Can’t mask T to sleep : I’m only a month into... - Tinnitus UK

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Can’t mask T to sleep

Sassyjax1 profile image
44 Replies

I’m only a month into this hell. Went out for the first time yesterday after my spine op. The sudden onset T is horrendous. My left ear feels blocked all the time. I had like a droning sound in that side when the T began. There’s no change in my hearing as such - but it’s like being in a drum. Left ear just feels pressured and blocked. The horrendous droning sound has lowered for now, but as soon as there’s a low bass sound or I’m inside a building - there’s the drum sensation. High pitched continuous T sounds and left ear distorted sounds and I’m unable to sleep even though I have tried masking, leaving TV on, calming music, etc. I can’t use white noise. Waiting for audiology referral - but too scared of what they will say. I dread bedtime as my T is continuous - no break. Spoken to others who say they have only ever experienced moments of T or a few days, max. Mines 24/7 and loud. Feel sad that I don’t get a break from it. So frightened of it as it’s only happened since coming home from my op. I was ok until day 6 after my op. My GP was asking if it’s pulsatiie tinnitus - but I don’t know - my ear just feels sensitive and drum-like. The whole time I was out I spent it frantically trying to pop the ear. I can’t do this all day long as soon I have to have my little girl home and will have school runs, playgrounds, kids parties, etc.Full of dread. I spend all day researching T. Terrified of the impact this will have on my little girl.

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Sassyjax1
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44 Replies
Happyrosie profile image
Happyrosie

just in reply to one point - you say others have told you that tinnitus is not continuous. That’s certainly not my experience. I have it continually since I was fifteen or so, and I’m 76 now. But as I habituated I don’t notice it. I hear it now because I’m writing this!

Other than that, you had many replies to your previous post, have you found them helpful?

Sassyjax1 profile image
Sassyjax1 in reply toHappyrosie

That’s pretty amazing! Glad you managed to habituate. There must be many people out there who have done the same. I can’t imagine it. I can only hope to reach the point where you are. Yes, I have tried hard to listen to advice given - sadly I have reached the point of trauma/crisis. Can’t see past that right now. Mine was sudden and loud. Too scared to have my audiology appt. Don’t know what else they might find to perpetuate my current high anxiety.

Happyrosie profile image
Happyrosie in reply toSassyjax1

and I meant to say - something like one in ten of the world population has tinnitus and the vast majority don’t have problems. Indeed, studies have been done to show that if you put someone in an environment where there is absolutely no noise, the brain will find something. Many people, if they find they are habituated, won’t be coming on to this forum because they see no need.

Surely if you see an audiologist they will be able to reassure you more professionally than we amateurs can.

I’d say you’ve reached the point that you really need professional help of some kind. Go to the website of the the National Institute for Clinical Evidence (NICE) and input “tinnitus” to their search box and armed with this information have a chat with your GP.

Sassyjax1 profile image
Sassyjax1 in reply toHappyrosie

Thanks for your response. I did speak to my GP who sent me a message via the nurse to tell me to “learn to live with it”. A different GP at the same practice did the audiology referral. I have done a self-referral for therapy. The current wait is 3 months.

Happyrosie profile image
Happyrosie in reply toSassyjax1

I’m going to get boringly repetitive here. You will see from NICE what pathway doctors are supposed to follow and yours isn’t doing that. So maybe find a different doctor at the practice and see if he or she is more helpful. Whilst your own doc is saying “get used to is” and this is, I suppose, correct, the medical profession is supposed to be HELPING you to get used to it, not dismissing your concerns.

I’d also reinforce what Pat, the expert, is saying to you.

Give Pat or one of his colleagues a ring at Tinnitus UK. A chat with them is, I’m sure, going to be helpful.

Sassyjax1 profile image
Sassyjax1 in reply toHappyrosie

Thank you Happyrosie. I just went to move my car as part of my rehab for my back (check I can do an emergency stop), and it sounded like I was inside a drum. Literally has sent me spiralling into a panic. GP (a different one), has referred me to audiology. My ears (especially left) feels permanently blocked. I can’t and don’t understand what’s happening to me. Keep reading tinnitus is related to hearing loss - yet my hearing is over sensitive to some sounds. Beyond confused now.

