ANA Discussion Forum

General Category => Hearing Issues => Topic started by: coffeylady on June 13, 2008, 11:29:41 am

Title: Just before falling asleep
Post by: coffeylady on June 13, 2008, 11:29:41 am
OK - Has this happened to anyone else?

I am just drifting off to sleep and all of a sudden I have this (the only way I can describe is) Flash of noise (in both ears) and then it is quiet - it startles me and then I try to fall asleep again!  I don't know if this is related to my AN or if it is my body relaxing entirely -    ???

Anyone ???
Title: Re: Just before falling asleep
Post by: leapyrtwins on June 13, 2008, 12:03:02 pm
Sorry, never had this.  It sounds very strange, though.

Did you notice this happening before you were diagnosed with your AN?

Jan
Title: Re: Just before falling asleep
Post by: Boppie on June 13, 2008, 01:20:10 pm
Coffee Lady,  I love coffee! :D 

In the beginning of my recovery I had frequent falling asleep episodes.  I heard noise like a door slamming loudly, or a loud thump as if somebody dropped something.  A few times I got up a searched the house.  I was spooked by this but it went away.  Also, I had nerve twitches that would cause my whole body to jerk as if I was falling off a surface.  I was concerned that I was having seizures and would have complained to my doctor but the episodes became progressively less as I started sleeping on my side. 

I think all of it, the sounds and muscle movement was related to the post op brain response to hearing and vestibular losses (the trauma).  I have seen small babies jerk like this in response to very tiny stimuli...but don't know if this is a simiilarity or relationship to my post op episodes.
Title: Re: Just before falling asleep
Post by: Jim Scott on June 13, 2008, 01:21:17 pm
Nope...never experienced this.  Let's see if anyone else can shed some light on this or if it's unique to you, which I suspect may be the case.

Jim
Title: Re: Just before falling asleep
Post by: er on June 13, 2008, 01:33:17 pm
hello coffeylady,
 I'm with Boppie, But I figure it is because we have lost the hearing of one ear the other sences get sharper.
eve
Title: Re: Just before falling asleep
Post by: cindyj on June 13, 2008, 03:25:31 pm
So weird that you bring this up, I've noticed something here lately just as I'm about to fall asleep, like a very quick electric impulse/sound in my ear(s) or something.  It doesn't last, but, of course the ringing never, never stops.  I'm going to pay attention the next few nights and see if I can better describe it and get back to you.

cindy
Title: Re: Just before falling asleep
Post by: chocolatetruffle on June 13, 2008, 07:09:21 pm
not sure if we have similar symptoms, but i do have a quick "zap" of static sound in both ears like i got zapped by electricity - this could be triggered on its own or by a slight noise in the room and sometimes this is followed by a quick "flash" in my eyes.  i was told it was residual impluses from the hearing nerve.  hope this helps.
Title: Re: Just before falling asleep
Post by: shygirl on June 13, 2008, 09:45:05 pm
Coffeylady,

I'm 10 mos post op and have LOUD "white noise" in my AN ear. After surgery, as I was drifting off to sleep, I would hear sounds like something fell off a shelf. I would get up and look all over, but there wasn't anything on the floor or out of place. This still happens to me almost every night, but now I don't get up! My Dr couldn't explain it either. It's just one of those little mysteries.

Shye
Title: Re: Just before falling asleep
Post by: Nicole222 on June 13, 2008, 10:12:53 pm
This happens to me!!!!  I have only noticed it after surgery and only on the AN side.  I have no clue what it is--but I'm so glad I'm not alone :D

That is bizzare that you posted this---but I'm so glad I saw it :)  I wish I had more insight for you (and me ;)).
Title: Re: Just before falling asleep
Post by: coffeylady on June 14, 2008, 05:01:25 pm
Thank you all so much for responding - I have not had my trans lab surgery yet, it is scheduled for July 14th.

Oh my gosh - I have also had the flash in my eyes!!!  I am so glad that you brought it up. 

