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British Tinnitus Association
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Tinnitus really bad

I don't like to come on here and complain, I hope I rarely do. I don't want to go back to that dreadfully place I was in 18 months ago when my T started so I just try to keep going and keep positive. In the main I think I've done reasonable well considering how bad it is!

Since coming home from holiday 5 weeks ago though, (flight involved), my t has just been horrendous. It's so bad at times I feel as though I'm going to fall over! This morning I was still awake at 4am, just lying in bed with this incessant racket going on in my head.

I'm feeling really tired of having to deal with this and live life just 'coping' on a daily basis.

I do wish someone somewhere would come up with something that could just give us a bit of respite even if marginal or for a short time.

It's just horrendous!!

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Hi Curlew Sorry to hear you are having bad time I have been there I don’t know if you have tried these to help reduce it do you have a bedside Oasis noise unit that plays nature sounds ? have you see your GP to try and give you something like ametripalyn which can help your anxiexty also Ametripalyn helps you Get a good night sleep do you have hearing aids ? like the white noise built in to reduce your Tinnitus other things like keeping busy going for a walk take hobby up all of these will help you I also take Ginko Bilbao which you can buy over the counter it increases the blood flow to your ears also I only drink decaf tea and coffee don’t suffer go back and see your doctor are you registered with your local ENT dept to get support ? I hope this helps let me know how you get on take care also get into a bedtime routine at night like avoiding looking at and devices phones , tablets have you tried meditating if you have a smart phone you can get free apps to do simple easy breathing exercises I find when my Tinnitus is bad listening to the sound of rain is a comfort take care .

David

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Hi CB, Thankyou for your kind advice, there are one or two points I am going to take up and see if they help.

It's learning about people like yourself that is the most helpfull thing.

Take care of yourself and thankyou for your help.

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Hi Crocket bear. I’ve had Tinnitus for 3 years now and have a Cochlear Implant which does mask it a bit. Sort of like a bandaid. You message was timely as last night I was practically awake all night with this raging ringing. I also have a white noise machine beside my bed which helps. I take a mild anti depressant to help me sleep which works intermittently ... but find exercise and hobbies the best thing. Every day is different .... we live in hope that a genius will come up with something 😊

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Hi 1dar your doing the right thing by keeping busy keep it up.

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I hear you Curlew. My tinnitus is horrendous. In one single year it has destroyed my life. Now I’m just left with miserable torture day in day out. Zero joy, zero hope. Living in a world I no longer recognise through the lens of hopeless misery. Everyday I’m left wondering how much more I can take of constant high frequency screeching audible over everything and painful ear ache, before I call it a day. I genuinely have no right to be here anymore living with this. It’s only massive grit and the inbuilt human determination to survive, that is keeping me in this dreadful fight. But it’s no life. I truly wish I had never been born to suffer this. Life has gone from a gift to a curse. There is nothing that rivals this for psychological suffering. Nic seems lovely but the BTA need to toughen up their approch and start to reveal the truly horrendous lives some of us live with this dangling over a precipice day in day out, and push hard for drug treatments etc.

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Thankyou for replying to my post.

Yes T is a difficult condition to live with and people who do not have it badly have no understanding at all how debilitating it is.

However, unfortunately, being positive and carrying on is all we have at the moment.

Whenever I have occasions when it gets me down I think of all the things I have in life that are far more important to me than T and luckily at the moment I have a number of those things in lovely grandchildren, family and friends.

No matter how bad it gets, I am sure you can think if things that are important to you and try very hard to put it all into perspective. It's very hard and takes determination, but it is more than possible.

I hope you are soon feeling a little better and find something that gives you a bit of relief, at least until there is some help for us out there!!!

Take care, C

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Thanks Curlew. I really admire people like yourselves who manage to stay positive. I really just despair that I got this in my 30’s and now watching all my friends enjoying their lives, their jobs, their kids, etc while i suffer this invisible torment and lose everything I worked for, is just too much to bear. It just feels like a hopeless curse designed to push some of us very hard toward suicide.

