I have had tinnitus for 13 months now. No hearing loss. I had what was white noise and eventually was able to sleep hearing it. However, I got louder ringing that started in January of this year that made me very anxious and has remained the same. However, 4 days ago the volume ramped-up and is now louder with yet another droning sound. It’s really difficult to sleep because of it. I am supposed to fly in 2 weeks time and no longer want to go. Just too scared of this new volume and sound. I’m never going to habituate at this rate. It’s clear to me that these are not spikes as the volume and new sound increase from January hasn’t changed and now I have this new louder sound on top. I am so anxious and can’t believe my situation is just getting worse. I tried talking to friends who have tinnitus and they say theirs isn’t like mine. They rarely hear it. They also said I will never habituate due to the constant sound and volume changes. I’m at my wits’ end. I am so worried about letting my friend down as I am so scared to fly now. It’s got louder for no reason, so going in a plane will make it even worse. Habituation isn’t going to happen, so I don’t know how to cope with these continuous increases. I broke down in tears today after the school run. This tinnitus is even making my daughter anxious.
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Sassyjax1
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If your tinnitus came from nowhere then give Ginkgo a try. But its not 3 tablets a day, day after day. Click on my username to see how I did it for occasional relief. Today being one of them.
As others have said I totally disagree that habituation is not possible.
My T consistently varies overtime in volume and I think pitch. I have got used to it generally and that particular aspect of it and whilst its always there in general it doesn't bother me too much.
My route to habituation if that's what I've got to wasn't linear. I'd progress and would then go back a bit.
I started noticing I had a few hours of it not bothering me about 18 months after it started and it's improved from there.
It's certainly not easy. This forum has been of huge help to me.
Thanks Rosie. I don’t know why it keeps getting worse. Thought I was getting somewhere with it. I told my hearing therapist it’s louder and I’m scared and she said “so what? It’s just a sound”.
It cannot hurt you. It might disrupt your sleep, but you will get enough rest. Yes it’s horrid, but then so are many issues for which there’s no cure. A relative’s alcohol abuse. Multiple sclerosis, arthritis. To name a few. All part of life’s rich pattern.
I’m told the TUK helpline is very good.
I too am flying soon, and I shall relish the fact the aircraft noise is one of the few things that mask my tinnitus, so I’ll get three hours of different noise, from the plane.
Thanks again Rosie. It’s the mental stress I find most difficult. I thought I had begun to habituate, but seems unlikely. Weirdly, evening blowing my nose makes it louder. That’s never happened before. I haven’t flown for years, let alone with tinnitus. When I tell people I can hear it all the time they use words & phrases like “torture” and “it will destroy your mental health”. Hopefully I can talk to Pat at T UK at some point before I fly.
Sassy, I don’t know if you’ve read the book Julian Cowan Hill from which I quote
We all know how difficult tinnitus can be, and I want to focus on getting better and how to let go of things. There is little value in focussing on doom and gloom.
Moaning and groaning
Some of you may have a tendency to complain to others about how awful your tinnitus is. You programme people with tales of your suffering until they automatically ask you every time they see you, “Oh hi there. How’s your tinnitus?” You have a chat. Oh well, there’s this negative thing… Oh and you would never imagine, that negative thing… Oh you can’t possibly understand it. It's so negatively this, and negatively that, … and old so-and-so struggled with it for 100 years… and before you know it you are feeling utterly depressed and even more focussed on it than ever. Please be aware that some tinnitus people are ingenious at focussing on suffering and building up a network that reinforces their suffering.”
— Tinnitus, From Tyrant to Friend: How to Let Go of Ringing in your Ears by Julian Cowan Hill
Some of what he says I don’t totally agree with, but there is so much in his book that is valuable.
Oh yes he’s convinced people can get further than habituation. I haven’t read his books, but I did once subscribe to his app. As you say, the negative conversations are unhelpful and others will remember them and then ask about that very negative subject every time. That’s what people ask me: “How’s your ears? Why do you still have it when you don’t have hearing loss?” So I do see what you mean. It’s a cycle I will need to break. JCH said read about the positive stories and stay off the doom & gloom forums. When I was as the GP recently, the receptionist told me she has tinnitus from being with 3 very noisy children under 5. I couldn’t quite believe her - she wasn’t bothered by the T at all. Then she said: “I barely ever hear it”. And so my cycle of “mine’s there 24/7” continues.
