ANA Discussion Forum
General Category => AN Issues => Topic started by: DLM4me on March 23, 2009, 07:06:04 pm
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Okay, I'm being SOMEWHAT facetious here, but considering that my tinnitus is outrageously loud and annoying, and that I keep SAYING I'm going to lose my mind if it doesn't stop, I got to wondering: Does anyone really lose their mind due to tinnitus? :o
Speaking of tinnitus, I'm still grappling with the idea that it can not only remain after surgery but actually get worse. Huh?! How is that even possible? I never had tinnitus before in my life until this stupid AN decided to grow on my right side. I'm convinced that once the AN and its associated swelling/pressing/blocking are gone, the tinnitus will go away too. Am I being ridiculous? ???
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This thread title cracked me up!
I think you'll stop noticing it so much. Mine seems worse after I'm at an event, like a big party or noisy restaurant with a "din." Then when I get home, it's like my ear is reprocessing all that sound and it's louder and more noticeable. Other times it's there but less so and I think you learn to tune it out. (?)
Mine was so bad last summer, and sometimes it would be a distinct beep -- I kept checking my cell phone thinking it was a message alert or something. :o That never happens anymore.
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No...sadly, it does not go away, but as lilan said, you do get used to it for the most part. Some times and some things can certainly cause it to ramp up at times - loud restaurants, parties, tv volume, etc.
Of all the AN issues (pre and post op), this is the one I least like - bothers me more than SSD - however, I don't think I'll lose my mind...but, then again... ::)
Cindy
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My "base" tinnitus didn't change after surgery. I have the same highish pitched tone, on the rather loud side, constantly in my AN ear after surgery. I'm either completely SSD or, more likely, can hear very slightly some low tones. Since surgery, I have new tinnitus issues. Just as Cindy and Lilan noted, I get increased volume and tones in noisy environments. Even the phone will invoke new noises for me. There is a careful balance of TV volume I have to keep in order to still be able to hear it, but not cause interference in my other ear. Am I happy about that? Nope. But I know it's mine to keep, in sickness and in health, til death do us part. You may now kiss your brain. <music plays, rice is thrown...>
Seriously though, for most it is not something that will control your life, just make a few adjustments. I'm only a few weeks post op, but I think, like others have said in other threads, you eventually just get used to it and almost forget about it at times (I'm still waiting for that to happen).
Ernie
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It should slowly get better, and you'll learn to cope with it. Although it may never go away, you should get to a point that you barely notice it. It just takes time. That's been my experience, anyway.
Peace,
Verl
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Mines been with me for 10 years and its only after reading your message I suddenly remember its still there. ;)
Reminds me of foot steps of neighbours above, you can let it really wind you up and you will be listening out for them, or let it go and you will soon get used to it and forget about them.
Rick
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I`ve had mine for thirty years. I`ve tried everthing there is to get rid of it. It`s been 2 years since I was diognosed with AN. Maybe this was what caused it all these years? I`m presently W+W and everthing has been "stable". The latest thing I did was Neuromonics. This has probably worked for me most effectively taking the tone down 50% (a great help). In any case tinnitus does become something that you do get used to ( a part of you). Good Luck, Mickey
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My tinnitus got worse after the surgery, but they said my AN had been in there way too long (5-10 years too long).It is on the deaf ear of course.
So depending on how long the tumor is smashing the hearing nerve probably will affect post op tinnitus.
And yes, unfortunately I sometimes feel I AM losing my mind. Hate to say it but it's true. I feel your pain >:(
What to do? Keep on truckin. I try to stay busy. Can't sit in silence anymore.....
I'm on XANAX low dose, which seems to tone it a bit.
I also can't wait for spring to go outdoors more. I'm in the rainy northwest, so that doesn't help. LOVE the outdoors. It blends with the outdoor sounds. Beach waves are good too.
You live near a beach?
Maureen
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DLM4me,
What you have post surgery is also what I have since surgery.
