Hearing loss+ balance problems

[Scammell124]

ive been on Ibrutinib for 11 months and has worked well but in the last month my hearing has seriously declined and had balance issues In the last month I.ve had 2 brain MRI scans +2 lumber punctures taken +2 CT scans + numerous blood tests all to no avail nothing shows irregular ,Today my consultant told me to suspend Ibrunitib for 5 weeks he has not heard of these side effects before, anybody out there had similar. problems?. Its seems a bit of a rash decision to stop taking Ibrutinib as i,m stiil waitng for a ENT appointment

[cllady01 Former Volunteer]

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[cllady01 Former Volunteer]

It is not unheard of for Drs. to stop Ibrutinib for a time to see if a problem is a side effect of the medication and to allow for any testing that may need to be done by others -- the ENT appointment will be important, of course, and get an assessment through testing.

Other Cll members have reported hearing problems but I am not remembering any in relation to Ibr--but memory can fail me these days. You can read others posts re: hearing loss in "Related Posts" column beside your post (if on computer); if on another device, scroll down a the page to find the column.

Hope you get sorted soon. Let us know how your ENT appt. goes.

[marcyh]

I haven't had treatment, but I have hearing loss, tinnitus and balance problems. I suspect mine is autoimmune related - which has a link to lymphoma and CLL. I have other autoimmune symptoms that have crept up over the years so I think this is one more.

marcyh

[Scammell124 in reply to marcyh]

Thanks for your info all replies hrlp

[Haileybury]

I was on Ibrutinib for 21 months and DID experience similar problems at different times - blurred vision which stopped me driving, hearing problems which drove me to get hearing aids and worse of all, kidney problems. My consultant stopped the Ibrutinib and all the above side effects resolved within a few weeks. I have a very expensive pair of hearing aids put away in a drawer !!!

Incidentally, since being on Venetoclax I have had NO side effects and my bloods are all in normal range.

Good luck to you.

Haileybury

[Scammell124 in reply to Haileybury]

Thanks for the info it is interesting to know other people have had similar problems. I also had blurred vision and was losing my eyesight but this has improved greatly after steroids and tablets. I have purchased some hearing aids which help a little on the one side but not on the other. I have an ENT appointment next week so hopefully he will be able to give me some answers as I have seen a neurologist who is at a loss as to whats causing these issues. My CLL consultant after an MDT meeting has told me to stop the Ibrutinib and if the problems ease he will start me on Venetoclax.

Thank you for your reply.

[Haileybury in reply to Scammell124]

Great decision by your consultant. 👍

[ivy39]

Is Ibrutinib your first treatment or have there been others? The reason I ask is this: I am on Venetoclax and it is my third line treatment. My balance issues go back to before Venetoclax and I suspect if my balance problem is drug related it may be due to earlier treatments with Cyclophosphamide, Vincristin and prednisone or my second treatment with Revlimid. C, V and R have all been linked to nerve issues such as neuropathy, so why not balance? Anyone else to comment on this?

[Scammell124 in reply to ivy39]

Ibrutinib is my 4th line of treatment, the balance, hearing and eye problems have only appeared after taking Ibrutnib. I was on Idelisib previously but had to stop that after 10 months due to it causing colitis which ended up with me being hospitalised due to dehydration.

[ivy39 in reply to Scammell124]

Thanks for your reply. My balance issues began after about two years into Revlimid treatment, but I still wonder if my earlier treatment (CVP) or R is the cause of the balance problem, or any of these. I say this because a friend, who does not have CLL and is not on any drugs other than a blood pressure medication, has the same issue with balance.

[DelrayDave]

My balance problem started way before ibrutinib. It was clearly caused by chemo (chlorambucil) which was my first treatment. Ear doc said not ears. Neurologist said not brain. Oncologist said not chlorambucil! All I know is that one day I'm riding a bike 30 miles and the next (after the second dose of chemo) I fell on my face walking. No more bike.

Tinnitis seems also to have started then, but got significantly worse on ibrutinib. Pulsating tinnitis is now constant. For a while it drove me crazy. Now I hardly notice it. There is no doubt it has affected my hearing, but not yet enough to need hearing aids (I think).

Then there's the sinusitis which is more or less chronic. It's possible this is the cause of of both the imbalance and the tinnitis. So far I have not found a solution. However, I have discovered that I have been able to get used to most of this. I assume it depends on the severity of the symptoms.

I would not presume to claim certainty about your doctor's suggestion. He knows you well, I assume. But I do think your hesitation to stop ibrutinib is well founded until you get more clarity about the relative risks and benefits.

[SeymourB]

Scammell124 -

I am 9 years into watch and wait, not yet into treatment. I have balance trouble, too, intermittent, though.

I had shingles 13 years ago in my upper trigeminal nerve. It got into my left eye, and I think into the ear on the same side. The eye is now 20:600 on the best days. In any case, I have balance trouble and hearing loss. Sometimes. I have trouble walking straight down the hall - especially if I move my head. I've had growing tinnitus that sounds centered in my head, but occasionally moves to one side or the other more. That left ear and sinus also tends to get infected more, and has clogged completely twice for months at a time.

Over the last year, the left pre-auricular lymph node has grown to about 5cm. Stress makes my eye, tinnitus, and balance worse, and I get post-herpetic neuralgia from my forehead, across the top of my head. I already had some nausea due to digestive issues. No vomiting, though.

However, I went to a neurologist that specializes in balance issues. They did a bunch of high tech tests with special glasses and LED lights and a chair that spins. They put warm water in each ear while monitoring eye movements. They diagnosed vestibular nerve migraine. They advised staying well hydrated.

I've also noticed that I tend to chew food more on the left side, and have been diagnosed with TMJ. My neck and left shoulder near the blade tends to ache and spasm. I'm tense, and I have bad posture. When I went to the dentist to get a crown replaced for an upper molar, I ended up chewing on the right side more. That decreased the TMJ and neck pain.

I also did several months of physical therapy to build strength in general, work on my neck and my knee (another story). Gentle neck stretches helped.

The worst times for me are when I spend too much consecutive time at the computer doing spreadsheets for work under a deadline. Major tension. I'm a delusional IT superhero. I set an alarm on my mobile phone to try to get up every half hour, but sometimes ignore it.

When the PHN (post-herpetic neuralgia) symptom arises, I put an ice pack on the back of my neck, near where the nerve comes out of the spine, and that seems to help a bit with the pain and the balance. I take 500mg acetaminophen. And exit from Excel.

Despite SCIG (sub-cutaneous immunoglobulin) therapy, I still get minor sinus infections on that side. Nothing as bad as before SCIG, though. I do a nightly saline nasal rinse, which helps a lot, too.

So, I'm thinking that looking for sinus infection or neck problems, and attempting to minimize stress may help. Stay hydrated and check your B vitamin levels. General nervous system health check.

[SeymourB]

Scammell124 -

One thing I forgot to mention - some people may also have canaliths - calcium crystals - in their inner ear.

vestibular.org/understandin...

webmd.com/brain/home-remedi...

Didn't work for me, but may work for you or others, especially if there's no external nerve dysfunction (neck, lymph nodes pressing, infection, etc). They did the Dix-Halpike maneuver at the neurologist as part of all the other tests. Scoring negative on that is one thing that moved the diagnosis toward vestibular neuralgia and migraine, I believe.