'From Tyrant to Friend' is a somewhat profound title, Rosie.
I've had tinnitus for 9 months, and I am now habituated to it. Around 3 months ago, it must be. I live alone, and I think it was Neil Diamond who sang "I never did care for the sound of silence". I've always been a radio man, from that, and constantly use it at home (and when out and about) to mask tinnitus, but originally to mask the silence. I don't use radio all the time. Tinnitus, with its varying pitch, and intensity (although 'loud' is not often, thankfully) is approaching 'companion' status. That astounds me. I still remember the distress on finding I had developed the thing, but there it is - we adapt and survive and sometimes doing just that does not involve the greatest of efforts. It just happens.
9 months. That's great to get habituation I've been told it's 12-18 on average. I'm 7.5 months down the line. I must admit it's not bothering me as much and things that didn't mask it in the early days now so so I'm assuming the volume and intensity has lessened. Was there anything in particular you did to get to this stage? Can you now sit in a room with no TV or radio on and not hear it?? I just wonder if I'm just getting used to the sound instead of actually habituating.
I've now passed the 12 month stage. That is significant as I am beginning to forget what no tinnitus is like. Perhaps that is what habituation is all about. I'm in a silent room now, the tinnitus is there, but so is outside noise. Tinnitus has joined all the other noises out there and that means it's now natural, so to speak. Having said that mine is basic grade with no complications. I hope it stays like that if it has to stay at all. And no, you don't have to do anything to habituate. It comes to you as a gift and it looks like its part of the body's survival strategy.
If I think back to my weekend or last week or last month or last year I don’t remember having tinnitus. Which is good as it is always present with me. I am not sure what habituate looks like or even if I’m there already as everyone handles it differently to suit their needs, which for me is to push it into the background and prioritise my life over it. I accept that I won’t win a fight with it. You wouldn’t let a person make you feel bad and anxious enough to make a mark on your life so possibly if you can, focus on the good things from yesterday and what’s coming up next. I don’t like quiet and have the bustle of life masking my tinnitus. I am excited when flying off to holiday and even go to concerts as I’m the master of my life, tinnitus is not. You’ll find you way.
I've gone back to concerts using loop earplugs but die to fly in November. I've heard horrendous stories about people flying with T. Should I be worried??
A friend of mine has tinnitus and she flew in June with no concerns and again this week she jetted off somewhere. It didn’t affect her T. I would definitely fly again. I think sometimes we need to be mindful of what we believe about different experiences of tinnitus. Let’s think about Chris Martin of Coldplay as an example of someone living well with tinnitus. He has had it since a teenager. It’s not stopped him having a successful musical career & it hasn’t stopped him from flying all over the globe. Still whilst living with tinnitus.
Hi..,,i too have varied pitches and tones, including droning, mine is also somatic, as you have JCH app or have tried it you are entitled to join his fortnightly zoom sessions, they are extremely helpful, not depressing, listening to how others are coping or dealing with their T and his advice has helped me, i still struggle and have bad days but possibly your T is stress related? mine is stress and muscle tension, i am working on all these things, it does take time but we have to address whats causing the T, JCH also has a website where you can email him,
What I want to acknowledge, Sassyjax, is the fear. It's normal to feel fear when it feels like something you can't control, that's getting worse, that is in your head like that, and nervous about flying. I've felt huge fear like that too, about losing my hearing as my tinnitus got worse. It helped me to say it's ok to feel my fear, not to think I shouldn't be feeling it. Best of luck with your tinnitus journey.
Hi, I know exactly how you feel Sassyjax, when my T started the same time as Covid started I was in a very dark place and thought no way could I live with this noise in my head, but slowly over a long time with the help of Calderdale Royal Audiology , members of this forum and thinking about other poeple with far more serious illness life started to get better. T still there 24/7 with a few bad days but now live just a normal life. Not easy but you will get there eventually.
