Poll: In the Past 7 Days, What % of Your Waking Hours Was Spent Thinking About Tinnitus?

[JasonP]

I am just wondering how much people think about their tinnitus. Just give your best estimate or guess out of the 5 choices listed.

 

[PDodge]

90% of my time is spent dealing with this horse shit. My tinnitus almost left me on Saturday and I made a pizza and spent 5 minutes listening to the pepperoni sizzle. That's how much this shit has made me lose my mind. Maybe I have other issues going on IDK

 

[Bam]

Tinnitus and the desire to escape it has consumed my life entirely. It's made me realise and appreciate all that I had and lost.

In the words of Alexandre Dumas.......'It is necessary to have wished for death in order to know how good it is to live.'

...Unfortunately tinnitus isn't big on second chances and the lesson for some us is wasted as we will not be granted a reprieve. however much we have learnt from this living nightmare.

 

[Deamon22]

Tinnitus and the desire to escape it has consumed my life entirely. It's made me realise and appreciate all that I had and lost.

In the words of Alexandre Dumas.......'It is necessary to have wished for death in order to know how good it is to live.'

...Unfortunately tinnitus isn't big on second chances and the lesson for some us is wasted as we will not be granted a reprieve. however much we have learnt from this living nightmare.

@Bam , i can't even begin to understand how terrible this must be. It breaks my heart every day reading posts of severe sufferers. I really really hope that Bi-modal stimulation will be able to improve your tinnitus a lot.

 

[Michael B]

There isn't a morning I don't wake up and ask myself, what kind of T day is it going to be today?

 

[Rajin]

Very hard not to think of this noise in the brain. It's like stepping on Dogshit forever. It is not easy to get it off your mind.

 

[jay777]

On a good day 21 hours a day, if no sleep then it's 24.

 

[Alex Matyjasek]

There isn't a morning I don't wake up and ask myself, what kind of T day is it going to be today?

Completely agree with you there. I'm only 70 days in. About a week ago got an annoying eeee... So i'm very worried thinking what's next! And I'm only 37

 

[Steve G]

Its there all the time. I hear it over almost everthing. Electrical brain noise. Two years today.

 

[Artemis2K]

It's annoying, but I try to keep myself busy and that usually helps. The unilateral hearing loss, however, is profoundly annoying, and so is the hidden hearing loss where hearing people in noisy backgrounds is greatly difficult.

 

[Allen Y.]

2 years 3 months in. 10% of the time it's bearable ... that is I feel I have my "normal" life back.

But rest of time I am almost constantly aware ... even if not constantly mad...

 

[brownbear]

I'm aware of it most of the time but not exactly thinking about it, if that makes sense.

 

[EarHair]

In January I was an 80% for a couple weeks (loudness of 7 or 8 out of 10).

Sound got quieter and then it was like 20% for a few months (goes between 4-6/10).

Nowadays not sure if I habituated or it got quieter, I think my brain is just tuning it out. (I think I'm consistently at like a 3-5/10). So I notice it like 5%. As long as I have some sound enrichment or a task to accomplish I am tuning it out. So I hear it when I got to the washroom or try to get to bed I'll hear it off and on but I fall asleep to talk radio and a fan so I listen to the talk radio until my brain shuts off suddenly, I really recommend this, it made it easier for me even when I was at 8/10, it keeps your mind somewhat off the T.

 

[Agrajag364]

Tinnitus and the desire to escape it has consumed my life entirely. It's made me realise and appreciate all that I had and lost.

In the words of Alexandre Dumas.......'It is necessary to have wished for death in order to know how good it is to live.'

...Unfortunately tinnitus isn't big on second chances and the lesson for some us is wasted as we will not be granted a reprieve. however much we have learnt from this living nightmare.

I was big on Dumas and that book in the first years of suffering with a different condition. @Bam how loud is your tinnitus? Can you hear it over everything?

 

[Wolfears]

On a good day 21 hours a day, if no sleep then it's 24.

