Constant, deafening tinnitus (TW)

[LostMyReligion1980]

So I've had this for over three and a half years, can still barely eat, can't shower or wash my hair as the anxiety is sky high. I was always someone who hated noise and had to be in quiet to function. I've had no help from doctors except putting me on mirtazapine against my will. Im constantly suicidal but there's no help anywhere, I've been house bound the entire time and been mostly bed bound since summer 2023. I only see my partner who has his own health issues, Xmas and my birthday were totally miserable as I had panic attacks at midnight on both days. I told a doctor (on a phone call) three years ago I would kill myself and she told me not to be silly and totally dismissed me. I was appalled at her attitude. I don't know what the point of this is really, just wondering if anyone else is in the same boat and how do you cope? (I can't "ignore it", it's way too loud, I hear it over everything).

Have you tried white noise?

ive seen posts on instagram from tinnituswithgladys who’s a doctor claiming she can help, I haven’t looked into her, but it might be worth a try.

I’m so sorry to hear this. I also have tinnitus and got referred to audiology. Has your GP done that?
I found getting checked out to confirm my hearing was fine and nothing sinister going on very reassuring. They give you strategies to distract from the noise so you don’t notice it. I find a Snoozeband with brown noise helps if it’s keeping me awake.

please talk to someone in real life about the impact it’s having on you. Could you see a different GP? I mean this kindly, but if you never leave the house it’s going to be front and centre of your thoughts all day and no wonder you can’t ignore it. I hope you feel better soon 💐

Have you had any blood tests? Tinnitus has been linked to deficiencies in vitamins B and D, as well as zinc and manganese.

So sorry to hear you feel like this, Op. Yes, I am in a similar situation with deafening tinnitus. I can hear it over everything, the TV, family moving around the house, everything. It’s worse at particular times of the day and in certain places, so when it’s reasonably quiet but when I’m out and about it’s not so bad. It’s like a steam train letting off its steam at the end of the day. After ten years, I have got used to it. For me, I just let other things try and take over.

Definitely get back in contact with your GP to let them know again about your thoughts, they should not have been so flippant. But, solidarity, tinnitus sucks. Please know you CAN work to cope with it, you just need some proper support.

As per PP, I believe there are a lot of studies linking it with peri and menopause, deficiencies etc. so try and explore this with your GP./specialist.

Sympathies, OP. Your sounds worse than mine, but it did drive me nuts for the first few years - it started in 1999 and the longest respite I've had is about an hour.

I did some hypnotherapy to help me stop fighting it and remember that I can actually hear 'through' it. I do relaxation exercises when it steps up. Apparently, hearing aids help a lot of sufferers even if their hearing's okay. Didn't work for me, but having some constant background noise does take my mind off it.

Get more help. Also, go for a hearing check. Depending on what they find, they might have some ideas on how to manage it. Good luck!

... Oh, and thanks 😜 Thinking about tinnitus has, inevitably, made mine seem more insistent now! Just off to blast myself with some music ...

Have you ever contacted Tinnitus UK for advice?

Has a GP ever referred you to an ENT or audiology? You need to see one to rule out any medical conditions. I know someone with severe tinnitus and she wears some sort of gadget in her ears that helps mask the noise.

See a different GP until you feel that are listening to you.

I have had tinnitus for 30 years and the sound level is very manageable now, but I have been to hell and back with it. I suggest that you get help for your anxiety because that will make your perception of the noise level worse, that then causes stress, and so the spiral continues.

I found when it was bad to learn to breathe deeply, right from your stomach. Focus on your breathes, slowly and deeply. After a few minutes I would feel the noise level start to lower a lot (a support group taught this technique).

Be vigilant with reminding GP’s that you cannot take any prescription that has a side effect of causing tinnitus - there is surprisingly quite a few like Naproxenetc. I always read the leaflets thoroughly and the slightest mention of tinnitus - no matter how small the side effect could be - and I refuse to take it, contact the GP and ask for something else. Don’t take your GP’s word for it that it’s fine - check yourself.

Try going out for a short walk initially - small steps to getting yourself out of the house. You may find the distraction of the various noises helps to mask the tinnitus, and a step towards learning not to focus on the tinnitus as this makes your perception of it worse. When you are doing little other than focus on how terrible it may feel, and then your anxiety spikes, and so the cycle continues.

Please do seek help and support - you don’t need to be living like this. Ask your DP to come with you to the GP for support and to make sure they fully understand that you need help now.

I got it from having microsuction on my left ear which left me deaf in that ear. My teeth have been falling out since August 2022 as I couldn't get out. I can just about make it to the bathroom for the loo and brush what's left of my teeth. I have sleep headbands I play the radio on but even with it full volume I hear the tinnitus over it. I can't change doctor as they just assign someone to you so you don't have a choice.

Have you only ever spoken to the GP once 3 years ago? You need to go back and stress how severely this is affecting your life. Take your DP to help advocate for you.

