I thought, up until the end of last year, I was starting to get used to having T. I’m now 11 months in, the T got suddenly worse several weeks ago and my anxiety is through the roof once more. It’s seriously affecting my life. I have had 26 sessions of CBT, had Cranio-sacral therapy for the best part of a year & seen audiologists and ENT’s. Nothing wrong with my hearing, so was discharged by ENT. Since the T has increased I have begun my old rituals of checking the T constantly, talking about it to my family & friends all the time and trying desperately to stay distracted. It’s totally T-focused activity. After having a continuous tone for months that was audible in a very quiet room, etc, I now have louder ringing that’s noticeable all the time. I am on Amitryptiline for nerve pain and Mirtazapine for anxiety. I was on the meds months before the T got worse. I don’t know what’s caused it to get louder and really scared that after weeks & weeks of it being louder, it’s not a spike. I have driven myself to distraction with what’s caused it and my fear is it will continue to get louder. A friend of mine said her T got louder within hours of increasing her anti-depressants. She came off the higher dose immediately and her T returned to baseline. I am to scared to come off my meds and if they aren’t the cause, then I could and most likely will have side effects which could cause me even further distress. A relative said to me last night that it’s unlikely I will habituate as it’s probably just going to get “louder & louder & louder” I was so anxious after her saying this that I was physically sick. There’s numerous things that could be the cause of my T, but I can’t mess about with meds as any side effects could impact my 10 yr olds life sks. She’s really scared when I have my panic attacks and her school say she’s talking about tinnitus a lot and is highly anxious about the fact I have it. I completely broke down yesterday and can’t even sleep. I have sound maskers that I use when at home, but I feel so depleted and scared I won’t habituate when I don’t know the cause of the loudness. So sorry for the long post, but I am desperately trying to stay away from the forums & social media pages as the horror stories make me feel so much worse. I saw a neuro psyche a few weeks ago who told me that the brain is good at healing. I have been told by my family not to contact them as they don’t want to hear the word “tinnitus” anymore. I need to “get a grip, find a hobby, ignore the sound”. I can’t ignore what’s 24/7 and gone so louder. My friend with mild T suggested I “stop taking all the meds incase it’s that”. I’m worse off now than I was when the T started. My GP advised that I should not stop any meds and they they are not necessarily the cause of the T increasing after so many months of being on them. Sorry this post is so long.
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Sassyjax1
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Hi - I’m sorry to hear you are having such a terrible time just now. I’m sending understanding and a big hug to you. Other people with the condition do care how you feel. It’s a shame your family can’t be more supportive but people often find it difficult to put themselves in others shoes and can be insensitive. Ignore your relative they are talking nonsense. I’m guessing you need to get through this panicky phase n put your cbt into practice again. I get the searching for distraction all the time - me too! I’m listening to woman’s hour through my hearing aid at the moment. I know of a form of therapy where you find the small moment where you feel calm and then try to recreate this moment in other situations as much as possible. So you are finding the moments where you feel calm n then trying to build out from that so you create more time when you feel calm. I also divide days into morning, afternoon and evening so you can have a good morning even if you have a bad afternoon. That way you don’t feel like the whole day has been bad if you are finding things challenging. Dealing with any condition makes you a more rounded and stronger person with a lot to offer others.
Thanks for your kind words. I’m so scared of T and scared it’s going to get louder. I just tried to reach out to a relative as I’m so anxious and, because she saw me so distressed yesterday, she told me to pull myself together and stop having these “mad turns”. I literally cannot face anything that causes me anxiety. I try to about everything incase it makes the T worse. I dread each day as life can throw anything at us & my life is already stressful as a single parent with disabilities. I can’t see a way forward because of T. Thanks for your kind words of support.
It’s good to reach out though - Maybe your family feel a bit helpless n don’t know what to say. Maybe you don’t want them to say anything - just to give u a hug/ help with childcare etc. I get the stress - I am a single parent too. I know someone who has felt better after the right anxiety medication. The catastrophising is part of the natural cycle of the condition n you will get through this. Take care.
