Unbareable tinnitus

[LostMyReligion1980]

TW - mention of suicide

So I developed tinnitus in June 2022 after having microsuction on my left ear to remove earwax, in the previous month which caused hearing loss in the left ear. It started as hissing then a few weeks later a sound like a running engine started. I've had it constantly ever since and totally lost my appetite with the stress of it all. I can hear it over everything including hairdryer which is loud. Ive felt so ill with it that Ive been housebound since it started and got worse last year and basically been bedridden since about last June and havent been able to shower or wash my hair since Nov/Dec. I know I'm an extreme case but has anyone else suffered like this and if so how have you coped? It's just me and my partner, no support from family. I am more than ready to throw in the towel and already went down to the local river in December ready to throw myself in. GP etc no help. Desperate, in tears every day, its horrendously loud.

I'm sorry to hear you're suffering so badly with this. I've had hearing loss and tinnitus for 22 years, but it doesn't affect me so severely.
Have you still got hearing loss? Definitely see about getting a hearing aid if so. That won't cure the tinnitus but really dampens mine down so it's much less noticeable. Hearing aids can also be programmed to emit a white noise which again dampens down the tinnitus.
If you can afford it, I'd go straight for a private hearing test as the hearings aids are way better than the NHS one I had. I have a CIC (completely in the ear canal) one and it cost £1495 last year.
Even if you don't have hearing loss now, still speak to a private hearing clinic as they might be able to offer the hearing aid but with just the masking noise to help the tinnitus.

https://tinnitus.org.uk/ look helpful. They have a helpline you can use right away.

Have you been referred to ENT? If not, insist on it. I found the audiology department to be very helpful, although I don’t actually have any hearing loss. Also, if you are suicidal please tell your GP.

My tinnitus is very loud, but I have learned to ignore it, and am only aware of it when I think about it. This sounds quite mad - it did to me initially too - but it really is possible to zone it out.

Poor you. I have had tinnitus for years but not as bad as you and I live life as normal. It can be very annoying at times but for me it’s worse when it’s quiet.
An audiology did tell me hearing aids can help - assume you’ve had ENT appointments etc - what do the specialists say? There’s no cure so it’s really a case of managing symptoms.

Please tell your GP or a crisis line you are suicidal.

I saw an ENT privately in June 2022, he was no help at all. I bought some private hearing aids but they didn't help, just made everything painfully loud. I tried some others last year but the masking didn't do anything, probably because this is so loud I can hear it over everything, when I managed a walk over a year ago i could hear it over the traffic passing by a few feet away. It's horrendously loud and relentless. I can't even watch TV as I'm so restless with the noises I can't sit down.

I suggest you keep going back to your GP until they satisfy you with some treatmet or suggest a new specialist.
Are you able to have your ears gently cleaned?

Hearing aids need to be worn all day so your brain can adjust. At first everything is horrendously loud but after a while it quietens down. I have very loud tinnitus in my right ear but with my hearing aids in it all but goes. On some occasions if I am bothered by it I put them on the white noise mode.
This is very difficult and I really feel for you.

The GP knows and we've phoned the crisis line several times and they were no help at all. My partner has been to the GP numerous times on my behalf but we've got nowhere. Had an ambulance out twice as my partner was so worried about me, hitting my head against the wall and biting myself. He got so frustrated he's hit me etc a number of times and he's a very placid person. He had major heart surgery last year so this has all been absolute hell.

Don't think there is anything else the GP can do. I'm never having anything near my ears again, I've since discovered quite a lot of people who have got tinnitus after having microsuction. There was no warning it can cause this or I'd never have had it done. It's ruined both our lives.

There are various earplugs that claim to help - Loop and Flare are some mentioned. I'm so sorry you are having such an awful time with it.

You need to see a therapist to help you cope.

@LostMyReligion1980 I do understand the loudness - I can hear mine constantly and over everything else, nothing drowns it out, but I can live with it and accept it as background noise.
You have an extreme and rare reaction to it which sounds truly awful. The same with the hearings aids - they shouldn't amplify everything, especially if you've bought good private ones.
I've just read that B12 injections can help hugely with tinnitus. I think if I were you I'd also be looking at giving something like hypnotherapy a go.

You’ve had some good advice on here so we have to put tinnitus “in its place!”
We have to think of it as “just another noise.”

I have had bilateral tinnitus, very loud, engine running, metallic hammering, screaming noises, clicks and whooshing since 1993. The whooshing never goes away but other noises come in over the top of it.

I had to get out of bed every morning and go earn my living in a trainer scenario, in the medical arena as it happens, driving all over the UK, staying in hotels.

I had no choice and just had to grin and bear the cacophony which totally exhausted me.

Try to avoid stress, try to avoid stressing others because there’s nothing they can do. Believe me, it will settle. It WILL settle. It might never go away completely but I believe it will quieten and you will learn to live with it.
It’s still early days for you but I know exactly how you feel.

Get yourself out of that bed, go through your normal routines, get out of doors as much as possible and and into nature, walk in the park, trip to beach or local forest, and keep the faith. You will get through this. Believe me.

I want to second what @MinervatheGreat has said - I've only had tinnitus for 3.5 years but the first 18 months were horrific. I have a cacophony of noises, most of which are maskable thankfully apart from a couple of high pitched head noises. I honestly felt that I wouldn't ever enjoy life again, I had to carry on as I had two school aged DC but I was a shell of my former self. Lost loads of weight which I couldn't afford to lose as I'm tiny anyway and I was at rock bottom. Gradually over time I started realising there were times when I 'forgot' to be aware of the noises and it just improved from there. It definitely seems quieter than when it first started but I think that's because my awareness isn't on it anymore. I live my life completely normally, it doesn't affect me much at all other than occasionally being a bit more obvious but I just acknowledge it and move on.