It is called “hyperacusis�
Here are a couple of links about this condition to help you understand the problem more
http://www.dizziness-and-balance.com/disorders/hearing/hyperacusis.htm
http://www.hyperacusis.net/hyperacusis/what+is+hyperacusis/default.asp
I will not delude you and tell you that it goes away but I will tell you that your brain is very plastic and will eventually adjust. You will also, over time, learn coping skills to deal with it.
Know that since surgery I am single sided deaf (SSD). (My hearing was excellent before surgery on the AN side thus my brain woke up, after surgery, very confused when processing hearing... thus the hyperacusis ). My acoustic nerve was severed and the facial nerve was damaged in the tumor removal process.
I often wear an earplug:
• In industrial buildings with fan systems
* When my teenager is listening to music (although most parents want to do this anyway)
• In my family van (which has the worst aerodynamics and is so noisy)
• When my husband unloads the dishwasher
• In a crowds at my youngest child's soccer games
• The list goes on…
Unfortunately the best earplug I have found, that filters the frequencies that most exacerbate my tinnitus but still allow me to hear, are florescent orange. :-\ :P The flesh tone colored ones, I bought at the hyperacusis network, plug too much sound making my good ear deaf … Nevertheless I wear these if I wanting to be less noticed by the florescent orange ear plug that screams out to onlookers,
“Look at me, look at me… weird lady wearing only one earplug… Look at me!� ( ;D But hey for cold days Steve knit me a hat that covers this up nicely :-* )
To answer your original question- I have NOT lost my marbles, just yet :-\ ;) :D ;D, from this annoying condition. Probably the hardest for me are the frequencies that make this the worst being the lower bass tones- such as my husband voice. He comes home and the first thing I do is put in an earplug :-\ … Any onlooker, not experiences with AN tumors, would think we have a bizarre relationship and marriage… ;)
The reality is:
• My husband is a man with a manly voice and I cannot expect him to talk like a girl. :D
• My teenager is normal and is going to play music that aggravate a parent as most teenagers do … (that and taking a sharpie to their converse sneakers and refusing to wear clothes that her mother thinks looks nice (Mantra: I will get through these teenage years… I will get through these teenage years…) ::)
• There will always be crumpling of grocery bags to drive me crazy… >:(
• Restaurants are usually noisy as these are places intend for people to socialize in :-[
• All industrial buildings have fans for ventilation ???
The key thing is I cannot change the world I live in – just learn to cope and make adjustments so I can adapt to it … and help and coach others to do the same. :)
Try some earplugs but be careful not to become too dependant on these or your brain will not readjust or learn to cope. Read up on this topic- knowledge is empowering. 8)
You WILL get through this without losing your mind!
Keep moving forward.
DHM :)
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Yikes,
Great info DHM!
I about lost my mind reading how you have to deal with tinnitus :o
EMPATHIZING WITH YOU,
Maureen
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DLM4me:
I know tinnitus can be maddening because, like many others, I've lived with it - for years. My AN surgery and subsequent radiation did not change it at all. I simply ignore it, for the most part. It's there, but it's hardly life-altering for me and I refuse to focus on this relatively minor distraction. I realize that isn't so easy for some with really bad (loud) tinnitus that is affected by noise, etc, and I sympathize with those folks. While there is no specific 'cure' for tinnitus, there are treatments that can sometimes help. There is a tinnitus association (complete with a newsletter) that offers lots of information about the problem and works to capture funding to help find a reliable 'cure', which we would all welcome. You can access their website here: http://www.ata.org/ (http://www.ata.org/). I trust this may be of some help to you.
Jim
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Thanks for the great replies! DHM, I appreciate all the info.
And, yes, I did think that the subject might cause a few chuckles. :)
Seriously, my tinnitus is more annoying than the other two major symptoms I have right now (still pre-op), the extreme dizziness and the hearing loss. And that's saying a lot! The dizziness has relegated me to spending most of my time lying down on the sofa in the living room, as even sitting up makes it worse. And the hearing loss...it sucks. But the tinnitus? ANNOYING!! :o >:( It's just so pervasive. Right now there's NOTHING that makes it ease up--not background noise, talking on the phone, watching TV, music...just nothing. And when I'm trying to go to sleep it's outrageously annoying. (I already go to sleep with the TV on (a personal quirk, what can I say?), so I already have background noise in the room that should do some masking...but it doesn't.)
