ANA Discussion Forum
General Category => Inquiries => Topic started by: southpaw on April 14, 2009, 09:20:28 am
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What's your tinnitus like?
What's it sound like?
Is it continuous or intermittent?
How do you cope?
Mine is constant (24/7). It is a high pitch "eeeeee" sound. Kinda similar to the old EBS (Emergency Broadcast System) tone.
Not sure how to cope with it.
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Yes, that's it. Continuous but not too loud. I try mind over matter, focus on other environmental stimuli. I thought it would make me nuts when I found out I was supposed to have it post diagnosis. Then I listened for it and learned to make it part of my personal space. Mine may be less significant than yours, however.
Good luck.
Nancy
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Mine's continuous, but steady and not too loud. Sort of like the sound you get when you hold a seashell to your ear. Thankfully I can ignore it 99 per cent of the time and it's not too big a deal. I empathize with those for whom it's a major problem -- I know that must be difficult.
Catherine (JerseyGirl 2)
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Mine is continuous. I have no hearing on the right side, but plenty of tinnitus. It gets worse when I have a bad headache. It also gets louder after being around something noisy - like a vacumn cleaner or hair dryer. It sometimes changes it's sound to the beat of a noise like a ringing phone or music. It is quite annoying, but I try to ignore it - no other choice, right? I almost always have the tv on in the background but I can still hear the tinnitus over the sound.
During the silence of nighttime I consider it white noise ;)
I am struggling to define how loud it is.
One of the perks of ANs. . .the gift that keeps giving.
Samantha
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I`ve had tinnitus for around 30 years.. Presently W+W have gone for Neuromonics treatment. Of all the things I`ve tried over the years, this has done the best for me. Its hard to explain how but my tinnitus is 50% more bareable now. You may want to look into i. Good luck, Mickey
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Mine is also continuous, a humming that rises and falls. Sometimes there are "pings" and occasionally I will hear a tone that sounds like good wind chimes, but just for a second or two. When tired, the sounds seem louder and sometimes turn into crickets chirping.
When engrossed in something interesting, I can become unaware; that's always good! :)
Kathy
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Mine's also continuous and does sound like the Emergency Broadcast thing - that's a good description that I hadn't thought of. As with so many here, it does get louder and change somewhat in a loud environment. However, I've grown used to it and usually don't notice much - life drowns it out for me :D
There are websites that have info offering ways to possibly minimize the noise, couldn't say whether any of them actually work or not...
Cindy
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mine's intermittent and enhances with stress or if I'm overtired. Typically, a high-pitched, monotone whine....
... but, except for one time. Capt Deb has warned me about... the crickets! I had NO clue and noted back to her... 'yeah, right, crickets sounds'.....
.... until the one day it happened. All of a sudden, (no joke!), chirping sounds in my ears.. and I was indoors!
Freaked me out! :) Couldn't do anything but laugh as the fearless Captn had told me about it....
...yes... crickets!
Be well all!
Phyl
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All of the above, plus one. High pitched sound - EBS is about right. Mute button doesn't work :(. Sometimes I suddenly get a very loud pulsing, about 3 or 4 short bursts. It actually makes me jump! The most aggrevating thing is that every sound that comes in my good ear is echoed as louder tinnitus in my deaf ear. If I scratch the side of my face (good side), I get loud but muffled scratching noise tinnitus! It is way strange. So in a room with lots of equipment, I get a deafening roar (well, I'm already deaf, so maybe that's not a good description now :)) in the deaf ear.
I only had the EBS pre-surgery. Everything else is value added, and they did not charge me extra for it.
I also have a new noise in my good ear. Depending on how my head is positioned, I get what sounds like a stead clicking or dripping noise. Very loud, and you can almost feel it too. It's definitely related to pulse, because it always stays in perfect rhythm with my heartbeat. Click-Click-Click-Click-Click...KABOOM!
Ok, no kaboom.
