Tinnitus & CLL

[Ternheim1967]

Hi

I was diagnosed with CLL a year ago and not currently on any treatment . However, since January I have suffered from continuous Tinnitus , day and night . I have read some articles online that it may be connected to my condition but wondered if anyone in the community has experienced the same ?

Darren

[Ternheim1967]

Thank you for replying & your input 👍

[JigFettler Volunteer]

Tinnitus is an important symptom. It can occur with and without CLL. I am not sure it occurs because of it, and certainly I would not assume CLL is the cause. If theTinnitus is only on one side then its even more important, and if associated with unilateral deafness - even more important still.

So - do go see your GP. Make sure you see a doctor, other health staff may not appreciate the finer details of Tinnitus.

It could just be wax of course. If its wax - seriously consider getting the wax removed by suction and avoid ear syringing!

Jig

[cajunjeff]

The association between tinnitus and cll typically occurs if one acquires hemolytic anemia, a known complication for some who have cll. You might look at your hemoglobin levels. Very low hemoglobin levels can correlate to very severe tinnitus.

[Ternheim1967]

that is very helpful. I will speak to my consultant . Thank you

[Britam]

I just wanted to second what cajunjeff mentioned. I had pulsatile tinnitus when my hemoglobin began to decrease significantly and I was diagnosed with warm body Autoimmune Hemolytic Anemia (AIHA) by a Coombs test ordered by my CLL specialist. (I also had a high lymphocyte count. ) The initial treatment of steroids and Rituximab was not successful for me but the tinnitus disappeared once I began treatment for my CLL.

[GMa27]

I have had mild tinnitus for 40 years & CLL for the past 17 years so it's unrelated for me. No clue how I got tinnitus - they suspect a medication but it doesn't matter since basically there is no cure for it. When I was anemic, it didn't effect it. I am in remission & it hasn't changed.

[Phil4-13 in reply to GMa27]

GMa27, the same for me! I've had tinnitus for most of my adult life. I think it is because I played clarinet since childhood and always sat in front of the trumpets!!!BLAST!!!🙂 Sandra

[Ternheim1967]

pleased that you are in remission . Thank you for passing on your experience

[annmcgowan]

Hi I have tinnitus it started when my treatment of ibrutinib commenced. This may be coincidence but had wondered if it was ibrutinib related.

Ann

[Ternheim1967 in reply to annmcgowan]

Thanks for commenting Ann. I’m not on any treatment yet so I can’t blame Ibrutinib

[Amberesque]

I experience tinnitus concurrent with my SLL. The tinnitus waxes and wanes with my other SLL symptoms.

[SofiaDeo]

I suspect when the CLL affects my sinus lymph nodes, I have sinus and ear problems. No way to know if there are any blockages, etc. unless you see an ENT.