So it's unlikely I'll lose my mind, eh? Okay, I'm going to TRY to believe that!! Stay tuned...once post-op I guess we shall see. ;D
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After my first AN, the tinnitis was really bothering me and my mother-in-law got me a sound machine. It really helped. Also avoiding loud places helps me a lot because for instance, after going to a concert where the noise levels are really up there, when I leave, my ringing stays at that loud level for a while afterwards. That's when I really can't stand it so I avoid those situations as much as I can.
Good luck, Dianne
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Here's a link to a recent story in the New Yorker magazine about tinnitus that suggests that biofeedback training might be helpful. The good part is at the very end of the article.
http://www.newyorker.com/reporting/2009/02/09/090209fa_fact_groopman?currentPage=all
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I think I must have! :o
Brenda
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Actually, on the serious side...I do believe you can lose your mind! I have heard that there have been cases of suicide because of extreme tinnitus. One of our newscasters in Portland, several years ago (actually I read her story and then noticed I had the smallest of hisses in my ear.... :o) had a major feedback in her headphone/earbud/whatever you call them, and it blew out her ear so bad that she has the worst case of tinnitus that OHSU in Portland has ever seen. I remember the comparison that they wrote about in her story. They said, "Imagine that you are sitting on your front porch reading your book, and two or three fire trucks pull up beside your house with their sirens blaring, and they never leave." She has suffered terribly from her tinnitus. She is on disability and she misses her work in TV very much. Most of us are fortunate that it is an annoying problem, and a few of us are unlucky to be the ones who truly are "suffering from tinnitus". My sympathies. Try a loud fan in your bedroom. It may help.
Unfortunately, once tinnitus sets in, it rarely leaves. >:( :'(
Hang in there,
Sue in Vancouver, USA
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Well Vincent Van Gogh... he went totally loopy ... but then he did not have people in the internet to to chat with and gain support...
Who knows if he had an acoustic neuroma or not??? :-\
One theory was his tinnitus was caused by lead poisoning being that his artworks were loaded with lead paint. He was the eccentric artist who sent his ear to his girlfriend... so there is one example who lost it...
There was an entire expressionist movement based on his work. To think that he may not have been just expressing himself but painting what he actually saw...
Hang in there ...
DHM
DHM
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Hello,
My tinnitus has gotten better post op (still there a bit). I had translab 8 weeks ago.
I hope all gets better and improves for you soon.
Keri
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This is interesting. You never know what's on the Internet! Famous people with tinnitus.
http://members.fortunecity.com/nrbq1/tinnitus.html
Sue in Vancouver, USA
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I often wear an earplug:
••When my husband unloads the dishwasher
Your husband empties the dishwasher? You're lucky.......
Seriously, my tinnitus is probably not as bad as yours. Mine is a high pitch squeal, 24/7, (used to be a scream) on a deaf ear and that is just NOT FAIR.
It is a daily challenge. I'm able to sleep through it, thank GOD.
And as I've said many times low dose xanax helps tone it down. Gotta go to a shrink, though.
Maureen
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I often wear an earplug:
••When my husband unloads the dishwasher
Your husband empties the dishwasher? You're lucky.......
I'd show any man the door if he thought he was above doing housework. Sorry, but being born with testicles is simply NOT a good enough reason to exempt a person from doing housework.
But back to tinnitus...I have Xanax (I use it for sleep), and have tried over the past month or so using a low dose during the day for the tinnitus...but it didn't help. At all. I wish it would!
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...so quiet in the AN ear, yet SO loud...
Cindy
(my husband washes our dishes by hand every night, can't seem to get him interested in a vacuum cleaner, however :D)
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DLH4me,
Sorry the xanax didn't work for you. Like I said, it toned it down from a scream to a screech, so it's better than nothing!
OOOOHHHHHH I hit a nerve with the dishwasher, didn't I????? :D
What can I say-my husband was the last of 4 boys and the best behaved, so he was well......spoiled. I blame his mother.
