I’m afraid I’m in quite a state about my T. I’ve had it over 18 months. Sudden onset, no hearing loss. Others who have seen my past posts will know better how I think I got the T. I do have it 24/7. However, 5 weeks ago I noticed the T get a lot worse. I haven’t been ill ior anything. The last time I had what I now call my “regular T” was the 3/12/24. I have a spine condition, but that was about 12 years before i got T. So basically, I noticed that from the start, my T changed every so often. I had the same sound and tone for around 10 months at the start. Then, a year ago it changed again overnight to white noise and a whistling sound. A few months later in the Summer of 24, it changed again and got I morse code and an alarm sound. The T was noticeable and most nights I needed a bit of background sound, so I used sleep meditation talk-downs to sleep. Fast forward to a moth ago and I’m now an anxious mess again. The T hasn’t ever been this loud. I noticed it in my left ear first. Then, yesterday, my right ear got much louder too. It’s the sounds I hate more than anything. Listening to constant Morse code and an alarm is really upsetting. Nothing like this has happened before. It’s so much louder. I had reached the point where the volume was ok, during the day, to be in the quiet, as long as I was occupied. Now I can’t have quiet at all. I’ m really terrified that this is just going to get worse as I have never experienced my T getting significantly better. I’ve started all the constant googling again. I don’t know what to do. Trying to stay calm, I tried to talk to others who have T, but they say they’ve never experienced what I am explaining. I thought T was supposed to get more manageable, but mine is getting worse constantly. I have had hearing tests, blood tests, MRI’s of ears and brain, but no cause was found. I get somatic T foo - which terrified me initially, now I just find it an annoyance as it’s only when I clench my jaw or move my beck in a certain position and is a different sound to the changing T I have usually. I have the worst crescendo going on in my head right now. It just gets gradually worse all day. I wish I could go back a to a month ago to the level of T I was trying to cope with then. I’ e had CBT & EDMR therapy last year. I’ve protected my ears when I needed to. I’m now spending every chance I get googling to see what’s caused this. It’s really intrusive. I keep panicking & had only just got to a point where I was enjoying my home again. I will never habituate with this charging T. My 11 year old daughter has been really upset seeing me regress into the shaking mess I was 18 months ago. I keep lining in false hope that the T will go quieter and I will habituate. This has never happened for me. Mind just gets worse. So what most people experience as a spike, I experienced as a permanent change in my T. Waking up today with it in both ears has got me very upset. It’s getting worse by the day. I can’t keep trying to find the possible illness that has caused it to be so changeable and intrusive. It’s the worst its ever been. I’m at my wits’ end. So sorry for the long post. I have given up.
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Sassyjax1
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I'm really sorry this has happened to you. It sounds very difficult to deal with. We all have T and to a greater or lesser extent we get on with trying to lead as normal a life as possible. Then, just when we think we're getting a handle on things the bloody T goes and moves the goal posts . . .again - as it has for you. That's rough, it feels so unfair and does its best to deplete those stores of vital self-resillience that we've spent so much time and energy putting by. Bloody tinnitus.
But lets take a moment and come at this from the opposite side; you've been with this for 18 months or so and during that time you have obviously done a great deal of hard work on yourself - finding coping mechanisms, solutions to navigate through the various waypoints of the days and nights - and, you say, they have been working well. You've been okay.
Well, the good news - and it is good news - is - you will be okay again.
Whenever the T changes radically it has the ability to take our feet from under us and make us feel like we're starting the whole nightmare journey from the start again. This simply is not true.
Remember - that's just how we feel - and feelings ain't facts.
Reading through your post above I see strength, hope and determination. A bump (or major pot-hole more like) can appaear to scatter all of those things but they don't.
Go back to basics, practise breathing, meditation, the other excellent coping strategies that you have created and refined - let them do their stuff. They can and do work.
This is a tempoary period of adjustment to the new T sounds you are going through - you will come out the other side, stronger than you were.
The morse code stuff is a common T sound. I have it too - I call it my crickets. Take a look here:
It's just the sound of vessels dilating that your nerves are vibrating to. It will come and go but you will get used to it. I have it right now as I type this. It's the sound of me being alive.
Take heart that T sounds often change as we do - they wax and wane - we have loud days, we have quiet days - see them in equal measure for what they are. Difficult days and easy days - both there to contrast one another.
