Author Topic: tinnitus  (Read 8984 times)

robertb

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tinnitus
« on: December 21, 2012, 07:25:33 pm »
I DON'T KNOW if I can post an essay but we'll see. I wrote this a couple of weeks ago. Just a personal essay- with embellishments (the spinning, crickets, and neon are real!). I'm sure a lot of you can relate. I'm not going crazy but could understand someone going that way. 

Short Circuit---
    Do you want to hear something? Funny way to start a tale to be told by a person with muted and compromised hearing. But I have to tell it, I need to talk about it because that might be the only thing that I can do with it. YOU definitely can't hear it, although maybe you have your own to attend to. It's really sad, but to give it attention seems to be the only thing that one has to do with it and at the same time what one doesn't want to do with it. I used to be able to ignore it, but it has always been insidious, always around, sneaking up on me. Now it seems to wake me or it just waits for me to wake up in the depths of the night. I know that it doesn't just start then, it's always present. It is there when my head hits the pillow. That pillow which has been my sanctuary lately, the greatest comfort that I have now since my dizzys started. So relaxing, floaty, but then when everything should be quiet, and I'm finally close to the peace that I need so much, it's there. Emanating from the depths of my head, it's there. And that's what I'm writing about, that is why I am up at 3 in the morning with the TV on to mask it or try and make go away. Like the tell tale heart it's getting to me.
 
   This tumor could have helped by possibly deadening it, but it is apparently the devils intrusion. Instead of displaying a fleck of worth, it has toyed with me, tweaked things in bad ways. I imagine it is squeezing it and, just my luck, has decided to change things for the worst. I was hoping that writing, thinking, would distract me but the distraction only seems to amplify.
 
   It's the sound. Used to be a subtle buzzing coming from deep inside my ear. Somebody called it tinnitus but that is just medical jargon to put a word on a phenomenon that no one can explain. As I confided in my neurologist how bad it has gotten since this tumor has taken residence, he explained that it was my inner workings. That was his whole explanation!  How could my body possibly want to go against me with such vengeance? I think that it's electrical, and that explains it; this tumor has skewered my electrical signals, maybe by crossing or clogging synapses. But it has been with me seemingly forever, I can't remember being without it although I know that I didn't grow up with it. But before this tumor, it was tolerable, now it has morphed. Maybe my electrical circuits are shorting, I'm certain that's what's happening in that ear. Also, used to be that the noise of the world would mask it, but not a chance now. It's constant buzzing, even a higher pitch than before. So curious when I can't really hear high pitches that others discern as real but I have them coming from within! Sometimes when my head is spinning, my squeal is spinning with it. Sometimes it is like an incredibly high pitched cricket, chirping on and off with no apparent cadence, nothing to make sense of it. Sometimes it's like neon, radiating throughout that side of my brain. Lately it's always changing, electrons sparking out of control, and it's all a malicious trick the tumor is playing on me. Now as I write it is deafening and seems to be splashing over onto the left side of my brain, my good side. My last refuge. That's its mode of operation, its reason for being, it wants to drive me crazy. rb
"Everybody's got plans... until they get hit".- Mike Tyson 
11mm AN diagnosed Nov. 2012, Severe hearing loss, always dizzy. Gentamicin injections, still dizzy, Translab surgery scheduled 2-27-13

leapyrtwins

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Re: tinnitus
« Reply #1 on: December 27, 2012, 08:08:26 pm »
But before this tumor, it was tolerable, now it has morphed.

Believe it or not tinnitus is all in your head - it actually has nothing to do with your ear or your AN.

Yes, lots of people with ANs have tinnitus - but there are just as many people with ANs that don't have tinnitus.  And in addition, there are lots of people with tinnitus that don't have ANs.

The "trick" to getting used to it - from what I'm told (since I thankfully don't suffer from it ) - is to learn to tune it out.  A change in diet also seems to work for some.