One of the things that really helped was being outside getting fresh air and listening to all the sounds of nature. Now is a particularly good time as the birds are starting to be quite active and noisy due to impending breeding season. Go listen to their lovely songs.

Long story short, I also believe you will be absolutely fine over time. Hang in there.

That sounds absolutely terrible, OP. I'm so sorry.

HealthUnlocked can be useful to see how other people suffering similar are managing, especially when medics have not been able to help.

This thread looks potentially quite useful:

healthunlocked.com/tinnitus-uk/posts/150001142/a-cure

I just read your update about the violence. This is intolerable. Your partner may be struggling to cope, but to hit you is indefensible.

You both need to get some help with the impact of this on your emotional state. Urgently. Can you afford private help? CBT might be helpful in this situation, but you need an very good practitioner. If you want to DM me your location I can try to find someone.

I have long term tinnitus and I agree it is awful but after a while mine subsided to the point that I now only hear it if I'm in a completely silent room.
Can you ask if there is a tinnitus clinic you could attend?
If it helps at all it is not a real noise but your brain thinking there's a noise if that makes sense.
I truly sympathise with you as it is really awful being unable to get away from it. Mine developed after ear syringing.
Neck and back massage helped mine - not sure how.
Hope it gets better for you soon x

Thank you for the messages but I'm in a very bad way, can just about get to the loo and back again. I've been using wet wipes to clean myself but hair is impossible. I also can barely eat, just about manage a sandwich a day. I chat with a lady online who has had this for seven years and can only eat a Weetabix a day, she now weighs five stone. She begs her partner to put a pillow over her head as I have done with my partner. My only escape is sleep. I'm totally exhausted with this, I'm someone who always needed silence to just recover from being out in town for instance.
I was having CBT last year by phone but missed one appointment as I didn't hear the phone and they dismissed me from the service. I'd had four sessions and it didn't even touch on tinnitus.
I really am at the end and can only see one way out as this is so intolerable. I'm in several FB tinnitus groups and there are a few people there in as bad a state as me. I wish I had a gun

That wasn't the right CBT provider for you then. Assume it was NHS to dismiss you like that.

The thing is @LostMyReligion1980, you will keep existing regardless of your distress, so you have to take some small steps forward. I found this a very hard lesson to learn, but I am starting to.

Facebook groups for specific, hard to treat conditions can be very negative and you can't afford to be dragged down further. Speaking to someone so severely impacted is going to damage your MH further.

You are posting here which is great, so have a look at this thread on CBT and tinnitus:

healthunlocked.com/tinnitus-uk/posts/150126076/cbt-for-tinnitus

That site tends to have some expert patients on it, rather than solely people who are overwhelmed.

Oh, I'm sorry it's affecting you so terribly

I'm not going to make suggestions on fixing it because I'm sure you've tried everything! I've had tinnitus non-stop for 24 years now (argh). It's getting worse but yours is more intense, from what you say. I find mine ramps up to a deafening screech at night sometimes, when I'm trying to go to sleep; that's when I think about people living with it that 'loud' all the time. And then ... I do breathing exercises, massage my head behind my ears, and eventually sleep.

However insane & stupid it may be to say it, the only solution IS to learn how to live with it. Don't let it have your attention. Make the effort to hear 'through' it, keep the radio on, all that stuff you know.

I'm seconding @SchoolNightWine's suggestion of hypnotherapy. All of the ways to live reasonably with tinnitus are mind tricks, and hypnotherapy can be an effective way to pull those off. Can't hurt, anyhow.

You are worth saving! There will be good days. Hang around for them xx

I really hear your desperation in your posts, but please please read again what your fellow sufferers have said. You Can get to a place where you can live with this condition.

You need more help. Keep going to your GP they should be your gateway to specialist support.

I had a bout of this once for around 6 months and it really is so difficult to get on with daily life with it. You have my sympathies OP as it really does sound so intense all of the time. I don't have any suggestions but just wanted to say that I hope you can figure something out 💐

Anecdotally I heard of a woman who was successfully treated with acupuncture. It didn’t fix it completely but she was able to go back to a normal life. Funnily enough it was her doctor who recommended it. Find a very good acupuncturist, ask around about who has treated this condition before.

I'm sorry I really can't cope with this, I can't even function normally. As soon as I wake up there's loud hissing and it's soon accompanied by blaring/droning that gets louder and louder, I can't even sit down as I'm so restless with it and it's not in my ears it's all over my head. A friend has it but mildly as she has to listen out for hers to actually hear it!!! This has been 22 months of sheer hell and no end in sight. This needs to end before I do.

In my experience you are doing two of the worst things you can - one is reading about and talking to people who are stuck with making tinnitus rule their lives. There is no reason why having tinnitus would cause you to just eat a Weetabix, that is a choice. I vividly remember losing a lot of weight when I first got tinnitus. This was as a result of the stress and anxiety it caused me as I was literally forcing food down my throat, I used to make big bowls of porridge and sit in the garden watching the birds while I ate it to take my mind off eating, I had no appetite, but I made the choice to eat to keep my health up.

It is also a choice to do nothing other than stay in bed and focus on the tinnitus. This is teaching your brain that it's the most important thing and it's right to be afraid of it, how do you expect to improve and live again if you're not trying to? I speak from experience as I've been in your place. I suppose I was lucky as I had my children to care for so I had to keep up with a routine, but still, you need to do it for yourself.

Stay away from FB groups and people who are stuck in a negative cycle. Go outside for some fresh air. Tiny but positive steps. I was referred to a NHS tinnitus clinic but by the time the appointment came around I had got myself better. Maybe ask your GP for a referral to one near you?