Author Topic: Insomnia anyone?  (Read 3877 times)

4cm in Pacific Northwest

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Insomnia anyone?
« on: October 28, 2007, 06:06:18 am »

Here it is a clear night in the Oregon skies with a full moon … and I have been awake since 3 am. I have this bizarre intermittent sleep disorder for the last few years.  I actually went to a sleep apnea clinic and spent the night hooked up to wires etc and filmed on video camera. Even through the study team could not get more than 3 consecutive hours of sleep (I even took ambien) from me (they require 4 hours minimum for an accurate study) they concluded I did NOT have sleep apnea.

In the morning the sleep technician came into my room and implored me to see an ENT. The ENT conducted an MRI and the story from there  :o :o ...was the start of my Acoustic Neuroma Journey.

I was really hoping that once the 4cm whopper was removed – my sleep patterns would resume some normalcy. We have a full moon here and now 3 nights in a row I crashed in bed before 9 am (dead tired) yet wake at 1 am, again at 3 am … Even after giving into pharmaceuticals (gasp!) i.e. taking another round of benadryl (with no results) I finally I got up (as to not lay in bed and “mull�) … and here I am (on -line at the same time as our Europe based members who are normally log on at this ungodly hour ::) )

Thus again I will need to nap in the afternoon, will crash dead tired around 8:30 pm  :(  … and the sleep disorder pattern begins its vicious cycle.

Last night I could not play the fun game of charades the rest of the family was having such a hoot at - as I had to crash in bed. (   :( I feel I am missing out on life here)

I have read enough books on sleep disorders to know that sleep deprivation can certainly enhance tumor growth. My tumor pathology showed some atypical minority of the cells (perhaps indicating a faster growth rate) amidst the majority of typical AN cells(which typical grow slowly.) ...

I am really curios as to,
“Have any of you other AN’ers dealt with sleep disorders both before and/or after AN treatment?�

4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!


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Re: Insomnia anyone?
« Reply #1 on: October 28, 2007, 06:38:10 am »
Hi 4 - I've had trouble with sleep as far back as I can remember - always takes about an hour or more to fall asleep (can't shut off the brain).  Since the 'hot flashes' have started, I wake up 2-3 times a night, but usually can fall back to sleep within 15 minutes, sometimes longer.   On weekends when I'm not working I end up sleeping about 10 hours, then take a nap during the day. (Friday when I got home I fell asleep from 5:30p - 7:30p !!).
I'm always wiped out by the end of the week.
ps:  now that I think about it,  I remember about the time you are post op, I was up quite a bit around 3, 4am... (made for difficult work days...).
« Last Edit: October 28, 2007, 08:05:06 am by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.


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Re: Insomnia anyone?
« Reply #2 on: October 28, 2007, 11:53:13 am »
still do in so far as my sleeping pattern has shifted, early night to early morning.
and nothing will shift it back to normal hours. If I go to bed late, I just sleep less!
Mind you, I noticed that when stress gets involved, my clock just goes totally out of sink.
Also, it was much worse about a year ago, with early mornings here at my desk, 2, 3 am early.
Now it's 4.30 to 5. 5.30 it's a bonus!
Hope your sleep issue resolves itself soon.
Ciao :)
« Last Edit: October 28, 2007, 01:29:54 pm by Lorenzo »
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.


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Re: Insomnia anyone?
« Reply #3 on: October 28, 2007, 01:36:34 pm »
err yes - and I do have something for you to consider
basically (all/most ?) ANers DO get tired - often due to the balance issues
(the balance, then then brain is overworked,
in time you will be able to tell the "AN fatigue" apart
from normal body tiredness)
Its natural to rest of course, but the daytime nap
- if extended too much, can disrupt the sleep patterns
If you are "daytime" exhausted its better to ration yourself
to a 10-15 minute break - no more
This will refresh you but not trash the nights sleep
I have been so dog-tired I simply wanted to faint
- yet a 10 minute sit down in the car fixed me
for another 6 hrs daylight activity.
(note: sit still eyes/shut, but dont sleep)
And generally speaking, the worry of the condition will
affect sleep - even moods generally
Your own subconcious may well be working overtime
(were all going to die... etc etc ?)
I suggest the clue here is you own state of mind
maybe something to look at ?
And if all this fails ?
I find a full bottle of claret usually sorts it.....
Sweet Dreams


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Re: Insomnia anyone?
« Reply #4 on: October 28, 2007, 02:20:01 pm »
tried to cut out the naps: didn't work.
claret: nope.
state of mind: better than it has for a long time (except for a recent set back)
AN fatigue is solved by a 5-10 minute nap, anywhere.

My problem is not insomnia, I sleep. In fact, I fall asleep instantly when my head hits the pillow. The problem is staying asleep beyond 5am. Regardless of what time I go to bed, I wake up at 5 am. I make a distinction between the Big Fatigue of AN fame, and the sleep pattern shifting I experienced. BF has more or less vanished now and I don't fall asleep in my soup anymore. But the shift has not resolved itself.

I must add, that I'm contributing to this thread for others. As far as I'm concerned, I'm ok with my early mornings. In fact, I quite enjoy them! I love the calm and peace of those hours. I get lots done, seem to function fine, with maybe a nap at midday, and achieve a lot more. Having come to terms with my new schedule helped making the experience less stressful.


CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.


