looking them up and exploring what they offer.
Thanks for your reply Karen, I shall look up all the names you suggest. They sound hopeful .Just to hear from fellow musicions and music lovers with a similar complaint is a comfort.. When you had musical tinnitus did you experience out of tune music etc. ?
Strangely the 2nd time I experienced musical tinitus it was actually quite comforting once I settled my nervous system and accepted it.
I also generally experienced jangly sounds (provoked by external sounds), volume distortions, hearing harmonics, as well as sound induced rumbling. These went on for a few months and were very scary especially when I didn't know what they were.
All three of the practitioners I have mentioned have a deep understanding of how to work with the nervous system, and how powerful this can be if practised over time.
Sending you hope and courage, dear fellow musician.
hi fuzzbox31, I’ve had musical tinnitus since March, some days it’s not too bad & other days it drives me crazy! 😩 I hear it 24/7, it sounds like male voices singing the same sounds over & over again but I can’t make out what they are singing. When I’m out walking it changes to a marching sound, very weird! I usually sleep ok although it can take a while as I hear a generator sound as well. I’ve seen the audiologist who thought it was to do with my hearing loss. I am now on the waiting list to see a neurologist to check for any underlying nerve damage. It is easier than it was although it can be difficult to follow conversations or the tv , I just have to concentrate on the conversation & try to ignore the rest but it is not easy. I hope you get some help. Sometimes it helps just to share & to know you are not alone. All the best!
Hi Speedyknitter, Thank you for your reply. I really feel for you, as I know exactly how you feel. I know how hard it is to try and live with it. When I first had this I juist couldnt sleep at all .but its mostly OK nowdays, so I'm really grateful for that at least. Of course every time I wake its still there, I'm with you on the TV as well, I find it so hard to conentrate somtimes . I find having the subtitles on helps. What also helps is having this forum and knowing there are people out there who care. Thanks for your best wishes.
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