Author Topic: Just before falling asleep  (Read 17170 times)


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Re: Just before falling asleep
« Reply #30 on: August 27, 2008, 09:02:34 am »
  Thanks for the "scintillating scotoma" term.  The WIKI well describes some of the pre-AN diagnosis symptoms I had,  .   I had previously heard the term Aura, but scintillating scotoma describes what I had a hard time describing to doctors.
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW


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Re: Just before falling asleep
« Reply #31 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.
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.


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Re: Just before falling asleep
« Reply #32 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)
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.


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Re: Just before falling asleep
« Reply #33 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.

rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings


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Re: Just before falling asleep
« Reply #34 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.... ;)
Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.

Nancy T

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Re: Just before falling asleep
« Reply #35 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.
Sudden sensorineural hearing loss, left side, 1999 (no acoustic neuroma)
Baha Intenso, 2008