habituation : Hi all, just wondering how long it... - Tinnitus UK

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habituation

Sassyjax1 profile image
39 Replies

Hi all, just wondering how long it took people to habituate to their T? I have had it 9 months next week. Sudden onset, no hearing loss. It’s 24/7 and sounds like whistling white noise. I have had a terrible Christmas because of the anxiety it causes. I find I can’t relax in my own home even. Sadly, family & friends are so fed up with me being distraught and hyper-focused on the T that they are now starting to avoid spending time with me, My daughter is still very young and is getting distressed seeing me crying every day, I did have CBT via the NHS, but that’s all. I am on an antidepressant also. Just so tired of wishing and waiting for the T to improve. It does alter with some jaw/neck movements. I hear this is common though. I feel like my life is not my own any longer. The loss of friendships has been isolating as my personality has changed majorly due to this. I can’t even relax in my own home as I feel the T dominates everything. I do have the tv/radio on to help, but it’s awful having to constantly get out of the house where the initial, intrusive T began. I no longer have a “home”, I dread being in it or returning to it. It means my children can’t relax at home either. They are as anxious as I am about the house now. I found out my 10 yr old has been asking others at school if their parents have tinnitus that makes them cry too. That literally broke me when I was told. It’s affecting her a lot. I feel so guilty, any advice would be welcomed. Thank you.

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Ray200 profile image
Ray200

Good day to you.

I'm coming up to 6 months with my variable T. Like you, I was distressed about it but on reflection I was concerned about how bad it can get. Fortunately, it hasn't worsened and if was going to do that it would have done so by now, as I'd like to think. So much relief from that realisation.

My situation improved greatly from last month on using wireless headphones. You need somewhere to get away from T and that is the way to do it. Not all the time. Still live life as it should be but knowing there will be an escape at some time, well you can't put that comfort into words.

T profound right now, but I'm on the paint at the moment, fully engaged and I can't hear it as such. And when the paint is drying, there's a bit of headphone to look forward to.

Sassyjax1 profile image
Sassyjax1 in reply to Ray200

Hello. Thanks for your reply. I should probably be grateful that mine hasn’t got any worse for a while. Today I had some mini-spikes which scared me a little, but I tried to carry on as if they were of no consequence. I’m glad you have accepted your T. It gives hope to those of us who haven’t yet.

Ray200 profile image
Ray200 in reply to Sassyjax1

I'm sure your own time is not far away. We all have an ability to adapt to our 'surroundings' and we have an inner resilience. We seem to have forgotten that and it is worth appreciating it. We also have a great capacity for hope. I've had limited success with 30mg Ginkgo tablets. One day a week. If you click on my username you'll find my trials there. Not if but when there is an effective medical alleviation of T I strongly suspect the compounds found in that tree's leaf will be involved.

Sassyjax1 profile image
Sassyjax1 in reply to Ray200

Thanks for being encouraging and supportive. It means so much to someone like me right now.

Ray200 profile image
Ray200 in reply to Sassyjax1

That's it. Keep your spirit up, that lady!

I'm a great admirer of Winston Churchill's advice - KBO. There's no other way. I won't let you know what the initials stand for as Pat the administer might be after me again... (Hello Pat!)

Happyrosie profile image
Happyrosie

the post here eight days ago “I value this forum” from Bellyboo you might find helpful. We can’t tell you how long habituation takes - it’s such an individual thing.

Let think of habituation a different way.

You might have had to commute on public transport when you were at school or working. And it was difficult to get used to all the people, the crowding, the noise, But you soon got used to it. That’s habituation.

You first put on a winter coat when the weather turns cold. It’s heavy, uncomfortable. By the time you’ve got down the road, you’ve forgotten.

When you go I to the bathroom, the fan comes on. I expect you never hear it. That’s habituation too.

I hear my tinnitus all the time but it means I know I’m alive! Given the choice between, say, multiple sclerosis and tinnitus I’d choose tinnitus every time.

In the meantime, I hope you take time to yourself to practice breathing techniques and similar?

Sassyjax1 profile image
Sassyjax1 in reply to Happyrosie

Hello I think acceptance would help me a lot. I just don’t like hearing it 24/7, so I can’t find a way of accepting it. I don’t have the accepting disposition that others have. In my mind, I have already endured enough in life & my therapist said the tinnitus is the straw that has broken the camel’s back. I long for the peace I had 9 months ago. Living in chronic pain and having T on top of that just depletes me every day. I try to keep busy, but that’s difficult with disabilities. The thought of hearing it every day for the rest of my life is so daunting. Even if it went I would be waiting for it to come back. It’s an isolating thing to have. On the plus side, it’s reassuring to hear that someone like yourself has managed to live with it and is still so positive

Ana20 profile image
Ana20

Hi! I’m sorry to here about your state of mind.