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K80, When my T started I was in a very bad way. I know I'm older than you and yes, I have often said how I really feel for younger people who have it, I do think though that the number of younger people who struggle with it will be a reason why eventually something will come forward as a means of giving us relief.

I was referred to our audiology dept. At our local hospital and luckily for me the lady I saw took T very seriously and was excellent. I asked her why she thinks some people manage to deal with it and others don't. Her answer was definite and simple. She said 'personality' At the time I couldn't understand this, but now I absolutely do.

My mantra in the beginning was 'fake it till you make it' . Eventually this does start to make it seem easier.

You have to find and concentrate on the things that you enjoy and eventually T will move itself to the back seat of your life. You will probably always hear it, like me, but it will be less bothersome to you.

I know I have had a little moan yesterday, rare for me I hope, but today I feel more positive already. This becomes possible because I know I can and do cope and when we have occasional times when it gets us down we do get through those times.

You are a young man and there are lots of young people out there living with T and getting on with there lives.

You can do it too.

You are far more valuable as a person than your T is annoying, keep that thought in mind.

Take care, C

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It's not fair, I'm sorry, some of us don't have joys in life, we just trudge on relentless, I've lost jobs through having this and at times feel like I'll loose everything, your not alone 😘

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Thanks Emu. That’s what if feels like.....trudging on, with all the joy of life lost to this unstoppable noise. I know I’m not the only one suffering. I feel for everyone like yourself too.

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I'm not depressed or anxious , just in pain and very drained a lot of the time .

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I totally agree with you K80 about pushing hard for treatments. I'm afraid I am becoming sceptical about what actually is going on re research though.

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Hello Knoll80 sorry you are in a bad place and you sound angry and frustated I think the BTA is open and honest I have found and they will offer free and are supportive I think getting angry will not help you the key to your Tinnitus is managing it and staying Positive I know that is hard when it is screaming we have all been in your place and endured the horrendous condition but as someone advised me a long time ago don’t let your tinnitus rule your life firstly you have to except it and then manage it only then will you get any relief and feel happier it is not a quick fix but as with any condition you have to help yourself to adapt and try and live your life see my reply to curlew on the tips I gave him you will get some wonderful support from this site but staying negative will only make it worse I hope this helps and it will get easier .

David

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Please don't be hard on yourself - too often those who don't experience tinnitus think we can just switch off from it. I have had a really good few days, am certainly not scared or anxious of my tinnitus but it is so loud no sound machine or radio on full blast touches it as it's louder than those who haven't had it this loud don't understand. So please don't blame yourself.

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There’s the truth. I hear people talking about spikes and low days and I think I’m dealing with a completely different condition. Mine is horrendous 24/7.

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Hi. Whilst I agree that keeping positive , will be helpful and can make a huge difference to a lot of people, I genuinely believe that for others , including myself , tinnitus is a physiological condition. I have met challenge after challenge e.g going from working ful time to having no income at all but trying to keep proactive by volunteering for a charity I used to receive referrals from and doing a lot for Supporters Trust , seeing my parents more regularly and telling myself that when my savings run out , at least I can sell my house ; I do not sit and think about my tinnitus - I try and get on as best I can . But it gets worse every day and so I am of the belief that there are different causes and experiences of tinnitus and that unfortunately for some , it is extremely tricky . Some days I can't hear people very well - people I am enjoying having a good time with.

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Hi L, yes, T seems to have so many different faces!

Unfortunately even though we have T we still have 'life' to deal with.It is not quite a year since I lost my lovely mother. You might remember my post. Then there are all the trials and tribulations of life, of which, believe me I have had my share too. I suppose it's just that I like to try and put the bad things behind me and concentrate on the good things in life.

You sound as though you are doing a good job L. Your posts were some of the ones I liked to read, amongst others of course😁👍, when I first came on here. You always have a positive word to say to others and that in the end is what is so helpfull.

Keep it up.

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I think I’m the same. If you met me you really wouldn’t guess I was suffering so much. I only let that out o here. I try and be really positive and keep busy. But nothing seems to dent my T. It’s just relentless.

