British Tinnitus Association
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Severe tinnitus

I Have 2 noises. Firstly a very very loud high pitched hissing /screaming noise that’s 24/7. It never ever goes away and can’t be masked by other sound

Worse than that though is the low pitched humming sound that had become so loud now it’s ruining my life This is on top of the high pitched hiss. It moves across my head from being inside my head on one side to shifting to directly in my ear on opposite side

I can’t enjoy the peace and quiet of reading a book or walking in the countryside anymore

I can’t even relax in my own bed in peace anymore it’s a constant torture and it’s no way to live

People don’t know how severe tinnitus is and how it can destroy you and take away so much pleasure in life

I would have my auditory nerves cut and be totally deaf but if the noises are coming from inside my head would this actually work?

Seen ENT specialist who said I may have otosclerosis but he wouldn’t do anything JUST for tinnitus as the hearing reduction I have (on one side)isn’t bad enough. When he said”just for tinnitus “ I realised then that no one can imagine this torture that this condition is and how it can break you and spoil your life

I have got to this point over about 3 years have tried tinnitus maskers, playing music when I want to sleep leaving tv on etc.

I used to love peace and quiet and not having any noise. iv been robbed of ways to relax

I live alone and have a daughter who lives abroad I don’t tell anyone the hell I live with as I don’t think anyone would get it

This is no way to live but there’s nothing I can do about it feels like no options left for me. tinnitus has finally broken me

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I really feel for you, mine is bad at the moment. Had it for 35 years, but it’s not always unbearable. When I’ve habituated in the past it’s almost as if it’s there, but my brain won’t listen it. Does that make sense!

I think overtime it is possible to just lock it away in a box, but every now and then it pops out to let you know it’s there and so the process of habituation has to start again.

Has anyone suggested hearing aids as with only a small loss of hearing tinnitus will seem louder.

Just know you’re not alone with this, message any time if you need support xx

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Thankyou for replying

If it was just the high pitched screaming noise Then as bad as that is could deal with it, I can habituate to that. It’s horrendous but I can try to live with it

It’s the low pitched very loud droning noise on top of that which is too difficult to live with. It’s inside my head, it’s shifts around my head and echoes into my ears. It’s like having a loud generator inside my head

Tinnitus masker hearing aid does nothing. It just adds another noise to the 2 I’m already hearing

I never used to appreciate the sound of silence and how beautiful and relaxing it was, now I long for it but have accepted its long gone

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Hi Nicu09, I have slight hearing loss in my right ear. I was given a hearing aid and I would say that is the main reason why I have (mostly) habituated to my tinnitus. You are not alone with this intruder - is there a support group near to you. I can highly recommend joining the BTA and reading through their website. You could also phone their help desk. It will get better in time. I never thought mine would, but it has.

Love

Angela xx

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Will it really get better, it’s just going worse and worse and louder and louder. Even the tv doesn’t block it out

Feel like I want to rip my head off. It’s destroying me. I try really really hard to carry on but it’s getting harder the worse the noises get

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Yes it will Nicu. This is my story; like you I was the most calm and relaxed person - don't have a temper; hate shouting; loved to sit in silence and read; love Radio 4 and hate loud music, preferring poetry evenings. So, no, my personality type should not have tinnitus. Never had depression or anxiety, despite whatever life threw at me.

Mine came after a major operation (stress of it?) It was irritating but it was only a noise in my right ear, nothing more. But ....... 2 months later I caught a virus which gave me a sore throat from hell ...... then my own personal hell started. The tinnitus was a thumping in my head, which moved all around my head, coupled with intense pain. Nothing would help - I had to try to sleep sitting up in bed and the thumping in my head would also move down my back to my legs. This went on for weeks and weeks. This cannot possibly be tinnitus, I thought, that was a ringing in the ear that only heavy metal musicians got!