I’ve been suffering from T for almost 17 years now. It got worse 6 years ago and now it’s quite worse.

But I think that I can cope with it, listening to music all day long. At night I read listening to white noises. It’s not easy, but life has to go on.

I recommend :

1. Start having some tests done, like Doppler for cranian arteries( I have a plaque of fat on one, kept under control and I try to eat healthily). Talk to your GP

2. Watch your blood pressure( my dear T has different pitches according to the level of my blood pressure😅)

3. Check your cervical spondilosis. It can trigger T

4. See a dentist not to have problems with your jaw.

5. Notice if there are not weather changes that can affect your T.

6. Keep a diary and note down your blood pressure, the food you have been eating,etc( eat less salt).Give a mark to your level of T. Mine at the moment of writing is 7.50-8 on a scale from 1 to 10.

7. Read about T . Reading and knowing rationally about T will help you cope with it.

I wish you a Happy New Year!🥰🎄

daverussell profile image
daverussell

Sorry you are going through so much. It does get better, but you need to be able to change your mindset. I've been slated before for saying it's just noise. I stand by that, but it's an over simplistic view.

Whilst Tinnitus is the source of the problem, it's sounds like it not the main problem; it's being exacerbated by you anxiety of everything else. Until you tackle these problems you are not going to habituate.

Habituation will not just happen with everything you've got going on, but it WILL happen.

Sassyjax1 profile image
Sassyjax1 in reply to daverussell

Thanks Dave. I do try to be as normal in my daily life as I can. My T came after a botched op where I was left with a cerebral fluid leak which went undetected for almost 12 weeks. I needed emergency surgery once the consultant finally listened to me, I can’t accept I have the T. By that I mean I know it’s there, but I can’t understand why. I have given up trying to find the real cause as some of my medical conditions had been in place for over 10 yrs before the T came. Unfortunately I can’t resolve my long term health issues. I’m lucky that my T dropped down in volume from what it was at the start. I had hyperacusis at the start too. That was really terrifying and I often wonder if it was anxiety related. I am really worried that I will never habituate.

daverussell profile image
daverussell in reply to Sassyjax1

The problem you describe that I was referring to are your relationships.What it's important you talk about your tinnitus and other issues with your family and friends, but keep the conversations positive. I.e. talking about the support you are getting. To do this you will need your strengths. As suggested above find a face-to-face support group then keep your strengths for your family.

Sassyjax1 profile image
Sassyjax1 in reply to daverussell

Hi Dave, there’s no local support groups anywhere near me. They seem to be very few and far between.

Tia4 profile image
Tia4 in reply to Sassyjax1

There are on line support groups through Tinnitus UK which are monthly which are really good to sign up to

Sonnybee profile image
Sonnybee

Hi there Sassyjax. I think we can all relate to your story as we have all been at that stage of our T. I would say your close to the top of the mountain, very soon you should have an easier stroll downhill. I'm around 18months in, and have now realised how important I was making my tinnitus. All the things I thought was making it worse turned out to be not the case. T just does its own thing. Although I do think if we're physically healthier, we can face things better. So really what I'm saying is, its a time thing, and we're all different. Sound therapy is considered by some as an avoidance tactic, but it can be effective if used properly. Make sure you match the frequency to your T, and use a speaker or bone conductor headphones, its important to be able to hear other sounds around you. Basically the more stuff we avoid, the more important we make the tinnitus, making it appear louder. Also, if we really rate it in volume to other sounds happening around us, its never as loud as we actually think it is! I know its exhausting at the moment but you will get there. Take care and stay on the forum.

Sassyjax1 profile image
Sassyjax1 in reply to Sonnybee

Hi sonnybee. Thanks for your advice. Thanks also for believing in me and telling me I am nearing the top of that mountain. In the run up to Christmas I tried not to think about the T and I felt different. Fast forward to 5 days ago and the catastrophising returned. The thing is - I know people with T. They never mention it, They also tell me not to talk about it. I also know people who had T for several months and it went away. A friends husband had it from trying to swat a fly out of his ear. He had T for the next 2 yrs. It resolved itself. Another friend doesn’t know the cause of her T, but doesn’t let it define her. I know I’m lucky enough to be able to go outside and not hear the T at all. Once the quiet of home starts - well it’s all I can hear. I find it so isolating and dread being alone because of it. I had several mini spikes yesterday. One lasted all night and I can still hear it. Thats never happened. I had stopped monitoring the sound by putting my fingers in my ears repeatedly. Since yesterday’s spikes I am back to listening. I literally put pressure on the tragus. Thats when I hear it louder, have never had a 1/10 or any silence in almost 9 months. I appreciate your kind and encouraging support.