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Mine is loud and relentless K80, I have bad days and ok days.

Believe me it will become easier but you will have to relax a bit and sort of 'care less' about it.

I know it's annoying to keep hearing this, I didn't understand it first I thought people were talking nonsense, but I now know they are right.

I will always hear my T above everything else I do, but it doesn't always bother me as much as it used to. I can still have difficult times, but I know I am able to overcome them now.

You will get to this stage, it just can't be forced and it takes time.

Look after yourself and don't listen to depressing stories re T. Nearly everyone with T no matter how loud learns to live with it and live well.

There are many on here who will tell you so, they are the ones to listen to.

Take care.C

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Thanks Curlew. I really hope so. It seems at times like we’ve been set this impossible task of getting used to something so obnoxious. But as you said others have done it.....Still a decent treatment wouldn’t go amiss!

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Don't misunderstand me, we are all waiting for that decent treatment to arrive. 😂👍

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I know I shouldn’t but I kind of live for that day now. Everything else seems trivial and unimportant. I just want my old friend silence back again. 😓

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Sounds like you need the hearing regeneration treatments Lindsay which ‘should’ arrive in the next 5 years. These might banish T for good once the full range of hearing is restored. Let’s just hope eh.

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Hang on in there Curlew we are all in the same boat as you looking for a safe haven to berth the boat and get on with our lives. Best wishes!

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Hi Curlew I am sorry you are having a bad time . I have pulsatile t in one ear and constant noise in both ears which is all very high screeching. My only salvation is by taking Amitriptyline 10mg every night. It helps me sleep and cope don’t think l would survive without it. Hope this helps . Thinking of you

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Thanks V, yes I take an amitriptyline very occasionally. Took one last night, feel better this morning. They definitely seem to help when I need it.

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Please try not to worry too much :) Tinnitus is a bit like a roller coaster, so many highs and lows! I was having such a terrible time with it last week after what I think must have been a spike, and now it is slowly slowly getting back to normal. Keep yourself nice and busy. I also can't recommend magnesium enough to help with anxiety, I take one every night before bed. I promise you, this time in a few days/week/couple of weeks you will be feeling oh so much better. This feeling is only temporary... I've had some of my lowest lows with tinnitus but I've always come out the other side. A lovely walk always helps too :)

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I understand why you say that but sadly some people , such as myself , have extremely loud tinnitus which does not drop down in volume so for some people there are genuinely no good times.

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Hi Curlew

I’m sorry to hear that your t is really bad at the moment . I think that the worst thing about this disease is the fact that no body else can hear the noise in your head and so find it hard to understand the torment it can unleash on you. I think that for me this increased my anxiety and amplified the symptoms enormously. At least if someone can see an injury they have an idea of the suffering you are experiencing. I found the amytriptoline a massive help at night with sleeping. I take 10mg at 6 pm and find that by bedtime I’m ready for sleep and usually get 6-8 hours sleep. My ent told me to try nortriptline as in some cases if you take it at night it can reduce the noise during the day. For me I needed the sleep so I stuck with my original. But might be something for you to ask your gp about. I also do a lot of body based therapies, like yoga and meditation and these have helped me cope. Hope there’s some advice here that will help you a bit. Stay strong

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Thankyou S, I've heard people talk about nortrypyiline. Do you know the difference between that and amitripyline? I really hate taking medication as that is what caused it in the first place.

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Hi

I can only tell you that amitriptline has a more sedative effect. My gp told me that ent would always prescribe nortriptline as for some people it can help with the level of t during the day. I can only tell you for me the amitriptline was a great benefit, it’s not addictive so you can just take it to get over this rough patch, and the dose is minimal. Please let me know if it help you too, hopefully it will

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Nortripyline is similar to amitriptaline - NHS prefer to try amitriptaline first and nortripyline if amitriptaline doesn't work ( flippin hec - lot of long spelling first early Saturday morning ). That's my experience / what I've been told ( I'm not a medical expert )

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I agree. No one else can ever know so it's a very lonely experience.