I have had the hardest time trying to explain this. It is nice to know that I am not alone !!!  I feel so much better  ;D

Sharon

BTW - Having the last name Coffey has its perks  ;D

Title: Re: Just before falling asleep
Post by: jlamborn on June 14, 2008, 07:09:37 pm
I've got that exact thing drifting off at bedtime, but mine started after my trans-lab surgery after the nerves were cut.  Mine is a "tea-kettle steam" sound.  I can even be drowsy in the tub and a drop of water from the tub faucet hits and I get the same sound again, and it's definitely coming from the deaf ear.  Thought I was going nuts.  Glad to hear I'm not alone! :D
Jean
Title: Re: Just before falling asleep
Post by: leapyrtwins on June 14, 2008, 10:17:36 pm
BTW - Having the last name Coffey has its perks  ;D

Love your sense of humor, Sharon  :D
Title: Re: Just before falling asleep
Post by: chocolatetruffle on June 15, 2008, 10:24:09 pm
mine also started after the surgery and they also cut my hearing and balance nerves - it started about 2-3 weeks after the surgery and kinda tapered off after 3 months or so.  I still get that zapping/misfiring sound but less of the flash in the eyes.  REALLY glad i was not the only one experiencing this, guess i am not crazy after all  :o
Title: Re: Just before falling asleep
Post by: LADavid on June 15, 2008, 11:02:31 pm
Got the old electric jolt blues as well ;D.  Back when I was a kid they were called rushes.  Now they're just weird old things that scare me awake.  I am thinking they are good nerve things that mean my messed up nerves are coming back to life.


David
Title: Re: Just before falling asleep
Post by: Soundy on June 16, 2008, 04:58:52 am
Sometimes I hear crackly noises like crumpling up a potato chip bag... seems to come from base of neck...
or maybe described better as static electricity type noise like when you pull something out of the dryer...
Title: Re: Just before falling asleep
Post by: mema on June 16, 2008, 04:45:00 pm
I've had strange noises occur while lying bed, like the door slamming or something dropping.  But I had radiation and I have brain spasms just on the onset of sleep..  Just as I start to doze off the weirdest sensation in my head.  I feel it though, don't hear it.  It scared me to death the first 2 years, but now I'm used to it.  I find  some things make it worse, like a glass of wine.  I've given up on all alcohol.  Tried some selzer water and it made it worse also.  Now heres craziest part.  Generally after an episode of this I dream about people who have died.  I've considered having a sleep study done, but right now I'm still trying to get out from under Doctor bills so a sleep study will have to wait.  Doctors always look at me crazy(you know that look) when I tell them it only happens on the onset of sleep.  I'm glad to hear I'm not the only one.


mema
Title: Re: Just before falling asleep
Post by: swiftie55 on August 06, 2008, 04:35:30 am
Hi From England!--I was diagnosed with my 1.5 an in may.  Since this time, i have 'whooshing' noises in my ear/head--especially when i lie down to sleep---i could also describe them as 'mini electric shocks'--a quick zzzzzzz noise in my ear,that sometimes runs down my arm.I was concerned it might lead to a stroke. Nice to learn it's something that many others experience too--although i don't mean i wish it to keep happening to you!!!  I am in  dilema -----Gamma Knife--or CyberKnife?--I still have hearing on my affected side--and have been told that Gamma will harm it---any ideas please?  chris.
Title: Re: Just before falling asleep
Post by: Tumbleweed on August 06, 2008, 05:21:50 am
Also, I had nerve twitches that would cause my whole body to jerk as if I was falling off a surface.  I was concerned that I was having seizures and would have complained to my doctor but the episodes became progressively less as I started sleeping on my side. 


I had these twitches for about 2 weeks following CK treatment. They are gone now, at least for the time being but hopefully for good.

Tumbleweed
Title: Re: Just before falling asleep
Post by: thornapple on August 06, 2008, 09:06:40 pm
Here ya go...it's called "exploding head syndrome". AHA!

http://www.mayoclinic.com/health/exploding-head-syndrome/AN00929
Title: Re: Just before falling asleep
Post by: lori67 on August 07, 2008, 10:31:12 am
Well, now I can add one more odd diagnosis to my list - I have an exploding head!  Thanks Thornapple!

Every night just as I'm about to drift off, I hear a loud buzzing sort of sound in both ears for just a second.  It's very weird, but I've gotten used to it.  As long as my head doesn't actually explode, I guess all is well!   :D

Lori
Title: Re: Just before falling asleep
Post by: Boppie on August 07, 2008, 11:56:00 am
I have a clicking sound in my deaf ear that occurs when I breathe in a out deeply enough to jar my neck.  It drives me nuts until I can get to sleep by lying verrrry still on my back.
Title: Re: Just before falling asleep
Post by: leapyrtwins on August 07, 2008, 04:35:23 pm
Exploding head syndrome?  Yikes!!!

