T suddenly louder : Good morning, Since getting... - Tinnitus UK

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T suddenly louder

Sassyjax1 profile image
41 Replies

Good morning,

Since getting T 9 months ago, I was lucky enough for it to get to a constant level where it only bothered me when in quiet or low ambient settings (and with some somatic tinnitus which came on some months after the T started). I don’t have hearing loss thus far. However, a week ago I suddenly got louder, whistling tinnitus that is constantly noticeable. It literally started out of nowhere. I thought it was a spike and would go. It hasn’t. I already had tinnitus anxiety as I can hear it 24/7, but now it’s louder it’s really distressing. Anyone with tinnitus I speak to about it says it’s probably going to get worse as they haven’t experienced it spiking for days on end. My baseline was just about tolerable. I’ve given up on the idea of habituation now this has happened. I was living in false hope thinking that T would go back to baseline. Sorry for the long post.

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41 Replies
doglover1973 profile image
doglover1973

No need to give up just yet SJ. I've had spikes last far longer than a week. It's always stressful when T changes in tone or volume. You notice it more, monitor it more and stress about it more. That's inevitable. The road to habituation is not always smooth. It often feels like two steps forward and one step back. Just keep doing the things that helped you so far . Try to relax as much as possible. Don't project into the future. You have T today. Tomorrow is a new day.

Sassyjax1 profile image
Sassyjax1 in reply to doglover1973

Thankd for your kind reply. My spikes have only ever lasted a few seconds to about 10 hours before. So this has made me think it’s permanent. I’m trying to carry on as normal. It’s really hard as my daughter can see I’m on distress.

Happyrosie profile image
Happyrosie

what a great reply by doglover!

In his book “Tinnitus, From Tyrant to Friend How to Let Go of the Ringing in Your Ears”Julian Cowan Hill (a medical doctor who suffered from and habituated) says “I “am constantly amazed that people accept that they can develop tinnitus, moving from relative peace and quiet one day into a state of nerves and noise the next. But to suggest that they can change back out of that state where tinnitus backs off can be regarded like heresy. You can move into red-alert with no problems. Everyone can handle that. But to suggest you can revert back into peace mode for some is unthinkable. If you don’t have tinnitus one year and then have it the next, why is it such a big deal to change again and be without it once more? You can change one way, so why is it so hard to change again? This is food for thought.”

In your earlier postings you may have been recommended this book - I think it’s worth a read.

Sassyjax1 profile image
Sassyjax1 in reply to Happyrosie

Thanks Rosie. I have emailed Julian. He asked if I was having a “release”. Something about when the nervous system is re-setting itself. Maybe that has caused the spike he said. I’m really devastated to get this far and try the T has got worse. I haven’t any other coping mechanisms other than the ones I already use.

TinnitusUKPat profile image
TinnitusUKPatPartner in reply to Happyrosie

I can't say it any better than Rosie has here - if tinnitus can move one way, why can't it move back? Tinnitus is not, as Mr Cowan-Hill asserts, a fixed point which can't change for the better. And if our thoughts are telling us the opposite, perhaps that says more about our thoughts on tinnitus than it does about tinnitus as a condition.

Sassyjax1 profile image
Sassyjax1 in reply to TinnitusUKPat

Thanks Pat. I don’t know what’s caused the increase. It was a constant level for so many months and this just happened out of the blue. It’s really a worry. I have asked people I know who have tinnitus and they have all said they haven’t experienced this. It’s harder for me to ignore at this level. It’s over a week now so I am getting concerned.

Happyrosie profile image
Happyrosie in reply to Sassyjax1

I had a chat with my audiologist this afternoon about tinnitus. She says it always has a cause, and I tend to disagree because mine didn’t have a cause that I could think of. However, looking back, at the time I was going through school exams and my mother was in and out of hospital so it could well have been anxiety and stress. If you, sassyjax, cannot find out what the cause is, it was probably something so minor that you don’t even remember it.

The brain is constantly being bombarded with information. When you walk down the road the traffic or the wind or whatever is being noisy but your brain ignores it because it has habituated - it recognises that bird tweets and normal traffic noise and wind won’t hurt you. So you just don’t notice it.

If you walk past a bakery and you are hungry your brain will recognise the smell of fresh bread and will say “hey, Sassys stomach, you are me are hungry!” And your tummy rumbles. Pass by the bakery when you are full, and you don’t notice the smell.