Seabob profile image
Seabob

Hi your words reflect how i feel every single day, i started T back in September and i have cried every day due to it - i do have TMJD which is causing most of the T so its good to get checked out if you can as your jaw can trigger T - i totally know what you are saying, can i recommend you find Julian Cowan Hill on You Tube he also has a Quieten app - he had T for years but is now experiencing relief, he suggests all sorts of helpful things to cope, as this is a new debilitating condition it takes time, but T can be your body telling you something isnt right, i.e. with me i have a lot of pain from my ear... so please check out any underlying causes or stress in your life, it is an incredibly hard thing to deal with x

Sassyjax1 profile image
Sassyjax1 in reply to Seabob

Thanks Seabob. I go on JCH Quieten App, he’s all about relaxation and de-sensitising to the T. I know so many have found his methods both comforting & successful. I have several health conditions that were about way before the T started. I have addressed some of these. I am making some life changes, so I hope this helps me too. I had never really heard of T before this happened. It was a brutal introduction for me.

Seabob profile image
Seabob in reply to Sassyjax1

Hi - hope you find his app helpful, i have,however it is an extremely tough condition to deal with and sadly our family/friends can be empathatic but we have to live with this in our heads day and night, i too have other health problems, including not having a thyroid, but this beats it all!!! that may sound dramatic but for me it's true as you can take a tablet for most conditions or you will get support, with T there is little support, habituating to something which is horrible is really tough, so i am with you there!!!

Sassyjax1 profile image
Sassyjax1 in reply to Seabob

Thanks Seabob. I know most people habituate, but I can’t see it happening I’m so scared. It’s ruined my life. I have mobility issues and the T happened after a back op this year. Now I’m terrified to have anymore procedures incase it makes the T worse. I am lucky that I can mask my T when out and about. When I come home it’s a whole different story. It’s liked it’s ramped up a level. It probably hasn’t. I had stopped putting my fingers in my ears to hear the T. Last night, after a random spike - (my first in weeks), I started with my fingers in my ears again & checking all my neck and jaw movements which increase the T. I hadn’t done that for weeks. I was monitoring the spike incessantly too. It was quite a long spike. I kept listening out for it when I was in bed, I had to put mediation on and was still listening for the spike. I feel like I’m my own worst enemy. The thought of the rest of my life like this - and it possibly getting worse is making me physically sick.

Seabob profile image
Seabob in reply to Sassyjax1

Hi i totally understand, i had to go to visit someone in hospital and i kept asking my husband if the humming sound was in the ward or in my head? it was the bed..i cant concentrate on much anymore, things i used to enjoy like reading etc have been taken away from me..if your T is being triggered by jaw and neck it may be worth asking a Dr about TMJD - my jaw or ear hisses when i open my jaw - at the mo you and i are just focusing on the T which is totally understandable, if we had been involved in an accident it would take a considerable period of adjustment, please also dont go on tinnitus related forums (excluding here) as there are some extremely depressing comments and for me it fed my already heightened anxiety.

Sassyjax1 profile image
Sassyjax1 in reply to Seabob

Awwww Seabob, I live in such a busy area that I too question where some sounds are coming from. I am in & out of hospital and spend my time asking just about every & anyone “what was that?’”. I hate being alone. It’s robbed me of my ability to be so independent. I just will never get how others cope. I’m a chronic asthmatic and refused both my covid and flu jabs this year. The thought of it making the T worse was petrifying. I can literally only hope that I improve. I have had to let people go from my life over this. My partner left a few days after my first major surgery. He went mad because I needed sound on to sleep. “Get a grip!” That’s what he said. My best friend told me she heard “sounds” about 4 times a year - then told me I must be imagining it all as she’s never come across anyone having it apart from her husband - who apparently hasn’t mentioned it in 30 years! I seriously doubt that.