The GP was useless, as was the ENT consultant (paid privately as I was utterly desperate). The only helpful person was the hospital audiologist who literally saved my life. I had begged my partner to take me to the Dignitas clinic as I couldn't live with this pain. I could not even wash my hair in the shower as that made the tinnitus pain even worse. I lost 2 stones in weight. My life was finished, over, and I didn't want to carry on.

Now for the positives. My audiologist said that I should return to my GP for sleeping pills and anti-anxiety tablets. I was given Zopiclone and I then began to sleep, bliss, until I woke up. Mirtazapine 30mg was prescribed to help with the anxiety. I was found to have a slight hearing loss in one ear (which surprised me!) so I was given a hearing aid and a white noise masker for the other ear. The hearing aids made not one iota of difference for weeks and I was still feeling negative, believing that life would not be worth living like this. I also found the BTA and their forum; thankfully realising that I was not alone in this battle. I joined the BTA and bought a sound oasis machine, which I have had on rainfall from that day to this.

All this is exactly 3 years ago and I continued to have extreme head pain for another 3 months. By the June the pain subsided, my head wasn't thumping and on rare occasions I realised that I had not heard my tinnitus. From thereon it continued to improve. It takes time and there are good and bad days. Like you, I find the head tinnitus the most difficult to deal with. I took the sleeping pills for about 3 months and I was weaned off the Mirtazapine after 12 months or so.

Until there is a cure (and heaven knows with all the medical advances why is tinnitus is at the back of the queue for a cure to be found), my T will always be my black cloud.

Ps I went to one of the BTA information days where I was able to meet up with a fellow forum member, and I found the day to be very helpful and supportive.

I can hear my tinnitus today, but it is not bothering me, mainly because I am busy with ironing, catching up with friends' emails etc etc

Be strong Nicu, it will get better for you. There are so many other folk out there who are all in this tinnitus boat!

Love

Angela xx

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Hi Nicu09

I sympathise with you completely and like you only briefly touch on the subject of my hearing loss and Tinnitus to a handful of friends...No point is there no one can begin to understand unless experianced same themselves...

When I was a child and studied music Beethoven was my idol and I can remember reading that as he became completely deaf he still carried on composing music ..This really upset me and sad how he must have suffered...He had always suffered from Tinnus apparently but fate played a cruel trick like it has to me and even after becoming stone deaf the Tinnitus continued...

Ironically I now have MES and can hear my favourite Beethoven classical pieces playing over and over again in my head...

Carol.

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Thankyou for replying

It is good to know I’m not alone although I wouldn’t wish this on anyone

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You are not alone. I am also here and in distress with loud tinnitus. I think we make ourselves worse by being unable to not react to it. I know that is impossible unless you have incredible willpower and strength if resolve which i dont yet have. Maybe this Levo Therapy could help you at The Tinnitus Clinic. Its extremely expensive.

I offer my heartfelt kindness to you Nicu09 and will pray you and all of us witg Tinnitus get some solace somewhere.

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Great sentiment, hang in there buddy!

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Over the years mine has driven me to despair, but each time I somehow get through it. The brain learns not to see the noise as a threat and then you can habituate. Takes me about 3 months each time mine flares up. Can’t really explain how it happens, but it does. You will improve.

Mine is bad tonight, hearing it over the TV, so I’m off to bed. I’m lucky it never stops me sleeping, just hate waking knowing I’ve got to spend the whole day with it. But it will not be a problem to me soon.

Have you ever seen a hearing therapist? I see one on the NHS and I would recommend you seeing one if you can. Insist on another hearing test, any loss however small will be helped by a hearing aid, which in turn will help the tinnitus. Get a referral from your GP. Go tomorrow, do not let this get even more on top of you.

Thinking of you, you’re definitely not alone.