Bellyboo profile image
Bellyboo in reply toSassyjax1

Hi, I have chronic T and I live with it. Occasionally it spikes like today….I have flue!

Two audiologists said it was hearing related and pressured me to get hearing aids which has made zero difference so I threw them in a draw. I have good days and days where I panic so I then take a pill what my gp proscribed and this helps me. Alcohol

is my worst enemy for T so I only drink on holiday to please my wife (came home from Turkey yesterday with a cold so I’m presently suffering with it .

I swear that my covid jabs (3) made it soo much worse. I’m 70 and mine started 40 yrs ago and goes up a notch every holiday. My opinion is that it’s nothing to do with the ears but the sinuses ? Hang on in there …it will not harm you physically.

Sassyjax1 profile image
Sassyjax1 in reply toBellyboo

Thanks for replying. I don’t have hearing loss with mine. Quite the opposite. Just very annoying trying to get through the stress of the day as a single parent, etc. Sleep is really poor. I’m in awe that you have lived with it for so long.

TinnitusUKPat profile image
TinnitusUKPatPartner

You are pretty new to tinnitus, Sassyjax - that's important to keep in mind.

It will seem more intrusive and difficult to manage at first, by virtue of it being new - which is normal. Most people do worry about tinnitus when it is new and they are not certain about what has caused it, if it is going to improve, etc.

You're frightened of your tinnitus, worried about going to bed because you'll have a sleepless night and worried about you will find out from an audiology referral. That is a lot of focus on tinnitus at one time and quite a bit of anxiety resulting from that attention, I'm sure.

People who are in a pattern of stressful attention towards tinnitus often get into the 'fight or flight' trap and can end up feeling trapped - is your concern about not wanting to find out what an audiologist might identify a sign of this? Wouldn't it be better to have some clarity about a cause or options for treating any underlying causes?

Sassyjax1 profile image
Sassyjax1 in reply toTinnitusUKPat

Hello. Thanks for replying. I think I’m scared of them (audiology) finding an extra underlying cause - but still having to deal with the tinnitus. I’m very anxious and fear going to sleep. When I do sleep the sound wakes me up. Because this happened a week post-op, I’ve convinced myself I’m unable to go for me next operation. I would be able to cope better if it wasn’t a constant 24/7 whistle. I’m supposed to be on a physical road to recovery for my back and will soon have my little girl back home - which means school runs, clubs, etc. All of that requires sleep - which I don’t currently get. It’s a bit of a viscous circle. I can’t shake it.

I forgot to add. I have sudden sound sensitivity to some sounds - but not all. All this is recent - the last month. Never had issues before - but hopeful it can dissipate somewhat.

psycholady666 profile image
psycholady666

It sounds horrible . And maybe if it was triggered by the op ( or the meds) it will dissipate gradually . Speak direct to the T uk advisors- they're available all day.

Sassyjax1 profile image
Sassyjax1 in reply topsycholady666

Thanks for replying. It’s a scary and bizarre time. I really hope it dissipates. I don’t think there’s any hearing loss as my ears seem more sensitive. The loud droning seemed to be left-sided and it’s sensitive only to specific sounds - like bass. It woke me up repeatedly, so I listen out for it now despite having the continual ringing. It came on within a week of the op. My anxiety is through the roof.

One of the T UK advisers was so wonderful to me. Listening and trying to understand. She spoke to me about habituation.

RagdollOwner1993 profile image
RagdollOwner1993

Hi There, I was in a very similar situation to you; i've been going through this for about 2 years now and honestly i have good days and bad days but i'd say it's currently 60% good and even the bad ones don't trigger my fight or flight like they used to. What you're going through now is probably the worst it's ever going to get for you and you may not notice it but every day will be getting a tiny bit better. If it's only 1 side and you feel like pressure it might be a nerve issue, mine gets worse when i grind my jaw when i'm stressed as it crushes my Eustachian tubes which makes it really bad in my left ear.

Habituation is different for everyone but you will find some kind of lasting relief, every moment you can hear it but remain calm is a minute where your brain is learning it's not a threat, once it's certain you're not in danger you'll find it gets immediately quieter and eventually you'll barely notice it. There's loads of us with it and i promise you are not alone!