Habituation is totally possible and necessary to live alongside it. I have a similar tinnitus behaviour although mine is linked to high frequency hearing loss, there is hearing and balance stuff in my genes, BUT I have accepted the weirdness of its behaviour, a loud shhhhsssssss with a faint tone underlying it. In the beginning, five years ago it did bother me, and it can still be spiked with certain noise frequencies or lack of. If I make the same noise with my mouth, tongue and teeth, I can actually cancel the tinnitus in my head! However I can’t sit there hisssshhssss shushing all day long! But if I want a few minutes of peace that’s what I do. My hearing aids are great. Can’t reproduce that exact pitch but they do go someway to dampening the sound. Just try living your day and get on with some activity, some gentle background noise of any kind will distract you and that is the start of the habituation process. In the beginning when it bothered my sleep I would nod off in front of the TV or whilst listening to music deliberately which gave me courage and confidence that I could still sleep, now I can sleep straight away with it. This is not something that you can rush you have to shift your negative mindset, stop engaging with the desperation and shift your focus. Good luck
habituation, does not mean you don’t hear it , it is you get to a point where you don’t react to it. I hear mine all the time nothing masks it not even when I on a plane ,
It must take some doing to not react to that level of sound. I really am in awe of some people on here. Yourself included. I seem to react more each time it gets louder.
Hi - You have all of our sympathies' I can assure you. Mine arrived when I was diagnosed with PTSD after a very troublesome and upsetting year ending with the inevitable death of both my parents over Christmas that year. The shock wave that hot me when T started was unbelievable, I think I am a hardy character (or did) but the sleep loss and sheer exhaustion from 24/ 7 T in both ears was a real kick I found hard to take. my local ENT was no use at all, simply they dont want you there as there is no cure. I paid to see Prof David Baguley, possibly the UK best specialist, it was utter desperation. he sat me down calmly got me to reason with what was happening and why this happens. Gave me homework to get me to understand, then plan my way out of the despair I was in. That "process" became the budling blocks for my habituation (at last) and a new rationale. Slowly my despair became acceptance and with the aid of a sleep mask with piped in white noise or audio book (a great help) each night, my sleep returned, so my anxiety reduced to minimal, dont let that anxiety, create a cycle of downwards mood is the key. Even my wife who does not even have T has now embraced the sleep mask and meditation sounds, just for every day stress relief!! I will say this to add, I was prescribed amitriptyline in small doses, it really does take the edge of my T. Im told it does not work for everyone, but I would try it if your doctor agrees? Finally - Habituation WILL come. Buy Prof Baguley's book on T from Amazon. Read it, do the home work. Its all worthwhile. As I speak now I m having a real high level "spike" which is why I am on this page at all today, it happens but usually returns back - I hope so again, and I hope you can habituate soon. keep using this forum . Best Wishes to you.
Thank you so much for your input. I’m sorry you are going through a spike. I hope it passes quickly. I really think your resilience and courage need to be admired.
Thank you. It waivers sometimes , but overall I am in a much better position than many so you have to take what you can from life - remain positive! I hope my input helps you get to where you want to be sooner rather than later
I can relate to this so much I had a little bit of tinnitus but only heard it at night when trying to sleep never through the day. Then mum mum died suddenly. Had to give her cpr was on my own as mum husband was in hospital after taking ill during chemotherapy so all very traumatic. Then got with an awful flu and bang T was 24/7. 7.5 months in and it's not bothering me like it did. When I'm talking I can't hear it whereas the early days I couldn't even have a conversation without it screaming. I've got in with work and just trying to live my life even though still grieving. I don't think the volume is as intense now so I'm hoping I'll get back to how it was originally!
Iv been where you are and yes it also effected my family as well and at the moment my T is very loud but some how no matter how loud it is you seem to get used to the noise so believe me you will habituate,iv had T since 1999and iv been to hell and back probably 3 times, again you will habituate I know at the moment you are feeling very scared and anxious but you will get through this,some people with low tinnitus don't really understand how bad it can get, it can seem hopeless at times but hang in there it will get better and you will cope more and you will habituate.
Thanks so much for your advice. I was so anxious today that my blood pressure is ridiculously high. Up until last year, before I got T, I had low blood pressure. I try giving myself pep-talks, but it’s not easy.