Ingrid xx

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Hi Nicu,

Sorry you're having such a hard time of it right now but Buddie is spot on with her advice. Go and see your GP again as soon as you can manage. I have a very high pitched hissing whine mainly on the right side that is difficult to mask and when it first started, I felt like smashing my head off a wall. However, my GP was very understanding and she managed to get me an early referral. I was diagnosed with age related hearing loss and was fitted with twin hearing aids which have helped a lot. I was also prescribed a low dose of Amitriptyline which is an anti depressant but also helps me sleep so ask you GP about getting some medication as well. I know it's very very difficult but try and keep calm as getting yourself into a state just makes the tinnitus worse. Things will get better for you eventually so keep your chin up. You have our support on the forum and please let us know how you get on at the doctors. Best wishes.

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Hello and welcome to the British Tinnitus Association forum. Do feel free to ask any questions, I hope that you find this a helpful and supportive place to help you manage your tinnitus.

Tinnitus does generally get better over time. And even if it doesn’t go away completely, it can get to a level where it isn’t intrusive, and it isn't noticeable - in the same way you probably don’t really notice traffic noise when you walk down the street.

The time tinnitus takes to disappear or reduce in intensity varies from person to person, but there are some tips and techniques you can do to help. These are the things we at the BTA generally recommend:

Information - you will probably feel better when you find out more about the condition, that it is very common and that you are not alone.

Counselling - techniques such as Cognitive Behavioural Therapy (CBT) can be helpful, either as a standalone therapy or combined with sound therapy.

Correcting any hearing loss - if your tinnitus is accompanied by any hearing loss, then trying to correct this loss with hearing aids is often very helpful. Do make sure that these are adjusted correctly, and that they are worn – they do not work if they are kept in a drawer!

Sound therapy - if the noises seem louder at quiet times, particularly during the night, it may help to have some environmental or natural sound from a CD, a sound generator, or even a fan or ticking clock in the background. Some people use in-ear sound generators.

Relaxation - learning to relax is probably one of the most useful things you can do to help yourself. Those who practice relaxation techniques say they reduce the loudness of their tinnitus and helps them become indifferent to it. Yoga and tai chi can also help.

Mindfulness is showing some very promising results after recent clinical trials, so that is something else you might like to try.

I would say that none of these solutions is an "instant" fix - they take time and perseverance. Some people do expect tinnitus to subside after one session of breathing exercises, for example, and that just isn't the case.

There is no drug or medication which directly helps tinnitus, so we do not recommend any.

Cutting the auditory nerve won't work either - it will just mean you lose your hearing. Tinnitus is generated in the brain and people who are born deaf can still experience it.

There’s a lot of good information on our website tinnitus.org.uk - try to avoid sites which promise “tinnitus miracles” or “tinnitus cures” as there’s no such panacea - but with time, you will learn to manage your tinnitus well.

We have a free tinnitus management e-programme as well takeontinnitus.co.uk which you may like to try.

Our Helpline 0800 018 0527 (Monday-Friday 9am-5pm) (outside the UK you can call +44 (0)114 250 9922) can also answer your questions and give you support.

Warmest wishes

Nic (BTA Communications Manager and Forum Administrator)

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I only have it 3 weeks but really struggling at the moment.only had I one ear but think I have it in both now.1 hour sleep last night.i can't see anyway out.had wax removed 1 week today and doctor says it will take time for ears to settle again

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Excellent information there Nic. It is always good to know that the BTA is there for us. Angela xx

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Thank you to all of you who have taken the time to reply, as Iv said it does help knowing there are others out there

I don’t discuss it with a soul because it sounds so trivial and nobody can possibly know the devastating and debilitating effect it has on your life

I am grateful for all the suggestions from Nic but I have tried most of them unfortunately

Iv been given a hearing aid but it neither improves my hearing or reduces the tinnitus. Although my hearing is slightly reduced on one side I can still hear perfectly well without a hearing aid and when Iv tried it I hear just hear the same. I presume this is because I’m hearing ok anyway

I have another aid that plays white noise but it doesn’t mask the head noises at all so I’m just throwing another sound in there on top of what Iv already got

Relaxation techniques I find impossible due to the loud droning that shifts around my head and unexpectedly jumps up and down in volume

