Good Days & Bad: Hello, Even now I’m... - British Tinnitus ...

British Tinnitus Association

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Good Days & Bad

Maxi80
Maxi80

Hello,

Even now I’m noticing a trend. Good’ish says where I can cope and think positively and wretched days where I just want to surrender. Anybody else find this?

On my bad days I always have the same thought ‘life might be another 40 years so how the hell will I be able to cope with this eveyday.’ If life was only another year it might not be so daunting. It all seems so final.

Thanks again

29 Replies

Yes I totally agree with you , I am relatively new to tinnitus about 10 months I’ve had mine . It’s terrible and the build up of pressure on my head feels sometimes like I might explode . I don’t know what else we can do . I think the private clinics maybe closed due to Covid. I’m hoping to find a good counsellor .Let’s hope you and I find some relief soon. We have to try and have positivity to survive this dam thing

deltec
deltec in reply to rabbits65

cbt try debbie featherstone im doing the course and it works i no that iv had very bad tinnitus

BTAPat
BTAPatAdministrator

Hi Maxi

I think it's fair to say that most people with tinnitus have days like this - when it seems like tinnitus is unlikely to improve and that the road ahead seems incredibly daunting.

What I would ask you to think about is that when you have times like this that you are keenly aware of the good-ish days that you do have. It's crucial to be aware that tinnitus isn't just a downward cycle and that it can be a condition which you can cope with.

The process of getting acclimated to tinnitus isn't a straightforward one and it's worth being mindful that, if anybody reading this reply is new to tinnitus, you are trying to manage it amidst a pandemic, societal turmoil and a time of year which makes many of us struggle with our mood.

I hope that you have more good days soon.

Maxi80
Maxi80 in reply to BTAPat

Thanks @BTAPat It’s nice having somebody to listen.

I just feel so pathetic that a repetitive whoosh can bring me to my knees 😕

Lynne-H
Lynne-H in reply to Maxi80

You are not pathetic Maxi80.

Tinnitus noises are very intrusive and when I first developed tinnitus six years ago I remember I kept saying to my husband "I can`t live with this for the rest of my life" but here I am six years later and I have my life back even though I now have a couple more noises. By the way it didn`t take me six years to get to this point !!

Tinnitus is no longer the most important thing in my life.

Keep plodding on day to day and you will get there.

Lynne

Maxi80
Maxi80 in reply to Lynne-H

Hey @Lynne-H How did you get better, mate?

Lynne-H
Lynne-H in reply to Maxi80

I don`t think there was any one thing that I could say got me better. For a long time I was in a big black hole probably for almost six months. I felt like the lovely life I`d had had gone forever. Like you the thought of living with tinnitus for the rest of my life was daunting.

Then I discovered the BTA and they told me about a local support group which I joined, I met people there who had tinnitus but who were just getting on with their lives - it gave me hope. Hope is so important.

Because my tinnitus is due to hearing loss I was given hearing aids which initially made everything louder but now I wouldn`t be without them,

I also had counselling with an NHS hearing therapist, read lots of success stories and started to pretend that I liked these noises, that I didn`t mind them even though, of course, I hated them.

And a friend of my son`s who also has tinnitus told me that I would never get any better until I accepted the tinnitus. I`d already come to this conclusion myself but at the time all I wanted was for it to just go away !!

My GP prescribed a beta blocker propranolol to help with the anxiety - I couldn`t have antidepressants as I also have narrow angle glaucoma and antidepressants can raise eye pressures.

I can`t tell you any one way for you to get through this - I think that we all have to find our own way - find what helps most and take things one day at a time.

I do know that it`s not a good idea to make a point of listening to your tinnitus. Have some background noise on (I usually just have the radio, music or tv on ) set so that you can still hear your tinnitus. For a long time I made that mistake of sitting and listening to my noises and all that does is raise your stress levels thus making the tinnitus worse.

I remember the hearing therapist saying to me - one day you`ll wake up and tinnitus won`t be the first thing you think about - and she was right.

Lynne

Maxi80
Maxi80 in reply to Lynne-H

Thank you so much for all of that message.

I have misophonia which means external noises can trigger me so I where in ear headphones which can elevate the tinnitus noise.

I am trying to trick my brain into thinking I like the noise but it’s not having it 🙈 I’ll keep going though. That’s all we can do I suppose.

At the moment no local support group exists so I’m on here. I think you’re right. We have to find our own path. Sheesh it’s hard. I am trying though. I just want me back.

Thanks again.

daverussell
daverussell in reply to Maxi80

There is a strong link between tinnitus and stress. It's why it seems irrational to be stressed about "just a noise", but it's a natural reaction.

"The way people respond to tinnitus varies greatly. For some people, it is considered the biggest stress in their life whilst others will respond to it in a neutral, calm way. You might suppose that this difference is due to different people having different tinnitus. This would make sense, but the research evidence on tinnitus does not support this idea. Instead the evidence suggests that the reason one person is stressed and another not is because they have different ideas or beliefs about tinnitus." - tinnitus.org.uk/tinnitus-an...