Sassyjax1 profile image
Sassyjax1 in reply toRagdollOwner1993

Hello. Thank you for taking time to reply. It was so sudden, unexpected and aggressive. Nobody I know has it constantly so I struggle with trying to get people to understand. Left ear feels blocked all the time and constant clicking when I swallow. It’s the ear that picks up bass more. Maybe it’s a nerve as you say. I am anxious about getting back into life as never met anyone with constant tinnitus and worried I won’t get understanding. Still in early recovery following my op - so kids will be back home soon and it wont just be me on my own, trying to adjust. I’m a single parent. My son is back from uni soon and he’s chaotic because of his needs. Concerned this upheaval will make my symptoms worse. I have been referred to audiology recently, but no idea of how long the wait is. I did see an interview this morning with the singer, Lemar who has tinnitus. He said at first he was anxious. He didn’t mention much apart from saying his was from loud music during his career. Seemingly, he has learnt to live with it. I couldn’t cope if mine got any worse. I’m glad you say that it will get less as it settles down. If it wasn’t continuous, I’d be so much happier.

RagdollOwner1993 profile image
RagdollOwner1993 in reply toSassyjax1

I think when you get talking about it you'll be surprised by how many people have it. I met 2 in my team alone, one is very mild and it doesnt bother him but the other struggles sometimes like i do. With regards to your kids, taking your mind off it is the single best thing you can do, sitting and being alone with T is the number one way of letting it win and feed off your suffering. You'll find your T appears to actively quieten as you begin to focus elsewhere. T comes from all sorts of things, the most common is hearing loss but i'm 90% sure mine came from the Covid Vaccine! It's continuous now but eventually you'll just start forgetting about it. I know how insane that sounds to you right now, trust me i'd have laughed in their face if they told me that when mine first started! But weirdly, it does. You'll probably have spikes but as soon as you realise that there is an end point it's way more bearable. Tinnitus really damaged my mental health for the first couple months but then you kind of start building back up, even if it is 2 steps forwards 1 step back. I saw you mentioned you said you cant do white noise but for me that works really well, it took a little bit of practice as i used to sleep in silence but a singular droning sound i found was best at masking. I also found alcohol helps me a lot as well, which i know is a contentious issue but if you can be responsible with it and only have a couple before bed, i found it really helped kill of the anxiety around it, which is 80% of the battle.

Remember that right now you're in the eye of the storm and it all seems so hopeless. At the moment your own thoughts can't be trusted as it's tinged with anxiety and fear. Listen to what we're saying here and look how much better we're all doing. Sure we all struggle but we're getting our lives back. As another commenter said those that have successfully FULLY habituated don't bother to come to these forums so we really are the worst afflicted. Please see this as a huge beacon of hope. Tinnitus is an evil thing, but it can't hurt you and it will pass.

Sassyjax1 profile image
Sassyjax1 in reply toRagdollOwner1993

You are so incredibly supportive. Thank you. I’m looking forward to a time when I can’t hear the sound of bass so harshly. It’s the worst part of it. I’m not a massively patient soul. I have explained to my children the issues and have been ignored. This made me think that at least it won’t cause them anxiety about getting it themselves. I was really concerned about the distorted sounds I heard at first - everyone sounding like daleks was awful. That’s dissipated at the moment. Then the loud droning dissipated - but I don’t trust it as it’s the left ear. This is the only place I have had a real support. Friends and family say things like “oh I couldn’t bear to live with that”. I’m honestly hoping they don’t ever have to! I’m hoping that you are living a full and busy life despite your tinnitus journey. I read a fantastic story on the Tinnitus UK site about a man who woke up with screeching tinnitus. He was destroyed by it. Ten years on he says he lives in relative calm after habituation.

RagdollOwner1993 profile image
RagdollOwner1993 in reply toSassyjax1

That's ok. That's what we're here for! This entire forum is designed for support. It does sound to me like you may have some hyperacusis as well which can go hand in hand with T, an audiologist is 100% required! However, you've just said that things are slowly going back to normal so its almost certainly a by-product of your surgery. It's so hard to understand if you havent had it yourself, i used a noise generator to mimic what i could hear to help get my message across. However i wouldn't recommend it and that also spiked my T, god knows why.