Good luck in finding a solution  :)

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Tbanis2463

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Re: tinnitus
« Reply #2 on: December 31, 2012, 07:19:41 pm »
Hello Robertb

     I know the pain you are going through.  I have had tinnitus for about a year and it's 24/7.  I was Diagnosed with A/N in 7/12 and had gamma knife on 8/12.  Even after 4 months post surgery I still have it.  I bet it affects you primarily while you sleep.  Personally, I bought a pair of good headphones and an Ipad and play rain noise to filter it out.  I'm not saying go out and get these devices, but try to find something that can at least make it tolerable.  I know it's hard.  I went through hell to figure out how to get that "little man that's ringing that bell" inside of my head.  Talk to people and see what they do.  Every case is different so find out something that will work for you.  Good luck!

Tim

Nannybee

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Re: tinnitus
« Reply #3 on: January 01, 2013, 11:24:43 am »
Robert - I hear your pain. Literally. My tinnitus is constant, I know logically that it wasn't always there yet can't remember when it began. I only know that it continues to get worse, and is very difficult for people who don't experience it to understand. A neurosurgeon described it to my husband like a microphone feedback constantly. That seemed to help him understand. It is maddening.
AN 18x19 mm
3 meningiomas
NF2
AN treated with SRS April 2013
MRI Feb 2016 AN shrunk to 17 x 8 mm :)
Constant tinnitus in AN ear
Severe hearing loss AN ear

millie

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Re: tinnitus
« Reply #4 on: January 01, 2013, 04:49:53 pm »
I can  hear what you are saying so eloquently,  Robert.   My tinnitus is not with me all the time, but I do have it. When I have it and I am stressed or around lots of sound for a while, it can be   at its worst.   Try walking or doing something your eyes can tolerate if it is nightime.  I hope you feel better. Mil

Glenda

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Re: tinnitus
« Reply #5 on: January 01, 2013, 09:02:27 pm »
Robert,
I also understand as I have this constantly also.  It is one reason they found my AN.  Lots of fullness and tinnitus resulted in MRI which is how mine was found.  I just had surgery on Nov 28th after being in W&W for 4 years.  I still have the tinnitus but the sound has changed.  Before surgery it would fluctuate like the wind blowing...different high pitches, now after surgery it is just constant, no fluctuations....it does tend to get louder and roar more if I am tired which doesn't take much since surgery to tire me, but that should get better.  In the 4 years I have pretty much learned to tune it out though at times it does get on my nerves.....I run an air cleaner at night and it seems to help me sleep.  I hope you find a way to deal with yours, at least the best we can ;-)  At least we all know we are not alone.
Glenda
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

sidecar Kathy

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Re: tinnitus
« Reply #6 on: January 02, 2013, 03:43:56 pm »
I myself have had tinnitus for over 4 years.  I also can tune it out sometimes.  To help me sleep at night I take a mild sleeping aid and that helps me to sleep.  I hate having tinnitus as I never have quiet.  My tones do change and sometimes I think I can hear it in my good ear.  Surgery is in my future and I hope that the tinnitus either goes away or gets quieter.  The only time I do not hear it is when I am riding my Harley.  I guess the engine drowns it out and it feels good to be out on the road. 

jaylogs

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Re: tinnitus
« Reply #7 on: January 02, 2013, 07:23:54 pm »
Ugh...tinnitus.  If there's one thing I really hate about this whole thing was getting that.  Fortunately it's just below a level most of the time where I am not even aware of it.  But there are times....yikes.  Anyways, I wish there was a magical cure for it, but so far there isn't. You can be sure I'll be first one in line if that day comes! :)
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Sam-NewZealand

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Re: tinnitus
« Reply #8 on: January 04, 2013, 06:31:01 pm »
Ugh...tinnitus.  If there's one thing I really hate about this whole thing was getting that. 
Jay

i agree & i find this is what i can't cope with Esp when people sit looking you in the eye saying its in your head & there is nothing that can be done ... not helpful huh!
MRI on 16 Nov 2012 diagnosed - 29 years old!
Left AN 2.7 x 2.6 x 2.4 cm - pressing on brainstem & sensory nerve for face, full/numb ear feeling, constant tinnitus & major hearing loss in Left ear
7 hr AN surgery 25 Jan 2013
2 hr CSF Leak surgery 16 Feb
SSD Left, dry eye & slight Facial Nerve Damamge

nftwoed

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Re: tinnitus
« Reply #9 on: February 03, 2013, 03:09:07 pm »
Hi;