If you try to understand tinnitus it may help you think about it differently. CBT (Cognitive Behavoural Therapy) is one of the more effective treatments. I had CBT to treat PTSD, so when tinnitus hit me I was able to draw on strategies to rationalise it. I still have bad days with Tinnitus and flashbacks from childhood trauma, but I've learnt to turn it round. You can too. Whilst it might be worth speaking to a doctor, the waiting list for therapy is a long one. The treatment takes time too. They may suggest a short-term treatment of antidepressants, or discuss this with them. Maybe you could look into private therapist, although this can be very expensive. I did and at the time it didn't seems to work; although it made me realise I wasn't ready to "get over it", but that a different story.

An appointment with a specialist may not be necessary (although it may be worth the wait). As I said if you can try to understand Tinnitus, you may start thinking about it differently. You could start here (https//tinnitus.org.uk/taming-tinn...) although, you've already started by talking about it and asking for help on this forum.

There is great advise and information on the British Tinnitus Association website.

Well done for taking all the right steps by seeking advice, not being ashamed to discuss and address the issues.

Maxi80
Maxi80 in reply to BTAPat

@BTAPat Knowing that it’s forever is a lot to take in.

Yeah, yesterday I was rock bottom, but today I've been a lot better. I think a big part is feeling like you have people supporting you. Yesterday morning I felt like I had nobody, but after talking to my parents and explaining to them I didn't want them to fix anything, just be there for me, getting support on here, and having an audiology appointment today with a very friendly audiologist who, while he couldn't help me, agreed that a lot of my symptoms were truly bizarre, went the extra mile to help get my ENT appointment moving along, reassured me he didn't see anything life threatening and that my hearing wasn't as awful as I feared (it was even better than his and I think he was younger than me) and even referred me to the tinnitus specialist which my local (and utterly useless, even HE agreed) GP surgery just completely neglected to even mention, it all makes me feel a lot more supported and able to put up with the noises without panicking about it or wondering how I'm gonna go on.

I think it's something of a learning process.

That’s great news. You got an audiologist appointment quickly. And I didn’t even know tinnitus specialists existed. I’ve been waiting for 3 months to see an ENT specialist on NHS. I might go private. But as you say, they might not be able to do anything.

Today has been a struggle, I won’t lie. I had to buckle and put on my ReSound app so I got some relief with some white noise. I didn’t want to use it as it just masks which can’t be good for that illusive habituation.

If you ever wanna talk I’m on Twitter.....

Same boat here, been waiting about 3 months for that ENT appointment. It was originally for jaw issues but think this ear nonsense has taken priority! I keep pushing and pushing them but there's very little budging. Honestly if I could afford it I would definitely go private at this point, even if they ended up finding nothing they can help with, it would be something to tick off and start looking elsewhere.

The amusing thing about the audiology appointment being so quick was that I didn't even know I'd been referred there, and the audiologist said the referral said practically nothing of value. Not sure what happened there, but glad I was seen by someone who seemed to care and explained why parts of my hearing loss I was concerned about were completely normal. It was very interesting actually!

I'm also on twitter, same username as here! I had a search for your username but couldn't find you. I just post about anime, Star Wars, and videogames all day but feel free to hit me up on there if you just want someone to vent at.

Thing is, the ENT will probably just say yeah it’s tinnitus. Then what? 🙈🙈

I would hope they'd do a bit more than that! Maybe look up one with a good reputation, particularly when it comes to their approach to tinnitus? I'm not sure tbh.

At some point I’m gonna have to accept it instead of thinking it might no be Twitter. I added you on Twitter, mate.

I’m so glad, BambooFighting, that your mood has lifted.

Hla20
Hla20 in reply to BambooFighting

This sounds extremely reassuring.

I am considering paying for a private ENT & MRI to get the process moving as I am extremely anxious & it’s affecting my life. I’m a mother to a young child during lockdown & I can feel I’m not myself since the tinnitus started. Struggling to cope as I have to constantly pretend to be ok.

BambooFighting
BambooFighting in reply to Hla20

If you can afford it, go private. Just found out one of my referrals (not for tinnitus) was never actually made. Never trusting NHS GPs again and recommend against it to everybody else. Good luck.

That’s great news. You got an audiologist appointment quickly. And I didn’t even know tinnitus specialists existed. I’ve been waiting for 3 months to see an ENT specialist on NHS. I might go private. But as you say, they might not be able to do anything.

Today has been a struggle, I won’t lie. I had to buckle and put on my ReSound app so I got some relief with some white noise. I didn’t want to use it as it just masks which can’t be good for that illusive habituation.

If you ever wanna talk I’m on Twitter.....

Hi Maxi80

Sorry that you are struggling so .... like you, I found it very difficult at first. I thought it would go, it would get better, there would be a cure etc.