T can be quite a long term thing before you can work out patterns, I'm coming on 2 years and only had a very rough idea of how my T works. However even before working it out you'll get some relief. Get booked in with an audiologist but then just take it a day at a time. No point worrying out having it forever when you don't even know what it is. The vast majority of T sufferers do find lasting relief no matter how bad so have faith!

Sassyjax1 profile image
Sassyjax1 in reply toRagdollOwner1993

The spine op I had requires the patient to be face down. So the head is under a bit of pressure for the duration of the op. It’s a very common procedural technique apparently. They do try to cushion the face and tell you that you may get swelling afterwards. I didn’t have swelling or injury to my face, but my sinuses felt horrific and had sinus headache and pressure. They gave me a nasal spray to use when they discharged me. I didn’t start getting the hearing issues until a week after the op. Suddenly voices were distorted, then the loud droaning began. That dissipated after 2 weeks. A nurse looked in my ears “there’s no wax”. That was that. GP said “tinnitus, it might go, it might not, learn to live with it”. Spoke to another doctor who referred me to audiology.

RagdollOwner1993 profile image
RagdollOwner1993 in reply toSassyjax1

Yeah unfortunately doctors are really hit and miss, i've just some awful experiences with a consultant. But audiology is the right next step.

Sassyjax1 profile image
Sassyjax1 in reply toRagdollOwner1993

Do you manage to live a full life despite the tinnitus? I think it’s hard to accept it when you can’t pinpoint its exact cause. I know you think it could be the vaccine in your case, and I, for one, am in agreement.

RagdollOwner1993 profile image
RagdollOwner1993 in reply toSassyjax1

It's really hard to accept to start with, when the T is bad is very much a Why me mindset, but thats the anxiety talking. Once you get a control of that you find that yes, you can lead a full life and you really stop caring about the why

I have to do a few extra things that others dont: I always make sure I have headphones on me, i stick to a strict routine with sleep hygiene and white noise and i have failsafes at work in case i need to duck out at short notice (i.e dont leave things to the last minute!). I find i get more anxious going to places i dont know as i cant control the environment in case i spike but that's getting better.

I'm 2 years in and i'd say i do 90% of things i did before. The only things that really worry me now are going away on long trips as i'm not in an environment i can control, but i did Iceland last year and that was fine! I'm also going to Majorca this year and looking forward to it. It's not the T that stops me, it's the anxiety. Ultimately we have no control over T but we can control how we react to it.

I see T as a parasite in my brain that feeds off my fear. The more i feed it, the stronger it gets and the more fear it creates to feed off, it's a self fulfilling prophecy. As soon as i break that circle i can feel the T shrink and almost go dormant at times, i'm sure its 80% phycological. Once you recognise that and find ways to manage your mental state you'll find T isnt nearly the beast you thought it was.

So in summary, yes! I lead a full life and i'm sure you will too :)

Sassyjax1 profile image
Sassyjax1 in reply toRagdollOwner1993

I can’t thank you enough for today. I’m in London, so it’s mega noisy anyway. I’m getting some ear plugs for when I have to go on the tube. I guess with this it can happen to anyone at any time. I wish there was more research into the subject. I don’t understand the blocked ear and clicking when swallowing. My left ear needs constant popping. Drives me nuts.

RagdollOwner1993 profile image
RagdollOwner1993 in reply toSassyjax1

If it's external noise bothering you definitely look up hyperacusis, i find when my T is bad i wince at noises like unoiled brakes etc. T is way more common than people think and it's critically underfunded in terms on research so wherever you can spread awareness provided it doesn't make your own mental state worse.

I'm from Cambridgeshire so not a million miles away!

Sassyjax1 profile image
Sassyjax1 in reply toRagdollOwner1993

It’s all so sudden, it’s been a shock and I hope and pray for better days. Keep trying to find stories from people with positive experiences after horrendous suffering.