Do please talk to your GP about having some tempoary respite from the grind - bythat I mean Diazepam or some sedative - just to give yourself a few days off now and again. My GP and I call it "Hitting the ejector seat" - 4/5 days on a low dose of Diazepam gives me a break from the sounds, allows me to collect myself, dust myself down and work out where I went wrong with my habituation activites.
Thanks for your reply. I’m already on Amitryptiline & Mirtrazapine. I can’t cope with this volume. It’s too much. I thought T was supposed to get better. Eventually, at this rate, I won’t be able to hear my daughter call me “mum”. So this isn’t a spike is it? I’m getting worse.
I've been talking to a lot of people recently who have been reporting a longer spike in their Tinnitus. I myself have had one alongside a cold - which only presented as a headache - and then after about two weeks a slight cough. There's some odd stuff around at this time of year - it could be you've had some low-level infection - and that will definitely alter your Tinnitus - generally making it worse, sometimes much worse. The cold might even be long gone but the T will take much longer to climb back down to lower noise levels.
You will always be able to hear your daughter's voice as T doesn't work like that. However shrieking it is - it cannot occlude outside sounds of the real World. It can only appear to do that if we become fixated on the T.
Still talk to your GP and explain what's going on and how those two drugs you are on are not cutting through your anxiety and that they're not giving you sufficient distance between you and the T. A tempoary different drug-plan might be in order.
Thanks so much for your kind words and support. I haven’t cried over my T for months, but I am today. If it wasn’t so loud, I would cope better. My left ear has always been the loudest. I’m dreading sleep so much that I stay up so late. Really doesn’t help as I still need to get up for my daughter as I’m a single parent too. The other day she mentioned she gets what I presume is fleeting tinnitus, now and then. I went into blind panic. Not her too! I saw a tinnitus therapist who gave me an exercise to do where I am supposed to just listen to my tinnitus in the quiet. I can’t do it with this new volume. It has literally floored me. Nobody tells you that T gets worse. They say it gets better. So I realise now that I will never habituate. Anyone I know with T says theirs never changes and rarely bothers them. I wish!
That doesn't sound an unreasonable approach to your condition. Don't have a go at yourself about how you are responding to it. It IS tough- it really is. It's hard bloody work and all of us can get it wrong sometimes - no-one more than me. It can regularly reduce me to a crying wreck curled up on the floor. But, as I have learned - good days follow bad - that's the only way you know they're bad days - because you have good days - and you WILL have good days going forward.
Two things - I wonder if your daughter is just trying to reassure you by saying she gets it occassionally - she wants to make mum feel she is not alone with this. Kids do this.
And - yes, - we come here and predominantly we read that people habituate and it gets better - but why? because it does. I've chatted to peole here who have described their tinnitus and I have thought - Holy F*** - I could not handle that. And then again, on a bad day I challenge anyone to stay sane if they could hear the racket I can hear in my head.
Overall the general message is one of recovery here. Listen to the message - even from people who report that the T is getting worse - the overall trend is recovery. You will recover and be able to go forward. you're just having a crisis. It will pass. That is a promise.
In the mean time remember the numbers - the Tinnitus Helpline is shut for the weekend but the Samaritans are there 24/7 - and they want to hear from you now, not later on but now - if you need someone to talk to. Get your support network in place. Friends that are unconditionally supportive, who will just be there for you - a shoulder to cry on at the very least. Help is out there, rest assured.
Keep posting here, vent, ask questions. People here have not all done the perfect habituation job on themselves - or they wouldn't be here would they?
All of us have learned the hard way that we should strive for progress - not perfection.
Your kindness towards me is just wonderful. I’m usually so tough, but here I am, crying at your words. I think maybe you are right about my daughter’s reaction. She tells everyone about my tinnitus. I see her anxious over it when I’m really disgruntled and snappy. I can’t forgive myself because I have allowed it to affect her. I’m sitting here listening to it get worse by moving my neck & jaw. I thought I was over hearing it somatically. That was only in my left ear. Just been testing it and it’s now affecting my right ear too. So now I’m panicking that the T is only going to get worse as my spine condition does. I’ started putting my fingers in ny ears again too. I stopped that for many months. I’m constantly taking my blood pressure too incase that’s made it worse. Can habituation still happen with all these things going on?