Seabob profile image
Seabob in reply to Sassyjax1

I am extremely sorry to hear about your partner, it would be like blowing a trumpet or recorder in someones ear all day and night following them everywhere and when they got annoyed saying "get a grip!!" am so saddened that you are not getting a sympathetic ear when you most need it - you can tell your friend we all have T but for 1 in 7 the nervous system ramps it up for all manner of reasons, in your case it could be the stress you are already under because of your health - Tinnitus support groups are a no go for me as my T and hearing are caused by a physical problem mostly - i also couldnt cope with how loud or what sounds they are having to deal with - unless you have this no one can comprehend just how mentally disturbing it is, some times i cant just watch a film as the noise is too much.

Bellyboo profile image
Bellyboo in reply to Sassyjax1

Morning. You’re clearly suffering with severe anxiety which in turn makes T worse. In my own case I’m now used to my T which is severe and I do my damdest to ignore it. I find that when I’m anxious the T feels like it’s not going to abate…but it always does so I hold on and try to be brave. I seldom bring my wife down by talking about my problem as I get anxious knowing she worries about me…. If I’m on the phone and I get put on hold with crazy music or you are presently number 3 in the queue then my T skyrocketes and I have to hang up……ANXIETY

I no longer drink alcohol as it gives me ANXIETY which feeds my T

Best of luck to you and try not to fear it… you can accept it and live a normal life as I do but it takes time. No need to reply to me as I do understand what you’re going thru.

RKAUF profile image
RKAUF

Hi, in addition to what others have already posted I’d recommend attending an ‘in person’ support group. Online forums are great for information and advice, but they are not a substitute to speaking in a room with other people who have tinnitus and discussing how they manage their anxiety around it (especially if those discussions are lead by an expert in tinnitus management). More information about groups in the UK can be found here:

tinnitus.org.uk/how-we-can-...

All the best,

Richard

Sassyjax1 profile image
Sassyjax1 in reply to RKAUF

Hi RKAUF, infirtnsyeky there’s no support groups near me. None at all. I don’t want to go anywhere that people are catastrophising as I’m already massively anxious. A small win for me is getting through a 20 second spike without panicking or crying.

RKAUF profile image
RKAUF in reply to Sassyjax1

Hi, it’s a shame there are no support groups near you. Tinnitus UK do have a few online ones that I think are done over Zoom.

I totally understand your concern about attending a session where individuals might be catastrophisong. Leaders of support groups should be able to prevent that from happening and be able to offer an alternative outlook on managing anxiety around tinnitus. Although habituation and adjusting lifestyles can be very challenging, not all the outcomes of having tinnitus are negative. For example, some musicians say that have have become better as they need to play more accurately at quieter volume levels. Personally, I started to read much more and do more exercise once I had tinnitus, as I found it helped distract me from focusing in on the sound.

I hope you find some methods that work for you. All the best.

Tia4 profile image
Tia4 in reply to RKAUF

Unfortunately there are not always support face to face groups available, depending where you live. The on line support groups, run by Tinnitus UK, are run by experts and are not forums. It is as good as being in a room full of people going through, or have been exactly the same as you. There is a lot of experience and support and sound advice and the group is well led & controlled, they also have some guest speakers.

Sassyjax1 profile image
Sassyjax1 in reply to Tia4

Thanus Tia, I join Darren’s T UK support group when I can. He’s had great improvement in his T. I can’t afford a specialist tinnitus counsellor - but he was very successful with his treatment.

Graham-E profile image
Graham-E

Hi and I’m sorry you’re are going through this.

I know exactly what you mean almost to the letter.

I agree with the replies in that T can take some people different amounts of time to adjust to it.

The goal is to be positive and as easy on yourself as possible. That is hard but you are worth it.

It is difficult for families to understand because really they cannot hold it in their heads.

No one can so maybe just say when it’s bad and what you are thinking of to make it better.

I do like a podcast and there are so many to pick from without a cost being involved. These are comforting because we all like stories and they are a better distraction to me than music for example.

Getting out in nature, if you are able, and connect with people greatly helps me.

At night a sound pillow playing soft rain helps me get to sleep. Hearing aids do also help but I have hearing loss and my T noise is very loud.

I know you feel bad with yourself and that feeds the cycle so being positive and being kind to yourself is really important.

This is a great community too and people here do understand you.

Hope this rambling of thoughts helps in some small way.

Keep well - Graham

Sassyjax1 profile image
Sassyjax1 in reply to Graham-E

Thanks Graham E. So sorry to hear about your T journey. I hope you have habituated somewhat, I think I grieve for my old life and I’m angry that I have got this through no fault of my own. I don’t see the point in trying to ignore the T if I never habituate. My friends with T don’t even consider themselves as having T at all. It’s so bizarre. The only time I cope with T is when I drive. I love driving but it’s an expensive T therapy and I will still have to come home eventually.