Title: Re: Just before falling asleep
Post by: GM on August 09, 2008, 06:47:28 am
I’ve had these episodes as well…more like a “swooshâ€? it seems to come on when I’m VERY tired and I am nodding off and something startles me.  Like when your pet jumps on the couch...or your head bobs when nodding off and it wakes you.  Kinda shoots from my AN ear (left) through the head to the non-AN ear…sure can be a little freaky at times. 

I’ve wondered if this was tinnitus related…I’ve noticed that my tinnitus is louder when I’m tired.  When the tinnitus is lower this doesn’t seem to happen. 

Gary
Title: Re: Just before falling asleep
Post by: jazzfunkanne on August 14, 2008, 04:32:05 pm
Mine started after surgery too, I get this when am lying down at night to go to sleep sometimes it makes my head jerk
Title: Re: Just before falling asleep
Post by: elliemae on August 15, 2008, 01:12:03 pm
Hi,
This is very interesing!  I haven't had any treatment yet, but I do have the same thing.  I was thinking it was part of the tinnitus, only a special nite-time deal.  Mine is more like the electric-impluse zapping, and it's only in the AN ear.  But it is just when I'm relaxed and ready to drift off.  And it usually happens a couple or 3 times.

Title: Re: Just before falling asleep
Post by: AMD on August 26, 2008, 08:52:41 pm
I have not had my surgery yet, but I have noticed many times a loud noise (usually thump or door shut) when trying to fall asleep at night.  Scares the bejesus (sp?) out of me cuz I think someone is breaking in.  Always thought it was my oversensitive "good ear" reacting to the furnace kicking on.  So weird to finally read that all this happens to others.

On a side note, anyone had weird visual disturbances??  I've had a "floater" on my AN side for several years, but when I was pregnant 2 years ago, I had 2 episodes in the shower in which a curtain of gold glitter just floated down in front of me.  Very, Very weird.  Any comments?????

-Amy  ???
Title: Re: Just before falling asleep
Post by: Tumbleweed on August 27, 2008, 12:06:04 am
Amy, I'd ask your neurosurgeon about the "falling curtain." Dr. Chang told me that if I saw a curtain coming down in my field of vision that that would be a dangerous sign and inferred it would require medical attention. He didn't mention "gold glitter;" I may be wrong about this, but I think he talked about it as a dark curtain. But the curtain thing is probably something you should mention to your neurosurgeon. It could be something significant that he/she should know about.

Best wishes,
Tumbleweed
Title: Re: Just before falling asleep
Post by: sgerrard on August 27, 2008, 12:09:51 am
Hi Amy,

Does the name "scintillating scotoma" sound like it would fit what you saw? It is also known as "visual migraine," and is caused by stress. For some people it is followed by the classic migraine headache, so if that doesn't happen, you consider yourself lucky. I experienced some last month (mine were shaped like a boomerang, and drifted across my field of view), and the eye doc said the best thing to do is to reduce stress and not be too hard on myself.

Back on the main topic, I also get the odd auditory effect sometimes. Mine sounds like a very tight rubber band being snapped - an intense, short, twang. Maybe it is an auditory migraine?

Steve
Title: Re: Just before falling asleep
Post by: NL on August 27, 2008, 01:21:38 am
I've experienced many of these sounds both before and after surgery.

I read something on the forum where someone said it was related to the inner ear making adjustments for the position of the head, which is why it happens when we lay down. I don't know if that's true, but it seems to make sense.

I've always called them my "cartoon noises" - since they sound like they came right out of a cartoon soundtrack. I've had the "bee buzzing past the ear," the "high-volt electric zap," the "diesel truck horn," and the "broken bed spring" which is kind of a big "boing" - the last one may be similar to Steve's "rubber band twang" effect.

Once they became a regular occurrence (and stopped scaring me :o), they kind of became entertaining.

Nancy
Title: Re: Just before falling asleep
Post by: thornapple on August 27, 2008, 06:49:07 am
Migraine is a disease. Migraine disease is not caused by stress.