Ernie
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Mine started off as a cicada sound like millions of cicadas, now in the last two days its more up and down cicada versus a constant same tone. Mine has yet to be confirmed as an AN as Doctor is putting off MRI because of supposed sinus infection. But the Tinnitus is what sent me to the ENT. Its driving me crazy dont know how people block it out personally.
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I think of it as my very own brass section... ;)
I have a few differnt levels of tinnitus. I have a continuous tone that is accompanied by another that silides up and down in tone slightly. That is 24/7 and I can ignore it as white noise for the most part very easily. Those are joined on occasion by much louder beeps, boops, crickets, cicadas, sax, clarinets and others I can't identify. No rhyme or reason to what sets it off other than heavy exercise and pressure (planes and underwater)...it doesn't just happen then though sometimes it will just turn on. I'm glad it isn't like that often...that would drive me nuts. The last is actually somewhat pleasant, like Kathy mentioned above...sounds like good wind chimes...dings of different pitch and tone. They come on for no reason and may last for just a few seconds or at most a few minutes.
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Mine started out like a bee and some metallic tapping noises post-op and is now just a constant noise with no particular distinguishable sounds. Kinda like a loud seashell sound that I remember hearing as a kid - it's been a long time since I've been to any beach to listen, but that's what it reminds me of. When I'm watching TV, I notice it a lot more. Otherwise, it is just part of the background noise that I've gotten used to.
Wow, I didn't even think about it much until I read your post! Guess that really does mean I'm used to it now.
Kathy
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Ditto to the others. I, as well, can usually push it to the back of my conscious thinking when absorbed in something. The two worst times are in noisy environments, e.g. restaurants, concerts, etc. and when first trying to go to sleep at night. At night is the usual time for the triangles to start playing!
But since I can no longer hear like I used to anyway, it is becoming part of the "new me."
Clarice
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Hey, I just re-read this thread and see that Catherine (JerseyGirl) hears the seashell-noise too! I'm glad to know that 30 years after I listened to my first and only seashell, I still remembered what it sounded like!!!!
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Crickets. Crickets, crickets, crickets, crickets, crickets, crickets, crickets, crickets, crickets, crickets, crickets, crickets.
It is continuous, and noticeable anytime I want. Most of the time, I don't. :)
Steve
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Most of the time mine is the high pitched EBS sound. At night and when I'm tired it seems louder. Once time I had the really weird low pulsating sound for just a sec. If I hadn't read it on the forum before I think it woudl have scared the crap out ofme.
I have it 24/7 and most of the time I don't seem to notice it. Gets louder at night and when I'm tired or if one of my pups decides she's going to bark at something when we're in my car. I always have the tv on at night when I go to bed to help distract me from the sounds in my ear/head!
Oh - and I can make the sound higher by moving my head or lower jaw in different positions or by yawning. ;D Yes, yes I am different. ;)
Cathy
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Interesting- didn't know there were so many out there with so many different sounds.
Mine is a high pitch squeal, 24/7 on the deaf side, probably a little less than the EMS sound.
It affects my life now. Wish I had some answers. I need frequent rest periods. Wave CD's work OK( on my good ear.)
It is one of the most impossible things to treat- so much $$$$$$$$$$$$ being wasted on stupid pills! (before my AN diagnoses I was one of those who spent $$$$$$$$$)
I'd look in to neuromonics treatment.
Maureen
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Hi everyone ...... I've thought about this question quite a bit since tinnitus became part of my life after AN surgery in '04, and have come up with some of the same as what's been described by many of you.
But then I asked, what's my tinnitus really like .... it really likes to take a back seat to his owner's activities so as not to be too noticeable, if at all .... e.g. when his owner's enjoying the company of family and friends, playing with his grandson, listening to music, reading, playing golf, singing in the choir, walking the dogs, and all the other important stuff in it's owner's life.
