----- Original Message -----

From: AMI BICKFORD

To: Narcolepsy-Chat@yahoogroups.com

Sent: Thursday, November 30, 2006 10:08 PM

Subject: Re: [Narcolepsy-Chat] How wonderful Narcolepsy-chat exists!

hi!!!  I do already have a post but after reading yours.(linda).I believe I have almost met my twin when it comes to narcolepsy and its symptoms.  I am glad to hear that there are employers out there that support you, as I am dealing with the ones who just dont quite understand.   I am at the point where you were when you were taking ritalin and had to stand and walk around just to stay awake. I hold a "leadership" position at my place of employment but due to "restructureing" I will be doing a job more to that of an assembly line worker....very boring and repetative come December 18th.  I am taking up to 15 pills (ritalin) a day but unlike you has done nothing in the way of weight loss, which my doctor found "suspisious" which led to testing for apnea, which was positive.

My in-laws also "get a kick out of" my cataplexy as mine is worse when I laugh....almost looks like I am having a seizure.

Hypnogogic hallucinations are often. My worst one after discussing a tabloid story about gay males using gerbils for sexual pleasure....that night would of swore there were gerbils in my bed trying to crawl up my rear. LOL and yes i can laugh about it now but at the time was so real.

I have had a couple of "close calls". Once when I fell asleep boiling water........smoke alarm woke me....and the second of which i fell asleep but not really asleep  and having sleep paralysis knew my 3 yr old was standing in front of me but couldn't talk, move or do anything ....after what seemed to be eternity...was able to speak the words "throw water on momma's face" and that gave him much pleasure!!! 

Please god dont let him suffer with this.........as it is supposedly hereditery (not in my case though)

Went through what I believe to be 2  years of doctor telling me change my diet, exercise, vitamins before sending me to a sleep clinic. I am told that narcolepsy is in the "genes" and a tramatic experience will bring the sympyoms to surface....which was in my case, I believe, was when I lent my father a motorcycle for a weekend in which I was going away and he got killed in an accident. Wether it be the grief of losing my father or the pure guilt of feeling like it was my fault...who knows. 

Now it is my turn to apologize for rambling............thanks for your story.......................AMI 

----- Original Message ----
From: remgal_ice <lindsayskye@optonline.net>
To: Narcolepsy-Chat@yahoogroups.com
Sent: Thursday, November 30, 2006 9:11:19 PM
Subject: [Narcolepsy-Chat] How wonderful Narcolepsy-chat exists!

Greetings to everyone at Narcolepsy-Chat!
This is my very first posting and I am delighted that you
exist! I have attempted to post in past but, due to my persistent
technological difficulties, I did not realize (until just now) that I
had not yet become a member.
This has been an ongoing theme in my life since I first
manifested the classic symptoms of narcolepsy with cataplexy at age
13 which began with my sleep attacks which I dreaded almost as much
as cataplexy and certainly more than migraines. (I somehow believe
that they are all inter-related . . .) At age 13 I had seen a film
about an Apollo space mission disaster that failed because the
astronaut in charge was unable to stay awake due to persistant sleep
attacks . . .at age 28 I managed to persuade my husband to divert
out honeymoon to include the Johnson's Space Center in Houston so
that I might then investigate this disaster with which I had long
identified . . . I soon learned that this disaster never, in fact,
occured. I had dreamed it in reasponse to my growing concern for the
sleep attacks that I had begun to experience as a child in the 8th
grade . . . my in-laws took perverse interest and even pleasure in my
cataplexy which broke my heart. Because my husband was seriously ill
with complications from the Vietnam War and later passed. My catapexy
attacks were frequently triggered and my Dr., then a psycho-
endocrinologist, placed me on low doses of Imipramine which curbed my
cataplexy some what (I still must be guarded in order to avoid
potential triggers . . .people consistently describe me as "Ms.
Spock" like the character on Star Trek who doesn't show human
emotions) and also the hypnogogic hallucinations which my younger
sister dispised as my screams would inevitably wake her up at all
hours of the night. Although I been placed on Ritalin for the sleep
attacks I became extremely thin and resembled the then popular Karen
Carpenter. Yet, I would do anything for blessed wakefulness!
On the day after my 33rd birthday I actually fell asleep
on an ice skating rink! I fell directly on my head --- fortunately
without experiencing a fractured skull or blood clot --- although I
felt no pain, I did have profound hypnogogic hallucinations, many of
which featured male nurses dressed in purple scrubs who attempted to
serve to me multi-colored pills on silver coctail trays! I was
certainly glad to be discharged the next day although I wish that my
neurological state had been evaluated in greater depth . . .
I have always expereinced difficulty in discerning dreams
from actual wakefulness -- waking dreams -- this happens also, when
especially tired (I have two part time jobs) and attempt to serve
customers long after our store has closed, my pharmacist boss,
fortunately, understands . . . I nearly always cannot remember
whether I have actually experienced a phenomenon or whether I have
dreamed it (this is very annoying as well as confusing and
embarrassing) .
I bless the day when my wonderful neurologist put me on
Provigil as it all but completely knocks out my sleep attacks giving
me more confidence in myself than ever. In addition to working as a
chashier in the pharmaceutical section of a local drug store, I also
work as a master tutor in a nearby university where I help students
with anatomy and physiology, neuroscience, psychopharmacology and
advanced pathophysiology. Prior to Provigil I had to stand up for
the entire day and walk, if necessary, in order to remain
wakeful . . .sometimes even resorting to exercise! I HATED THAT SO
MUCH! I HATED MY SLEEP ATTACKS MORE THAN ANYTHING! My boss would
frequently need to bang on the door to the bathroom stall and
yell: "Janice, wake up! Your next study group is here!!" I wanted to
die for being caught sleeping on the job --- again! Neverhteless,
my kind boss stood by me and kept me in her employ for ten
years . . . and then when I told her that she would never again catch
me sleeping on the job because I am now on Provigil, my boss, who is
also a biochemist, threw her arms around me because, even before
sharing this with her, she knew that I had narcolepsy! What a
wonderful boss!
I also have been in graduate school . . for two years I
studies molecular anthropology and earned a Master's degree from
University of Alaska Fairbanks. I remained in Fairbanks for an
additional three years in oder to teach as an adjunct at Eielson
Airforce base and also at Ft. Wainwright. I, too, had longed to
join the military but my narcoleptic/ cataplexctic history
disqualified me from both the navy and the marines. At least I was
able to serve as a professor . . . .
When I attemted doctoral studies at SUNY Albany I met with
disaster. I fell asleep during a graduate osteology class and the
professor branded me "brain damaged". My supervisor, under whose
direction I would have written my dissertation, dumped me and I left
for home, with my beloved cat, joining my mother in her senior
citizen's condo. It has been two years since then and the loving
support of my neurologist and two bosses have sustained me . . . I am
seriously considering returning to doctoral studies . . .this time
for chronobiology and the study of a possible relationship between
narcolopsy with cataplexy and the mood disorders (especially bipolar
I).
I very much look forward to chatting with anyone who wishes
to contact me . . .sorry for my rambling!

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