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Re: Insomnia anyone?
« Reply #5 on: November 07, 2007, 09:58:33 am »
Thanks for the invite to the thread, 4.  :)

I had sleep issues prior to AN removal, but nothing like now.
Pharmaceuticals can help if I am already EXHAUSTED, but not just normal "tired".
(So 3 days of insomnia will net me some sleep.) 
Naps make it worse for me, so unless I fall asleep at the computer, I won't do it. 
And it's RARE for me to fall asleep anywhere but my own bed.

I just has my sinuses roto-rootered and it did not help the sleep issues. 
Next is the fat in the soft palate to see if removal will help.  I believe so.
And WHY did I not do it all at once??  Geesh.  LOL

Time of bed is irrelevant for me also, Lorenzo.  It was frustrating a bit at first because my husband is SUCH a night owl,
but now I just accept it.  So, he gets his "quiet time" at night, I get mine early in the AM.  :D  Turns out quite perfect
in many ways!  It's all in the way we look at it, eh?  ;)  And I can see why you don't nap if you fall asleep fast.  Unless you set an alarm, you'll just snooze the day off.   :-\

Now MY question for you all:

WHAT is AN fatigue?  

I know about normal fatigue, and yes I do just go sit down and put a heating pad 'round my head when it aches for 10 mins or so, but I've never heard fatigue ascribed diretly to AN!  Tell me all you know.  I'm a sponge for new info.   ;D
So balance is related to this?

Hey Tony, we're not supposed to drink claret!  LOL!  JK, I love the stuff too.  But all the bad stuff in it...  Well,  sometimes the
GOOD and the YUMMY outweighs the bad.  ;D  Give me a big glass of a Cali Zin and I'm in heaven, I tell you now.  MMMmmmmmmm....

I am wondering if melatonin might help us?  Perhaps chased with the classic chaser of milk?  I can't abide warm milk, so mine will be cold.  Hmmmm  I am speaking with my neuro today, so I will be sure to ask about this for us.
I'll ask about interactions w/ other meds just in case, too.  I know we are all not on the same pharmacological agents. 

This is a WONDERFUL thread.  Perhaps with all of us working on this we can find answers that work for all of us.

One last thing:  Exercise.  Yes, I know, boring to most and a pain to find time for.  But I do notice I am happier when I do it, even if for only 15 mins a day.  I have an elliptical I use, but just going up and down stairs 15 times is great if you have no equipment!


4cm in Pacific Northwest

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Re: Insomnia anyone?
« Reply #6 on: November 07, 2007, 01:17:51 pm »

Awoke a 3 am … again at 5 am… 9  hours of interrupted sleep yawn… better than last night... yawn

Ok Ok I am awake now …


Oh gee in that ever expanding medicine cabinet (rapidly filling up with North American pharmaceutically driven economic forces LOL) in my bathroom I have that little bottle somewhere … let me rummage through … oh yah that one…

“Mmm …melatonin?�

Been there done that…

Before surgery I had big sleep issues. Now that I understand that the tumor was making my brain into as “s shapeâ€? it sort of makes sense being that the brain stem controls our sleep. So the whopping 4cm “Ted the tumorâ€? has since left my head … and the 3 am and 5 am wake up calls have resumed… and my brain stem is now straighten out. ??? MMM I get this electrical shock feeling between my ears sometimes followed by muscle jerks (…I figured my cerebellum is just readjusting after being retracted for hours during the 11 hour surgery) Maybe these shocks are what is waking me up at night…?  :-\ Any thoughts there with others who experience this…?

On a positive note of the cup being half full (not half empty) … when dearest hubby snores now I can just turn my good ear to the pillow and completely tune him out… so there is a perk to SSD in there somewhere.

Yawn…. I would make a cup of coffee but the stuff still tastes so darn bad (what cranial nerve # was that taste thing again)… Carnation instant breakfast it is again…

Gee maybe I should have bought and sold stocks in Starbucks to buy into Carnation (i.e. Nestle)
 and all those other pharmaceutical consumption companies that drive the North American economy. (LOL that and gasoline consumption)


SO I too would like a definition of “AN fatigue� … and how that is different from the "sleep deprivation fatigue"… (Yawn)



P.S. How many times did you yawn while reading this post?
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!


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Re: Insomnia anyone?
« Reply #7 on: November 10, 2007, 08:06:30 am »
I never slept the night through.  Seems I always got up a few times a night pre-an  and post-an.  What makes we wonder though is my hubbys head hits the pillow and instantly he's off to sleep. This has been our whole marriage life of 41 years.  But 7 years ago he had an illness that required many, many surgeries and since then he sleeps only 3 hours each night.  Prior to his  condtion he slept through the night.   He's been on so many sleep meds, has taken naps, has tried no naps, nothing seems to work. So I wonder when some sort of illness or condition happens to people does that throw your whole  kilter  off and changes sleep habits.        Mema                                                                                                                                                                                                                                           
6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.


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Re: Insomnia anyone?
« Reply #8 on: November 10, 2007, 08:40:17 am »
4 -

I'm really surprised melatonin didn't work for you.  My son has ADHD and takes meds daily.  At bed time when the meds are wearing off, he used to have an incredibly hard time getting to sleep.  Someone recommended melatonin and he started using it about a year ago.  Works like a charm.

I have a hard time sleeping since my AN was diagnosed, but it's not due to insomnia.  I used to sleep with my left (AN) ear on the pillow, but since my hearing started going, I switched to sleeping on my right ear.  That way if the phone rings or one of my kids needs something during the night I can hear it.  I just can't get used to sleeping on the right ear so every couple of hours I wake up because I'm uncomfortable.  Haven't figured out a solution to this one yet.

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