Someone Heard from Louise?

@Louise you used to post here lots, where are you now? how are you doing with your tinnitus?

 

"Louise was last seen:
Monday at 12:27 PM"

 

Hi,

Wish I'd replied to this when I was alerted to it a while ago. I was 'ok' then. I could've posted good news. A 'success story' almost. As, I'd functioned with IT for a year. I hated IT but I would put it into the background and carry on. No more. In the past few months it's got worse, louder. It's all about the volume. This newer level is not do-able. Its there all the time. There's a few thing could have caused it and I'm trying to work it all out. But maybe I'm just one of those that has had a new 'outbreak' I don't know. I'm trying to study for something and previously would've eaten it alive but now finding it so hard and its giving me headache, trying to concentrate past the noise. I know no-one has the answer, and like I said, I wish I would have posted when things were better.

Louise.

 

Big hug Louise,

it`s all about volume and hanging on ... don`t be afraid to talk about to friends and let them lift you up when it is hard. I see for myself i tend to close of and hide when things are tuff but often when i meet people it lifts me up.

Hope we all get relief soon ...

 

Too bad to hear. It's so disturbing that this T-beast is so hard to bring to heel.

 

Louise you have been a kind supportive soul on this board. We wish you better and quieter days to come.

 

Word! It's all about the volume.
Mine is giving me headaches every day. Feels kinda like a never ending migraine.
BTW, I loved the movie. Watched it years ago.

 

@Louise SO TRUE - when it's low it's fine - when it's high it's intolerable. Mine is making weird noise today that is filling my head and I can't seem to mask - so annoying when you're trying to study!

Hang in there Louise - have often wondered how you are.

Click

 

Hi Jane, nice to hear from you. Its not good news at this end... it just keeps on getting louder. Its jumped twice in the last 3 months. Substantially and it never goes back down to previous levels. I started a new contract 3 weeks ago and couldn't hear it above the noisy office. Now I can, easily. And itll stay like this now. Its whistling and whining away above everything now. Its supposed to fade with time but mine is the exact opposite and I know Im not alone in that. Why? Why is it constantly getting worse when other people's gets better with time? Yeah, thats right, they dont know. So we are just left to accept it and try and live with it and not think about how life used to be without it. Feeling fucking desperate.

 

@Louise

Wish I knew. Mine has also got louder and the days when it isn't there are far fewer. I've come to the conclusion that mine has been made worse by problems with my jaw and bite. Having a general in a couple of weeks to have some teeth out to correct the bite - scared stupid! Not because of the op or the pain - just because I know that I could be making the worst decision ever - they clamp your jaw open (bad for T) - they use some drugs for the general that are ototoxic (long talk to the anaethetist - after which I cancelled op 6 months ago & have now gone back to saying I will have it - he'd had T himself for a month & knew how scary it was but had to admit that the drugs could make it worse) - and the actual extractions could affect nerve endings etc. -(worse for T).

God knows how we're supposed to make any kind of rational decisions whilst having this stupid affliction.

It's really good to hear from you. Thought about you often and wondered whether the programming worked out.

Haven't got any answers Louise - I just want to scream about it with you. Some days I can program - others I hide under the duvet. If it gets permanently louder after the op then not sure I'll be able to think clearly enough to work.

Take care xx

 

Can't you mask it while you work? White/purple/red/ noise or nature sounds?

 

@Sam Bridge
I have them all plus a hundred more Sam but when the tone is ever changing or it gets really loud, then no - masking doesn't always work.

Quite often the masking needs to be so loud it gives me a blinding headache!

How is your T Sam? Tell me about it - hearing about someone else's can be a good diversion

 

@click its like a fuzz/buzz noise. I play this purple noise track on low and it completely covers it up which is nice. It pretty much never changes unless i am stressed, then it tends to seem more intense.

 

That's great Sam. That's the key to it really - the fact that it doesn't change much. Mine changes all the time, gets hissy, gets very loud, gets screechy, goes away... My brain doesn't have the chance to habituate and, quite often, it's like I've just started T all over again - a new sound shocks, a louder noise shocks and when it goes away and comes back again it's another nasty shock.

No point in dwelling on it tho - because that just makes it worse

Really glad you're able to mask yours.