If it’s at least the third time you have spoken to them then quote Jess’ Rule, the new guidance that has just been released to GP’s.

You should at the very least been referred to ENT and/or audiology to rule out anything obviously wrong or treatable.

Yes, I had this too a few years ago. It was a terrible time, as I'd also been suffering from hypnic jerks which meant my sleep was terrible.The answer for me was being put on Sertriline and to some extent some acceptance. In my experience the tinnitus is so loud because it triggers the fight and flight response and so you listen out for it. I found falling asleep with the telly on helped. Overtime I found the tinnitus less of a threat and now genuinely I forget that I have it.

https://tinnitus.org.uk/how-we-can-help/

Contact Tinnitus UK

Hi OP. I wish I could help you. I have mild tinnitus myself and o have been living with it. One thing I remember kid of worked was sponge ear plugs. I used them sleeping next to my partner and it would block everything out. I am talking everything. All I could hear was my own blood circulating and my heart beating inside me. I was able to sleep instantly and stay asleep all night.

They are soft foam, you squeeze them and push int your ear and let the piece shape to the shape of your ear. It will stay in place all night.

I would recommend you try it as it could take the white noise away too. I felt like it did for me.

I bought mine from Amazon but you can buy online or anywhere.

Also search earplugs for tinnitus. A brand called loop comes up and there are more recommendations for ear plugs for tinnitus sufferers.

Please don’t feel alone, I like being on my own all the time. I’m here if you want to talk.

I hope this helps please keep us updated

I saw an ENT privately in June 2022, just before the tinnitus started but after id been left deaf. He was useless, just gave me a hearing test and that was about it. Great value for £250!!! I bought hearing aids in 2022, someone came to the house to do it but they didn't help. £3000 wasted. The doctors are useless, they've just cut my prescription from 30 tablets to 15 without consulting me, so effectively I'm now paying £20 for the same amount. A friend did contact Tinnitus UK three years ago and I also phoned them but they weren't much help, I think they are only effective for those suffering mildly not severely. I've begged my partner to put a pillow over me but of course he can't and he gets angry if I say that anyway. I just can't cope with the terrible hissing and even worse droning, it never stops.

Yes. Very much about the lowered hormones and how it can impact nerves, auditory areas of the brain etc. Some people find HRT gives relief.

Yes, ototoxic medication can exacerbate tinnitus or cause it.

So sorry, OP 😞 I get microsuction regularly and they always give a list of cautions for you to read before, saying it can potentially cause or worsen tinnitus.

OP I’ve already replied but I just wanted to say please please go back to the GP and also contact Tinnitus UK again - you may speak to someone different who can offer some ideas etc.

You sound so defeated so please enlist help - ask your DP, family or a friend to help you seek help. You don’t have to live like this.

I wasn't given any warnings at all just that it was extremely safe, if I had I would never have had it done as I'm a very cautious person. It's destroyed my hearing and my whole life.

Thank you so much for bringing this to my attention, I’m grateful 🙏🏻

I have severe tinnitus in one ear following a severe head injury in 2018. Also post Covid it seemed to make it worse (a lot of people suffering with tinnitus post Covid, it’s a v common symptom).

It used to really bother me at first but now I only really notice it at night. Please please please go back and ask for more help as there is a lot of help out there for it - it just sounds like you have unfortunately had very bad luck in the people you’ve seen so far.

I'm mainly bedridden as I'm so ill with this so couldn't possibly visit the gp. I can't shower or wash my hair, I'm a complete mess and couldn't go out anyway due to the microsuction leaving me deaf in one ear.

Wearing hearing aids cancels out tinnitus. Verified by both my parents who have it and wear them. We then all found out this was apparently a fairly widely known thing, although none of us had known! Worth looking into.

I've had chronic tinnitus for around thirty years. I remember it starting with a whooshing sound, it's a high pitch now, like a loud constant flat-line.
I'd always mentioned it with my list of medical conditions (so it was on my records but I'd never asked for help). It was only when I became seriously ill, its impact became increasingly noticeable. I think because I slowed down (and at times stopped), I noticed it more.
I was referred to audiology and prescribed hearing aids on the NHS that play white noise. They're set slightly below the volume of my tinnitus.
I've learned to zone out from it. When I can't it's by far the loudest thing going on. I wear the aids when I can't cope.
I've found, ironically, the worst thing for my tinnitus is things like support groups on social media, and reading a post like yours (I chose to read it and answer). This is because acknowledging the elephant in the room brings it front and centre. I hear it incredibly loudly until I can eventually zone out again.
A dog barking or baby crying wouldn't irritate me in the slightest because I can now zone out from any irritating sound easily.
A silent room is still difficult. I always have something benign playing in the background, especially in bed, usually a relaxing audiobook or podcast, not music.

As I mentioned in an earlier post, I bought some in 2022 and they didn't help, £3k wasted. They don't work for everyone unfortunately. I think mine is just too loud, I hear it over absolutely every thing.