Scared - Tinnitus help/handholding - massively struggling to deal with it

[Sleepy21]

To ask for any tips/stories on how to manage/cope with onset of tinnitus, particularly when you have young children? Really down and struggling, sleep especially, so would be grateful with anything anyone could share! 🙏

New to MN by the way!

Unfortunately you’ve just got to get used to it. White noise can help and try and not get stressed as mine gets louder then.

I’ve had it for over 10 years and some days its so loud I’m surprised people cant hear it.

Thank you for your reply! Can I ask how long it took you to get used to it? I’m at that stage where I just don’t know how I ever will - currently signed off work struggling to cope. Yes, I am so stressed out I am making it much worse I am sure

I could have written this. Had mine for about 10 years. Some days are louder than others. Mostly hissing, sometimes whistles or clicks. I've just accepted it is now a part of me and stress definitely makes it seem louder. I had hearing tests when it first started and I have high frequency hearing loss which is age related. I do understand how distressing it is but in time you should become more used to it.

Thank you - I’m just worried I will never enjoy anything again and I keep going round and round wondering what I did wrong/what I did to cause it 😢

I have had tinnitus for years - but recently there is a new noise which I am finding difficult also. If yours is a high pitch whine type, I also think white noise helps - or just anything in the background like the radio or TV during the day - or just being out and about/busy.
At night I wear Sleep Phones - www.sleepphones.co.uk - and have for years. I just have the radio on with a timer to switch off. I don't actually wear them for tinnitus (but for insomnia).My new noise - which is like a rumble - only can be masked by having a fan next to my bed.
The high pitched sounds actually don't bother me - I find it weird that other people say they just have silence! Hopefully you might get used to it too.
There are online tinnitus support groups you could try. Also - there is such a thing as a "hearing aid" that helps mask tinnitis.
You can find out lots of info on www.tinnitus.org.uk

Mine started after I had covid. I tune it out now but it gets hard to ignore when I’m tired. On bad days I listen to water sounds on Spotify when I’m going to sleep, it’s a big help.

It’s really, really, hard when you first develop tinnitus and you have my sympathy. Mine is supposedly related to hearing loss.

One thing not to do is to put music or whatever louder and louder to try to mask it. Try listening to something you’re really interested in or enjoy at a low(er) pitch so your focus is on that and not T. I was told is try not to give it attention. Very easy to say but over time at least for me I’ve got used to it, though it spikes during stress and being tired. It also becomes more noticeable when I speak or write about it, like now. I avoid very quiet spaces so nearly always have the radio or whatever on. When it was really bad I used noise videos from YouTube- rain in a forest or breaking waves or stuff like that which I found good.

Hope you find some relief

Mine and DH’s started after Covid, I’ve had mine checked out and was sent for MRI as a precaution, less than 1% of Tinnitus sufferers will have a tumour, it’s peace of mind, knowing there is nothing sinister, my consultant said that most people have some sort of tinnitus at any given time, mine is worse when I’m stressed, and as long as I get my sleep I seem to able to keep it at bay, and not even think about it.

You WILL get used to it. You will get to understand it! It might take a few months before you find it almost fades into your unconscious mind but it will. Stress can make it worse.

(Young folk don’t realise how much loud music damages their hearing and can lead to tinnitus.)

Learn as much as you can about the condition. It’s different for all of us. If it’s really stressing you ask GP for anxiety medication. My GP prescribed a low dose beta blocker for a while when I first succumbed in 2002. It was horrendous.

Mine is a constant bi-lateral whooshing noise, sometimes clanging, sometimes screaming type noises over the whooshing. Clicking is tedious to say the least and rumbling wakes me up at night but not often!

I tell myself “it’s just another noise “ like anything else we hear. Eventually you will calm down, you will come to accept it and take my word for it, you will come to terms with it. You really will.

Thank you all 🙏 some positive stories and tips I needed to hear, mainly that I will get used to it - my GP has prescribed anti depressants and a beta blocker because I am struggling so much. I saw an ENT who thought it was due to an inner ear inflammation, and I imagine that is from when I had Covid. I just don’t know what to do with myself as I keep focusing on it and getting in a panic, but i think i need to start living with it and getting on with it. That was why I posted on here as I just feel so alone with it, like it’s only me which is obviously not the case!

It’s so hard at first - I used to feel like it was attacking me almost. I went on an anti anxiety medication. Getting accustomed to it was gradual - like you I didn’t think I’d get there but I have. I’ve had it now for many years and I do now manage alongside it. I find being outside helps as there are so many other noises to distract as well.

