So Basically Once You Get Tinnitus, You're F**ked No Matter What Until Death

[UKBloke]

extremely high pitched sonic whistling that blows out my ears.

When tinnitus reaches this level (mine sounds like it behaves exactly the same as yours, except it was a noise trauma that elevated it) it's a completely different thing to deal with.

It's so strange at times. I do get periods, sometimes four or five hours a day when it goes. It's not just that I don't notice it; it actually goes and is replaced by a lovely low-level hum (imagine someone with perfect hearing being ecstatic about that?? ) These are the periods I look forward to and remind myself I've had in between the grim periods.

I think so much of the tinnitus cycle is about finding protocols that work until such time they don't. And then we just have to find others, which may turn out to be a rehash of what has come before. Whatever works.

How is your sleep pattern? Mine has been up and down, which is something I've really had to pay a bit more attention to but things are now better in that respect. FWIW, my ritual before bed is:

1. 2 x freshly squeezed oranges from the fridge. I don't know whether it's a placebo or not, but I've convinced myself this shot of Vitamin C tones down things a notch. Even I'm wrong, it's a very nice drink.

2. Hot shower (at least 15 minutes) focusing the water on the back of my neck, just turning left and right a little to massage and warm the nerves. This really helps to calm things down.

3. A bit of forehead rub - again this just physically de-stresses the head and seems to help.

4. Mix and match the sound therapies to a low enough volume.

5. Sleep with the window open

This routine has gotten me through some pretty rough patches. It's obviously not a cure, but we do what we have to do.

Didn't intend to ramble on here Greg; just wanted to put it out there!

 

[UKBloke]

Well even with loud tinnitus I have always been able to fall asleep.
I certainly know I have severe tinnitus, but being a realist, I also know for sure that I am stuck with it - it ain't going nowhere.
So approaching sleep is just really an acceptance of the inevitable.
No point in unnecessarily stressing about it.
Falling asleep is just a collapse.

The bigger problem for me is staying asleep long enough.
I tend to wake after say three hours, and then need to fall asleep again.
I don't want to take an actual sleeping tablet, but I do use Melatonin.
In the U.K. you need a prescription for Circadin from your doctor.
Melatonin occurs naturally in the body, made by the pituitary gland - so it is really more of a supplement than an additional drug.
Circadin contains just 2 mgs of Melatonin, and I actually cut mine in half with a pill cutter, so I just take 1 mg.
Then when I wake, obviously in noise, I have a pee, then fall back asleep easily for another 3 or 4 hours.
If you tell your doctor you have troublesome tinnitus he should prescribe Circadin.
If he won't then see another doctor.
It is a product readily available without prescription all over Europe and the US.

Re: my relaxation techniques:
Longing for something we cannot have (silence) is counterproductive and damaging.
Through meditation - sitting or lying quietly - I can usually find a condition of (comparative) calm in my psyche - a stillness.
Silence - I cannot have.
Stillness - I can.

I don't know if you 'teeth grind' which will prevent relaxation from happening - but if you do, look up my post on:
'How to Cure Bruxism.'
Best wishes
Dave x
Jazzer

I was actually going to go and see my doctor just before all this lockdown business put pay to the idea. In a very strange way, I kind of have this feeling there was an element of fate in that because I know he will probably end up saying, you just have to learn to live with it (as he did in '91) then ask if I've tried masking. Not seeing him this time round really only leaves me where I was the first time round so I'm taking it as the universe telling me something.

Sleep is reasonably straightforward at the moment (with a few rituals) but I've noted others take Melatonin. Interesting that you take it too. I'm like you, I don't want to take sleeping tablets per se but depending on how things go, Melatonin might be an option one day.

Cheers mate. My name's Simon btw.

 

[bobvann]

@Greg Sacramento
It does nothing to turn me on to any possibility of a god.

If there is he hates me... or our early eternal torment for failing to repent!!!

 

[Steph1710]

@Jazzer

Hi Jazzer (Dave),

I tried to contact you a while back but couldn't.

Would there be any chance of me being able to talk to you?

I'm the grumpy one (Steph) from the members photo thread.

X

 

[Jazzer]

Please do Steph.
You can PM me if you wish but may need permission from the staffers.
I'm happy to speak to you so hopefully there would be no objection to contact.
Go for it.

 

[BigNick]

It can go away, it did for my Aunt and a girl I work with after 2 years.

There's also people who get a significant improvement, Google Rupert Brown (drummer). I had a FaceTime chat with Rupert, lovely guy.

Isabel Anderson, she shared her story on YouTube.

And Adrian (ADE tinnitus support / recovery) from YouTube who has pretty much documented his tinnitus experience over 4-5 years and now says he has silence.

 

[arctic_penguin]

They should be teaching this at school. All they talk about is don't do drugs and cigarettes etc. Tinnitus is the worst thing and these headphone manufacturers should be sued. Why do they even make headphones/speakers go above hearing damage levels like over 100 dB?

 

[dan]

They should be teaching this at school. All they talk about is don't do drugs and cigarettes etc. Tinnitus is the worst thing and these headphone manufacturers should be sued. Why do they even make headphones/speakers go above hearing damage levels like over 100 dB?

