Pulsatile tinnitus and hearing loss

[Walkinginnature]

I had a work up for onset of pulsation tinnitus and later a sudden hearing loss in one ear by Neurologist ,ENT ,Dentist and they found no reason for tinnitus and attributed hearing loss to a virus attacking my nerve. I am now hearing from this site that others are saying that these symptoms could be from CLL. Some of my hearing is coming back so I am hopeful that it is not due to nerve damage. Still on watch and wait. WBC’s 250,000. Only slightly anemic and platelets are good.

[GMa27]

I have had CLL for 18 years. In remission 6 years. I have had tinnitus since college approx 1974. My hematologist has never mentioned tinnitus in relation to NHL. I think it's common to get it. A lot of my non CLL friends & relatives have it. Most times doctors can't figure out cause. In my case they said it was an antibiotic. Who knows. What did your hematologist say?

[Walkinginnature in reply to GMa27]

I do not think I mentioned it to my oncologist because I had all the other specialists working on it and never related it to CLL. I will be asking him that question. ( he usually tells me to stay off the internet)

[Walkinginnature in reply to GMa27]

Thank you for your response. Just trying to gather as much information as I can.

[Auburn67 in reply to GMa27]

I had pulsating tinnitus with no hearing loss for a few months in my left year. I also had many enlarged lymph nodes in my neck. After treatment with O+V it went away after about a month of Gazyva. But I’ve had it also once before last year and it was tachycardia. Medication (Metoprolol) cleared that episode also.

[BigDee]

Hello Walkinginnature

Tinnitus is fairly common in people with hearing loss. I have had hearing loss for 73 years and for the most part ignore the tinnitus. Blessings.

[annmcgowan]

Hi I have tinnitus, not pulsate. I keep asking my haematologist about it and he repeatedly says there is no evidence is linked to CLL or CLL medications to his knowledge.

Ann

[Walkinginnature in reply to annmcgowan]

thank you for replying

[ShoulderCat]

Hello Walkinginnature,

I have had regular tinnitus (crazed cicadas) all my life. I have had pulsatile tinnitus (whoosh whoosh of the ocean to the rhythm of my heartbeat) since my lymph nodes became very swollen due to CLL.

The pulsatile tinnitus is only in my right ear. It’s the side where my lymph nodes are most swollen (to the point that people comment on them).

I also get headaches (or rather a pain in my head) on the right side only. These are new since CLL too. I attribute them to my lymph nodes as well.

My pulsatile tinnitus is most pronounced when I lie down. Sometimes it’s not there.

I pay attention to my body and my neck / jaw area feels unnaturally tight. It makes sense that swollen lymph nodes would push on surrounding tissue and that there might be consequences.

At the same time, these are my observations only and I am no scientist. Whether they’re linked to CLL is debatable.

What is certain is that I am going to start treatment soon. If all goes well, my lymph nodes will shrink. And hopefully, the crashing surf of pulsatile tinnitus will calm down too.

I’ll let you know what happens.

Good luck.

Michael

[Walkinginnature in reply to ShoulderCat]

Thank you for sharing that information and I wish you good luck!

[Thundercat2]

I have tinnitus also and have for quite some time. I don't think it's 100% related to CLL, but I also got the pulsatile variety when my white cells were high and my hemoglobin was low. I got an ear infection that turned into meningitis right before I was going to be treated and ended up in the hospital. Treatment took care of the pulsatile tinnitus, but I still have the garden variety tinnitus now and some hearing loss from the ear infection.

[Walkinginnature in reply to Thundercat2]

Thank you for responding. Good luck with your treatment!

[Poodle2]

I turned almost deaf in 2022. It started with regular upper chest/sinus infections, getting blocked ears and clearing that up when on antibiotics...until the antibiotics stopped working for it and I turned deaf in one ear. This was absolutely awful, I'm a teacher and I really struggled teaching in big rooms as I didn't understand the children. Really awful, I then started to deteriorate in my other ear and it got really bad, I started using subtitles when watching telly as I couldn't hear the TV unless it was on 100! I remember the nurses in the day unit on day 1 of my O+V treatment couldn't communicate with me effectively, they had to shout into my "better" ear. My CLL doctor was never concerned, she didn't think it was linked to CLL and no one else seemed worried I lost my hearing...I woke up after my first O infusion and I could hear! It was like magic or miracle. I'm 100% sure my hearing loss was due to my CLL, I personally think my enlarged nodes were causing the problems - how and what was really happening - I don't know.

