Tinnitus

[dhamra]

Anyone else have terrible loud tinnitus?

Thanks

[Fogey]

Yep, I had both loud hissing and loud pulsatile tinnitus. Most disconcerting especially at night when trying to sleep. It’s a known symptom of CLL and I think it may be linked to having relatively low blood haemoglobin levels and should definitely improve with CLL treatment. Mine has but I can still hear it now as I write this. To swamp it out when trying to sleep, I bought and used an inexpensive sound generator called a sound oasis with small under-pillow speakers and this played calming sounds of breaking waves which countered the tinnitus most effectively. I wish you well, dhamra. It should improve and, until then, tune it out with pleasant sounds.

[GMa27]

Mild for me but have had it since HS. Nothing to do with CLL. My docs said it's hard to find out how it developed. Possibly antibiotics, some meds etc. Acupuncture helped a little. Severe cases are helped by a hearing aid. But basically no cure.

[RobertCLL]

I have had both loud hissing and loud pulsatile tinnitus for several years. It's only a problem at night when you are trying to sleep. I use a white noise generator playing at night to overcome the tinnitus. I did have some investigations into the tinnitus in the early days (ct scan and doppler test) but nothing conclusive. (It's not low HB).

There is an expert on tinnitus in a Cambridge Hospital, sorry I forget his name, if it becomes a problem you might want to go and see him.

[ygtgo]

Yes indeed ...

I have had tinnitus since 1994, a dozen years before my CLL diagnosis. It is probably due to my work in an engineering workshop and then as an industrial quartz glassblower.

I have quite a few medical issues, if I was offered a cure for one of them, I'd pick ... 'Stop The Noise'

I have to say though, that my tinnitus has been labelled 'severe' ( 5 or 6 noises at any one time ) ... not helped nowadays, as I'm going deaf just like me ol' dad did at the same age.

I now take medication to help me get to sleep ... and have a bedtime routine of 'winding down' after I take the tablets.

ygtgo

[UnusualCakeroll]

Yes, for at least 11 years in my right ear only. My hearing is a tiny bit impaired in that ear. I have swollen nodes under my right ear, which are visible since 2023.I wonder if my nodes dissappear during treatment then if my tinnitus will also disappear..

[annmcgowan]

Hi yes, mine started post treatment with ibrutinib. Haematologist says no evidence it is Ibrutinib or CLL related. There is some evidence it is AIHA related which I did have pre treatment. Off treatment now 9 months and still it. I cope well with the hissing sound I get using distraction. When I am focused on other things I don’t notice it and it doesn’t intrude on sleep for me. Hearing aids didn’t work for me, currently trying Tinnitus masking aids provided by NHS. So far not much help.

Ann

[habsrule in reply to annmcgowan]

I as well got it after i had AIHA.... I too take Ibrutinib. .only advice that I can give you is get used used to it. most days I hardly hear it bit it's always there. Some loud periods but generally it's low.

[ncosto]

I have experienced a few short episodes of tinnitus in my right ear since starting on ibrutinib 3 months ago

[Vizilo]

Funny enough, I developed tinnitus earlier this week. Very high pitched noise - like high tension electric wires or the sound chicadas make at night. I don’t really notice it during the day - harder to fall asleep now.

I’ve been on Acalabrutinib for almost 4 years, all blood numbers except hemoglobin are normal. Hemoglobin is borderline low (120-130 range). First incidence of tinnitus in 10 years with CLL

[Goopteal]

I had heartbeat noises that I did not realize was due to AIHA. I thought it was my TMJ acting up. After treatment for AIHA, blood transfusion, Prednisone, and 4x Rituximab, the noises stopped.

My husband had severe tinnitus from his service in Vietnam and the malaria drugs. He was told more than once that there was no fix. He finally found a specialist at Yale New Haven hospital. A combination of hearing aides, steroid shots in the ear drum, and water pills helped him.

[cjd619]

About a year and a half after my diagnosis, I noticed a ringing in my ears. Still in W&W. Audiologist thought it was early signs of hearing loss, but I passed my hearing tests - so that was ruled out. I also noticed my ears feeling plugged often. I think it is related to mild inflammation of lymph nodes in my neck and jaw area. I notice it coming and going... in waves or cycles lasting a month or two.

Unlike others mine isn't a whooshing or throbbing. It is a steady ringing that sounds like it is coming from the center of my head. Increasing background sounds has help me not notice it as much... but, it is annoying.

[Blood66]

My tinnitus is very loud, both ears...It started as a high pitched whistle sound that at the time I only heard when everything around me was silent.

Nowadays it's a white noise sound that's at the forefront and is louder than the loudest music.

So every other sound that I hear , like people talking, television, or whatever..is always in the background.

I never watch tv without subtitles.

Conversations are very difficult.

I also have hearing loss.

My tinnitus has got nothing to do with my cll.

I play guitar in bands and didn't use ear protection in my younger years.

I do now for the last 15 years but the damage was already done.

[annmcgowan]

Hi I agree that’s exactly how it is for me and how I cope. Hospital said my brain has adjusted to it.

Ann

[BigDee]

Hello dhamra

I have had tinnitus just about my whole life because I am hard of hearing. I mostly ignore it and through the years it has turned into mostly classical music. When trying to sleep I have very good at tuning it out. It does create some issues when I have infrequent hearing tests. Wish you success.

[JustAGuy]

I started having tinnitus 30 years ago when I had the flu. My ears and hearing often suffer if I have any fever. It predates my CLL diagnosis.

[DylanPxxx]

Yes. It sounds like a flock of 20,000 metal birds swirling around in my head. It’s always there and it’s crazy loud.

My tinnitus emerged a decade ago, 6 years prior to my CLL diagnosis. At first it drove me crazy and stopped me from sleeping or enjoying TV, etc. But my brain has adjusted to it and I sleep in spite of it. It does interfere with my hearing as it blurs sounds on the higher end of the register.

[HoHoHa]

I'm 7 years into Watch and Wait but had annoying, ringing tinnitus long before that. I found a book in 2017 by Glenn Schweitzer, "Rewiring Tinnitus" and found a wonderful suggestion. In fact I didn't read any further once I came to this idea. I used it and discovered it worked like a charm. Even gave the book away.

His comment was that many people, when they sit in meditation, find it difficult to focus on their breath. Their mind keeps jumping around to other thoughts. He suggested focusing solely on the sounds of the tinnitus. Your brain will get bored/tired/distracted and you'll start thinking about something else.

In retrospect, that may not be an accurate description of what he wrote, but it's what I took from the book, tried using, and had great results with.

The book sells on Amazon, but rather than buying it, I suggest you use the word "meditation" to search the reader reviews. You'll get a lot of information and won't even have to get the book!

[DS37]

I had it, and it went away. Many people I know seemed to get it post-covid. Half the ppl I know have tinnitus sans CLL.

[Vacationmountaintop]

I have had a pounding sound in my ears ever since I started brukinsa two months ago. Mentioned it to my oncologist but she didn't offer any solution to the problem.