Believe it or not, most people don't get severe tinnitus. You're not supposed to get severe tinnitus as normal brains have working filtering mechanisms to prevent this from happening.

 

[arctic_penguin]

Believe it or not, most people don't get severe tinnitus. You're not supposed to get severe tinnitus as normal brains have working filtering mechanisms to prevent this from happening.

I agree, but more could be done to prevent people from getting it. Like showing the reality of living with it. It makes sense though, since any drug can disable or dampen that mechanism, which is what led me to having it chronically. Although that may not apply to everyone exposed to extreme sounds.

 

[tpj]

Believe it or not, most people don't get severe tinnitus. You're not supposed to get severe tinnitus as normal brains have working filtering mechanisms to prevent this from happening.

So what the fuck happened to us?

 

[AnthonyMcDonald]

I agree, but more could be done to prevent people from getting it. Like showing the reality of living with it. It makes sense though, since any drug can disable or dampen that mechanism, which is what led me to having it chronically. Although that may not apply to everyone exposed to extreme sounds.

Well 99% of cases are mild yoga CBT preachers who are super "zen" and say living with it is no issue. So that's why there's not more warning about it because people downplay it or just don't care. Smoking kills and people still do it.

 

[Wrfortiscue]

Well 99% of cases are mild yoga CBT preachers who are super "zen" and say living with it is no issue. So that's why there's not more warning about it because people downplay it or just don't care. Smoking kills and people still do it.

My previous tinnitus was fairly loud but straight tone and no hyperacusis. I habituated in months and could hear it almost all the time. My brain would just block it out. I imagine most people that say it's no big deal to have this type of tinnitus.

I don't see multi tone/reactive/noxacusis folks preaching that for the most part lol.

 

[Matchbox]

My previous tinnitus was fairly loud but straight tone and no hyperacusis. I habituated in months and could hear it almost all the time. My brain would just block it out. I imagine most people that say it's no big deal to have this type of tinnitus.

I don't see multi tone/reactive/noxacusis folks preaching that for the most part lol.

If mine had remained the tone I hear/static at night, I'd still be flying planes and listening to music / be alive.

 

[Wrfortiscue]

If mine had remained the tone I hear/static at night, I'd still be flying planes and listening to music / be alive.

Do you have any periods where your tinnitus is not as distressing?

 

[Matchbox]

Do you have any periods where your tinnitus is not as distressing?

Rarely. Usually a day or so. Can never seem to catch what I did if anything.

Those days head tapping will produce almost no rebound and total silence (about a minute of it).

It's happened probably 6 days in the last year.

 

[dan]

So what the fuck happened to us?

Scientists aren't sure, but it's something to do with certain neurons firing and not being able to reset to resting state. The inhibitory mechanism has broken down. For every biological function in our body, there is an activation and inhibition cycle (immune function, enzyme function, hormone regulation and nerve function etc).

 

[dan]

I agree, but more could be done to prevent people from getting it. Like showing the reality of living with it. It makes sense though, since any drug can disable or dampen that mechanism, which is what led me to having it chronically. Although that may not apply to everyone exposed to extreme sounds.

Tinnitus in its severe form is 1-2% of the tinnitus population. We have won the lottery. Nobody cares. Even people with mild forms consider it a mild nuisance at most.

 

[LilCC]

Tinnitus in its severe form is 1-2% of the tinnitus population. We have won the lottery. Nobody cares. Even people with mild forms consider it a mild nuisance at most.

I won the lottery twice! Severe pain hyperacusis and moderate tinnitus, how lucky am I huh?

 

[dan]

They just found a cure for cancer...

 

[arctic_penguin]

They just found a cure for cancer...

Lol guess we are last in line for a cure... how lucky.

 

[dan]

Lol guess we are last in line for a cure... how lucky.

Once every disease in the world is cured, we're next lol.

 

[ThomasF]

Tinnitus isn't visible and doesn't physically kill the person afflicted. It's invisible torture for those who have it. That is why being loud and vocal is necessary to get work on a cure going. Be as loud as your tinnitus is. Make the world hear your plight and at least then you can break through the default apathy inherent in many people. There is no guarantee a cure is within 10 years but there is a lot of research and all research needs money. More money means more research and more research is a higher chance for a cure. Please stay strong. We need you to add your voice to all those who suffer this misery.

 

[ThomasC]

It depends on your tinnitus loudness, pitch, and your resilience. I've had moderate tinnitus for years and it never bothered me to the point I was 99 % unaware of it.

 

[Barry098]

Tinnitus isn't visible and doesn't physically kill the person afflicted. It's invisible torture for those who have it. That is why being loud and vocal is necessary to get work on a cure going. Be as loud as your tinnitus is. Make the world hear your plight and at least then you can break through the default apathy inherent in many people. There is no guarantee a cure is within 10 years but there is a lot of research and all research needs money. More money means more research and more research is a higher chance for a cure. Please stay strong. We need you to add your voice to all those who suffer this misery.

I like your optimism.