You can't teach an old dog new tricks,you know?
He's a good man though, so that counts for something.
Maureen
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Does anyone actually lose what???? ;D
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Someone mention me?
I have it bad on my AN side but have learned to suppress it. It really doesn't bother me.
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Having only recently been diagnoised with AN, and as a PhD psychology student, I have been looking into CBT (cognitive behavioural therapy) and tinnitus. There seems to be some really effective techniques available... Even a study you can partake in at YALE among other places.
http://www.yaletrials.org/clinicalTrials/displayTrial.asp?nctID=NCT00724152&pageID=1&row=1 (http://www.yaletrials.org/clinicalTrials/displayTrial.asp?nctID=NCT00724152&pageID=1&row=1)
http://clinicaltrials.gov/ct2/show/NCT00724152?cond=%22Nervous+System+Diseases%22+AND+%22Hearing+Disorders%22 (http://clinicaltrials.gov/ct2/show/NCT00724152?cond=%22Nervous+System+Diseases%22+AND+%22Hearing+Disorders%22)
http://www.ncbi.nlm.nih.gov/pubmed/17253549 (http://www.ncbi.nlm.nih.gov/pubmed/17253549)
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HA - love the topic name! There are many days I think I am going to lose my mind because of tinnitus and hearing distortion!
Mine is so loud and many pitches. All the above responses are great - when I attend a concert, it does help to have an earplug
or a noise cancelling earphone. Bose has the ones that go right in your ear so it is not obvious. Much luck to you.
You learn to live with it eventually because you have to!
Paula
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Yeah, I have it pretty bad in my right ear. It drives me nuts. Funny story, (funny now....) last night I was in the bedroom watching TV and on the internet, when all the sudden, I started hearing ringing in my GOOD ear!!!! I sat up in a panic!!! I am so terrified now, that I only have one good ear, what if something happens to it???? I ran into the living room and started crying to my boyfriend. He calmed me down on the outside, in the inside I was still crying.... We agreed I'd call the doc in the morning (when there is NOTHING he can do about it anyways!!!). When my boyfriend came to bed, he laid there for a minute, and then said... "I hear it too!!!!" It turns out it was my computer!!!!! I was so relieved!!!!
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Tinnitis is my new normal, I hate it. I have come to the realization it is not going away, wish it would. I do love my sound machine, love the wterfall and the rain ones but then all that water dripping makes me want to pee.............just can't win sometimes.
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That's a funny one with the computer noise :D
How were your MRI results, today Whitney?
maureen
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well my tinnitus hasn't gotten worse since surgery. about the same level always. and i have gotten used to it. But i'm an Engineer and we can ignore on queue , we are taught to. and i been married for 37 Yrs so tuning out is easy LOL :D
i have found background white noise to be essential to help my sleep patterns which arent good in the 1st place. but with the brain to hear rain or streams wind etc. the tinnitus isnt a problem at nite for me.......
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:'( I beginning to think its possible. I have had continous loud like a million cicadas in my head left ear for over 3 weeks now came out of nowhere. This is why I suspect and AN but hasnt been confirmed yet, i am a little afraid it might be something else. Like they all say here if you get a brain tumor an AN is what you want. My tinnitus according to DOC second ENT i have seen is caused by scar tissue on my eardrum from a bad ear infection 2 years ago, what?, why would it take 2 years to come on. And other ENT convinced i have sinus infection so i am on 2 weeks of stong antibiotics. The tinnitus is so loud i cant ignore it. Does anyone have any suggestions for making is less noticable. Hang in there dont think i am much help.
Patsy
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i know this is extremely unusual but my tinnitus went away completely after surgery, i had both pulsatile and white noise etc..tinnitus and they are both gone, so its possible!!!
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How wonderful to have your tinnitis to go away, enjoy.
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i know this is extremely unusual but my tinnitus went away completely after surgery, i had both pulsatile and white noise etc..tinnitus and they are both gone, so its possible!!!
Wow! Now there's something to celebrate! Congratulations!