If this is not the very definition of brutal, inhumane torture, I'm not quite sure what is.

 

[Tamara]

FIVE YEARS AND 3 MONTHS, 24h/d, high pitched.

 

[jasonbourne]

Probably 80-90% depending on how much company I have that day. Noisy friends are a good distraction. The part that hurts me the most is hearing it as soon as I wake up. My day is ruined from the start. What a shame I have to end up taking my life very soon as I have so much to live for, but fuck this living torture.

 

[Bill Bauer]

What a shame I have to end up taking my life very soon

Have you observed any fading or changes for the better over the past 6 months? In any case, I hope you try that Neuromod device before you attempt suicide.

 

[jasonbourne]

Have you observed any fading or changes for the better over the past 6 months? In any case, I hope you try that Neuromod device before you attempt suicide.

Its only gotten worse since it started nearly 2 years ago. I don't believe Neuromod actually works. Until i see evidence it's all just bullshit false hope. Either way I've thought about my decision for months. I'm mostly at peace with it. You bet if there was a cure tomorrow I'd be the happiest man alive.

Edit* my life has become unbearable as months pass. If the device came to my doorstep in Feb I'd wait, but that's not realistic. I can't wait any longer for false hope and only get worse anyway. I want to die with my sanity in tact.

 

[Bill Bauer]

If the device came to my doorstep in Feb I'd wait

If they begin selling the device in January or February in Ireland, I think it might be possible to somehow buy it there and then use it at home.

Oh yes, they allowed us to take it home for the 12 weeks, so we could use it in the comfort of our own home. I lived 200 miles away from their office anyway!

We had to use it twice a day for 30 mins, I used it in the morning and evening. We had to bring the device with us when we went back for check up appointments I think so they could check the data, to make sure we were complying with the recommended usage etc.

If you buy a device I'd imagine it would be the same as what happened us on the trial, you would have it set up by an audiologist to be calibrated to suit your hearing, tinnitus level and tongue tip sensitivity tolerance.

They allowed us to test the device for one of the treatments (30 mins) in their office, to observe us and make sure we were happy using the device and if we had any questions. It was very easy to use though.

 

[jasonbourne]

If they begin selling the device in January or February in Ireland, I think it might be possible to somehow buy it there and then use it at home.

Where is the evidence that it actually works?

 

[Bill Bauer]

Where is the evidence that it actually works?

https://www.neuromoddevices.com/stories
The above shows that the probability that the fraction of people who benefit from using it is greater than zero. Hopefully they will make their research public when they begin selling this device in Ireland.

 

[Bill Bauer]

Where is the evidence that it actually works?

https://www.tinnitustalk.com/threads/q-a-tinnitus-hub-meets-neuromod-lenire.32369/page-8#post-399243

 

[Telis]

I think about it all night, the sound takes away my ability to stay asleep, I can hear it while I'm sleeping, invades my dreams. Day time, I try to keep myself busy, but it still hurts me, I can feel the sounds piercing my brain all of the time, I don't have to think about it.

 

[jasonbourne]

https://www.neuromoddevices.com/stories
The above shows that the probability that the fraction of people who benefit from using it is greater than zero. Hopefully they will make their research public when they begin selling this device in Ireland.

This is not evidence. None of this is. Anyone could post fake garbage on the internet.

 

[DebInAustralia]

I spend most of my days coping with heart and lung issues.

Tinnitus no long preoccupies me.

 

[Strife_84]

Too much. I am just pissed because I cannot finish my music track.

But I have noticed I think about it less as the days go by. The more I think about it, more power I give to it and more restricting it will be to my life.

I cannot heal it. No one can. So no matter how much I think about it, it will not get better. I need to accept the fact that at the moment I have a disability, and I need to adapt to it.

It sucks, yes. But that is really the only thing I can do. I will not let this destroy my life.

 

[linearb]

In years past, as much as 90%.

These days? 5-10% or less, is my guess