8 replies to this topic

[Terran]

The buzzing seems to be getting louder. I know it's tki related somehow. Anyone have tips for coping? It looks like treatment might be too much to hope for.

[Buzzm1]

an earlier tinnitus thread http://community.lls...us/?hl=tinnitus

[Dom]

Hi Terran,

I had severe tinnitus for about 18 months. Brought me to my knees, that's how loud it was. This was before cml though, and I consider myself cured of tinnitus before cml and that continues today. So don't be certain that the tki is doing it.

Don't be fooled into thinking you need silence. In fact, after discussing it with an ear Doctor, I found that silence is pretty much your enemy. Your brain is making up a sound, so if you feed it a rich environment of pleasant noises, it will stop. Because of my location, I used the beach a lot, waves, seagulls, wind, etc. At night, I used a white noise machine, and today you can get sounds on the computer or phone. You aren't hiding the noise, you're giving your brain an alternative.

Don't bother with ginko biloba, or any other herb. And there is a little hand held vibrator that you stick in your ear -- don't bother. But warm showers, letting the water in my ear, gave me temporary relief.

Today, I have a very low level hum that doesn't bother me at all, and I have no problem sleeping.

[Cool Hand Leuk]

the sound of crickets seems to mask the sound, but can also be just as annoying

[kat73]

Terran - First, get it checked out properly with an ENT.  It COULD be something fixable; it could even be something threatening.  Most probably not.

 

When you find out that you just have to live with it, you WILL find a way.  All of the aforementioned coping strategies have merit - try them and see if they work for you.  I took a different approach, but it's just me, so I'm only offering it as another idea. 

 

I got to the point where I found I was listening to my ears all the time and the feeling of being trapped - of never, ever being able to "turn it off"  inside my head -  began to frenzy into a kind of madness.  So I willed myself to Stop. Hearing. It.  I ignored it - sort of brushed it away with my mental hand - and substituted something else quickly - another sound, another thought.  Takes a lot of relentless practice, but it works.  Over the years, even though the tinnitus continues to this day to get steadily worse (sometimes I actually laugh when I realize I've added a new tone to the mix - what're you gonna do, cry or laugh?) I have been able to keep it shoved out of my daily life and consciousness - I can even dip in and listen to it sometimes, then shrug, and move away.  But I've been at this since 1992. 

 

I did notice a big change after starting the TKIs - I would say it quickly accelerated to twice what I had been dealing with.  I have had a concomitant hearing loss since starting the TKIs and now wear hearing aids.  There are, I think, some case studies in the literature, but I stopped researching the connection with TKIs because:  1.  I have to take them anyway, so what're you gonna do, and 2.  Absolutely NOBODY in the medical field - onc, primary care doc, ENT - cares that I'm going deaf (not INSIDE my head, of course, that's just getting louder).  Every once in awhile I succumb to terror and wonder what it will be like to be stone deaf.  It just fuels my desire to get off my TKI someday. 

 

Wow, I see that I have provided a real downer for you, instead of the help you requested.  Maybe I should delete this?  No, I'll leave it, in the spirit of sharing info empowers us.  Maybe you will be the one to get some attention on this, who knows?  I suspect it has something to do with the TKIs messing with the way collagen is managed - there is a connection there to renal function, which also happened to me after starting Gleevec and now is permanent.  Probably just in susceptible people, genetically.  At any rate, I had to move on and just deal.  I know you will too.

[hannibellemo]

I first realized that I had tinnitus when I was sitting out on the screened porch with friends mid-summer and mentioned how loud the night sounds (bugs, frogs, etc.) were that night.

 

The slow turn of the head towards me and the very strange looks on their faces made me realize we weren't hearing the same things.

 

When I read this post I tuned in to them. Mostly they're in the background and I seldom notice them. For me, there are worse things to be hearing then summer night sounds. 

[kat73]

Pat - You made me laugh with that memory.  We have a tiny vacation place in SC in a maritime forest at the edge of the marsh, and going to bed with my book I would listen to the cacophony "outside" - ha!  I too remember the night I mentioned it to spouse and got the slow head turn.  That was a long, long time ago.  Sigh.  Now, what I miss intensely is hearing the wind in the tops of the pines there.  On the bright side, at home we live under the flight path for Reagan National, and I'm the only one who can sleep through it with the windows open!  The planes start at 4:45 AM and go to 12:15 (midnight) - both illegally - thanks a lot, Congress-people.

[Trey]

The tinnitus subsided for me over time.  It took several years.  Then the tree frog farting started.  "Was that you?" "Was what who?"  "Precisely."  "Who cooks for you?"  "What books from you?"  "OK then."  "Goodnight."  "Night."

[Terran]

I've had that conversation.