Thanks so much for your support. A few in my family don’t believe tinnitus is “real” & that it can’t just happen. Well we know that it can & it does. An aunt suggested that she’s noticed I was “wired wrongly from birth”. This is her take on what’s commonly known as anxiety to the rest of us.
yes - part of the problem with the lack of research into tinnitus is that it’s all too easy to suggest it is ‘all in the mind.’ If you think that it can take about 8 years for women to be correctly diagnosed with endometriosis - they will be told it’s in their head. Men get fobbed off as well when trying to get conditions diagnosed. To me, coping with tinnitus is the same as pain management - we need the appropriate strategies n support in place. Your anxiety is a factual thing of course which lots of people suffer from! I’m off for a well-being walk with my dog now. Look after yourself.
hello,sassjax - I immediately recognised your name from past posts.
Firstly, we here all sympathise with you, I know. And I expect most of us are thinking that your relatives are less than helpful (well that’s the polite way of putting it).
when you posted before you were given some brilliant thoughts to help you. Perhaps you can go back and read these posts?
I’ve probably said this before but I’m saying it again - you may never know what caused your T in the first place (I don’t about mine) so trying to think back about it isn’t helping you. It’s gone and you cannot change the past. And being fearful of the future is natural but we cannot know what is going to happen in the future.
Please don’t look at Facebook forums - I had a quick Look a few months ago and I found one or two of them profoundly depressing - avoid!
Hi Rosie,Thank you once again for replying. I’m staying off the forums. This is the only one I visit now. I’m just not coping at all at the moment. I was foolishly optimistic around Christmas time that this would improve. I know people are avoiding me the last 6 weeks since it got louder for me. They don’t want to know about something they don’t have I guess. I don’t have any strength for this anymore. It’s got me into such a bad place. There’s no joy in anything at all. I have forced myself to do things and never look forward to anything. I dread everything and my relationship with my daughter is under strain as she’s starting to ask to stay with relatives rather than be around me. Tinnitus has isolated me fully.
Hi, I can totally relate. I have had nonstop head tinnitus (high pitched white noise) for 11 months, it's so loud I can hear it over the TV, in the car with the radio on, in the supermarket, outside, in the shower... I had microsuction on my right ear 4.5 months before it started and I beat myself up every day about that being a possible cause. In addition, I developed an intermittent low drone head noise shortly after 1 vaccine in May 2021 which i still have.
Like you, I have a disabled child (severe autism, nonverbal, doubly incontinent, needs 24/7 supervision). I can't take meds because the side effects would impact my ability to care for him and he doesn't sleep through the night.
I don't have any answers for you but I face the same problem of relatives not understanding. I try to explain my distress and obsession with the constant head noises to my twin sister but she doesn't get why it's so distressing.
Getting through each day is like wading through treacle and I can't wait for bedtime as it's my only respite from the noises. I get what you're going through!
Hello. I really feel for you. I don’t know how people get through this or live with it as a constant. Audiology have given me sound maskers, but not really said anything about how I should be using them or when, so I try to use the them when home in the quiet. I thought I was turning a corner a few months back, but my T has increased and I don’t know why. I was becoming optimistic that things works improve. Only to find they got worse. At the moment I have been trying to take on board the positives that are out there. I attend a Tinnitus UK meeting once a month if I can. Very supportive on there. I have Julian Cowan Hill’s app too. He’s extremely passionate about how things can get better. I just worry all the time now that mine is going to get continue to get worse. I wish I could go back 7 weeks to when it wasn’t as bad as it is now. It’s been 11 months of utter misery. I don’t handle stress well anymore as scared or will kick the T off even more. Those who I know with T don’t seem bothered too much about it. But they all know what caused theirs. I watched Jamie Laing and Susannah Reid discussing their experiences with tinnitus. Jamie said it gets better. I can’t see it. It’s really thrown me having it change for the worst this far in. Constantly trying to distract myself from it is like a full tone job in itself. How are you coping? You have a lot to do as it is.