I do use sound therapy at night and try to focus on that rather than the droning but it doesn’t mask it

I always feel angry when people suggest it s mental health related and that CBT or anti anxiety medication may help. I was never an anxious person I was probably the most laid back person you could meet. Health issues would never stress me out and I never suffered depression. I have a good job in a senior position, I was always confident and self assured. and can absolutely categorically state that that this is not my mind state that’s causing it or making it worse it’s a real physical condition and no amount of anti depressants or CBT is going to make it go away yes, the tinnitus creates negative feelings, feelings of anger, desperation and anxiety, but it’s the tinnitus that causes it not the other way around. my tinnitus has a mind of its own I’m not in control of it in anyway and my feelings do not make it better or worse no matter how low I’m feeling the tinnitus doesn’t get worse because of that, it’s already worse and it does whatever it wants inside my head regardless of my mindset

I really don’t want to sound so negative to all the suggestions of help because I truly appreciate you people taking the time to offer support when a lot of you are suffering the same. I’m just saying how I feel

I’m open to any suggestions of help, I really am but just feel Iv run out of options

I just pray that it goes away

The only thing I thought that may help slightly is if there was like conferences or something where stories could be heard from sufferers and experiences shared a bit like this forum but actually in person in a large arena, where speakers would give talk???? Is this an option???

Anyway once again thankyou for all the replies, I really really struggled to get through yesterday, but I’m still here today so I guess I did and that’s in part down to your replies

Tinnitus robs us of the simplest but most precious things in life that Iv prieviously taken for granted I just pray that one day I will relax in my garden again and hear nothing but the birds tweeting or a distant lawnmower or I can lie in my bed and hear nothing but the utter joy that silence brings

Perhaps in the future research will discover a cure, who knows

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Hi, i don’t know what to say other than try and keep calm. The more you stress the worse it seems to get. Really hard to do I know 😡 Been there several times before when mine’s been horrendous, but always come out the other end.

I don’t think mine’s related to stress either as I'm a really chilled person even though I’m going through breast cancer treatment at the moment. I checked the medication I take and there’s no mention of increased tinnitus otherwise I probably wouldn’t take it.

I’ve been to the gym this morning without my hearing aids in and I couldn’t even hear the music, so I’m guessing I need my hearing tested which is next week.

I long for some relief at the moment. I’m sick of trying to keep busy! I’m so lucky tho as it doesn’t affect my sleep.

I’ve read a couple of posts that have said there is a drug that helps with the head noise (not the ear noise) don’t know if anyone can enlighten you on that.

Take care and you’re not alone xx

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Thank you so much buddie

I think for me the main problem is the head noises, the low pitch very loud droning noise. It’s inside my head echoing all around it shifts up and down in volume then suddenly shifts into my right ear then back into my head. This is on top of the actual tinnitus I suffer which is a constant very very high pitched hiss that is too loud to be masked by music or tv

If I could only get rid of the droning head noise I could start to habituate to the hissing. The droning or loud hum is so loud it frightens me and is so unpredictable in when it will shift around my head or suddenly spike in volume

The hissing is loud and constant but doesn’t shift around my head and is directly in my ears rather than inside my brain. It’s very severe but combined with the head noise makes it unbearable

I’m so grateful for your reply particularly when you are going through cancer treatment, It should be you receiving the support not me. Good luck with the treatment you sound like a a very brave determined person x

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Bless you I’m fine, we’ll apart from the bloody t! xx

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hi, I'm the same as you are it s horrible , cant do nothing about it feel like your on your own

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I’m sorry your suffering. Tinnitus is a terrible ailment and sometimes it seems unbearable. I find that mine gets much worse in times of stress ( when I really need peace and quiet!). People don’t get it either because it’s internal. Hearing specialists are useless even though they claim otherwise. I resent the fact that I cannot ever “hear” silence. The only bit of information I have that helps me cope is to believe that I can actually hear “the music of the Spheres” which is an ancient philosophical concept.

en.m.wikipedia.org/wiki/Mus...