Then reality sunk in, that I would probably be left with it.

Tinnitus, I think, is a unique condition to each and every person, our noises vary, the severity and how it effects our lives - each an individual experience.

My turning point was having hearing aids, (took me a while to get used to them) but it dulled the noise. I attended the tinnitus clinic and they found high had high frequency hearing loss (seemed ok to me!) so was offered the hearing aids. I was reluctant but she said it would help reduce the tinnitus, and to be fair it has. But I cannot sleep in them so it seems particularly loud at night.

However, it is always there ... so its a case of distraction. I have a white noise machine to help sleep and if I need it I can switch on white noise on my hearing aids.

Mentally it took me quite a while to adjust - I have other conditions so with this little unwelcome 'add-on' it seemed the last straw.

You will adapt and accept, the noise almost becomes part of you. I miss absolute quiet, but I accept that is not for me now. Days that are good - it takes very little of my attention, but days that are bad can be frustrating, and upsetting, but I know a good day will soon come along, it no longer dominates my life or thoughts.

Stress doesn't help and the more I fight and give it attention, the worse it gets! So if you are like me, try and relax, and distract yourself as much as you can. Meditation if you are that way inclined is very useful - you would need some quiet background music or probably focus to much on your tinnitus.

For now, a day at a time.

Very best wishes.....

Maxi80
Maxi80 in reply to lesley2015

Thank you for such a lovely message.

I think I’m in the overwhelmingly scared stage. Some moments I think it’s no big deal then I crumble. My brain tells me that I’ll never accept it and I’ll always be scared and frustrated and angry etc etc

I do wear in ear headphones which help when I listen to certain noises. But it’s not really sustainable.

Thanks again.

lesley2015
lesley2015 in reply to Maxi80

Have you been referred? - I know this isn't easy with the current pandemic but it would be worth having your hearing checked and options clarified.

I didn't want hearing aids, I am not old and I am female and vane! I was horrified at first, but willing to try anything. They are discreet, so unless I tell people they are unaware, and they are NHS. It really dulls the noise - my husband has slight tinnitus in one ear but sometimes he has to listen for it, I don't mind is always there to some level.

Don't minimize how it effects you, and ask for a referral if you haven't already.

I am sure you will adapt and accept, and you will get used to it - I cant offer any knowledge of a wonder pill - how wonderful would that be?!

But us humans, tend to react, panic or fight, then accept and over come and I am sure you will too.

There is a good life to have and enjoy, despite tinnitus :)

Maxi80
Maxi80 in reply to lesley2015

I’ve been refereed to the ENT at the NHS but alas it’s been months. I might go to private ent specialist. I don’t mind wearing a hearing aid but I also want to habituate which will be harder for me if I mask it. Oh I dont know!

The tinnitus doesn’t fight alone it brings depression and anxiety with it! I also have misophonia which does not help things! 🙈

Keep in touch you’ve been very helpful and uplifting!

Maxi80
Maxi80 in reply to lesley2015

Just quickly @lesley2015 Would I go for an ENT before a tinnitus clinic. I think have one locally. Deal in tinnitus management or something I think my actual hearing is fine though.

Morning Yes I went to ENT then was referred to my Audiologist etc.

I thought my hearing was fine too.

Hearing sids don’t really mask it, it allows you to hear other things more clearly thus putting the tinnitus more in the back ground. (They were far more complicated in telling me how it works, but that’s how it seems to me).

Yes, I am used to a white noise machine to help me sleep but if I have tinnitus I need a distraction. If I didn’t have tinnitus, I would not be able to sleep with the white noise machine and I certainly would not sleep with the noise in my head if it was external either.

So for me, I have passed the depression (it does get me down some days) and I realise I need to find coping mechanisms- which mostly I have.

You will find your own way of coping but just don’t give the tinnitus too much of your energy!! Mine will feed on it if I do lol 😆

Maxi80
Maxi80 in reply to lesley2015

How can I not give it my energy? It’s like PAC man lol.

Maxi80
Maxi80 in reply to lesley2015

I’m finding it hard to just get on with stuff.

‘Mark you need to hoover’

- I can’t my tinnitus is annoying me

‘Mark go for a walk’

- I can’t I’m feeling depressed

I also have misophonia so I don’t really want external noises to be louder lol

I might just need putting down.

OH dear, you are struggling ....

I cant really say much about misophonia, I don't know about it and like most conditions if you don't have them yourself, its difficult to have an understanding of them.

I have several autoimmune conditions which physically cause me problems, I was extremely active, loved walking and riding and working full time, now all of those have gone.Its accepting a different way of life, and accepting and finding a new way of living, trying to do a little of what I used to enjoy, that's what I have had to do.

I have pets that need me and don't understand or care if I am poorly, so i just push myself when I have wanted to curl up on the sofa or stay in bed....but that's how I deal with it, we all have to find our own way.

I hope you find yours too ...

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