RagdollOwner1993 profile image
RagdollOwner1993 in reply toSassyjax1

Don't look too hard, obsessing will make it worse. Tinnitus is savage but it's rare to find cases on lasting damage, 99.9% of people adapt just fine, you'll be one of them! I've got a book somewhere from Tinnitus UK and on the back it says "it does get better" and it's completely true.

Portland135 profile image
Portland135 in reply toRagdollOwner1993

YouTube has great Tinnitus masking videos to listen to..

Sassyjax1 profile image
Sassyjax1

Thank you

Persevere99 profile image
Persevere99

Hi

T troubled me to the point where I needed benzos to fall asleep.

Then, about 5 years ago, I said to myself ‘this is not good’.

So, started thinking about others’ far worse problems, and, that slowly, did the trick. Dropped my T rating to about 10, from 50 and less and less benzos needed.

Then, 5 years ago I read on the web some truly sad stories of people being cruelly tortured before being murdered.

And, that, dropped my rating to zero.

And, no benzos now for 5 years.

So, to sum up, it’s the rating you give your T that is key.

If you, like me, constantly searched for ways to alleviate it, then, for sure, your T rating will high and it will impact on your life.

So, try this - say this to yourself, as I do, a 100 times a day -

“T is Nothing………..compared” - to what others are going through

And for sure, it will downgrade your T rating, and the impact it has on you will keep dropping to zero.

Please read my own T post for more.

Persevere99

Sassyjax1 profile image
Sassyjax1 in reply toPersevere99

Hello, I do understand where you are coming from. However, my GP has done an urgent referral to a vestibular specialist as it’s possible my tinnitus is from an injury to my auditory system whilst positioned awkwardly under anaesthetic. I don’t know if that means I can habituate to tinnitus as it’s resulting from an injury. I’m always confused about this.

Chumpiechops profile image
Chumpiechops

Hi, I can understand how you are feeling. I would suggest not Googling stuff about T as there’s plenty of snake oil salesmen on there.

My experience is similar to yours re sleep, I am lucky to have a very supportive GP and she could see what state I was in. FF from June 2022 and while I am still using a low dose of anti depressant to help manage T and sleep, I feel in a much better place.

I can’t say 2 people react the same to T but Tinnitus UK have great support options so give them a go.

Stay strong and reach out to this supportive group.

Sassyjax1 profile image
Sassyjax1 in reply toChumpiechops

Do you know the cause of your tinnitus? My GP says there’s usually a cause for it.

Chumpiechops profile image
Chumpiechops

Not 100% but it seemed to appear after I had Vertigo last Easter (2022). Only in the left ear and I only have minimal hearing loss.

Sassyjax1 profile image
Sassyjax1 in reply toChumpiechops

Ah ok, mines after an op 5 weeks ago. My head was under pressure. It’s been a weird mix of sounds. Started with distorted voices and sounds, then a weird droning sound in my left ear. Ear feels blocked. The droning noise has dropped right down. Got the continuous buzzing/whooshing thing now though. It messes with my sleep. Hoping I will start to desensitise eventually. I don’t want it defining my life.

Chumpiechops profile image
Chumpiechops

I hope you do, I was first of the opinion I could no longer go to sporting events and gigs but I got some great ear buds and enjoy both again now.

Sassyjax1 profile image
Sassyjax1 in reply toChumpiechops

That’s great! I would use ear plugs even before tinnitus.

JC2503 profile image
JC2503

Hi Sassy, Sorry to read your story. Mine is similar. 2 weeks ago I suddenly got non-stop Tinnitus.

However, in my case, I phoned a friend and used a bluetooth phone headset that goes "in my ear". After 30 minutes talking, the Tinnitus was barely noticeable. I actually had about an hour of rest! Tinnitus was there but extremely hard to hear. Of course, It came back and is worse at night but there are things you can do. I am NOT saying this is a cure but it has got me thinking about causes of, and controlling my sysmptoms.

I went private for ENT as the wait list here is 44 weeks! No hearing problems were found. I also had a hearing test and it came back fine (Slight loss but nothing of concern).

I also see you've done the same as me and scoured the internet for answers. As another forum member mentioned, go careful as there are a lot of snakeoil salesmen. However, there is a lot of good stuff out there. There are searches and trials for better treatment, some in phase 2 stages.