Know that you are not alone.

XO

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Thankyou Abby. Stress doesn’t actually make my tinnitus worse, it’s the tinnitus that makes my stress worse. I know exactly what you mean by craving the beauty of silence. I find this very difficult to accept too.

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Hello Nicu sorry you are struggling. I know exactly how you feel I have pulsatile tinnitus which is a loud squealing noise in tune with my pulse. It seems to be getting louder and feels like it's in the back of my head. Everyone on here says it will get better so we have to hope and pray it does. Keep strong and take care x

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Cut down salt 70% in food

Drink lot of water

Work out 1 hour daily

No smoking.... if any .

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Has this worked for you? At the moment mine is horrendous and exercise definitely makes it worse. I’ve cut down on salt and trying clean eating, nothing processed. I’ll try anything at the moment. Sometimes it even feels like my nose is buzzing!

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It's worked for me ......my T is under control.

My gym really helps me, when I start workout in gym my tinnitus peaks up and after I finish workout automatically my T reduces to vry low pitch .

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Very good advice ! I also avoid salt I know if i have McDonalds (full of salt) I will end up with car alarm in my head right after . Can it be coincidence ? Salted Crisps gives me 3 sec spikes and loudest tinnitus .

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Try to avoid few foods which triggers T , such high protien foods increase T.

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I guess we all need to find what works best for us. I’m avoiding the gym for a couple of weeks to see what happens. Interesting how it affects us all so differently!

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T does affect people in different ways but there are many common factors too.

I’ve not heard anyone say negative physical or negative mental stress has made their T better.

Physical exercise is still very good for us as it lifts mood which helps us to to cope with the T (even if it makes it louder temporarily due to the higher blood pressure). Even some forms of positive mental stresss can help us to focus away from the T and can lift mood (e.g games, problem solving).

I’ve heard very few people say they benefit from focussing on their T, or listening to see if it’s still there. Why focus on something we don’t like?

When you talk to people who have moved on from T, they usually say something like “Oh that, I forgot I had that until you reminded me”. The brain given time, is very good at adapting to the point you don’t hear it unless you chose to listen for it. While we are obsessed with it, and the brain still sees it as a threat, it struggles to rewire itself.

Another very common thing is the development of new or different T sounds. In the early days this happened to me too. Several higher pitched sounds and one much lower pitch. I realised that so long as I didn’t allow my negative emotions to latch onto them, they just faded away.

Even these days, very occasionally I will hear a blast of T. But so long as I stick to the plan and not give it attention by getting on with something constructive, it still fades away.

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Hi, Nicu09,

Like the others I sympathize and am sorry you're having a hard time. I know it's difficult but try to remain positive and tell yourself you will get through this. I try and take each day as it comes and if it's bad today then, maybe, tomorrow it will be a little better. Maybe you could try something mentally challenging like attempting a complicated puzzle that you really have to concentrate on. Just remember, you are not alone.

Respectfully submitted,

Keoni

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Stay positive lad I’ve got the same. My life is hell sometimes but I won’t let this fxxkIng shit beat me no I just won’t. stay calm and we’ll make it.

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How long have you had the t my t is the same content in my head drives you mad can't even have a drink anymore makes it worse don't go out music to loud but do you know what am going out getting out of this hell hole

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Hi there please dont give up. Just to let you know my tinnitus is very simillar to yours ! I do have two noises one is humming metalic other is high pitched noise in day time it sounds like a one noise but when i put my head on pillow I can hear 2 sepparate noises. Yes my tinnitus was shifting like yours from side to side ear to ear , middle of the head , whole head its so difficult to describe and frustraiting when you try to sleep. Now its mostly in my left ear. Did you thought about wearable tinnitus masker ? Its like a hearing aid but with a white noise that you can control volume. It does help to distract you from tinnitus and its practical.

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