I truly hope that your tinnitus will honor your wishes and not be so noticeable so that can't enjoy what's important in your life.
Keep smiling ..... Greg
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Greg,
I'm hoping the same! I'm almost 3 years post op and the sound has not changed. Unfortunately it does get in the way of everything I do and my ear almost hurts with the high sound.
Has your tinnitus changed in character since your surgery in 04?
I'm hoping mine settles a bit through the years.
I'd gladly be part of a study on tinnitus on deaf ear post AN removal~ :-[
Thanks for your well wishes.
Maureen
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Good morning, Maureen .... my pleasure on the good wishes!
Answering your question .... no, my T has not changed much in the 4.5 years since AN surgery, except it does increase in volume when I'm around loud sounds (e.g. lawn mower, MRI, concerts, person on my left screaming on a roller-coaster, etc). So I always keep a foam earplug in my pocket .... well, actually in my ear! My T can also increase just by me thinking about it. That's why I mentioned many activities that help me keep it in the back of my mind, rather than on the side of my head.
Regarding studies, on the ATA website .... possibly opening page .... is a blurb on a T study by WILMAX Clinical Research. If you haven't already, suggest calling the number to see if you'd like to participate.
I've corresponded with several people at ATA .... nina@ata.org , lisa@ata.org ... they've been helpful too.
Wishing you well!
Greg
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I have T on both sides. The left side, on which I first had surgery, makes a high-pitched noise. The right side sounds like the engine room of a ship or a generator. I was a bit out of it in the hospital after my second side surgery (which left me deaf). I asked my wife if there was a thunderstorm happening outside. Additionally, I hear the crickets too. I also hear what I would describe as a high pitched "light saber" sound when I move my eyes.
In terms of coping. When I still had hearing, I decided to never focus on the tinnitus. Since going deaf, I had nothing else to listen to, so I sort of embraced it, studying the sounds that I was hearing. And I thought that being deaf would be quiet!
Jeff
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Yep,
For us, deafness is the pits! Unfortunately, my sound is a high pitch squeal that never changes.
I wish it would change its sounds but it won't!
Thanks for the tidbit on T from the ATA association. I'll check it out.
Maureen
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My tinnitus likes me very much ;D
Despite being told to 'sod off' when it gets above itself (usually in noisy environments) it likes to join in ;); this includes when I sing and sometimes when I talk, so it must like that too :D.
Anyway, I never knew a deaf ear could induce so many different types of noises - I think I have all the ones listed here fortunately not all at the
same time - my 'church bell' is chiming a bit today on top of the high pitched hissy white noise and the generator comes in and out from time to time, never a dull moment! (Oh and I now have a pulsating type of tinnitus in my good ear on and off!)
I had my hair done today and it was fun with the hair dryers going off - I managed well (they don't know I am stone deaf in that ear) but the tinnitus levels went up and down. It doesn't upset me anymore and I refuse to let it interfere, I've done presentations and group meetings, had a lovely holiday in Cyprus last week and the flight was fine as were the noisy dining areas. I coped well and had to sit in all kinds of positions in the dining hall, there was not a choice most evenings.
However, I do sometimes find myself now wishing it was at the level it was before it spiked after my hearing test in Dec. which is funny really when you consider before that I was wishing I didn't have it at all BUT it is louder now and I have accepted that I have to get on with my life with it and that's it (until a miracle cure!).
So I suppose what I am saying is the human spirit is wonderful, it's surprising what you can live with when you get used to your new 'normal' (and you can!).
All the best.
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Thanks Maureen, Esparanza & Jeff .... for sharing details on what you're facing daily. Sure, each of us must cope with what we're given, and each time I read an entry from someone such as you, I realize that you're helping others (e.g. me) cope with their situation.
One of my favorites is by R.W. Emerson:
What lies behind you and what lies in front of you, pales in comparison to what lies inside of you.