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Terrific thread this one to illustrate to anyone who cares to read it the torture we all face in dealing with this condition. It's just a shame that in the main, it's only fellow sufferers who read it. The BTA are in a difficult position I feel - they do share stories of both suffering and also beating the condition. Nic tells me my own story is likely to be in the next issue of Quiet - woohoo!!

As for pushing for drug treatments, that's all well & good, but if there aren't any treatments which have been found or formulated, what can they do? As an organisation, I get the impression they are fairly small and not exactly awash with funds. Scientific research is extremely expensive and takes a long time - this is why drug companies charge fortunes for medicines that have been found to be effective for whatever condition - they need to balance the books and cover the R&D costs they've incurred in getting to that point.

My own opinion is that the BTA should leave the scientific side to those institutions / organisations with the funding to do it. The BTA should be focussing IMHO on supporting current sufferers and on prevention / awareness work, to stop people ending up in the miserable position we all find ourselves in. I made this point to David Stockdale, the Chief Exec of the BTA, when he came to our recent support group meeting, but it rather fell on deaf ears - he was talking about the association doing their own scientific research to push things along, which I think is a pointless folly. It would be like me saying I'm going to sort out my local council's budget deficit using my own money - the available funds aren't even going to scratch the surface of what would be required.

In response to Curly - can't help calling you that, sorry - I think you know all you can do when you're going through these unbearable periods is just to grit your teeth and bear it. It seems impossible, but you know it can be done, because you've done it before. You mentioned you're 18mths in to your struggles with Mr T, so hopefully by now you will have had some days, possibly even weeks, where you've been able to cope with it. We get a lot of new sufferers on this forum, but not many people who've had it for donkey's years - there are some of the latter group, but not loads. That means, I hope, that they've found a way of managing it and it's not causing them as much grief anymore - ask CrocketBear.

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Excellent post Rb1, Yes, because I've sort of 'habituated' for want of a better word to my T I just get on with it perhaps just moaning about it a bit more than usual!!

What we do learn is that they are just dips in the road and we soon get to the top of the hill again.

I'll look forward to reading your story in the Quiet magazine.

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Hey there Curlew

I feel for you totally.

My tinnitus has gone through the fing roof in the last two weeks with severe vertigo.ok so being on a plane can of course cause ear pressure.

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You could try open your mouth and swallow.yer bloody difficult compared to with mouth closed.

That can release the pressure you’ve in your ears.

Just a thought hey

Good luck

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Hello Curlew,

Every one of us on here is rooting for you xx. Im doing ok for the minute still got all my "issues" but think my brain is slowly getting bored with them. Thing I have noticed is that tiredness can undo all of that in a flash...its frightening how desperate things become when you havent slept. You WILL get back to your normal when you can get back to sleeping again...if the Amitrip works for you and its seems to be then keep using it. Anxiety , irritation, depression are all wrapped up in a bundle with our T with every part of it being amplified when were run down. You got there before and you will again Mrs...and please dont ever apologise for complaining, if we cant do it here amongst "our own" where can we? xxx

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Thanks S, yes it doesn't help when you start getting tired. I don't think winter helps either I find mine awful on an evening sitting inside watching tv.

Oh well, onwards and upwards.

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Hijack the wee ones for a sleep over if you can...fun, frolicks and faffing about...far more entertaining than the telly xx

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Love it S, we have lots of fun, fro licks and faffing about 😂😂 On a serious note that is the thing that got me through in the initial stages.

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Yip, me too...all joking aside kids and furries should be available on the NHS...if your at a loose end and not already, watch care home for 4 year olds on TV....its both an eye opener and a tear jerker. Really embodies what us humans are all about...so humbling yet uplifting. Have a restful night x

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Love itS and you are so right 😁

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Hi,

I'm having same problem as you, I went on holiday 10 weeks ago and since returning my tinnitus has been through the roof. I don't think I'll take the chance with flying again, it really isn't worth it.

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I know I've flown 3 times since having T and have been told it really doesn't have any effect on your T. It's definitely been worse after this last flight though. It's a bit worrying re the effects of constant flying,but at the same time I'm reluctant to let T call the shots!!

