24 replies to this topic

[TeddyB]

Hey everyone.

I was at a party Friday, there was a bit more red wine than there should have been, and there was very loud music playing on the stereo and if i remember correctly i played some air guitar to The Who and The Doors, at that point in time i didnt have CML, i just had fun, anyway, when i wake up the next day i have a ringing in my right ear, and i almost cant walk down the stairs without falling.

Of course i thought, this is to be expected after a night of fun, but the dizziness didnt go away until today, and the ringing sound in my ears is still there, i dont mind it during the daytime, but its kind of hard falling asleep with a high pitch tone in one ear throughout the night.

It also feels like my ear pressure is off, like when on an airplane or swimming deep under water.

So its been 5 days now, and the ringing hasnt gone away, anyone else experienced anything like this with or without Gleevec?

I just hope it isnt permanent, if it is, well then im guessing there will be some "fun" times ahead.

What ive learned from this? No loud music without earbuds, and no large amounts of red wine while on Gleevec.

PS: Had my 4.5month checkup today and all was well.

[Happycat]

Teddy,

Are you sure your eustachian tube isn't blocked?  I got that underwater hearing when mine was blocked. And then the pain set in!  I had an infection with fluid buildup. No ringing, though.

My mom got ringing in her ear after an infection. It has not gone away after 3 yrs.

Hopefully yours is temporary and will go away eventually.

I did get ringing in my ears once, when I was lighting fire crackers in the yard. One had a really fast fuse and went off just as it left my fingers, about 2 ft from my ears as I went to throw it. That lasted about an hour or two.  Taught me a good lesson, don't go looking for fire crackers that didnt explode the first time, and expect them to work right!

Traci

[TeddyB]

Thanks for replying Traci.

The ear ringing was much better yesterday, and i was able to sleep 7 hours in a row, so relieved.

If it doesnt go away completely, at least it has gotten alot better

Went to my GP Tuesday, but she just thought i was stressed, and started comforting me in regards to having CML. Yea, i probably am stressed too, but this happened the day after that loud noised party, and i had the time of my life on Friday.

My onc (CML checkup Thursday) thought it might be something called: Benign Paroxysmal Positional Vertigo

And he wanted me to get a specialist check it out.

The ringing in my ears might just be from that loud music, but i see people saying long term tinnitus usually isnt caused by a one time loud music event. (But with Gleevec who knows)

At least i slept well last night, and it seems to be getting better.

I was going to a class reunion party today, but im just not in the mood (dizzy, eye infection etc) so i think i will pass on that.

My ANC and platelets were very good(3.5 and 180) on my last checkup so maybe my body can manage those damn infections on its own soon now.

If if am not well (or at least a lot better) by Monday, i will call a specialist, all my medication and appointments are free now after maxing out my deductible, so might as well get checked up.

Can there be a fluid buildup from using alot of salt water nasal spray? (I have used a lot lately because ive been having a dry nose)

[Sneezy12]

Good idea to have it evaluated by an ENT specialist. Most causes are benign, but it also may be serious.

If it is Benign Positional Vertigo, he can give you head exercises that are effective.

Saline Nasal Spray has nothing to do with it. Regards, Frank

[TeddyB]

Thank you Frank.

At least the tinnitus has loosened up a a lot, i just hear it when i really focus on it now, and it is not such a high pitch, i feel so sorry for those with chronic tinnitus.

[LivingWellWithCML]

Hey all,

Just dug up this thread and wanted to see if anyone else is dealing with this.  I've developed some tinnitus which started over the weekend after some time on my computer ... I did have some headphones on and was doing some stuff that had louder volume associated with it and could've been a bit excessive ... so naturally I am now getting very worried that I have some actual ear damage!  My guess is that it's completely unrelated to CML and treatment, but it is scary none-the-less.  It's a very high pitched ringing in both ears that's been going basically 24/7 since Sunday and won't let up and isn't fading away either.  Yikes.  I'm starting with an appointment with my PCP to see what's up.

When I was diagnosed, I did have a rushing sound in my right ear that was related to the high WBC, but this tinnitus that I'm having now is a completely different and disturbing symptom that won't ease up at all.

Out of curiousity, do any of you all have this problem at all ... and is it possible for it to fade away over time, or could this truly be a permanent condition?  And is there any chance this could be related to CML in some way?

Thanks for any feedback -

Dan

[TeddyB]

Hey Dan, there is always some kind of sh1t being thrown at us isnt there. As if the disease isnt enough

My tinnitus has come and gone a bit since the first time i posted this thread. Last few days have been good and i dont hear it at all actually, but last week i had some kind of sinus infection or flu going on, and it was a bit worse then.

Mine also started after playing loud music, and kept on for about 10 days, then started to get better, and then almost went away. I was at a party at xmas, were they played loud music, and after a few days the tinnitus was back. It seems to just come and go a bit, but its much much better now than the first time i had it. I went to check it out, but the doc couldnt find anything, except that i had dry ear canals. I hope it goes away after a while for you too. Try to let the ears relax, and dont throw to much high pitched sounds at them.