Thank you - I really hope I get there soon! Can I ask how you all coped work wise? Did it have any impact? I’m worried about adjusting, and telling people, when I return

I was open about it but I also made the “right” people aware. I was lucky to be in a supportive working environment, but yes it did impact me at work though it got better over time. I found concentration and focus was difficult, especially if there were deadlines, as stress just makes the T worse. I also didn’t want people thinking I was just sat there watching YouTube when I had my white noise or radio on my headphones😂

I have got tinnitus from a virus, it also left me with ME/CFS. The tinnitus gets worse when I have overdone things, it's a bit of a warning sign that I need to stop and rest.
Do you have any other symptoms?
Interestingly though I also have TMJ and clench my teeth, apparently it's one of the symptoms of that too. Do you have signs of teeth clenching (serrations on your tongue, lines on the inside of your cheeks?). If so it could also be worth getting a mouth guard from your dentist and doing some exercises to relax your jaw (you could also ask for a referral to a physio).
I would say use background noise as much as possible and try and ignore it, try and relax/pace if you find overdoing things makes things worse, look into TMJ and whether that could be a cause and do what you reasonably can to avoid more viruses. This could include wearing a high quality mask where practical, running HEPA filters at home, using antiviral nasal spray, getting vaccines where practical (private if necessary) etc.
Good luck I hope you find some improvement 💐

This was me nearly 7 years ago .
Pregnant with my 3rd child and a mess , I couldn’t sleep , hear and was constantly in fight/ flight mode . I went round and round thinking about everything little thing I done that night prior to going asleep , woke up in the middle of the night to the most horrendous noise . I also had fluid in my middle ear and suffer from TMJ like the above poster , I think mine is for sure related to that.

Has your GP tried steroids ?

You will get used to it , right now you’re in panic fight/flight mode and so is your brain trying to figure out this noise . Hopefully yours will lower in volume and tone . Mine did about 5 months after giving birth. Also recommend a referral to an ENT they will check out your auditory canal for tumours although it’s rare.

Don’t give up hope , I know it’s sooo hard , it will get better x

Thank you both so much xx lots to think about there! Yes, funnily enough I do have lines on the inside of my cheeks and have had issues with my jaw locking before so think you are both right - it could be TMJ related! I will look into this.

Prior to this I’d had viruses almost back to back - the last virus I had, I had very full sinuses, was really light-headed and slightly off balance (no vertigo or dizziness) and then the ear buzzing started - I went to see a private ENT as my GP gave 2 rounds of antibiotics and when that didn’t work, did a referral to NHS ENT but I knew I would be waiting for months! He has put me on steroids so we’ll see what happens! He said it was my inner ear, my left one.

I have already definitely noticed that it gets
louder when I’m stressing about it - I’m naturally an anxious person so perhaps I can look at this as an internal alarm!

I can’t believe you went through all that whilst pregnant! I cannot imagine! Can I ask how/any tips for managing it with kids? Struggling at the moment and feel like I’m not being a ‘present’ mum as I’m so distracted by it!

I am also an anxious person and a bit of a worrier so like yourself @Sleepy21 this sent me spiralling.

Honestly I don’t know how I got through those first few weeks , hard enough sleeping when pregnant . I just surround myself with any kind of noise , the radio , podcasts , even now I sleep with the TV on low which helps! It really does have such a negative impact on daily living .

If you’re struggling too much your GP may prescribe anti anxiety , anti depressants. Also wear a mouth guard at night and supportive pillows

Is your rumble a low frequency sound? I've recently developed this too and it is really annoying. It's a like an on/off fridge hum - but irregular. Much harder than the high frequency static I also hear. You have my sympathies. I'm still in panic mode about it all, even though it started a number of months ago now. Its really distressing :(

When I first "heard it" I thought a diesel van was driving up behind me - so yes low pitched. It is intermittant - so yes like an off/on fridge. REALLY annoying and much harder to deal with than my old high pitch friend - who is still there too. I haven't had it all the time - now it is not there but it appeared in the middle of the night a couple of nights ago. I try not to panic - as there is no miracle cure.

Hi OP I have had this a few years I'm seeing ENT this weekend I think they have some kind of tinnitus clinic but not sure. I'll let you know how it goes. Kind thoughts

I’ve had it for about 2/3years. I’ve had an MRI but that showed nothing. I’m now trying HRT because it can be a perimenopause symptom. The only time I don’t hear it is when I’m in the shower or at the sea. I hate it so much.

I've had tinnitus for around 2 years. It's something you just get used to. I hadn't noticed mine until I saw this thread!

I have tinnitus post covid and also have TMJ. I have a wonderful chiropractor who specialises in jaws. It doesn't go away but after she has treated me (no cracking of bones involved) it is much reduced for a while. She also counselled against a mouth guard because it puts the jaws in a different unnatural position that acerbates the TMJ.

It's horrible when it first develops BUT you will get used to it, I promise. Some days it's still a bit intrusive for me. Others I don't notice it at all and these days are becoming more common. I'm about 5 years in, I would say.