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TINNITUS!!!


Mineola Joe

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Hi folks,

I’m new to this forum and hope to learn some things about what to expect as the weeks/months go by. My surgery was performed on March 20th and turn on occurred on May 3rd.

I’ve lived with poor hearing in both ears for over 40 years and finally decided to go for an implant after hearing aids finally stopped helping. I know it will be a long time before the implant reaches maximum performance but I’m struggling at present.

I’ve lived with tinnitus for many years but the surgery increased it tenfold in my implanted ear. Now, two months later, there has been no quietening at all. My Dr. said it would improve after turn on but that was not the case. My audiologist is having me gradually increase the volume of the device and after two weeks the ‘beeps’ and ‘chirps’ are beginning to overpower the tinnitus. That means it is getting up to serious headache inducing levels. Has anyone else experienced this and, if so, are there any suggestions how to cope?

Sorry for being so long winded. 

Thanks!

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Hi @Mineola Joe and congratulations on your activation.  Which processor are you using?

 

Is your tinnitus after CI surgery and activation the same “sound” as it was before surgery?

 

I have had tinnitus since my early teens.  It was quite loud, especially in my long standing completely deaf ear.  After implanting that ear, I experienced a few days of absolute quiet.  It was so shocking!  Then tinnitus returned but stayed quieter than before surgery.  However after activation, tinnitus acted up.  While my processor was on, it was not noticeable however each night when I removed the processor it was crazy and loud and so strange sounding.  Smile.  I considered it my ear screaming back at me.  Smile.  Thankfully that went away in time.  I still have tinnitus but it is not noticeable when my processors are on and it is much, much quieter than before when my processors are off.

 

I hope your tinnitus settles down soon.  Check out our topic on aural rehab for great tips.

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Thanks for the response, Mary Beth. 

I have a Cochlear Nucleus 7 in my left ear.  I noticed in another post that this forum is sponsored by another brand so I hope it’s okay to participate with my Cochlear.

The tinnitus I’m experiencing is the same sound/frequency as before surgery, just much amplified. It’s continuous, with or without the external processor. I’ve suffered from chronic headaches for 20 years so the increased volume is aggravating my headaches. 

My two week checkup with the audiologist is today. I’m sure she will turn up the volumn and I’m not looking forward to it. 

Thanks again for responding. 

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Hi @Mineola Joe

 

Med-El hosts this forum but it is open to CI users of all brands.  Welcome.

 

Tinnitus can sure be a drag.  Hang in there and keep us posted.  I hope things settle down for you soon.

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Hi @Mineola Joe

Welcome! Hear Peers is for everyone ?

I was implanted about a year and a half ago and prior to my implant I had really bad tinnitus. It was a constant loud ringing and humming. I did my absolute best to ignore it and not focus on it for 21 years. However, when I got the CI, over time it started to quiet down. It wasn’t instant but over the course of a few months.  I viewed it as finally completing the “circle” or noise it was try to hear/figure out. For the most part it has stopped but it does come back here and there. It’s not noticeable when I have the processor on. 

Maybe add some background noise to help distract you - doesn’t have to be loud but something to focus on listening to. That was my trick for many years to cope with the tinnitus. Just an idea! Hang in there! Best wishes ?

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I had a really weird variation on tinnitus today.  As I've mentioned here before, I've had tinnitus continually since I was 15 or so.  The implant doesn't seem to have affected it too much - it was a little louder immediately after surgery but after activation it's much less noticeable, at least with the processor on.

But this morning  - by which I mean, at about 4:00, I woke up to use the facilities, and when I came back to bed I was lying there waiting to go back to sleep and listening to what sounded like whispering people.  I couldn't understand them - insofar as "they" even exist.  I assume this is an example of tinnitus.  It did end today after I put my processor on.

Has anyone else had anything like that?  It was bizarre.

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Just now, stranger said:

Have you got imaginary friends @Mary Featherston:lol:

If I do they're whispering so I can't understand!  :lol:

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Lol my tinnitus “sounds” vary as well. It’s usually the ocean or the jet engine but sometimes like you described it’s whisperiing people. Or bells or something weird. Mine is just at night when no sounds are noticeable. Also not all the time. Once in a while. Or if I’m stressed or had too much caffeine. 

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It’s all good @Mary Featherston.  In the early weeks after activation my right ear screamed back each night.  It sounded like it was replaying everything I heard that day!  Craziest thing.  It went away.

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Interesting, @Mary Beth - that could be it, a lot of people still sound very whispery unless I also have my hearing aid.  I have to say, I hear really, really well with the combination of hearing aid and CI.  I mean, compared to what I've been used to, which is nothing from the right ear and not enough from the left.  I was just on my treadmill and was watching a DVD and the voices were remarkably clear.  I'm hoping it's progress and not just an anomaly.

But I'm sure you're right about the whispers.  My tinnitus has always been ringing sounds, so I'm not used to the whispers or the ocean like @Kara of Canada hears. 

I think I'd quite like the ocean to fall asleep to!  In comparison to whispers and ringing anyway.

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On 5/17/2018 at 7:00 PM, Mary Featherston said:

I had a really weird variation on tinnitus today.  As I've mentioned here before, I've had tinnitus continually since I was 15 or so.  The implant doesn't seem to have affected it too much - it was a little louder immediately after surgery but after activation it's much less noticeable, at least with the processor on.

But this morning  - by which I mean, at about 4:00, I woke up to use the facilities, and when I came back to bed I was lying there waiting to go back to sleep and listening to what sounded like whispering people.  I couldn't understand them - insofar as "they" even exist.  I assume this is an example of tinnitus.  It did end today after I put my processor on.

Has anyone else had anything like that?  It was bizarre.

And I thought I was the only one who hears voices whispering! At night when it is completely quiet in the house I sometimes hear voices like a TV playing in another room very softly. It doesn’t sound like my tinnitus at all. Mine sounds like a thousand crickets serenading me. The only escape from them is to overpower them with a louder noise. My audiologist turned up the volumn of my processor so it’s easier to hear ‘real’ sounds above the crickets. The sounds from my processor still don’t sound like words but they do follow the rythm of the spoken words. 

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I have had tinnitus all my life, I just had to accept it instead of fighting it. Surprisingly, I have never heard voices, just a high tone pitch sometimes uncomfortable. It comes up at any time, but also it is also strongly related to my emotional state.

Funny thing is that sometimes I forget about it until somebody is curious and ask if I suffer from it lol.

 

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