Author Topic: Just before falling asleep  (Read 16751 times)

mema

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Re: Just before falling asleep
« Reply #15 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
6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

swiftie55

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Re: Just before falling asleep
« Reply #16 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.

Tumbleweed

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Re: Just before falling asleep
« Reply #17 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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

thornapple

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Re: Just before falling asleep
« Reply #18 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

lori67

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Re: Just before falling asleep
« Reply #19 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
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.

Boppie

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Re: Just before falling asleep
« Reply #20 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.

leapyrtwins

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Re: Just before falling asleep
« Reply #21 on: August 07, 2008, 04:35:23 pm »
Exploding head syndrome?  Yikes!!!

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

GM

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Re: Just before falling asleep
« Reply #22 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
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

jazzfunkanne

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Re: Just before falling asleep
« Reply #23 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
« Last Edit: August 14, 2008, 04:34:23 pm by jazzfunkanne »
over 4.5cm AN removed dec 06

elliemae

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Re: Just before falling asleep
« Reply #24 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.


AMD

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Re: Just before falling asleep
« Reply #25 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  ???
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.

Tumbleweed

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Re: Just before falling asleep
« Reply #26 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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

sgerrard

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Re: Just before falling asleep
« Reply #27 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
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

NL

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Re: Just before falling asleep
« Reply #28 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
1.6 cm left AN diagnosed Oct. '07
1.9 cm on 2nd MRI, May '08
Retrosigmoid surgery at House Clinic/St. Vincent's on 8/6/08
(no post-op dizziness, nausea, facial or balance issues)
Thankful for a fantastic team of doctors - Dr. Rick Friedman, Dr. Marc Schwartz, & Dr. Michael Stefan

thornapple

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Re: Just before falling asleep
« Reply #29 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!
« Last Edit: August 27, 2008, 06:53:30 am by thornapple »