Humming and musical t

[SUS776]

3 years in with titinnis woke up during the night thought l head a humming noise or like back round music no one else heard it l have heard of musical t anyone else experience this

[rabbits65]

Oh well Music is nice !!! I have the humming tones though and roaring like a fan oven .

Are you coping ok ?

[SUS776 in reply to rabbits65]

Not good at the moment lm thinking l was habitation then new sound thinking is it ever gona end l no l have t but didn't think l would suffer this to nightmare no getting away from it although bit stressed at the moment thanks for replaying

[rabbits65 in reply to SUS776]

I know , I understand . I was only joking about the musical bit. I think the worse part of tinnitus is the fact that it’s going continuously . At least you know that you are not alone with this. We are told it’s not going to do us any harm . We are told to not focus on it or else it will control us . All this is hard work in itself .Take care of yourself. 😊

[1966366 in reply to rabbits65]

My T has now become so loud, it's impossible not to focus. Just been swimming and I could hear it under the water. Then got tube back to home, and you would have thought that with all the surrounding noise you would temporarily lose 'it'. Not so. Walking down the road and all I can hear is a roaring like an industrial fan with a new, higher pitch warble accompanying the torture.

[rabbits65 in reply to 1966366]

I get that roaring too, like a fan oven . Also loud humming . Mainly in right side of head/ear. What really annoys me the most is the fact that there is no help out there to help us . Doctors just leave us to get on with it.

[1966366 in reply to rabbits65]

Your spot Rabbit! Im totally fed up with ENT and am giving it a shot with another private consultant: I came to bed at 10pm and woke up at 2am with a very loud noise... It was T. This is now unbearable and no quality of life.

[rabbits65 in reply to 1966366]

😂 😂. Well, I paid £195 to see a private ENT consultant. He sat in the room just perched on the edge of a table and stared at me . He made me feel uncomfortable. All he did suggest was a scan and a hearing test. Both came back OK. So I went back to him again, desperate. He said that he couldn’t do any more other than send me to the hearing centre that charges a fortune for their tinnitus training or something. I wasn’t prepared to pay anymore money for people out there that just want to make money out of us because we are so desperate. I agree with you it’s awful this tinnitus but apart from reading those books don’t know what we can do. Read tinnitus from tyrant to friend. By Julian Cowan Hill. It’s not a bad book and some help and understanding. Let me know if you know of more books.

[1966366 in reply to rabbits65]

Well I could have told you that! Maybe I didn't make it clear. What I am doing is going for the TRT, which NHS ENT do not offer. I suppose at the end of the day it all depends on the severity of your T and to what extent you are prepared to go to 'improve' on the quality of life. I see that you frequently champion Mr Hill whereas I and several other associates are not overly impressed. But it is all subjective. Whatever floats your boat!

[rabbits65 in reply to 1966366]

Nothing floats my boat !!! 😂 😂. Tinnitus retraining therapy , I think that’s what I could go and try too. I live in Bexhill on sea and I think the nearest place might be in London. Let me know please how you get on , I hope it helps you. I think most of us on here have severe tinnitus as we need the support of each other’s comments . Tinnitus sure is a mixture of puzzles !!!

[1966366 in reply to rabbits65]

Bexhill on sea! Sure is a nice place to have T if you must have!.... Yes, TRT. It is the last resort; I have tried everything else, and although I have my doubts, from the digging of information on it, and speaking to other people who have tried it, I have to take the bull by the horns and give it ago. I have a Harley Street consultation coming up and it is my plan. I am not looking for a miracle cure, just a less level of hell that I have to daily endure.

[rabbits65 in reply to 1966366]

Thank you for your reply . That’s right Harley Street . I think it was there they phoned me for a free chat last year , it was in lockdown and they were seeing people in lockdown which I thought to myself at the time I’m not going till where out of lockdown. I might well go there too at some point. I agree anything and everything is the only way to try and improve things. 😊

[1966366 in reply to rabbits65]

I'll let you know how I get on. I have also contacted a big wig at Addenbrook Hospital, Cambridge, who comes very well recommended. It's really trial and error without parting of too much hard earned cash. I am just trying to improve things because I know that there is no cure. Thank you so much for your input and help, I wish you all the best for your future.