Of course, that doesn't refer to tinnitus, but your positive outlook and caring for others. Please keep this in mind .... hopefully it can take a more prominent spot than your tinnitus.
Greg
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One of my favorites is by R.W. Emerson:
What lies behind you and what lies in front of you, pales in comparison to what lies inside of you.
OMG, Greg.
This is a quote - that helped me on my AN journey and still helps me today. I found it on a rubber stamp (the kind you use for scrapbooking) and I absolutely loved it.
The stamp is a little variation on the quote. It says "What lies before us and what lies behind us are tiny matters compared to what lies within us"
I had no idea who wrote this, since the stamp just says "Anon".
Anyway, I've relied on this quote for many, many things and have used it numerous times to create bookmarks and cards.
Thanks for shedding some light on where this inspirational message came from ;D
Jan
Sorry for the hijack, everyone.
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Good morning Jan !
I've also heard Emerson's quote several diff ways .... usually as you wrote it. Every so often, I come across something that sticks in mind and seems to help me cope .... or helps me cope with helping others as they struggle.
Hope it brought back many good memories for ya!
Greg
(hijack?)
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HIJACK is when you change the subject in a post!!! :D
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hijacks are what I watch like a hawk. Back on topics folks :)
HIJACK is when you change the subject in a post!!! :D
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Thanks for the definition .... see that single star under "newbie"? Not only am I learing bout baha .... seems I've a lot to learn bout anausa.org's forum
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I've noticed my tinnitus getting worse lately (7 weeks out of surgery). As I stated before, the base noise, that's always there, is very much like EBS. The more bothersome part is that every sound that comes in the good ear is amplified and echoed as a staticky noise in my ssd ear. The more environmental noises around me, the more noises I get. The louder they are, the louder the tinnitus.
Oh, and you don't have to change the subject line to hijack a thread. All you have to do is talk about something different, not related to the thread subject. A better option is to send a PM to a person, or start a new topic. Or at least make sure Phyl isn't online when you post :).
Ernie
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Oh, and you don't have to change the subject line to hijack a thread. All you have to do is talk about something different, not related to the thread subject. A better option is to send a PM to a person, or start a new topic. Or at least make sure Phyl isn't online when you post :).
try again... more than just me watching... ;)
So, no one else other than me and Captn Deb run into "cricket" tinnitus, although I did see cicada comments.....
Phyl
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I've noticed my tinnitus getting worse lately (7 weeks out of surgery). As I stated before, the base noise, that's always there, is very much like EBS. The more bothersome part is that every sound that comes in the good ear is amplified and echoed as a staticky noise in my ssd ear. The more environmental noises around me, the more noises I get. The louder they are, the louder the tinnitus.
This will generally get easier to live with - by 7 months you should be well used to it and not think about it so much (I listen to BBC Radio 4 a lot when i'm at home - the 'echo' makes the hourly pips a little more interesting :)).
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So, no one else other than me and Captn Deb run into "cricket" tinnitus, although I did see cicada comments.....
Golly, you mean I didn't mention the word crickets enough times in my post? :D (bottom of page 1)
Steve
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what's EBS? (as in tinnitus)
speaking of acronymns, what's PBW or is it PWB?
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Keri,
Sorry for not being more descriptive about what EBS is.
EBS stands for the Emergency Broadcast System. It was a way for the FCC (Federal Communications Commission) to get your attention via radio or television during a disaster or other emergency. It was replaced in 1997 by the Emergency Alert System. When I was a kid growing up, I remember that radio and tv stations would run tests of the system. They always played a "tone" during the test. It was strange sounding thing. Here is a link to a website that has the tone:
http://hypertextbook.com/physics/waves/beats/ebs.html
I used the term EBS to describe what my tinnitus sounds like. People often ask me what my tinnitus sounds like. I always refer to the EBS tone. It's the only way I can describe it.
Dave (a.k.a. Southpaw)
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Re: crickets chirping. I, too, get this at times.