Oh yes. Habituation not only CAN but WILL happen. You WILL overcome this tempoary setback. You are already coping with it - you are posting here. You're taking action. You are gaining control over things. Give yourself a break - take a moment to acknowledge you are doing the work. It will pay off. It will take some time but it will.
Do the exercises and activities that you already know how to do. Do them meaningfully. They will work.
Your daughter will forget the Tinnitus you have as quickly as you adapt to it. At some point in the future she won't even remember it as anything other than that thing mum had for a while but got over. This means you. You will get through this.
I’m ashamed to say I’m really crying. I feel so selfish bothering anyone with it. I just want it to be quieter. That’s all. Seems like a small ask. I just messaged a friend I know who has it and she said she rarely hears it and it’s not important to her. She doesn’t get somatic T either. She’s telling me not to focus on it, but I can’t avoid hearing it. It’s impossible. My family are completely dismissive of me. “Get over it. “Get a grip”. I have another friend who has had it 40 yrs since he had grommets fitted as a child. He said he never hears it unless he’s ill. I’m so embarrassed that I don’t cope with it. Feel quite foolish that I had adopted a “live in hope” attitude to it. Anyone I know who has it says “oh mine’s not as bad as yours”. Then they dismiss me. My best friend saw it break me and literally cut all contact with me. She visited me in hospital after one of my spine ops and told me I had “no hope in the state you’re in. Then proceeded to tell me she hears fleeting tinnitus a few tones a yea, so if she can cope, so can I.
Thank you for offering such comfort. Your intelligent input has given me food for thought. Sadly, my condition is spinal stenosis. It only gets progressively worse. I had the condition for 12 years before I even got T. My T started 8 days after my first lower spine operation. The surgeon caused 2 brain fluid leaks. The first one she repaired during the first op. The second went undetected for 12 weeks and I was left alone to cope as I wasn’t being listened to. I ended up having another op to repair the second leak. 5 days of lying in a hospital - forbidden to move as the fluid was being drained into a bag next to me. Not even allowed a pillow to raise my head. All I heard was my T. Couldn’t escape it. I found it odd the T started when I returned home after the first operation and never corrected after the second as they promised me it would. They still say my neck isn’t the cause of the tinnitus. They did a brain scan whilst I was still in the hospital. Apparently couldn’t find the cause. But they never found the second fluid leak either - so I don’t trust them. So I guess I’.m caught up in this cycle of thinking it’s my condition causing the tinnitus and that it will only get worse because my condition will. Which is why I think I will never habituate.
Do you do some regular physio for the Stenosis? With Somatic it's often a case of hunting around - trying different physical approaches to see what can minimise the T sounds. Takes a long time to get the hang of it but you will. For me it's walking - at the correct pace - if I go too fast my T will be screaming the next day, etc.
I'm also aware that if I rotate my head up too much on my shoulders then that'll cause a spike. These things are second nature now but they took a long time to establish.
I’ve Craniosacral therapy. It’s been really tight lately. My latest scan showed the spinal cord is impinged there, I’m too scared to have any steroid injections there incase it increases the T even more. I live in south London, so I took my daughter to central London yesterday to be a tourist in our own city. Literally my neck locked up. Lost feeling in my arms. This has happened a lot of the years. Yet I never had T. I keep having hot baths to try to help.
I'm afraid I simply don't know enough about the condition to be able to offer anything meaningful in terms of knowledge about the subject. But that locking up that you had must undoubdetly be from the tension (and stress of central London) I used to live there myself, now I avoid there as much as possible!
The steroids might indeed increase the Tinnitus but then again, they might not. Have you discussed this with your specialist and maybe talked about an especial approach initally in order to monitor the Tinnitus and Steroidal interaction - if there is any?
I did ask him and he shrugged his shoulders. I asked my GP also, who had no idea. He simply said: “if it does make it worse, you will have to learn to live with it”.
Both of those responses are wholly unacceptable responses from medical professionals though depressingly, predictable.
This is the sh*t that we have to deal with I'm afraid. You are quite within your rights to ask for a second opinion from another Spinal Stenosis Specialist. Have you looked elsewhere on here and wider afield at any other stenosis forums to see what others before you have reported?
I'm afraid we have to be our own top research scientist when it comes to our condition. I've been in meetings with ENT Connsultants when they have candidly admitted I appear to know more about a particular subject than they do. No trace of sarcasm - they've meant it. I 've had to do deep research in to Cervical Injuries complicating posterior cranial fossa trauma, etc.
