Eleven Years of Chemo-Induced Tinnitus

[Ezri Carlebach]

Hey everyone.

I had chemotherapy for Non-Hodgkin's Lymphoma in 2010. I was given cisplatin and began to experience tinnitus almost immediately. The cancer returned in 2011, so I had more chemo, this time with vincristine. I also had a bone marrow transplant. The tinnitus got worse. and I had 20% high-frequency hearing loss. The only thing my consultant would say was, "it's better than the alternative" (i.e. dying of cancer).

Eleven years on, my tinnitus has been ever-present and remains relentless, invisible (inaudible) to anyone else, and all but impossible to explain. I have just had to endure it ('suck it up', as one nurse told me) along with lymphoedema in my left arm for which I have to wear a horribly uncomfortable compression sleeve all day, every day. Now the tinnitus is starting to exhibit weird variations. At times, I can distinctly hear the sound of a wood pigeon in my left ear, alongside the constant 'shiny' noises that were there from the start. It gets worse with tiredness and stress and - I think - with the full moon. Like a jet taking off directly overhead.

I feel bad complaining because, well - I'm not dead. But now this interminable noise is beginning to make me feel like death would be a welcome release.

I would love to hear about any coping strategies that people can recommend (apart from alcohol - doesn't help!).

Thank you,
Ezri

 

[ringingfeet]

Hi Ezri,

welcome to the forum.

I find that CBD helps with relaxing. This helps to fall asleep and I believe my tinnitus behaves better.

What also helps I have a couple of Bluetooth speakers. One plays white noise and the other has beach sounds.

More is more when it comes to speakers. Not per se volume but more to fill room with.

Maybe it's worth trying?

Yours friendly,
Ringingfeet

 

[Matchbox]

I have just had to endure it ('suck it up', as one nurse told me).

I feel bad complaining because, well - I'm not dead. But now this interminable noise is beginning to make me feel like death would be a welcome release.

Nonsense. Suffering is suffering. Sure, better to not be dead, but plenty of people say that shit that don't know what suffering is with no end in sight.

No sucking it up, you deserve a break from it.

 

[Ezri Carlebach]

Thanks @ringingfeet for the kind welcome. I did try CBD but couldn't get on with it. There were many different brands and types, maybe I need to experiment more. I will try white noise and post my results.

And thank you @Matchbox! You're so right. I do get to sleep at night (mostly, anyways), but that feeling when I wake up and the noise that nobody else can hear is always - and will always be - there. That's what I'm finding harder to deal with.

I'm glad I found this forum. At least you know what it's like!

 

[harveycat]

I feel bad complaining because, well - I'm not dead. But now this interminable noise is beginning to make me feel like death would be a welcome release.

Hi Ezri - I've only just joined this forum & it's been a while since you posted... so I'm not sure you're still posting here. I have pretty much the same situation as you, although my cancer didn't return. Since chemo in 2013 I've had chronic tinnitus and like you I feel I should just be grateful to be alive - but quality of life matters & having a constant sound-pain in my head that is only mine to endure is significantly denting my quality of life. I'm here now, at 1 a.m. unable to sleep, listening to the sounds sent from this website, talking about the stupid noise in my head. I hope you have found some way of managing yours.

 

[gameover]

Hi Ezri - I've only just joined this forum & it's been a while since you posted... so I'm not sure you're still posting here. I have pretty much the same situation as you, although my cancer didn't return. Since chemo in 2013 I've had chronic tinnitus and like you I feel I should just be grateful to be alive - but quality of life matters & having a constant sound-pain in my head that is only mine to endure is significantly denting my quality of life. I'm here now, at 1 a.m. unable to sleep, listening to the sounds sent from this website, talking about the stupid noise in my head. I hope you have found some way of managing yours.

The OP has not been here for 2 years.

 

[SarahMLFlemmer]

Hi Ezri - I've only just joined this forum & it's been a while since you posted... so I'm not sure you're still posting here. I have pretty much the same situation as you, although my cancer didn't return. Since chemo in 2013 I've had chronic tinnitus and like you I feel I should just be grateful to be alive - but quality of life matters & having a constant sound-pain in my head that is only mine to endure is significantly denting my quality of life. I'm here now, at 1 a.m. unable to sleep, listening to the sounds sent from this website, talking about the stupid noise in my head. I hope you have found some way of managing yours.

Please don't feel bad.