Hear Heartbeat in Ear: I have CLL, been taking... - CLL Support

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Hear Heartbeat in Ear

Die-Hard profile image
18 Replies

I have CLL, been taking Imbruvica since November of 2018. WBC down to 40,000 from 247,000, just recently started hearing heartbeat in right ear when laying down, Feels like water in your ear after swimming, anybody else ever had this?

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Die-Hard profile image
Die-Hard
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18 Replies

6 years on w&w, no treatment....

I get the same thing..... I don't think it's uncommon.. I just change position...

Newdawn profile image
NewdawnAdministrator

Sounds like pulsatile tinnitus. It tends to be more common when there’s underlying anaemia but I’ve had it in the past with sound haemoglobin levels and it does go away. It’s very irritating however but changing position can help. I tended to get it when I was stressed.

Best wishes,

Newdawn

pulsatile tinnitis. I had it for about 4 months when i was anemic. as my rbc/hct got better it gradually dissappeared

cajunjeff profile image
cajunjeff

I agree with Dawn and IVFN that pulsatile tinnitus related to low hemoglobin is the prime suspect. But there are other causes of tinnitus.

Just from my layperson take who had to deal with tinnitus with my anemia, I would say the further your hemoglobin is under 10, the more likely low hemoglobin is the cause of your tinnitus. The more your hemoglobin is over 10, the more likely there could be some other cause.

SaltSLC profile image
SaltSLC in reply tocajunjeff

My Hemoglobin was really low and I could hear the heartbeat in my ear. It went away after my hemoglobin went up.

BeckyLUSA profile image
BeckyLUSA

Have had it off and on for 10 years or so, much longer than I have had CLL. Have not had it any more or less since starting on Ibrutinib in 2017. It tends to get worse when I am sick with something, but have never been anemic. Doctor says it is just an aberration for some people.

BeckyL USA

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

It is a warning for me to get my hemoglobin checked. I usually deal with it when anemic. It can be a warning sign of a heart irregularity, but can also be of no medical significance. Best to mention it to your doctor and let him figure out what to check for.

RobertCLL profile image
RobertCLL

I have had PT for some 3 years, it started just after starting Ibrutinib (not HB related). I have had all of the tests CT, MRI, MRA, Doppler, but it will not go away and I have no explanation as to the reason why.

My Doctor told me mine can be related to my sinuses. I have it a lot worse during allergy season.(which allergy season here last a long time) He also said the tubes that drain your ears, I forget what the name is, but they can be clogged.I also get it a lot worse when I am anemic.

I hope you feel better soon. I know how annoying it is 😡

Take care

headjog profile image
headjog

This is exactly what I have Wilma, I lost hearing in both ears simultaneously before Christmas, i could only hear 'inside my head' for a couple of weeks...which was horrible.

Luckily by exercising....holding my nose and blowing through my ears, and drinking a whole glass of water whilst holding my nose....my hearing came back to around 90%.

Having been to ENT for a closer look, I apparently have glue ear, which is not only linked to my hearing (obviously) but also my blood rushing tinnitus and also a mild cough that I've had for a year.

Interestingly, I have absolutely no nasal symptoms whatsoever....no runny nose which I'm delighted about because I used to suffer with rhinitis years ago and that was way worse than this infrequent cough and tinnitus combined!

I have been using a saline nasal spray and beconase nasal spray, which while haven't cleared my symptoms, they do seem to keep it in check.

All the best

morepork profile image
morepork

Yes, my ear noises - mostly popping clicking noises/ , are apparently due to my Eustachian tubes opening and closing; as they don't drain efficiently.

Graham64 profile image
Graham64 in reply tomorepork

I have heard that also. Do you know if there is any surgery or other action on the eustachian tubes that can improve things?

flutterbye profile image
flutterbye in reply tomorepork

I had this same problem last year. Tried everything! I bought an ear popper from amazon it cost £99 but it was so worth it. Takes a couple of days to work

bennevisplace profile image
bennevisplace

Make the best of it: headphones, relax, sync Pink Floyd.

morepork profile image
morepork in reply tobennevisplace

Oh yes, and Led Zeppelin ! 😃

6468 profile image
6468

I have been bothered with ear noises , worse at night. I put on Alexa for calming sounds i.e. rain, waves whatever. Their are many to choose from. Will help for sleeping.

DelrayDave profile image
DelrayDave

Mine is constant. Never stops. Related to sinus congestion, probably. This in turn started with chemo. continues with ibrutinib. At first it drove me crazy, then it was annoying, now I hardly notice it.

Good luck.

Loulou46 profile image
Loulou46

YES! And it’s in my right ear also. I notice it mostly when I’m watching tv and I pause it .... my right ear sounds like there is someone playing a drum in it. It’s not rhythmic like a heartbeat though. And as soon as there is sound again it goes away.

Cindy

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