In my old life I was a project manager in theatre, film and TV. After this happened I had to make my Tinnitus the project. I've been doing that ever since.
I’m so sorry to hear this. I take it an accident has caused the tinnitus? Has it been a while since the incident? Sorry for all the questions. I’m hoping that you have habituated and that it no longer bothers you as it did. Does this mean you have actually ended your career because of the T & have you got a new focus?
My Tinnitus was there when I awoke in Hospital after the accident. That was nine months the day after tomorrow -ago. Never had it before. Yeah, sure, the odd moment of some ringing in the ear, etc. But when I came to in hospital I had the sound of jumbo jets in both ears, with the crickets (morse) and the pulsatile somasensory, etc.
I was under very heavy sedation for the first few weeks. It was life-changing in so much as my life changed beyond all recognition from that moment. My old life is something I don't really have anything to do with. I don't even believe some of the things that I've done in my career - even though it's plainly me in the photos.
My life these days is about Tinnitus and living with it. I knew the moment I heard it that it had to become my whole life because it was going to take everything I've got - and I mean everything - to have a standing chance of living with it. That's my life. I too have a daughter and an ageing mother, a brother and his family. They all want me to stick around. That's my job - to stick around and be there for them. So there's no debate about making an exit through the big white door. Not an option.
I work with other people who have T. I volunteer at hospitals helping those who are new to it. It is my life.
You are going to be okay - you're here - asking questions, making connections, putting support networks together. These are all really, really good things that will stand you in good stead. Just keep going.
We've all got friends who drifted away - sometimes they just can't bear to see us dishevelled and in pain. I had a very good friend who upped and walked out of my life when I got Tinnitus and spent months in extreme distress. They can't handle it. Our friends have a mental projection of us - how they see us - when that is changed radically or even broken - they can't handle it. I promise you this - you will make new friends. That's part of it being life-changing. And the friends you will make know you now. This version of you. I've made friends with people here, and elsewhere, good friends - they're part of my recovery and in a small way - I'm part of theirs. That's how it works. Symbiosis.
Soamatic Tinnitus has but one thing going for it - over other forms of Tinnitus - such as loud-noise damage, etc. Somatic Tinnitus is constantly being repaired by your body - because it's physical in origin. As your spine mends so will your Tinnitus correct itself.
Everybody you speak to reckons they have tinnitus to one degree or the other. I had an old sound engineer friend help me make a Tinnitus track that closely resembled the sounds I can hear. I used to play it to people on my phone when they said they had Tinnitus and I was over-reacting. I'd watch as they listened and their mouths fell open with the horror of it. That shut them up!
Have you discussed hearing aids? I got mine about three months ago - they have been transformative. I have hearing loss from the accident which the HA's fill in the gaps. They can also play masking sounds and anything for that matter via bluetooth.
They don't make my Tinnitus all better all by themselves - they're just another tool in the bag. Another weapon in my war against the T.
I feel your pain as I too have changing sounds and pitches. My advice is stop googling it highlights the problems. Gives no solutions and makes anxiety worse
T is there, we have to accept it and focus on other thoughts Really concentrate on anything that interests you or your daughter. Whilst your diverting your thinking you will become less aware of the awful T.
I've had t for many years, been trying a recommended treatment of tapping the back of my neck with my four figures 20x eight times. Surprisingly effective. If this doesn't work for you try taking, Benfotiamine.
One of the triggers for making my t worse seems to be chocolate. Excess sugar is linked to the root of nearly all heath issues.
So try reducing the amount of sugar in your diet. And of course it goes without saying don't use vegetable oils to cook with or as a spread.
Make sure if you use olive oil it not fake. Buy a quality one that can be traced to regen its grown in. Apparently its one of the most faked foods. You really don't want to be eating toxic vegetable oil .
How T (or anything else) affects you, me and everyone else, is 100% related to how much of your time you spend thinking about it and then the rating you give it.
I used to focus on my T all the time and, as a result, rated my T as very high, and needed Benzos to sleep.
The epiphany came 6 years ago, only when I started thinking about others’ far worse problems, and slowly, the rating I gave the T started slowly dropping. From 50 to zero.
And, as a result, no benzos needed to get to sleep for over 6 years now.
Ahhh thanks so much for this. I got woken by it last night a fair few times. Crazy loud. As soon as I get up and start moving around it drops down. Trying not to google.
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