People walk along the street and you don’t notice them because it’s always like this. The brain recognises that no one is going to hurt you, so you don’t really notice them. At three o’clock in the morning if you see someone, though, you will be very wary.

What I’m saying is the brain is very good at filtering out what it does not need, but sadly tinnitus comes along and tries to tell it different. It does take time for the brain to recognise there is no danger, and there are many techniques to help - all of which, to refresh your memory, you’ll find on the Tinnitus UK website.

At the moment my tinnitus is very loud because I’m thinking about it. Soon, I will go on to something else and it will vanish - maybe to return in the wee small hours, maybe not.

At the risk of repeating myself, there’s no need to look for a cause because it was probably so minor that it didn’t register in your consciousness- and looking for a cause just feeds the tinnitus again.

Sassyjax1 profile image
Sassyjax1 in reply to Happyrosie

Thanks Rosie. I’m fed up of looking for a cause as even if I found it I may not be able to rid myself of the tinnitus, so I definitely agree with you on that. I’m scared that this isn’t a spike. Friends who have T tell me they think they know the cause of theirs and that it’s mild. They of them) say they have never had a spike that lasts for more than a few days. I’m very anxious now.

Kiitty profile image
Kiitty in reply to TinnitusUKPat

people are always saying tinnitus is permanent

TinnitusUKPat profile image
TinnitusUKPatPartner in reply to Kiitty

Hello Kiitty. Let's look at it this way. Tinnitus isn't an illness. It's a symptom or sign that a condition is present. Tinnitus might be something that is permanent, but that doesn't mean that it is always intrusive, loud or difficult to live with. The issues which might make tinnitus more problematic to us are things like our fears, thoughts or reactions to tinnitus.

A great many people live with tinnitus which is just there - they are aware, as I am, of a slight high-pitched ring when they are in a quiet room. That's the extent of it. It's permanent in that it's been there since my teens and I still notice it. Does it bother me? No. Not at all.

I don't even care about it enough to feel that I need a cure. Our mileage may vary and we might find that tinnitus being present - even slightly - is an issue that we struggle with. And that's okay. But in that case, the problem is not the tinnitus itself but with the importance we have attached to it or the attention we give to it.

And to be brutally honest, does it really matter what a random person on a forum - even me - thinks? What you're reading is a snapshot of what is on their mind at the time they made a post. Nothing more.

What if five minutes after writing the post about how terrible their tinnitus is and how it's ruined their lives, they get a call from a friend, go out for tea and don't think about their tinnitus for the rest of the day? That's the bit you don't get to see.

Kiitty profile image
Kiitty in reply to TinnitusUKPat

Can tinnitus cause your ears to produce wax faster and make your ears closed?

TinnitusUKPat profile image
TinnitusUKPatPartner in reply to Kiitty

Really simply, no - it absolutely can't. Having more ear wax might result in your ears feeling blocked, less sound entering the ear and our auditory system trying to compensate by creating phantom sounds like tinnitus.

Tinnitus can't do anything to us - our response to it, through tension or anxiety might result in some of the physical sensations which people report and link with tinnitus.

Kiitty profile image
Kiitty in reply to TinnitusUKPat

after my tinnitus started, my ears produced ear wax rapidly and blocked my ears, I got my ear wax removed but the tinnitus still stayed and after 7 days, my ears are now full with earwax

Sassyjax1 profile image
Sassyjax1 in reply to Kiitty

Hello. Ear wax is completely individual. I never suffer from it at all, yet I have tinnitus and no hearing loss. I do totally understand your anxiety though. I am highly anxious today because of tinnitus & nothing else.

Kiitty profile image
Kiitty in reply to Sassyjax1

I definitely have some problems with my ears, and tinnitus is one of the symptoms. Doctors are saying my ears are fine, but why do I feel pain, itchiness, blockage, and tinnitus?

Sassyjax1 profile image
Sassyjax1 in reply to Kiitty

Maybe get your GP to refer you to Audiology?

Kiitty profile image
Kiitty in reply to Sassyjax1

They are not taking it seriously, the waiting list is too long

Sassyjax1 profile image
Sassyjax1 in reply to Kiitty

I think that’s because tinnitus is a symptom and not an illness in itself.