Regards

[rabbits65 in reply to 1966366]

Very well done for all your efforts and I hope you have very good luck . Yes it’s a question of definitely drawing a line underneath it. Exactly how far and how much you wish to spend .

I suppose there are some very good scientists out there if we are prepared for the inevitable 😂 😂.

Keep me posted !!!!

[Harrier58 in reply to rabbits65]

Hi, I lived in Bexhill a couple of years ago pre T it was too quiet for me at the time - ha the irony.

[rabbits65 in reply to Harrier58]

Hi , I have only lived here 6 years. I do like the sea air and hearing the waves is certainly nicer than hearing the tinnitus. 😂 😂 😂

[Harrier58 in reply to rabbits65]

Yes, I was there about 4 years ago - still have a house there so may go back. Sea is lovely - seagulls are a bit much 😂

[rabbits65 in reply to Harrier58]

They are indeed (seagulls)

[robtheprint in reply to rabbits65]

Hi rabbits65, I am reading 'Making Friends With Tinnitus' by Libby Cunniffe at the moment, (Amazon Kindle) finding it interesting to read of someones positive outlook to having Tinnitus. Hopefully I will find some helpful tips. My Tinnitus has been with me for a few years now and I have never regarded as a friend but who knows anything is worth a try.

[rabbits65 in reply to robtheprint]

Hello Robtheprint. That sounds like a very interesting book. Is it a new book out do you think ?

We do need the help and support of this type of reading thanks. 😊

[purenostalgia]

No Sus776, I have experienced the odd change in tone but never heard music Tinnitus.

Take Care

Mike

[1966366 in reply to purenostalgia]

It is called Musical Hallucinations: I've personally had lots of different sorts. At first I was pretty convinced I was going crazy, specially with the very deep 'Faust' sounds, but I have become comfortable with it. Nevertheless, try to explain what you have experienced to someone else that is not well informed of T and they will think, more often than not, think you have lost it! Yep, I have heard choirs and orchestras lol! The professor that was treating me at the time said that it was related to my occupation - I was a musician. All the best, Mike. I have followed many of your posts and you appear to be suffering quite badly with the awful T.

[SUS776 in reply to 1966366]

Yes thought l was good felt like l was getting back to my old self again yes thought l was going loopy anyway just another step to live with thanks for replying l listen to a lot of music too

[Harrier58 in reply to 1966366]

Hi, there, I'm new to this site and new to musical T started about a week ago. Finding it really tough. First I just joined for general tinittus support which has come on over past few months - now it seems I have joined what they label the rare kind

[1966366 in reply to Harrier58]

Hi Harrier, very sorry to hear about your suffering. I hope what I say can be useful for you: the sound hallucinations or musical T that I suffered with went through a whole spectrum of noises from violins to early morning choirs and even Faust! But no bagpipes like Mr Oddie endures. It was nightly for weeks and then it stopped abruptly and I have heard nothing since. Really as simple as that. So fingers crossed this leaves you with something positive to go with. You just need to hang on in there for a while as you really are at a early stage of this dreadful 'journey'. All the best and let us know how you get on.

[Harrier58 in reply to 1966366]

Hi there, thank you for your positive response. Wouldn't that be lovely, I guess we all keep our hope for that. So glad you have found some peace from yours. I too have orchestral and choirs

[1966366 in reply to Harrier58]

I just wish the same would be possible for the other one, so to speak, T. But no such luck! Full head and raging 24/7.

[Harrier58 in reply to 1966366]

Oh no - so sorry it is still raging. I thought when I read initially that you were thru it - I guess that would have been some kind of miracle. I get the full head thing. Hang in there

[1966366 in reply to Harrier58]

Thank you, and you too.