I didnt have that luxury cause of my 2 small boys, so i went out and got some ear protection, which really helped, but i look kind of insane going around the house with those on. I even used protection when going to birthday parties with the boys cause of the sound level, but i swapped the big ones out with skin colored earbuds so noone noticed

I was scared to death the first few days after this started, and i thought i was going to to go insane from the sounds, but it really helped after around 7-10 days, so hang in there Dan!! Good thing you are having your ears checked, its always best to have an expert have a look.

[LivingWellWithCML]

Thanks Teddy.  I still have the ringing 24/7 which is a bit scary, but my hearing overall doesn't appear to be affected.  Guess I will be seeing another specialist at Emory soon...,ugh...   Thanks for the calming words though - will give it another week to see if it will subside...

Still plugging away in anticipation of my two year FISH and PCR in April!

[Trey]

My experience with tinnitus is that it did not appear until a year or so after starting Gleevec, then was fairly constant for many months (seemed close to a year), then subsided and now only occurs occasionally. 

[TeddyB]

Dan; Good thing your hearing isnt affected, mine wasnt either when i had it checked.

Seeing both you guys have the same issue as me actualy makes me a bit more relaxed. At least now i know im not just "hearing things"

Trey, do you think this an issue which will go away after stopping treatment? (If we ever get there)

Do you find any things that make it worse or better? I find that when my kids scream a lot(which they do a lot), it usualy gets worse, and when i go to places where there is loud music played i ususaly have it for a few weeks. Also, when im having a cold or something, its also a bit stronger stronger than usual.

I never ever had issues like this before the start of treatment, so im pretty sure its Gleevec related.

[LivingWellWithCML]

Perhaps this is related to Gleevec!  I have noticed this ringing in a very minor sense over the past couple of years since starting treatment, but I attributed it more to anxiety than Gleevec itself.  But it looks like I aggravated it this past weekend after some higher volume stuff on my computer headset.

@TeddyB :: Yes, I get the same thing when our kids get loud ... it feels like shrieking in my head when they start going crazy and yelling & stuff around the house (perhaps it's a parenting thing, hahaha), but now you guys have me wondering if this is an obscure Gleevec side effect.

Needless to say, I will be seeing a tinnitus specialist at Emory if it doesn't subside over the next couple of weeks.

[TeddyB]

Hehe, those kids do make a lot of noise

My tinnitus has been a bit worse the last week, but ive been having a cold, so i hope it gets better when the cold goes away.

Its better tonight so i guess i will sleep well tonight. Please let us know what your tinnitus specialist says about this, will be very interesting. My GP blamed it on the Gleevec, and so did the ear specialist i visited, but he said it would more than likely go away in time,,,,that was 6 months ago, oh well at least it hasnt been any bother the last few months.

[LivingWellWithCML]

Hey all,

So, I saw a audiologist and an ENT specialist this morning for the tinnitus.  Definitely a classic acoustic trauma issue (probably from the 30+ years that I've played drums), and since I'm two weeks+ since the onset of the ear ringing, it appears that it is permanent and I'll need to deal with it.  However, he did say that a methyprednisolone dose pack (6 day steroid dosing) can sometimes alleviate it ... but it's usually given within a couple of days from when the ringing started.  But he felt that it was worth a shot and wrote me a prescription.

I have read about the drug/drug interactions with Gleevec, but I'm wondering whether it's even worth trying the 6-day dose pack.  Anyone else on TKIs taken a methyprednisolone dose pack before, and is it considered safe?

Thanks for any feedback -

[TeddyB]

Hey Dan, is your tinnitus any better after the methyprednisolone?

Mine still comes and goes, but it actually gets worse on the days i have a lot of stress.

Its generally better now than it was a few months ago though, so things are looking up

Hope yours is better.

Teddy

[LivingWellWithCML]

I decided not to take the methyprednisolone - I just don't want to take any more medication than I absolutely have to.  I have learned to tune it out ... but it comes and goes.  I'm not entirely convinced that it's related to Gleevec though.  I mean, I'm getting older each year and I played drums pretty steadily for over 20 years, so I think it's just some early hearing loss as a result of both factors.  As long as it doesn't affect my sleeping or my daily life, then I'm okay dealing with it.  Of course, now that I just read your update, I'm starting to hear a  ringggggggggggggggggggggggggg .....................

:-)

[Pin]

I get a ringing in my ears, only ever on one side. I think it is related to stress too as on days I'm feeling really bad it happens a lot.

[TeddyB]

Dan, and Billie, now i feel bad for making your ears ring, hope it subsides soon. Lets try not to think about it anymore shall we Hopefully it will go away.

Glad to hear its not affecting your daily life Dan, its not affecting mine a lot either, but it is annoying, especially when going to sleep some nights.

Pin: Yeah, mine is also just in the one ear, i had it pretty bad yesterday after an eventfull day at work.

Billie: If your ever in Norway for some reason, i will invite you to a party

Teddy

[LivingWellWithCML]

I use a Noisemaker app on my iPad for sleeping ... especially when traveling and in a hotel.  The white noise really helps tune out the ringing!