Kellythecat-74 profile image
Kellythecat-74

I'm about 10months in . Luckily only one ear. Have used walkman radio in that ear, day and night. Maybe for about the last 3 months I havent noticed it so much., sometimes I forget to use the earphone . Yes the noise is still there . Now at night always have the radio on a talk program . Fall asleep while listening to them chatting. It doesn't get any worse, which is one of our greatest fears and anxiety which can make it worse. If it does spike (mine doesn't) I think it usually subsides back to normal. Try the Gingko (read Ray200 trial on it ). I used it the first time 20 years ago ,I'll swear it helped but did take a long time . Cant use it now as am on blood thinners. You say you only hear it at home , not outside. Have the radio on , try music or talk programs. you will get there !

Sassyjax1 profile image
Sassyjax1 in reply to Kellythecat-74

I just can’t be alone with it. It’s bizarre. So I constantly leave the house which is an issue as I have full spinal stenosis, Thanks so much for your advice. I have spent almost 9 months trying to find the cause. It’s been a huge waste of time and energy.

Kellythecat-74 profile image
Kellythecat-74 in reply to Sassyjax1

yes I know that last bit , spent a fortune on acupuncture. Researched every "cure". Maybe that kept me going . I also found a website where they reproduced the various T sounds that people have. I was grateful for my high pitch whine . Last year chatting to my neighbour , he always goes on about his T. I remember saying " I cant hear mine." Famous last words. Then I took statins . Maybe you are young , I know at least 6 people who have it . All "oldies". 2 probably worse than mine. Most sufferers who have habituated dont talk about it anymore .

Sassyjax1 profile image
Sassyjax1 in reply to Kellythecat-74

Oh no! Did you come off the statins? What a nuisance. 😩

Kellythecat-74 profile image
Kellythecat-74 in reply to Sassyjax1

Yes and I'd only taken for 5 days! Told my doctor that I refused to take anymore . Didnt make any difference the T is still here .

Sassyjax1 profile image
Sassyjax1 in reply to Kellythecat-74

Oh no. Sorry to hear this. Has it shown signs of settling down? It sounds like you were habituated last time.

Kellythecat-74 profile image
Kellythecat-74 in reply to Sassyjax1

yes I was ! totally didnt hear it . Unless in total silence then only just audible. Its the same now as in January. The only difference is that I'm not so scared/ depressed etc as I was 20 years ago. Think I'm hoping it will eventually go away again . Not ready to face the reality that it might not . I might try acupuncture again. Have tried CBT. But it didnt help. Still waiting the NHS hearing aids with blue tooth, lots of sufferers say they help .

hope you managed to have a good Christmas.

Sassyjax1 profile image
Sassyjax1 in reply to Kellythecat-74

Mine literally came out of nowhere. Because I had had neurosurgery on my lower back, (Cauda Equina Syndrome), they decided to investigate. I’ve had a brain scan, 2 ear/auditory MRI’s, and a CT scan. Seen audiologists and ENT. They can’t find any hearing loss. My hearing is actually good. I have tried to find every reason as to why I have it. It’s made me ill worrying about the cause. I can hear it when trying to sleep and in the quiet of the house. I do also get those random spikes too. They used to be very loud and scary, I’m home a lot since my ops I now relate the house to tinnitus. I wish I didn’t have it 24/7. Although I suspect most people do - but they have most likely habituated. The last audiology consultant I saw on 21/12/23 told me I will have to habituate as she’s never known anyone to get better from it. I thought it went if it’s not hearing loss related. She says not. I was so upset. Tomorrow is 9 months. It’s been a nightmare. I went to fireworks last night and had ear plugs and a hat over the top of those again. Totally spoilt the enjoyment for me. I even went to my little girls carol service with ear plugs in & stayed at the back where she was unable to see me. I have had GP’s give me every possible cause for it: menopause, stress & anxiety, brain fluid leaks, TMD (jaw), or mostly told “idiopathic”. I feel cheated as I have never exposed myself to excessive or loud noises, always use ear plugs for theatre, cinema visits, etc. It was the weird, sudden hyperacusis that scared me at the start.

MooseandOscar profile image
MooseandOscar

I'm on my second year, but who's counting. I can't practice piano anymore. I might break down and try a hearing aid even though the audiologist told me my hearing loss doesn't warrant it. I may also try linere (sp?) or something along that line.

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