[Walkinginnature in reply to Poodle2]

Sorry you had to experience that, but glad to hear things are improving!

[Skyshark]

Just before Christmas 2018 i woke up, deaf. 3 days later while taking a sip of beer my hearing returned on the left. Seems I had gone deaf on the right sometime before but as the loss wasn't uniform, -50bd on lower 3 octaves, -20db on upper 2, I hadn't realised that this was me and not the earbuds I was rejecting. Had an MRI scan and got a NHS hearing aid in 2019, it was pretty useless, friend calls it my ear plug.

Summer 2020 it happened again. This time my hearing hasn't returned. LHS -70db on lower range, didn't get a hearing aid.

Really odd but I can hear Google voice test message for text to speech really well, not so good when I give it actual text to read out loud.

I've got musical tinnitus. It varies in intensity and repertoire. Frequently sounding like a drunken Welsh male voice choir, they don't know the words but will jeer when they get it wrong. Sometimes it sounds like a large echoey space with hub-hub of people and an indistinct distant tannoy. There have been drum solos and guitar riffs. Another I call "high plains drifter", sort of the background music from westerns when they are just moseying along. It can be different side to side, music one side and a whine on the other.

Early on in summer 2020 I also had dizziness for a few minutes when I got of bed.

I went for a hearing test and tried some £3-4K private hearing aids last week. They were worse than the NHS one.

I've become quite dependant on Android "Live transcribe". This is an accessibility tool on all Android phones >5 since late 2020. It's not very good in crowds or restaurants or with background music.

[Snowgoddess in reply to Skyshark]

I'm sorry to hear about your hearing issues, but your description is most delightful! Thanks for the tip about Android "live transcribe".

[Walkinginnature in reply to Skyshark]

Enjoyed your descriptions. My grandson plays the drums so I definitely have to plug my ears up st times. Thanks for your informstion

[cajunjeff]

To my understanding, the most common cause of tinnitus in cll patients is from very low hemoglobin, often association with cll triggered hemolytic anemia.

I have always had some hearing loss and some background tinnitus that is usually only noticeable if I stop and listen for it. I am sure that’s probably from years of duck hunting and having my ears rung up more than once by someone’s shotgun going off too close to my ear and my failure to consistently wear ear protection when hunting.

When my hemoglobin dropped to 7 due to my hemolytic anemia a few years back, my background tinnitus turned into the sound of large waves, relentlessly pounding the shore.

Once I got my anemia under control, my tinnitus turned back into permanent background noise that I have learned to ignore. I asked my ENT doctor what to do about my tinnitus and she said nothing can be done, you just hopefully eventually learn to subconsciously block it out

[Walkinginnature in reply to cajunjeff]

Thanks for your reply. I’m working on convincing myself that the sound is like a baby in the womb. Im only mildly anemic now so I had better get to work on making that noise soothing!

[Shedman]

Yes, our CLL can cause odd problems in any tissue - commonly lymphatic, more unusually almost anywhere.

Keep in mind that covid19 is a vascular disease that commonly causes hair loss, hearing changes, eyesight changes, and issues to pretty much any/every organ of the body.. can affect fertility, or give rise to ED (forgive the pun).

If you've had covid, that's a greater likelihood of causing tinnitus than CLL, though your lymphocytes in the 250k level are more of a likely issue than at 20k; it might just be another reason for you to start treatment - just maybe treatment sees some change to the tinnitus.

[Walkinginnature in reply to Shedman]

Thanks for the information. I also have had Covid. Didn’t think of that.

[Catlove71]

I had pulsatile tinnitus when my hemoglobin went down to 9.5 or so ( it was as low as 8ish). but improved when hgb came back up to near normal with CLL treatment (Acalabrutinib). . At the same time my BP was quite low too … 90/60… this also normalized when the hgb came back up.

[Walkinginnature in reply to Catlove71]

Thanks for the information!

[Dutchie-1963]

Indeed Pulsating T. Is a search “in the dark”.

For me, It started when nodes become swollen. Predication was that upon treatment, also the PT would leave.

But no, in my case it became more intens. Especially when the fatique kicks in. There is where my search started.

Low Hb, not the case anymore

Swollen node, there all normal

High bloodPressure, all between normal limits

Tense muscles in the neck area, several visits to physiotherapist didn’t help

Stress, could be but V&O is doing a great job and I’m grateful for that.

Left are two options.