Have a look for this one:

sciencedaily.com/releases/2...

And finally, the tinnitus.org.uk site has a breakdown of supposed treatments and their efficacy! Helps you realise there ARE answers and helps you keep away from the snakeoil.

All the best - You are NOT alone

Sassyjax1 profile image
Sassyjax1 in reply toJC2503

Hello, thanks for replying. My ears actually feel sensitive to the touch and clicking every time I swallow. If I blow my nose one of the ears really pops. I’ve tried to keep occupied as best I can after my op. I am too scared to go for a hearing test. My symptoms came on after my op. It started with loud droaning in one ear. That’s now disappeared but I have the continual whistle white noise sound. Only bass sounds affect my hearing - nothing else. I think because it’s relative to my op that I have made myself believe it’s permanent damage and I’m only going to get worse. My GP has done an urgent referral for me to go to a vestibular specialist. No idea how long that will take.

JC2503 profile image
JC2503 in reply toSassyjax1

Hi Sassy, I feel you are so exhausted with your tinnitus you're making it worse. I felt the same. I was punching walls, screaming, crying, shouting. All manner of things but I decided to fight the result of my tinnitus. In other words, I don't fight the tinnitus, I fight my reaction to it.

You really should get a hearing test! Imagine this - You're audiologist finds a gap in your hearing. They recommend some form of hearing aid which in turn, reduces your tinnitus! Much of the evidence I have seen points towards hearing loss as a cause. However, you have had a recent operation so you need to exclude hearing loss as a cause. The likes of SpecSaves do free hearing tests. There are also other private clinics that offer free hearing tests. I'm booking another one next week as they offer a Tinnitus consultation, all for free. You need to look to see what is around your area.

Hopefully having your kids back home will help but it's down to you. You CAN do this. I thought I couldn't cope and I do struggle at times but I'm getting there! Slowly. One step at a time.

Sassyjax1 profile image
Sassyjax1 in reply toJC2503

If it wasn’t constant, I would cope better. Sleep is awful. I think reading on here about people who have it all the time isn’t helping me. I wish I could turn the volume down on mine. I had my daughter for 2 hours yesterday and she was full of life and I was feeling sorry for her as this awful condition is going to affect her life. So unfair. I dread her gymnastics meets, concerts, parties, etc now. You say you car “coping”, that word fills me with dread. I want to “live” not “cope”. I think the trauma of getting this after an op has consolidated in me that it can’t possibly get better. I have read repeatedly that people say “it does get better”, but I don’t see how.

Portland135 profile image
Portland135 in reply toSassyjax1

YouTube has great Tinnitus masking videos to listen to...!I like the chirping crickets ones..

Peroni_51 profile image
Peroni_51

Hi, my tinnitus is 24/7 continuous, Iv had it for years, hopefully what your experiencing is something to do with your op & it will soon subside. All i can say is try not to focus on it too much as when you do this it seems to make it worse, Mine is best when Im focussed on doing something, a hobby, work, enjoying some music, talking to my wife or friends, hope this helps & you feel better soon.

Sassyjax1 profile image
Sassyjax1 in reply toPeroni_51

Thank you for replying. I think if it wasn’t continuous I would cope far better. It’s like my worst nightmare. I’m glad you have found your way and enjoy your life regardless. Just concerns me that not many people have habituated.

Kellythecat-74 profile image
Kellythecat-74

You would be amazed at how many people you know , do have it . Those who have had it for years no longer talk about . They often don't even notice it anymore. Sadly at first Mr T is all consuming , you just want it to go away. That causes stress, one of Mr Ts best friends. Mine is 24/7 high pitch. I use a pocket radio with earphone. Talking programs works better for me than any type of music. In a way, researching and trying new methods , kept me going at the beginning. A year down the line, I can ignore it a lot of the time. Do you notice it as much when you are running around with you daughter, or really busy ? ,

Sassyjax1 profile image
Sassyjax1 in reply toKellythecat-74

Hello! Thanks for replying. My T’s changed in the last 2 months. It’s gone from static noise to high pitched ringing. I had started to habituate just before this happened. Now it’s fully back in my focus. I’m devastated.

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