Does Tinnitus drive you crazy? Or it ... - CLL Support Assoc...

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Does Tinnitus drive you crazy? Or it it just me?

thelutondodger
thelutondodger
15 Replies

I have experienced varying degrees of tinnitus over the last decade or so. I may have had CLL for that period too (CLL diagnosed following pre-op assessment for prostate problem in Jan 2015 then 6 cycles FCR and 18 months remission)

When I took medical advice (2004?) it was accompanied with dizziness and bouts of vertigo and fatigue. I was referred to Audiologist and discovered that I have age-appropriate hearing levels (then I was about 55) My GP suggested it to be Meniere's disease - for which she said there was no real cure. I have lived with it since and apart from during periods of stress or driving it hasn't really troubled me.

In 2015 the CLL came along and took over my life for a time and I never really thought about either Meniere's or Tinnitus. However during the last few months (co-incidentally during which my lymph nodes have bulked up and my ALC has being rising - so I'm on six weekly clinical appointments - the Tinnitus has been swashing, sheeshing and buzzing in the left upper quadrant of what is possibly my temporal and parietal lobes (maybe Wernicke's area) of my brain.

I mentioned this to my consultant haematologist and she didn't think it was connected to my CLL.

Practically, I live with it and when I'm focussed on some activity or other it doesn't really intrude to be bothersome. I don't actually cherish it but I don't hate it - it's part of how I'm made up currently. I'm a music maker and often use headphones - which actually make it a bit worse if there is no music playing. I know when I'm mixing a piece some of the higher frequencies are affected by my hearing loss (hi-hats and higher frequency synth or string pitches)

There was an item on BBC Radio 5Live last week and I wonder if there was some relation to CLL or other blood diseases. Do others experience Tinnitus and how do you deal with it?

Cheers,

Roger

15 Replies
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teakbank12

I have Tinnitus and as you say you can ignore it sometimes whilst other times it drives me mad.

When i saw ENT and had a hearing test they said about various methods of dealing with it vary.

I've just woken up and have background TV on and yes it was only when i read your post i realised my ears are buzzing, in other words my brain must just switch off to the constant noise.

Dave

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tekusa

I have Tinnitus as well. I Told my 1st Oncologist (one who officially delivered my CLL diagnosis) that the ringing in my ear was worse last few years (time I had CLL but not yet diagnosed). He did not think the two were related. But I am typing this right now with a high frequency sound (high pitch - like air going through a narrowing tube.) It is anoying, but most times it is like living near a train track.... I get used to it unless the frequency sound gets more pronounced (which it does at times for an unknown, to me, reason).

I looked up Meniere's disease! I think I have that! Maybe not... But I looked it up.

Tinnitus is annoying!!!

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Newdawn
NewdawnAdministrator

Oh it's definitely not just you Roger! I've had it coming up 23 yrs and it's unrelenting, unseen and often unbearable....and pretty untreatable.

It's one of those things I can't bear to dwell on because coping requires a degree of denial and acceptance.

It's so common and thoroughly unpleasant that I think anyone finding a cure for it could make themselves one of the richest people around!

From another deeply reluctant member of the 'Fizzing Ears Club' :-(

Newdawn

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shoshanaz

Yes, I have have major tinnitus. No idea if it is connected to CLL, age or whatever, but loud, constant, like white noise and very high pitch sound. No dizziness, though. I decided to cope with it by pretending that it was just the sound of my brain working (more likely malfunctioning, but let's ignore that). The bad news is that there's not much out there to treat tinnitus. If it was related to CLL, I'd expect to hear from folks who had it and found it resolved when the CLL went MRD-. Has anyone had that happen?

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BeckyLUSA

I too have tinnitus, for a long time, usually worse when I have a URI, but always there. Mine pulses in time with my heart beat when I am having a really bad episode. As others have said, you can sometimes learn to ignore it while concentrating on other things.

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cllady01
cllady01Volunteer

The constancy of the buzz is like being in the midst swarm of insects. It is a blessing that, while it seems to always be there--in one ear or the other, then in both, there are the times I do not notice it.

I have had a diagnosis of unconfirmed Meniere's--because of a vertigo episode, but the swarm of insects were there long before that.

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Ballyhoo77

I also have it , but I've had it way before dignosis and treatment. Never thought about it until lots of people here notice they have it . Mine is a constant ringing like others very anoiying.

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holly2

Hello Roger, my tinnitus began when I was about 30 and I am 64 now, so definitely for me it is not CLL related. I think it is "wearing headphones for too long" related though! Most of the time I cope with it but it usually is at its worst when I put my head down on the pillow and try to get to sleep! Also definitely worse if I get a head cold with blocked ear, then it is amplified! My hearing is not brilliant when I am in a crowd of people, then I cannot hear people I am with and trying to talk to. I would certainly like it if someone could come up with a cure, although I wonder if I might miss it! All that sudden quietness.

Holly

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sandybeaches

My girlfriends husband has Meniere's and was told to stay away from all nuts and have a low sodium diet. He's fine unless travelling, where the dizziness and sound will flare due to meals eaten out.

Just thought these suggestions may help someone.

Sandy Beaches

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thelutondodger

Interesting about the nuts i) I eat many nuts as part of my regular diet and ii) I'm completely nuts!

Thanks, R

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thelutondodger

Thanks for all your insights and experiences. The headphones issue may play a part as I've been a long-time user. Also the nuts issue too.

I have told myself that it's the sound my brain is making as I process all that clever stuff I'm involved with (currently listening to a Youtube video and typing this)

I didn't actually think it is CLL linked I wasjust curious.

Cheers, R

Looking forward to CLLSA in Leicester on Thursday.

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Anilbhard

I too had tinnitus occasionally but had been able to successfully control using Hearing Aid of Widex company which besides emitting Master sound as well as more palatable sound called Zen , which is confortable and emits these sounds back to brain and aft two days latter goes to sleep

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JustAGuy

I have Tinnitus too. I just read all the replies (12 so far), so looks like we are not alone.

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Dancedunce

Me too. I am so glad you brought this up. I sometimes feel so alone with this. I have had tinnitus since I was 19yrs old. I am now 65 yrs old. Mine buzzes and sometimes pulses with my heartbeat. It has definitely become worse with age and hearing loss. My worse issue is focusing in a loud environment as I still work. Also when I get stressed, it gets more bothersome. My fear is the treatment for CLL will increase the noise. Does anyone know if Ibrutinib, venetoclax, etc is ototoxic?

Thanks for the discussion on this,

Peggy

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John007

I been diagnosed with CLL since 2009 but still in early stages, no medication required yet. But just recently i develooed tinnitus and i akso trying to find out if my CLL could have caused the tinnitus.

I havent found anything to cure my tinnitus. Its a continous hi frequency sound in both ears. Sometimes load sometomes low. But it is depressing me.

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