Do not be too alarmed...... if someone had told me that when I first started having tinnitus I would have said yeah, right! However, I've lived it for years now. It's started when my anxiety started. It is part of the anxiety, panic disorder of the brain and it does increase in sound when you're anxious about something. When I tell myself that I feel fine and things are good in my life. My brain and body tells me when I'm anxious not the other way around.... So actually listening to your brain and body symptoms abd giving them care brings the volume down. For several days it will go completely away. And then as soon as I start becoming anxious about an upcoming event. It turns on with much predictability, for example, when I'm off for a week work it's usually gone for the whole week. But as soon as I know I have a shift coming up, it literally starts the night before or the morning of or say I'm going to take a trip, my tinnitus,starts up louder and louder. It may be at a low volume and then, when it gets become closer to the trip, it turns out extremely loud. It's just the way your brain is responding to something that it feels is stressor...i call it my alarm sound.... or even though you may be totally fine with it psychologically. Weird..yep. I've come to the conclusion It's never gonna go away for me, but I've learned to live with it. And what helps me the most is extra sleep and not putting too much on my schedule and taking time out for a wellness routine like meditation spending time in nature.Now I just ignore the sound like before it used to bother me a lot and I went to an audiologist and my hearing is great. I used to think too I am gettj g worse, I've never thought about my brain being worse but that just made Me more anxious and many, many people live with tonight.Us and their brains aren't getting worse.And nothing else was feeling me as far as my functionality went so that's not really matter of fact nd once I've accepted that and learned that it's not harmful.It's so much easier to cope with.
Hello. Thanks for your interesting reply. Unfortunately, my T keeps changing. It was stable initially. I had 10 months where nothing happened to the tone or volume. It went suddenly louder with a new sound in January this year and then, 5 days ago, it went louder and another new sound came along. I’m really fed up of it. It’s 24/7 and I’m scared of how much louder it’s going to get.
I sympathize for sure. Sometimes I wonder if mine is caused by tight muscles in my neck, ear nerve area in my spine? I had an x ray once in the ER of this area and it showed nothing remarkable but it aas only an x ray. There is a web site in the UK dedicated strictly to people with tinnitus if that may be of more support, I went to that web site too.. I just woke up with my close to none tinnitus, just a low rumble by 4:30 it will be louder, it's when I start to get tired for the day or maybe my muscles from posture or work contribute. For a while I wore an ear plug in my left ear to reduce its noise, it worked well. I wonder what your audiologist would say? I pray u get relief Sassyjax1.
Thanks so much for your support. It’s a complicated health history for me. I had cauda equiba syndrome last year. My tinnitus started 8 days after the operation and is getting progressively worse. I have had a c5/6 disc hernistion for 12 years but never got tinnitus, I’ve had brain scans and MRI’s. No nerve damage apparent. I have mild TMJ from the operations. Maxillo facial surgeon said it’s doubtful that’s the cause of the T. Everytime it increases I get more anxious. It’s like I can never plan ahead or look forward to anything.
spoke to an ear nose and throat doctors supposed ,to be flying as well he said there should be no problem with that. I’m taking his advice and taking it with me. The best of luck to you and us.
I hear a light pitch if it's silent or I need to concentrate the pitch comes back. What helps is to listen to some noise that could mask it so I did some recordings and put it in Spotify to help others as well.
Hello! I have complex health issues so each day is a challenge. It was the T that was the straw that broke the camel’s back though. The school summer holidays have been a small distraction. Plus everyone around me never considers my T anyway. Let’s hope they never get it! My 11 year old mentioned she heard it herself recently when she was unwell. It was just a few seconds, but she heard it, I’m dreading the quiet of the house once she goes back to school. I’ve been highly anxious since getting T 16 months ago. My son also gets T when his sinuses and eustacian tubes kick-off. He chooses to ignore it. My T was sudden, loud, traumatic. It also has started to change over the last 6 months. New sounds and volume. I had a session on zoom with a top Neuro psyche last week, and he has given me an exercise to do where I must listen to my T for 10 minutes a day in quiet. Easier said than done. He believes it can’t hurt anyone, that it’s just a sound, that the fear keeps us focused on it. I guess I just have to have faith in him. Fingers crossed!
Hey sassy. Wow. I'm in the same boat. My daughter goes back to school soon and I'm so dreading the quite home. My T is so intense I can hear it over everything. But being distracted has helped a little. I just purchased some 3M ear muffs. To see if I can use when I vacuumed and use blender. I tried them on and they work great but because they are so good my T was so very loud and shrill I took them off quickly felt my head would explode. Ps I see what your therapist is trying to do but because I hear mine all the time. It's pointless to say 10 mins as I hear it all the time. Do you? When I had.mild T I could have done that excersie as I only heard it if I tuned into it. But now it's always there.
Hello! My T is 24/7 and it’s been random and unpredictable. I never had it at all until 16 months ago. Is yours hearing related? I so understand what you are going through.
It’s hard to tell as the second I am in the quiet it scares me. The real test will be 10 days from now when there’s a quiet house again. How are you doing?
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