Kiitty profile image
Kiitty in reply to Sassyjax1

Why is a symptom permanent if the illness that is causing the symptoms is healed?

777john profile image
777john

like doglover said spikes can last a lot longer than a week but it always settles back down again. tinnitus can be so frustrating because there's always swings and roundabouts , i can guarantee you one thing , you will habituate, your brain will adjust, i know it does not seem like that now, and i know you will have fear and helplessness running through your veins, do not live in false hope my friend the tinnitus will settle down again.

Sassyjax1 profile image
Sassyjax1 in reply to 777john

Thanks 777john. I don’t know what’s caused this so I don’t know how to remedy it. Just really scared it’s going to get worse. My anxiety is through the roof.

777john profile image
777john in reply to Sassyjax1

Anxiety is horrible it certainly makes the tinnitus louder and yes iv thought Like you that it's going to get louder at times there's no answers to this horrible thing we are gojng through but there is comfort on this site we are all going through the same thing,we have all been there,they say tine is a great healer and it is, just try even though its hard to think positive you will get through this.

Sassyjax1 profile image
Sassyjax1 in reply to 777john

Thank you. I’m so miserable. When it was lower, I found I was beginning to ignore it. If only for a few hours at a time.

doglover1973 profile image
doglover1973 in reply to Sassyjax1

That's the problem with T . On one hand we have no control but on another we do. We can work on our response - as John says. You're currently stuck in a cycle of fear and anxiety. I've been there too. The only way to break the cycle is to think about T in other ways. Friend rather than foe - as JCH says. CBT can be very helpful in making the transition.

Sassyjax1 profile image
Sassyjax1 in reply to doglover1973

I have had CBT recently, but not specifically focused on tinnitus. I seem to be no better off now than I was almost 10 months ago when this started. Not sure what the best thing to do to is. Trying to get on with life, but it’s not easy. I don’t want this new sound/volume to stay. I can barely cope as it is. Especially with the other health issues I have.

doglover1973 profile image
doglover1973 in reply to Sassyjax1

I really feel for you .. I can remember feeling the way you do now. Ten months is still relatively early days - especially if you have a lot on your plate. It's difficult to make decisions when you feel so anxious and upset. CBT specifically for T may be worth a try. Talking almost always helps.

Sassyjax1 profile image
Sassyjax1 in reply to doglover1973

I honestly appreciate all the support. So grateful. I was only just starting to accept the sound I had and now this happens. I have looked up CBT specifically for T, It’s so expensive. Might be worth considering. I feel lost.

doglover1973 profile image
doglover1973 in reply to Sassyjax1

CBT is expensive. I asked if I could have 6 x 30 minutes to keep the cost down. Even in so short a time it was helpful.

bennevis21 profile image
bennevis21

Hi

I have bad spikes continuously lasting up to a week before,also a few days at a time is common for me usually caused by loud noise sometimes takes a month or more to settle down properly,but as soon as it drops for 1 day I know it’s not worsening

Sassyjax1 profile image
Sassyjax1 in reply to bennevis21

Thanks for replying. It’s already been a week for me. Never had this in the 9.5 months that I have had T. My T is 24/7 too. Getting worried. I really hope it settles. It’s even a different sound to what I usually have.

Don_Alejandro profile image
Don_Alejandro

Some positive news here. My tinnitus started in 2019 when I had a wisdom tooth extracted.

The consensus was that it had been caused by my osteoporosis.

To be completely free beforehand and to then find myself with a constant high pitched ringing in my left ear was hard to accept. My greatest pleasure in life is listening to music, I have a large collection and a lovely hifi - to sit in front of it and experience distortion and ringing was heartbreaking for me. I also found it unpleasant when I was out and about shopping, it made me feel disconnected from the world around me. I'm prone to depression anyway, but the tinnitus really got to me.

However here I am nearly 5 years on and the tinnitus has very very slowly declined to the point that for most of the time it isn't there. Like most sufferers I did go through a long period of habituation, but in my case it's pretty obvious I'm one of the lucky ones for whom the tinnitus has indeed slowly faded away. It's been such a long drawn out affair - it's not as if I can say it's better this month than last month, it's more the case that I can say it's better this year than it was last year - if that makes sense.