Not coping at all. Tried some hearing aids maskers from audiologist but found them uncomfortable to wear and they kept blocking. Can't believe 11 months in it's still nonstop. I really hope the microsuction isn't the cause. The audiologist said the 4.5 month interval between the microsuction and newer tinnitus onset was too long but after the procedure, which hurt, I had to get ear drops from the GP which suggests there was some damage. I have had 2 online sessions with Julian Cowan Hill, 2 online sessions with a top audiologist, no further forward. I might try the oto app (CBT for tinnitus) but I worry my tinnitus is too severe for habituation to happen.
I can understand you being concerned it’s the microsuction. I do think 4.5 months after is a long time for it to be that. For example, my last covid jab was October 22. My T started beginning of April 23. I don’t attribute it to the jab because I never had tinnitus until what happened after my op. I was wondering maybe if there’s been some underlying stress that could have triggered yours? I believe stress was a contributing factor for me. Without a doubt. Have you had no quieter days? Have you checked for possible TMJ? I have TMJ since my back op as the op is done face down and held in position so there’s no movement during the procedure. So my head and neck were under pressure for several hours for both my ops. Maybe get your dentist to check it out. Maxillo facial Dr gave me exercises to do. I know it’s really difficult to cope, as everyone’s experience is so different. After a recent follow up with my surgeon, he told me he has tinnitus and yet can operate and be around so much noise - especially in surgery. His must be extremely mild and he says he hears it in the quiet mainly. He never has a spike though. Very lucky. He had no idea what habituation was either. He first said he got it from stress of exams when growing up. Then said it was from going to carnivals. He clearly had no idea. He annoyed me so much with his flippant attitude towards mine that I asked him not to speak to me about it. I’m avoiding the forums for now. They aren’t helping me.
It wouldn't have occurred to me to link it to the microsuction until I joined Facebook tinnitus group where a woman said she got severe head tinnitus after microsuction. I so wish I hadn't read that. It's possible a build up of stress has contributed - my mum died in October 2022, in January 2023 we had a mouse problem in the house (am very phobic) and I remember shortly before the April onset watching a horror film which got me so worked up my palms were sweating. This on top of raising a disabled child and 3 other teenagers. Sadly no, I don't get quieter days, it's loud all the time. If yours has got louder, there's still every chance it could go back down I think if there was no obvious trigger for the increase
Re TMJ, not sure although I do remember waking up with a clenched jaw around the start of the nonstop tinnitus. I feel like my nervous system is permanently switched onto max setting if that makes sense? I jump at the slightest sound and when I rotate my head I can hear all my neck muscles crackling. Bizarre.
I can categorically tell you - without a doubt that you definitely have a lot of stress and anxiety built-up. When my T came I had hyperacusis too. It lasted 3-4 months before dropping down. Even my adult son’s footsteps on carpet made me wince. I could hear cars driving from 4 roads away. The first time I started my car after my ops sounded like an explosion going off. I gradually de-sensitised to the hyperacusis. Our nervous systems are intricate and complex. It never occurred to me before now that our ears could bear the brunt of our stress. It’s not even our ears. It’s our brains. Tinnitus can be exacerbated by the limbic system as they are closely linked. Dr Lawrence McKenna has written a helpful book on Tinnitus & Hyperacusis. Might be worth a try.
Thanks I will look up that book. My right ear (the microsuctioned one) has started to feel sore ever since I read about the woman on Facebook who got tinnitus from microsuction and started obsessing about the link (we're talking 15 months since I had that procedure). The power of the mind? Anxiety?
That's encouraging the neuro psychiatrist said that. The common experience for those who have habituated is that once they stop caring about the tinnitus, the noise moves to the back of their brain so it's as if it's in another room and only peripheral in their conscious awareness. Just can't imagine getting to that stage.
