Dear All,
Does anyone know if tinnitus is a result of CLL or it’s completely irrelevant to it?
I have CLL for years (diagnosed in 2010) and I’m on treatment with Ibrutinib. My numbers are steadily improving but the tinnitus gets worse. It becomes really annoying now. I looking for advice if anything can be done to improve it?
Happy New Year and let’s hope that soon we will be free from the deadly virus!
Temida
Hi Temida. I am also on IB and also have constant Tinnitus I try to have low background sound (TV, Music )etc which helps. It can indeed be so annoying. Best wishes.
Hi Temida,
I’ve had tinnitus for 25 yrs but did notice it was progressively worse on Ibrutinib. Psychological tolerance and acceptance is the greatest ally with tinnitus once you’ve eliminated any possible physical reasons.
Low haemoglobin levels can exacerbate it and also lead to pulsatile tinnitus for some where the heart beat can be heard in a thumping/ pulsing way. Stress too aggravates things and high blood sugar levels. As you seem to have joint issues like me, be careful about inflammatory foods and too many carbs. It may not apply to you but these things work for me.
Important thing is the Ibrutinib is working for you.
Tinnitus is a miserable condition but as a neurologist once told me, ‘however it won’t ever kill you!’
Best wishes,
Newdawn
Thank you, Newdawn :)I believe that food is really important and I’m trying to eat healthy. I realised that actually eating meat really worsen the muscle pain. My family are carnivores though, so this festive season I had some meat and sweets...and I can say the tinnitus is worse as well.
Actually from TCM different types of tinnitus depends on liver or spleen dysfunction ... So yes, I will go back to healthier food and detox.
Regards and HAPPY 2021 ❤️
Hi I am on ibrutinib and tinnitus started after taking it. My haemotologist doesn’t seem to recognise it as a side effect of ibrutinib but I suspect it is. Acceptance and distraction are the best methods of managing it for me. I try not to focus on it and it works. Happy new year to you and all of the CLL community.Ann
I've had tinnitus since 1994, 8 years before I was diagnosed with CLL.
During the day, it's just about keeping my mind occupied ... getting to sleep is a problem and I need medication to have any chance of a full nights sleep.
Like everything else, somedays are better than others, I don't suppose you get used to it, but you manage to live with it.
The worst thing to do is talk/think about it ... Damn!
ygtgo
I discovered I had Tinnitus at a Tinnitus seminar. I thought everyone heard that buzzing/high pitch sound! I was a speech therapist and happened to sign up for that topic. That was 20+ years before my CLL dx. I am not on Ibrutinib. I had chemo. I have days I hardly hear it and some that are very noticeable. Mostly when in a quiet room. As far as I know, it is not CLL related but some medications can have that side effect. There is no cure for it.
I was diagnosed with tinnitus a few years ago. Really annoying and then it became seriously bad as my CLL got worse and my haemoglobin dropped to the point that I needed a blood transfusion. I then started Acalabrutinib and almost 3 months later, all tinnitus has gone! Was it related to CLL? Can't be sure it was, but a bit of a coincidence if it wasn't. My GP never even considered it a possibility but then he knew very little about CLL. On reflection I would say, it was related to CLL.
I also have tinnitus and I'm not currently on any treatment for my CLL. I have found that since the causes of tinnitus can completely vary or will remain largely unknown from person to person, only with trial and error over time can someone learn what might help, or what makes it worse for them.
Often what you eat may have an effect, and exercise may help, (as Newdawn has said, these things reduce inflammation so that makes perfect sense) and distraction is your friend. Stress of course is not.
If you have a smartphone I would suggest looking into Apps that are designed specifically for tinnitus sufferers, there are actually quite a few of them out there. With some of the better ones they have different background sounds, environmental sounds, and instrumental music that you can customize and layer if you want to help not only distract you during the day, but to help you sleep at night as well.
With best wishes,
Debbie
My amateur opinion is that if you have very low hemoglobin, then the tinnitus is cll related. If you hemoglobin is over 10, it’s probably not cll related.
I have had mild tinnitus for years probably related to hunting without ear protection. When my hemoglobin was very low my tinnitus got very bad, like ocean noises. Now that my hemoglobin is normal my tinnitus is back to where it was before cll diagnosis.
Hi , tinnitus is not related to CLL , eat healthy food far from sugar , be positive, try to exercise, God will take care of the rest. Happy New Year.
I had the pulsing type for months after starting treatment. It is no longer an issue and I did not even think about it since it has disappeared. I have my blood done on this coming Monday after three months, so will see what levels have changed. I am assuming that it is because my hemo. is maybe 'normal' finally?!!
Interesting . I only have tinnitus in my left ear - rises and falls, and reacts to water run at a certain frequency !
Hi Temida - I had pulsatile tinnitus whilst on Ib. However, the Ib didn't suit me in other ways (sepsis) and my treatment was changed after 2 months. As soon as I stopped taking those little grey capsules, the tinnitus went away, so you may well find that it's the Ib and not the CLL which is causing it, and you can look forward to it ending when you finish the capsules!Stick with it for the greater good! Cheers - Handley
Hello Temida
I have been hard of hearing since I was 4 years old and have had tinnitus on and off all my life. I would echo Newdawn's solution. It only becomes a problem for me maybe once a year when trying to go to sleep. I just weave it into a song I am playing in my head. Blessings.
Mine started 11 yrs. ago when I was diagnosed. One treatment with chlorambucil may have been the original cause. Now on ibrutinib for 6 years. I more or less ignore it now, but for a while it was very annoying. I hear every heart beat.
David
Hello Temida
I should explain how your ears can filter out tinnitus. Your eyes focus images up-side down and your brain instantly turns image right side up. Your brain does the same thing in acting as a filter for your ears. I have been wearing hearing aids for 50+ plus years, but only in the last 20 years have the hearing aids been of use, due to internal filters. The reason why most people do not like hearing aids is because all sound is amplified, including things like shutting doors, fans and dropped pencils. This extraneous amplified noise drowns out people talking and etc. Your brain normally drowns out a lot of that extraneous noise so you don't notice it as much. Your brain is capable of doing the same thing with tinnitus noise. Blessings.
Have had it for at least 35 years. It did not get worse with Ibrutinib. It does however get worse when I am not feeling well. A cold or sinus infection makes it much worse!
Have had it since a bad case of vertigo due to an inner ear infection.....really noisy when I first wake up from a nap or sleep. Bought a white noise machine with sounds of rain, ocean, waterfall, thunder....really helps at night.
Have you tried anti dust mite bedding and improvement of air quality in your home especially bedroom by hepa vacuum with sealed bag or hepa air purifier? Reduction of dust levels by removing dust with a damp cloth. Indoor air quality has been found to be 2-5 times worse than outdoors and recent evidence review shows that it affects health in people of all ages
When I was on Ibrutinib I had lots of ear inflammation. After 10 months I stopped the Ibrutinib and the ear inflammation when away immediately. I had painful swelling of joints as well on Ibrutinib. I am on Obinituzumab now and inflammation recurred, but then turned into Tinnitus . I saw an ENT yesterday. Nothing they can do. I have had loud ringing for two weeks. Trying not to stress over it. During the day I try to stay active and think good thoughts, breathe deep breaths, and not focus on it. Before bedtime I take valerian and calMag. I play a sound machine rather loudly with a white noise setting. I plan to get Cognitive Behavior Therapy since the ringing is loud. I hope to learn some good things from having this, like better stress management!
Does Tinnitus drive you crazy? Or it it just me?
Chemotherapy for CLL 
CLL
CLL 