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Hi Curlew,

It's good therapy to have a moan from time to time and by God, we tinnitus sufferers certainly have a lot to moan about! My t settled down for a few weeks but lately, it has been spiking like mad and the past few days have been horrendous. One thing I use regularly when it's bad, is a 15 minute sound clip I found on Y/Tube. My tinnitus is high frequency and this clip at 800hz masks it out. I listen to it on my headphones and adjust the volume to just under the t volume and it gives me some relief from the constant piercing whine and hissing. I was on 10mg Amitrip for months which helped me sleep but I felt I needed a stronger dose and asked my GP if it was safe to double it, so now I am on 20mg a day which has helped. I hope you find some peace soon. Best wishes.

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Hi J, yes I'm finding amatriptyline is helping at the moment. I don't take them regularly but always keep a packet in case I need one. As my GP said, an insurance policy.

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hi curlew i know exacty how you feel mines loud 99% of the time. they say dont stop the things you like doing so as to take your mind off it but i WAS a musician so how can i carry on??????? some help would give me my life back!!!!!!!

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HelloD, Yes being a musician and developing T is a horrible situation, sadly far too common though.

I have read stories of a few musicians though who seem to be able to go back to music in some way. I don't know how, maybe Nic or your Dr or audiologist if you have one could help you there.

Having T is bad enough, but when it robs you of life's interests it robs you of yourself!.

Take care.C

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Hi drumscraw,

I’ve wondered how T would affect the ability of musicians. I’m a painter and find it dosen’t help my painting, My painting is so far helping me. I can imagine the struggle.

My brother founded a fife and drum Corp for disadvantaged teens. He’s now faced with the same concern.

My T is ramping up fast in the past 12 hours. I’ve never had it so loud and the whooshing was pretty pronounce this morning.

I’m glad to have this forum to read the experience of others as I go through these debilitating changes. It’s something the doctors can’t offer.

I’m determined to find a solution. I believe there are answers. we just need real applied research, much of which could be accomplished by analyzing the data already available.

Meanwhile, a walk in nature, some place beautiful.

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Hi Curlew,

I've had T for 20 years. It wasn't the crazy loud type until September 2. My neurologist ordered a brain scan that put my symptoms through the roof. It also gave me hyperacusis and base thumping, vertigo etc.

Having had dealt with T for years, I'd learned a few tricks. They've come in handy. I saw an audiologist 20 years ago and his advice is still the best I've heard. Think of it as your friend. Listen to soft music. Keep,your mind focused on anything but your little friend. Kind of like being too busy to give him the attention he wants. Sometimes he interrupts what I'm doing and it's time for a party. I just pretend I'm drunk and eventually drift back into some form of escapism.

Your brain is fabricating the sound and the more you pay attention to it, the louder it gets. It actually has no volume or Decible level at all. It's not real and that's why people who don't have it look at you like a dear caught in the headlights, Doctors included.

When I start feeling sorry for myself, I think of my brother in law who has endured lucemia and graft versus hoast disease from the marrow transplant. I've definitely got it better than him and he's happy to have made it through and have a second chance. He's anything but comfortable but he's still around to watch his children, then grand children grow.

You and your brain will find a way, and you will get tired of chasing your little friend around your brain. At least that's what I expect will happen to me for a second time but at much higher level this time.

I'm an artist. I immerse into my work and find while in the intense state of focus called "flow state", I'm free from my awareness of it for the most part.

You just need something really important to do. Something you can feel really passionate about. If you don't have any hobbies, maybe a good binge on a suspenseful TV series.

And then there is always the respit a good shower offers. The acoustics of the water seem to allow an escape and the warmth relaxes me.

I'm choosing to think of this as an opportunity. Sounds crazy and it probably is, but it gives me resolve to approach everything I do as now being more important. I've got to get it right this time regardless of what faculties I've lost. Most of the great minds had some kind of disability that challenged them.

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What a super postW1212. You are so right in all respects.

Take care.C

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