1. I visisted an ear specialist. He advised an MRI to see if the veins are normal. The “sounds” oke.

2. Then I studied the side effects of the medication. And found out that there is a rare sideeffect reported on cotrimoxazol. In the netherlands this antibiotic is given as precaution during treatment of CLL. I asked my hematologist if i could skip this med for a couple of weeks to find out if there is a correlation. Next week i will see her again.

So far, i keep you posted on my search.

[Walkinginnature in reply to Dutchie-1963]

Thanks Good luck!

[Steffi50]

I had pulsatile tinnitus before treatment and after treatment am left with just tinnitus. I have been plagued with upper respiratory tract infections and sinus problems for years now which have not cleared up but are better than before O&V which has not helped. I use the word 'just' for tinnitus advisedly as it is annoying but, more importantly for me, as CLL progressed my hearing tanked in both ears and definitely those pesky nodes were making things worse - so many of them pushing on everything in my neck/throat/ears/top of spine. CT scan showed loads of them. Hearing has not come back post treatment. It was definitely not age related as the decline was too rapid. I find that hard to cope with but am glad to be symptom free in other ways. I can just about make out my grandson (aged 2) saying 'more strawberries nana' in his sweet little voice (which he does repeatedly). I hope the decline has now stopped but who knows. They want to give me a cochlear implant. Has anyone else had one?

[Goopteal]

My husband, a Vietnam veteran, had it terribly. He found a specialist who used steroid shots in the ear, water pills, and a high-quality hearing aide. Previously, other doctors said nothing could be done. I had the pulsating type with AIHA when hemoglobin was 7. Also felt like my ear was clogged. The blood transfusion and Rituxan fixed it.

[SeymourB]

Walkinginnature -

I had pulsatile tinnitus during a COVID and bacterial sinus infection in 2022. My heartbeat was so loud, it was hard to sleep.

What set it off for me was sinus rinsing when my sinuses were completely blocked. The sterile saline instead went up my eustachian tubes to behind my ear drum. That's when the heartbeat began. I also had profound hearing loss, confirmed by my ENT. He had nothing to offer. Essentially, my eustachian tubes were stuck open. Yawning, chewing gum, and the usual recommendations for ears popping did not work - because the problem was actually not too much pressure, but too little.

It slowly subsided over the next 2 months, and I regained my hearing.

The name for a eustachian tube stuck open is patulous eustachian tube:

medicalnewstoday.com/articl...

An ENT might be able to diagnose it, but it's hard to see, I think. My ENT could not see a problem despite the symptoms.

If CLL causes it, there has to be a mechanism. There are no lymph nodes near the inner ear. But lymph fluid can be almost anywhere, as can infections. ENTs can do a tympanometry test to see how the ear drum rebounds. Usually, that's for increased pressure behind the ear drum. Tympanometry was inconclusive for me, but might be different for you.

I also have vestibular migraines on one side for the last decade or so, and recently re-did the diagnostics now that I've finished treatment. I was hoping for improvement, but they see the same signs they saw when I was W&W 11 years ago. I'm now re-doing vestibular physical therapy to strengthen my legs and try to re-train my ear-eye-leg coordination. That's hampered by a cornea on that side damaged by shingles, for which I just started Oxervate eye drops in an attempt to regrow the scarred nerves. 8 weeks of eye drops 6 times a day.

Apart from the vestibular function tests, they did more refined MRI and CT of the inner ear looking for any swellings or growths that are not apparent on the normal MRI's and CT of the head that I've had. They didn't see anything. The type of MRI is called MRI IAC (Internal Auditory Canal).

pubs.rsna.org/doi/full/10.1...

MRI of the Internal Auditory Canal, Labyrinth, and Middle Ear: How We Do It

RadiologyVol. 297, No. 2, Sep 22 2020

It usually uses a more more modern, 3 Tesla magnet MRI. I did mine on a 1.5 T unit, and complained. But they did tighter slices than the usual MRI.

But that's all diagnostic, and might show the way to a treatment for the pulsatile tinnitus - or not.

=seymour=

[PCM03]

The same thing has happened to me.

[Eucalyptus22]

I had pulsatile tinnitus before starting Acalabrutinib. My GP recommended CBT for it and didn't see a link to CLL. I then started treatment, but had low haemaglobin so had to have 2 blood transfusions . Pulsatile tinnitus stopped the minute I left the hospital!!

Fast forward to 2021 I started with regular hissing tinnitus and have had that ever since. Two months ago that was joined by TMJ in the same ear/jaw. Happy days!