Stress can trigger a migraine attack, and so can many other things---foods, weather, etc...it is unique to each person with migraine disease. A "visual migraine" can be triggered by anything that triggers one's migraine attacks. Sometimes the trigger can't be identified. Sometimes stress doesn't trigger a migraine. Sometimes stress never triggers a migraine. It depends on the individual.

just for the record. ;) 

I have some very weird @$$ migraine myself. On top of my little AN,  I get vestibular migraine attacks and it makes my ears very unhappy. But the visual ones can be very entertaining, once you know what they are....I get ones where the world looks like someone is running water down a pane of glass and then everything goes black for 30 minutes and then crawls back. It's like being on LSD!!!! Glad I don't get those very often. Once I got one while driving and had to pull over...didn't want to drive blind!
Title: Re: Just before falling asleep
Post by: HeadCase2 on August 27, 2008, 09:02:34 am
Steve,
  Thanks for the "scintillating scotoma" term.  The WIKI well describes some of the pre-AN diagnosis symptoms I had, http://en.wikipedia.org/wiki/Scintillating_scotoma  .   I had previously heard the term Aura, but scintillating scotoma describes what I had a hard time describing to doctors.
Regards,
  Rob
Title: Re: Just before falling asleep
Post by: lori67 on August 27, 2008, 09:28:34 am
I can just see the look on the nurse's face when you walk into the doctor's office and say you have exploding head syndrome and a scintillating scotoma.

"They're coming to take you away... ha ha!".

Lori, occasional exploding head, but no scintillating scotomas to speak of.
Title: Re: Just before falling asleep
Post by: MAlegant on August 27, 2008, 01:45:07 pm
Very, very interesting.  I don't hear explosions in my head, BUT, I have had mini-migraines which are always preceded by a windowpane aura. It's kind of like pixels and makes it hard to see so I too have had to pull over and not drive.  I will be curious to see if I get these after surgery.  My tumor was there for a very long time and could have been causing the visual disturbances and headaches.  (I call them mini-migraines because a couple of Advil and some sleep seems to be effective so I never thought they were full-on migraines.)
Marci (now looking up the medical terms)
Title: Re: Just before falling asleep
Post by: cindyj on August 27, 2008, 03:13:42 pm
Scintillating scotoma - so that's what it's called!  That's my cue that I have roughly 30 minutes to take the migraine med - if I miss the window of opportunity, on comes the pain.  I consider myself very lucky to have this fascinating warning system.  My son has the auro, but never gets the pain - guess he's even luckier.

Think I posted earlier that I, too, often have wierd electric noises/impulses just before falling asleep...continues to amaze me to find so many people w/ similar quircky (sp?...we need spell check, well, I need it) symptoms.

Cindy
Title: Re: Just before falling asleep
Post by: AMD on August 27, 2008, 07:56:51 pm
Hmmmm, well, scintillating scotoma doesn't look like what I was having, although it may be a related form.  luckily i never had migraines. i'm gonna try to stop diagnosing all my ailments and just chalk it up to the fact that i was probably under the ungodly stress of being pregnant.  the brain is a very weird thing....

hope you all sleep tight tonight and have lovely sounds in your ears.... ;)
Title: Re: Just before falling asleep
Post by: Nancy T on August 31, 2008, 11:16:34 pm

I don't have an acoustic neuroma but I can sure identify with a great deal of what people are describing here! I do seem to have some kind of retrocochlear problem, but they were never able to identify what it is. I had sudden deafness on my left side after sneezing hard in 1999. Just got a Baha implant July 24, getting the processor in two months! :)

About a month or six weeks after my sudden hearing loss, I began getting what at the time I called "brain blinks" for lack of a better word. I would suddenly get a split-second feeling that I was about to involuntarily close my eyes and conk out, accompanied by a sensation of "total dizziness" or "whump' in my head and also a "burst" of "extra" static in my bad ear (which had constant whirring tinnitus anyway).

These would happen spontaneously but much more often when I was sleepy or in the twilight between sleep and wake. Also they were triggered by a sudden sound (such as telephone ringing or someone coughing). Also triggered by the CESSATION of a staticky noise--I'd get the "whump" when I'd turn off running water or change the radio station.

Eventually the "whumps" became less strong (no more feeling like my eyes were going to close) and lasting maybe a second as opposed to half a second. I also noticed that they frequently occurred when moving my eyes left or right, sometimes up or down. I believe this is related to gaze-evoked tinnitus (Google it) which can occur after removal of acoustic neuroma. Some researchers in Buffalo did a study of gaze-evoked tinnitus in AN patients, published in 2001 I believe.

After 9 years, I get the "whumps" rarely now, and usually only in the sleep-wake twilight.

As for hearing "explosions" or other noises when falling asleep, Google "hypnagogic hallucinations". Apparently these things are common. I don't hear things, but I often wake up with a start 15 minutes after falling asleep, sometimes kicking my legs out, having dreamed (almost always) that I'm slipping on wet leaves!

Nancy T.