I think I was getting there before mine went louder. My sister has tinnitus from an ear infection. I never knew until I got mine and she mentioned it. She shows it no fear. “Put it in the corner where it belongs”. That’s what she told me. I know someone else who has had it 35 yrs and never hears it. He even does adrenaline sports like parachuting and base jumping without a second thought for T. He’s got quite a narcisstic personality so he no doubt has seen the T as being of no importance. This time he’s really right.
You are not alone and not mad but sadly you have a very unsupportive family. Please stay away from on line forums they are not helpful and I consider dangerous. The only website I would recommend is Tinnitus UK. Join one of their on line monthly support groups and you will get amazing face to face support and help and be with other people in the same situation who know and appreciate exactly what you are going through and can offer good practical help. Things will improve for you, it may not feel like it at the moment. Take care
Thank you for your supportive words. Right now I’m in the quiet of my living room listening to the constant ringing/whistling that has taken over my life. I go out and see people having fun, etc & I am there wondering who out of those has tinnitus. I have a close friend who I didn’t even know had tinnitus at all. He’s had it since a child after some minimal hearing loss. He says he can’t really hear it anymore. He says it only rears it head when he has a cold and then it disappears again. Yesterday, I asked him to listen for it and he couldn’t hear it. He heard it when he put his finger in his ear. If I do that I get way too anxious. He’s just not bothered by it. I can’t imagine getting to that point as it could be anything causing mine or making it worse. Since the volume ramped up a few weeks ago, I started to get more of the sharp, raisin mini-spikes too. I hadn’t had those for a few months until this sudden change. What was interesting to find out was that my friend who thought he didn’t have it all the time, surprised himself that it probably is there as a constant, but he only found that out when he put his finger in his ear & heard it immediately. I’m trying hard not to do that as it probably draws more attention to the T. I can’t believe that a month from now I will be a year into this and it’s got worse for me instead of better. Someone told me I can’t habituate when T shifts & changes. That knocked me back too. I’m stuck in fight or flight now, which is pretty rubbish as I had a few glimmers of habituation happening a few months ago. I have lost who I was.
I think you have to ask yourself what you are getting out of the t-focussed activity you mention in your posts?
You're wanting to move on from it - from being distressed and constantly aware of it - but your thoughts about tinnitus are making it so much easier for you to notice it and be worn down by it.
As Kenenu says elsewhere in this thread - using some of the CBT practices and ways of thinking about tinnitus or other issues will be helpful in letting you manage the situation that you're in at the moment.
Moving past the fear - which a habituated person like Julian Cowan-Hill will be the first to tell you - is key. What is it about tinnitus that you are afraid about? A non-specific worry like 'what if it gets worse?' is rarely about tinnitus itself - we could substitute in any condition we live with.
Just as we can become anxious about a situation and be on high alert about it, we can also identify that whatever threat or risk has prompted our body and mind to go into heightened awareness has ended. If we can do that, we can move back from red alert mode and go back into a state where things are not so worrying to us.
With tinnitus, a lot of people attach great meaning and threat to tinnitus, and stay in a state of heightened awareness, attention and fixation on a sound which is ultimately meaningless to us and often only sustained by our unsubstantiated fears about it.
Again, we have to ask - 'what is that fear about?' If it's about a general sense of 'what if it gets worse?', that's somewhat moot as we're stuck here and now, paying attention to tinnitus as it is now, not as it will be.
Why is the default assumption that it's going to get worse?
Hi Pat, thanks for replying. I thinks it’s because it has got louder - (which is what my greatest fear was), that has got me into this current state. It suddenly went up a notch several weeks ago. I went through every possible thing that could’ve caused it and non the wiser and still the volume hasn’t gone down. So now I’m spending all my time terrified that this isn’t a spike at all and that it’s proof things will get worse. I spent the whole weekend trying to distract myself. I try to wear the sound maskers at home when it’s quiet. I was watching Youtube videos on people who have successful habituated. I thought, after almost a year, I would be near habituating. Now that the volume has increased, I am in complete fight or flight. I’m waiting for the next volume increase to happen. I honestly thought it was a spike at first.
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