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
Thank you for replying & your input 👍
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
Totally agree with everything you say Jig.
As a 'balance' on the topic, I have had 'moderately severe' tinnitus for just over 30 years ... and (as yet untreated ) CLL for almost 19 years.
The last two weeks have been a struggle health wise.
I caught a cold, followed by cold sores ...and then both eyes have been badly infected ( eye pain is not nice ... but this has been the worst since I had cornea ulcers back in Aug 1990)
Whenever I'm this ill, my immune system seems to fall like a set of dominoes ... the chronic pain feels worse, as is my deafness (due to 'glue ear) and 'naturally' I now hear two 'new' tinnitus sounds.
I do not link my tinnitus to my CLL ... but when I'm ill it certainly racks up the volume ... Hopefully, things will settle down soon 🤧🤧😣
Oh, and a piece of advice that I was given 30 years ago ... " Never stick anything smaller than your elbow into your ears " ... and avoid ear syringing.
ygtgo
Yer! I'd agree. My tinnitus fluctuates in concert with other fluctuations.
And oh yes for sure, don't poke things in ear canal.
When I'm king, I'm banning cotton buds...
Hope you feel better soon
Jig
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.
that is very helpful. I will speak to my consultant . Thank you
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.
I have pulsatile tinnitus and it’s so unnerving. It hits be out of the blue. And sounds around me seem to wave in and out of my head. I’ve literally stopped and asked if does anyone else hear it It’s like if there’s music going on and it rhythmically pulses in and out of my ears.
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.
pleased that you are in remission . Thank you for passing on your experience
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
Thanks for commenting Ann. I’m not on any treatment yet so I can’t blame Ibrutinib
I experience tinnitus concurrent with my SLL. The tinnitus waxes and wanes with my other SLL symptoms.
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.
Hereditary CLL
CLL congestion
CLL
Merrily's CLL 
Hypertension & CLL