From page one:
"When tired, the sounds seem louder and sometimes turn into crickets chirping."
:)
Kathy
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ok, now i get ebs... i was thinking it was a medical thing. thanks, dave! i had an ebs sound pre surgery. post op my sounds have more of a whooshing noise, instead of a clear tone. high pitched cicadas, or something like that.
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Mine is a Hissssssssssssss all the time it can be a REALLY LOUD HISSSSSSSSSSS or a very quite hisssssssssss, I guess a bit like the shell to the ear noise, it too gets worse when I'm tired or stressed, it is exacerbated in loud environments and sometimes pulsates which makes me almost jump out of my skin.
Majority of the time I ignore it, but sometimes I find myself rubbing my ear desperately trying to rid myself of the feeling of fullness, it feels like its full of water.
Cheryl XxX :-*
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My tinnitus tells me useful things, like... "stand up straight", "eat your vegetables", and "wear clean underwear when you go out in case you get hit by a bus". Wait, that's the other phantom noise in my head...
My tinnitus is constant and usually pretty loud. It's of a higher pitch than I remember the EBS tone as being. I've had tinnitus for a very long time but it did get somewhat louder post AN surgery. I've had it for so long that it's not really very bothersome...the exception to this would be on those rare occasions that I'm having difficulty falling asleep, it is not at all helpful.
It was actually 3 episodes of short duration volume increase in my tinnitus that sent me to the audiologist which lead to the discovery of my AN...so mine actually proved useful.
White noise such as a fan running used to help, but now it's loud enough that in order for the white noise to mask out the tinnitus the white noise itself becomes annoying.
Since I haven't been able to find a medical, environmental, or lifestyle solution I've decided to go with a philosophical solution... can't change, just accept it and move on.
..take care.. tim b
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Great outlook Tim. I love your sense of humor BTW ;D
I actually HATE my tinnitus and still am having problems accepting it. Almost 3 years post op :(
A high pitch squeal, kind of like EEEEEEEEEEEEEEEEEEEEEEEEEeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee :o
24/7 that doesn't change in its character. Just annoying and gets louder through the day :'(
I try to just stay busy.......
Maureen
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Hi all,
Like most of you, mine's high-pitched, constant, and more noticeable at times. But with Tim's sorta thinking, I'm basically able to ignore it. I wish the rest of you that ability too.
Now, I'm planning to participate in a T study ..... see the link on the Am Tinnitus Association's (www.ata.org) main page. Has anyone else ever participated in this, or another, type of health study?
Thansk, Greg
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Mine is worse than immediatley post op (I'm 3 months), but I think better than pre op. I get used to it too; sometimes it's more annoying than others. But mine sounds now like a high pressure power washer! Most of the time it's the high pitched whoooosh; or sometimes the seashell noise; but when I'm about to fall asleep I suddenly get a quick burst of sound like a power washer in my ear. It doesn't last long, just kind of weird.
I'm going to look up that study, Greg.. haven't yet.
Keri
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I was happy post op... the "T" was down! .. of course I was on Meds and sleeping most of the time ...
once I started work again ... it was right back to its very loud levels again .... :( loud and constant emergency broadcast system ....
EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE
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Mine is constant. Its a hissing sound that gets louder with a headache or when I'm tired. You can go to neuromonics.com and click on the sound demos to hear all the different tinnitus sounds. One of them will match up with what you hear.
Lois
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I have the EBS whine also. It does get louder at times. Bedtime sucks but the tv helps. At first it caused migraines and interfered with sleeping. The doc put me on meds to pass out and they in turn caused decreased vision, groggines, serious concentration issues and eventually a panic attack. I stopped taking the meds and learned that ,over time, you really can learn to ignore it most of the time. :P
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That's great that you can ignore it. I'm not as fortunate :'(
Though I can sleep through it, so that's a blessing :)
Maureen