[marigold60]

This is something I had a while back before my tinnitus got bad and had forgotten about. I used to hear what seemed like music and sound from a radio station at night- there definitely wasn't one on! I hadn't realised it could be connected and it wasn't a problem, just interesting

[Yoga62]

Hi, yes I have had music and singing, now have a fog horn in right ear! I also can hear people talking which is bit scary, it all depends how my life is going at the moment and I am sure it’s worse when I am stressedTake care

Heather

[SUS776 in reply to Yoga62]

Ya totally agree think stress makes it was most definitely look forward to relaxing again thanks

[Jdaniel123]

Hello, I think I have heard the music a little bit but not very much. What I have heard though is knocking. A few months ago I would hear like a knock on the door, usually it was two quick knocks. It sounded so real I would get up and check the door to make sure nobody was there. Even after I realized it wasn't real I would still go check because it was so real sounding. Also about that time there were about 4 or 5 times I would hear a whistle. Again, it sounded just like it was real, unbelievably real. So I checked with Dr Google. Found out I had "Exploding Head Syndrome". I had never heard of it in my life. It usually happens right before you fall to sleep which of course wakes you up and makes it hard to go to sleep. Then I read that it is sometimes caused by fluid behind your ears. I told my Dr and got some medicine to drain the fluid behind my ears and it went away. Thank goodness.

[SUS776 in reply to Jdaniel123]

Thanks ya my ear bit sore at the moment putting ear drops into it hopefully settles soon ya even got out of bed to see if someone left there tv on or radio but nothing lol only during the night l hear usual hissing during the day

[rabbits65 in reply to Jdaniel123]

Your post here made me smile . I thought. “ gosh whatever next”. I think to be honest we are all in such a state at times that a good laugh is what we all can do with, to lighten the load !!!! Do you agree ?

[SUS776 in reply to rabbits65]

Defo had really bad spike too but thankful its came down to bearable state life good again lol

[rabbits65 in reply to SUS776]

Pleased your a lot better.I find sometimes that T gets a bit worse if I’m very tired. So then after a rest I can cope again .

[Beesmac]

Hello - I too have Musical Tinnitus or “musical ear syndrome” . I had a bout of Labyrinthitis last Christmas and went almost completely deaf in my right ear. About a week into this I swore I could hear sort of bagpipe music planning Silent Night - my husband even checked outside and of course, no-one there. I woke the next morning and still heard “undefined” music. I have never been through so many different emotions in my life and I would literally give my right arm for silence. My G P had never heard of it and was quite dismissive at first and I do believe the general consensus is there’s no cure so just get on with it. I was told with correct hearing aids this music would probably fade into the background but that hasn’t happened. I am reading all I can but with the sudden and profound hearing loss my brain apparently knows I should be hearing something in that ear so decided as a music lover that is what I should hear. The sad part for me is that I cannot listen to the music I love any more as I have lost the ability to hear higher tones So everything sounds flat and out of tune. I do get bad days but find Diazepam helps but try and not take often. I am hoping that I will come to terms with it but tell myself it could be worse - just wish I could change channel sometimes!! Hope you get on ok x

[SUS776 in reply to Beesmac]

Me too had to take diazepam this week first from march it does get easier you learn to cope with the pattern but when ya experience something new it great anxiety knocked me back but I'm better today thank god when l get bad spike it is awful but you will find your comfort zone sometimes l just have couple of glasses of wine and l sleep like a baby in moderation of course anything that helps xx

[Lynne-H]

I`ve had pulsatile tinnitus plus other noises since 2014 which I have now come to terms with. Mine started after having a virus and suffering hearing loss - moderate. I now wear hearing aids.

Then last November I acquired musical tinnitus - mostly hymns and carols but pretty much anything really. But the weird thing with me is that if I get fed up with `their` choice of music I can change it to something else which helps because listening to one tune all the time must drive you crazy.

I have to some extent come to terms with this too but it does get on my nerves sometimes.

Mostly it is quieter than when it first started.

Lynne

[SUS776 in reply to Lynne-H]

Me too ear infection and virus same journey xx

[Beesmac in reply to Lynne-H]

I remember you saying you could change your music and would do anything to be able to do that. The music I hear is not recognisable as anything - just something that my brain has put together. There are about 4 different pieces and I can’t say I enjoy any of them. When I wake up I have about 6-8 seconds of silence then the noise comes rolling in - sometimes it is so loud and vibrating with rolling drums. It’s true though that we are all in agreement that stress makes everything far worse. I’m not as tolerant as I used to be and the slightest thing can annoy me now. I find it very difficult also to be in a noisy environment. I live in hope that it will fade away but dreading the thought of winter and not being able to get out in the garden!