  I don't wish to be rude. Am not trying to be ... But; Tinnitus goes with the territory and you'll likely get used to it in time if you don't allow yourself to get too revved up about it.
  Some like white noise generators as a fan. I believe they make a type hearing aid which produces white noise.
  Yes; Your brain is searching for a perfect auditory signal.
  Be fascinated by it in how hard your brain tries to find perfect input. There may be dozens of tones which come and go.
   My mornings are lovely. I feel like I've been camping as wake up to the sound of birds each day. "Bird Brain". During the day and eve, this old brain produces a myriad of sounds in search of it's lost love, Ms. Perfect Hearing. Quoth the raven; "Never more."

arizonajack

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Re: tinnitus
« Reply #10 on: February 03, 2013, 04:00:31 pm »
I'm one of those people that had tinnitus for a long time before ever having an AN. Back in about 2005 I noticed that I was hearing a hissing sound in my left ear. It was the sound of a tire perpetually losing air. It wasn't particularly unpleasant and, after I while, I managed to get used to it and was able to ignore it mostly.

Fast forward to the beginning of my AN saga in the middle of December 2011 (Ah, distinctly, I remember) when I discovered a substantial loss of hearing in my right ear that coincided with the onset of tinnitus in that ear. 

It started out as the sound of wind chimes playing Silent Night. As if it wasn't bad enough to be inundated with Christmas music everywhere else, it also had to be in my head. I'm just thankful that it wasn't Little Drummer Boy. Can't imagine what I would have been driven to if it had been Rump a Pump Pump 24/7.

Over the next several months the sound changed several times. For a while it was still wind chimes but not anything recognizable. Then it was like a tuning fork being repeatedly struck. A tone would sound, die away, then sound again. After that I was getting sucking sounds in that ear. Have no idea what that was about. By the summer of 2012 I could swear I was hearing Morse Code.

Then, one day last October, there was no more tinnitus in the right ear and there was zero hearing in that ear, too.

So now I'm just left with the ever present tire deflating on the left side. Always hissing, never missing, never missing through my brain's back door.

(Interesting how Poe references keep turning up.)

 ;D
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

jsanders1379

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Re: tinnitus
« Reply #11 on: February 03, 2013, 08:41:30 pm »
haha-loved your post- I also get the hissing and tuning fork things..also some weird clicking that comes in spurts....
Jeanne
Dx 10-25-2012
5x6x4 mm
3-27-2013 MRI 9x6x6 mm
GK  5-7-13 Swedish Hospital, Denver

arizonajack

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Re: tinnitus
« Reply #12 on: February 05, 2013, 04:30:39 pm »
I came across the following article on the web while looking for something else.

http://www.dizziness-and-balance.com/disorders/hearing/tinnitus/TENS.html

I have no opinion as to whether it's a workable solution for anybody. As usual, do your own research, consult your physicians, and make your own decision.

Interestingly enough, though, Aetna covers the use of TENS for tinnitus when certain requirement have been met.

http://www.aetna.com/cpb/medical/data/400_499/0406.html

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Elizabeth Cuttler

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Re: tinnitus
« Reply #13 on: February 12, 2013, 04:45:07 pm »
I don't have an AN; I was diagnosed with tinnitus a few months ago and I can hear all those noises 24/7. The noise isn't always the same, it varies.
Any advice?
I am really desperate.
Thanks,

Elizabeth

arizonajack

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Re: tinnitus
« Reply #14 on: February 12, 2013, 07:09:23 pm »
Welcome to the site.

I don't have an AN;

Are you sure?

There's generally only one way to know and that's with an MRI with contrast to see if one shows up.

I was diagnosed with tinnitus a few months ago and I can hear all those noises 24/7. The noise isn't always the same, it varies.
Any advice?

You can read all the posts about tinnitus by clicking on the word "tinnitus" in the following search results:

http://www.anausa.org/smf/index.php?action=search2

There may be some things you can do to mitigate the impact of tinnitus on your life but, basically, there isn't any cure for it so if you go online to do research make sure you take all the ads for remedies with a grain of salt. They are likely all snake oil.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0