ANA Discussion Forum
General Category => Hearing Issues => Topic started by: robertb on December 21, 2012, 07:25:33 pm
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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
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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
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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
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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.
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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
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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
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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.
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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
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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!
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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."
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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
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haha-loved your post- I also get the hissing and tuning fork things..also some weird clicking that comes in spurts....
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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
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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
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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.
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I already had an MRI, and everything looks good.
I have a meningioma, so my doctor checks me every other year.
I saw the ENT doctor, and he told me that the tinnitus won't go away, that I need to learn to live with it.
It's been difficult for me; I can't even sleep, the noise bothers me a lot.
is someone on the group taking any medication to help with the tinnitus?
Thanks for your replies.
Elizabeth
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Hi Elizabeth! Sorry to hear you are suffering from tinnitus. I know it can drive a person crazy. There's no one thing a person can do to abate the noise. There are a lot of suggestions though, maybe those would work. Try doing a search on the forum and see what pops up. In my research though, the things that I have seen suggested comes to mind:
1. Change of diet
2. White noise generators
3. Anti-depressents
Bear in mind, none of these cure tinnitus, but some people have had relief from trying these things. Again, every person is unique. I am definitely not a doctor, and the doctors themselves mostly say that there's nothing one can do to stop it, so that's a pretty good indicator of how these things go. But I think if you are suffering from it, any kind of relief may be what you are looking for. Again, do some research here on the forum or out on the internet. I hope you do find something that'll work for you! Hang in there! Feel free to ask more questions if you need to! Take care and good luck!
Jay
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I would say I`ve had my tinnitus now for more than half my life (64) non stop, start around 30ish. I`ve been to many American Tinnitus Assoc. meetings before I found out about my AN 6 yrs. ago. All I can say is I`ve tried everything and getting a little relief with Neuromonics, but mostly just becoming used to it for all these years. For the most part its my new normal along with AN W+W. Feeling good, Best wishes, Mickey
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I was just reading some interesting info (I thought so anyway) on "staccato tinnitus". One of my first AN symptoms was head noise that sounded like popcorn popping or a machine gun going off in my head. Apparently it's caused by eighth cranial nerve dysfunction and is sometimes receptive to low dose carbamazepine(sp) medication.
Upstate
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I have that "staccato " stuff sometimes, but right now it's very quiet-not like a machine gun loud...
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I had an MRI two weeks ago, so I am pretty sure that I don't have an AN.
Now, besides the tinnitus, I see double when I walk fast, and it's vertical dyplopia, not horizontal.
My nose feels very heavy, and the ENT says that that the turbinates are very inflammed.
I fell and I think that I broke my nose, but I didn't see a doctor right away. I don't know if all of these symptoms are related.
The tinnitus seems to worsen every day.
I wish I could do something about the tinitus; the noises bother me a lot.
Thanks for being here.
Elizabeth
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For me I can tune out the Tinnitus most of the time. I try to ignore it but sometimes it makes its presence pretty noticeable. Its something I have to live with and nothing I can do about it. I am sure it will chance after surgery but its something I have to deal with and will move on. I don't like that I never have quiet but that's ok cause if that's the worse I get then its not a big deal. Life goes on!!!