[Lynne-H in reply to Beesmac]

I know - it`s hard to cope with life and tinnitus at the same time. I don`t like noisy environments either especially as I wear hearing aids.

I have learnt one thing though - that it is possible to live with tinnitus. When it first happened to me with the pulsatile tinnitus I was terrible - despairing and depressed for a long long time and it took me about 12 months before I could see a little light at the end of the tunnel.

Hopefully as time goes on you too will start to feel better about it - I know how hard it is.

Love Lynne xx

[Beesmac in reply to Lynne-H]

Thanks Lynne for your reassuring words - it’s been 9 months now and I’ve accepted I won’t get my hearing back in my right ear. Have worn hearing aids for about 12 years and also had tinnitus which I used to describe “as a whole factory of noises” and it really didn’t bother me but this is something totally different! Have a lovely weekend x

[1966366 in reply to Lynne-H]

Hiya Lynne, most curious to know how you can change the tune?

Kind regards A

[Lynne-H in reply to 1966366]

I can either do it by humming something else or by mentally changing it.

I do love music and I`m one of those people who is always humming some tune or other. I wonder if because I have hearing loss that as with other forms of tinnitus my brain goes searching for noises and all these tunes are stored in my brain somewhere.

I`d be interested to know if anyone else can change their tunes.

[1966366 in reply to Lynne-H]

Thanks for replying, Lynne. Truly remarkable! As the old saying goes: 'you learn something new every day'. Unfortunately I cannot change my "tune" - it's just a full-on cacophony of mind numbing noises, and you're the first person that I have come across who can. Brilliant for you! I wish you all the best x

[Lynne-H in reply to 1966366]

Thank you - all the best to you too.

[sdesheila in reply to Lynne-H]

Hello Lynn- I have enjoyed reading your posts. They are somewhat calming with a positive slant on the malady we all are experiencing. I have found there are times I can turn the channel and times I cannot.I have found it amusing to also name that tune. My companion lives in Canada and after I hum a few bars he and I will research the music I am hearing. Why not try and have humor with this when the only other option

could be depression.

Do you hear the same tune over and over for hours on end?

Once again, It is so nice to find a community of sorts to share

what we are experiencing . My very best to you and all.

[Lynne-H in reply to sdesheila]

Hi sdesheila

Yes it is comforting to be able to share the experience of musical tinnitus with others who understand. I tell non-tinnitus people and they just look at me in amazement and disbelief. Like I`m cracking up or something !!

My music is mainly around my right ear - the one where my hearing loss is worse.

Yes I would hear the same tune for hours if I didn`t change it - a lot of the time it is there but I don`t take any notice and then other times it will get on my nerves. It doesn`t seem to be as loud now as when I first experienced it last November.

The tinnitus I have had since 2014 is pulsatile - I can hear my heart and circulation working. I was told by an ENT consultant that this is due to the fact that I have hearing loss and am picking up the sounds from my carotid artery which apparently is very close to the hearing nerve.

This caused me a lot of distress for a long time but I just accept it now and know it will calm down. Obviously it is worse if I`m stressed.

What does amaze me is the range of different noises that people experience.

Lynne xx

[robtheprint in reply to Lynne-H]

Hi Lynne-H, can you change it to 'Silent Night' ? sorry but just trying to keep a bit of humour to hopefully make me forget my Tinnitus.

[Lynne-H in reply to robtheprint]

Actually Silent Night is one of `their` favourites !!

You need a sense of humour when you have tinnitus - hope it does help you.

Stay strong.

[sdesheila]

I was so happy to see your post regarding musical tinnitus. Or Directional Musical Tinnitus and there are other names as well I have read about. Happy only in the sense someone other than myself has it.

Mine started with me actually believing the music might be coming

from overloaded WiFi. With directional Tinnitus the music sometimes sounds like it’s coming from another room within my home.

It took me months before I accepted

it was actually coming from me. It also seems like it is more prevalent at night. The songs almost always are songs I recognize. So happy once again that you posted. Tinnitus in general can be a lonely path unless one finds other folks who have it as well.