 

Good luck with the op Jane. Really hope it improves things. I think habituation is a crock once it's gone past a certain point of loudness. I mean how can anyone not hear a loud whistling, screeching, whining, up and down and in and out sound that is constantly moving in their ear? Not possible. Take care.

 

Mine is ever changing too, that's making it harder to tackle...it also means you're always on alert subconsciously as you never know how it's going to be that day...

 

Habituation isnt about not hearing it. It's about it not being the main focus of your attention.

 

Habituation to tinnitus means:

 

I know what habituation is Sam.

 

I feel you @Louise as I have the same problem. Mine is changing every second and ranging from medium to very loud. I mostly hear over everything. It's hard to live with so I know what you are going through. Life is really hard sometimes and I wish the best for you. It's good that you are writing what you are feeling <3

 

Thanks Patrick

It's the 'tune' it plays that is moving if you see what I mean. There are several tones and it's up and down between these tones all the time. Like a tune. All the time. In addition it's getting louder and louder and louder.

I noticed from your info that yours was caused by a blow. There's a guy I know who got it from a beating and his went away - but it took about 5 years he said.

 

For it not be the focus of your attention it needs to be something that you can 'get used to' - something that your brain can sense as not harmful, which is much easier if it's not constantly changing. The brain is alert to significant changes and that's what we have - an ever changing noise rather than a constant sound.

 

Yes i know, same here with whistling noises ranging from 3-12kHz. Crazy. I'm sorry to hear it gets worse and only wish it will get better for you.

Thank you for the story about the guy you know, it gives hope!

 

Mine changes all the time also. There are two kinds of habituation: habituation to reaction and habituation to perception. The first one can be achivied in many cases, the second one is very difficult for ever changing intrusive T.

 

2-3 tones above 15 kHz here. My head is like permanently loading with energy.
Masking only with very loud crickets. I am still here after three years.
Hoping that my tones will lower one day. Mild days seem like a cure.
Habituation to this? Hmm. Really difficult.

Stay strong my friends.

 

Yep, mine changes too. I do get some times when I can quite obviously hear it, but it's slightly lower, but mostly it's a challenge every day to adjust to the differing tones and 'feeling'. It's not just a noise. Somehow having a few minutes or even hours of a maskable buzzing makes the times when it's really ramped up the volume unbearable.

 

It's such a sad story, since so little is needed to make life quality so much better, simply remain in silence when it starts, and then it does not get louder. Many people would agree I guess, yet health care don't care about life quality. They only care about sustaining life, not the quality of life. Health care is still in the stone age. It needs to change its attitude and not only focusing on survival but also focus on improving life quality. Simple paper work, a document from a doctor saying this person needs to rest at home in silence for one year to stabilize reactive tinnitus, a document which gives economic stability to the person in need. In the end there would be huge economic gains in our society by maintaining life quality of people. It only remains for politicians to wake up and realize this. And to educate doctors so they can distinguish reactive tinnitus from normal tinnitus.

 

I agree. Though the Tinnitus experts say that the worst thing for it is silence. That's not my experience - the worst thing for it in my case is any additional noise.

Is it the theory with reactive T that if I spent a long time, several months, in the quiet that it would go back down? I've never had mine reduce in these 4+ years, only get worse. But I've never been able to spent solid months in total quiet either.

 

@Louise

Weird thing happened to me recently. Never suffered from wax in ears before but after 10 days of not being able to hear out of left ear (ignored it because of thinking it was probably associated with T - so no point going to GP etc. etc.) I went to see the local nurse who told me my left ear was completely blocked with wax.

That's not the weird thing... the weird bit is that, even when the T was really loud, whilst that ear was blocked, when my T was loud it was different - it was much much further 'away' - and, first thing in the morning the T was SO quiet. T was different from any time in the last 4 and a half years. Totally different.

That blocked ear made a huge difference to my T. I kept wondering why (as you do) and finally decided that the silence was helping the T.

 

That's interesting Jane. But 'they' say that blocking your ears with plugs is the worst thing for T. I guess it's just what we all know already - no-one knows what's going on with it.

All I know is that mine has got louder several times now through exposure to normal everyday noise. It happened on 23rd June when I watched TV all night (the EU Referendum). I'm guessing the normal, lowish volume of the TV for all those hours did it. But it never came back down.

2 weeks ago I had some dental work done and now I am really suffering with a huge increase.

It just goes on doesn't it, the misery.