Nowadays if I do hear any ringing, I can usually pin it down to one of a handful of triggers. Sleeping badly is numero uno. Second is any activity where too much blood is going to my head - lying flat on my back using my laptop is a classic example. Sex is another. But in all these cases instead of panicking and getting anxious about the tinnitus, I now know that it will pass. I sleep at night with 4 pillows under my head, I make sure I'm sitting up comfortably when I want to use my laptop!

I really hope this helps any sufferers who are reading this. Try not to view tinnitus as a lifelong affliction, it may not be. Live as healthily as you can - all things in moderation - and try if you can to keep a positive frame of mind.

Sassyjax1 profile image
Sassyjax1 in reply to Don_Alejandro

Thanks for your positive input. My tinnitus started loudly after an operation almost 10 months ago. It got to a consistent level with the odd piercing spike of seconds. I had my longest spike of 12 hours just before new year. However, last Monday, out of nowhere I have got quite high pitched whistling/ringing that’s really noticeable. I don’t know if this will go down any. I’m really quite distressed as got used to my regular, low level T.

Don_Alejandro profile image
Don_Alejandro in reply to Sassyjax1

That sounds awful, I'm really sorry to hear that.

Have you any idea why the operation triggered it in the first place? I'm just speculating whether a related physical issue might have also brought about this recent spike.

I've been having Prolia jabs for my bones some 7 years now. I was stunned to find out last year that my bone density has noticeably improved . I did wonder if that's helped my tinnitus.

Sassyjax1 profile image
Sassyjax1 in reply to Don_Alejandro

I had cauda equiba syndrome suddenly after suffering from severe back pain and immobility for around 10 yrs. I also suffered 2 cerebral fluid leaks caused during the initial op in March. The second leak went undetected - I was literally begging for help for 11 weeks post op before they decided to give me an MRI. Another cerebral fluid leak. They had missed it during my first op. Needed a second op. My tinnitus started 9 days after the first op. I have mild TMJ from the procedure itself because of the way the op has to be done. I don’t want to dwell on a cause anymore. It could be anything at all. I thought it would get easier as the months passed. I’m so distressed by this sudden increase.

Don_Alejandro profile image
Don_Alejandro in reply to Sassyjax1

Oh dear, that doesn't sound very nice at all - I'm so sorry.

I really hope things improve for you.

It's TMJ which was the trigger for my tinnitus.

Sassyjax1 profile image
Sassyjax1 in reply to Don_Alejandro

Has the TMJ improved for you?

Don_Alejandro profile image
Don_Alejandro in reply to Sassyjax1

Well I'm not sure, I haven't sufficient medical expertise. I'm not experiencing the odd clicks etc in my RIGHT ear any longer, so you may have focused my attention on this in a more focused way.

It's only recently I've speculated that with my bone density improving that this might be a factor with my tinnitus fading away.

Mirador1 profile image
Mirador1

I do feel for you. I've had T for around 30 years and coped with it. Recently it went up to a level I've never experienced before. It was awful for about 2 weeks. I couldn't sleep properly and resorted to Nytol! Luckily it slowly subsided. It's a horrible condition. I've never had it diagnosed but the recent event make me wonder if I should.

Sassyjax1 profile image
Sassyjax1 in reply to Mirador1

Oh I’m so sorry for you. It’s not even a diagnosis. The medical profession just say it’s brain activity that we can learn to ignore. Pfft! Have you had a hearing test lately? Mine isn’t from hearing loss. It’s so frustrating.

FelineSupreme profile image
FelineSupreme

Hey Sassy, I’m so sorry to read about your T spike and your heightened anxiety - I know exactly how that feels! Do you think your T could be caused by Eustachian tube dysfunction?

Mine is, and I also have spikes similar to yours - mine was loud and lasted a month the last time, but it did go away!

Much love to you and your daughter. I promise you this DOES get better. ❤️‍🩹

Sassyjax1 profile image
Sassyjax1 in reply to FelineSupreme

Hello FSupreme. Thanks for your reply. I hope it is just a spike. I don’t think I can habituate if this keeps happening. It lulled me into a false sense of security. I was having small seconds of habituation before this happened. I have been to ENT. No issues there. He just shooshed me out of his room saying “you will get used to it”. The fact he gets paid to say what I can say to myself galls me. I’ve gained a loud whistling sound. Hoping it goes away is all I’m clinging onto. Thank you for your kind words.

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