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HI MELODY
IN REFERENCE TO THIS TOPIC YES I'M PART OF THE NARKS! LOL
HAVE HAD IT GOING ON FROM THE AGE OF EIGHT NOW BE FIFTY SOON.DID
KNOW WHAT IT WAS NEITHER DID MY FAMILY STAYED WITH GRANDPARENTS
MOST OF MY LIFE. I WAS CALLED LAZY WOULD DREAM THINGS AND IT
WOULD HAPPEN. WHEN I GOT TO SCHOOL I WOULD SLEEP ALLL DAY KIDS
WOULD SAY I WAS WATCHING RICHARD ALLEN SHOW LOL
LOVVVVVE TO MAKE PEOPLE LAUGH AND SMILE BUT DIDN'T KNOW THE
EFFECT JUST LET IT RIDE IT BECAME A PART OF ME FOR SURE. WOULD
PLUCK MY SELF TO TRY TO STAY AWAKE BUT AT NO AVAIL. SO TEACHERS
WOULD LET ME SLEEP. GRANDMA TOOK ME TO DOCTERS AT 13 ONE DIDN'T
NO A HAM THING HE HE ! LATER SHE TOOK ME TO ANOTHER DOCTERS HE
HAD GIVEN ME RITIALIN SAMPLES AT THE THEY DID WORK BUT GRADMA
NEVER TOOK ME BACK. AS I GOT OLDER BEGAN MY OWN RESEARCH STILL
DREAMED. KNEW WHAT WOULD STILL HAPPEN WANTED TO STOP DREAMING
HATED IT! HATED IT LOST JOBS SLEPT WHILE WORKING BUT IT WAS FUNNY
THEY WOULD TALK ABOUT ME AND DIDN'T KNOW I COULD HERE THEM EVEN
THO I WAS SLEEP! THE NIGHT I GOT MARRIED FEEL ASLEEP WHILE MY
HUSBAND HAVING A JOY FULL-TIME STARTED LAUGHING HE ASK ME WHAT
WAS FUNNY I TOLD HIM I THOUGHT I WAS RIDING A HORSE! HAD FELL
INTO ONE OF THE SLEEPING REALMS WHERE YOU ARE STILL BODY WOKE. HE
NEVER DID UNDER HE SAW THOSE EYES CLOSE FIRST THING HE WOULD SAY
IS TAKE A PILL TAKE PILL. yes, I'VE FALLEN A GOT UP WOKE UP A THE
MIST OF AND ATTACK ALMOST BROKE TOE IT BENT FORWARD LIKE A PEACE
OF RUBBER! LOL GRABBED ON TO A FOOT REST. STILL A DREAMER NOW OF
EVENTS AND THINGS THAT WILL HAPPEN BUT NOW I ASK FOR HELP FROM
ABOVE SO MANY FUNNY TIMES I CAN LAUGH NOW BUT AT THE TIME IT WAS
NOT. WILL TALK AND HELP IN ANY WAY TO HELP SOME ELSE OH BY THE
WAY NOW I'VE GONE INTO SLEEPING BEAUTY REALM HE. GRANDSON DIDN'T
KNOW WHAT TO DO CALLED FOR PRAYER MY COUSIN CAME OVER KEPT
SLAPPING ME IN MY FACE SO GLAD DIDN'T FEEL FROM THE LEFT TO THE
RIGHT. COLD WATER SPLASH STILL DIDN'T WAKE UP SHAKE NOT! AT THE
TIME I HEARD THEM BUT FOR THE FIRST TIME I DIDN'T WANT TO WAKE
UP. WOKE SCREAMING AND LEARN JUST A PART OF MY LIFE WITH THE
NARCS AND CAT. LOLL Fresh
Air For U@aol.com
Dear Melody, I
have a 7 year old who was diagnosed with narcolepsy in May
2000. Have you had any other parents with children
diagnosed with narcolepsy and are their any other sites with
information on how to cope with narcolepsy. It has been
very hard over this past year with my son, normal activities such
as ridding his bike, skating, and just running have but put on
hold until we can control the cataplexy.
Any suggestions will be gratefully appreciated.
Sincerely,
Jackie JBrooks214@aol.com
I am writing to
find out if my boyfriend may have narcolepsy. We have been
dating for over 2 years, and since I have known him, he has had
sleeping trouble. He will sleep for an entire day, and
phones, alarms, or even people cannot wake him. Also, the
second he is falling asleep, he frequently has very short
nightmares for a few minutes up to an hour. He tells me
they are absolutely frightening and he can't get out of
them. I try to wake him up, but he just falls right back
into another nightmare. Could he possibly have narcolepsy?
And all this time I have thought he was being rude and just
"sleeping" through his responsibilities.
kathy Kathy681@aol.com
My sister has the sleeping disorder, and has described your exact experience of not being able to be caught off guard on comedy, or any type of emotion. She has had Narcolepsy for arraign 14 or 15 years. She was 19 or 20 then. She has also talked about the nightmarish hallucinations. The part that is the worst I think is she is not able to be caught off guard, and is very monotone. Not at like when we were kids, you have to adjust your personality. But she does pretty good, she had a son 4 years ago, she wasn't able to take meds. so she slept a lot. I will have her contact you if you would be interested in writing her? They dont have e-mail at this time. I think they may be getting it. I am just looking up info on it, to see if there's any new treatments, ect. I don't use the computer much, so sometimes it's 1 or 2 days before I check my e-mail. but e-mail me, Thanks. wldta7@aol.com
Hi my name is
Deman,
Yes, it is pronounced just like you don't think it is with a long
e. I was diagnosed with narcolepsy 2 yrs ago and I have
been living with it, I have not got any further treatment other
that being told that I possibly my have it. I stop the
follow ups after that. I did not want to believe that I had
anything that is labeled as a disease, or disorder. After
reading some of the stories on your website it's nice to know
that I'm not the only one in the world, that's what it feels like
sometimes. Though I have not come across any stories that
come close the experiences that I have had with this disorder
without treatment. I have vivid dreams sometimes I don't
know if they are real or just dreams, then on top of that I have
what they call waking dreams where your half awake and half sleep
and you dream in this state those dreams really confusing and
frustrating. They are mainly frustrating because they are
not outrageous dreams they are things that are real
possibilities. There has been occasions when they have not
been dreams they have been actual events. I'll give you an
example I'm in the military, and in the military we have a lot of
jokers and I'm a very heavy sleeper, I mean living dead I can be
picked up and moved and wouldn't wake up, but my alarm clock
wakes me up, I know I don't understand it either. Anyway
back to the example we were on an exercise, training that we do
in the military and I thought I was dreaming that I was
being taped to my cot but sure enough when I woke up I was taped
to my cot. These are the things that makes it even more
frustrating. These are things that we do in the military as
jokes, childish right but we need entertainment too.
Narcolepsy has even caused me problems in my marriage at
least I hope that it's narcolepsy I would be in one of my half in
and half out stages and I would think that I hear my wife on the
phone talking to some other guy, I've dreams that my wife is
bringing men in the house while I'm sleep on the couch and
sneaking them upstairs, but when I have these waking dreams I
cannot move my whole body is paralized only my eyes and ears
work. So naturally I can't get up and investigate by time I
do struggle free there's nothing just me on the couch sleep and
my wife upstairs in the bed sleep and its 5 hours from the last
time I remember being conscious, and you have no since of time
when your sleep, or half sleep. I don't fall asleep at work
but when I get home I sit on the couch and I don't even remember
my eyes closing next thing I know I'm waking up 5 hours later and
going upstairs to get in the bed. I'm so hard to wake up
that my wife won't even try anymore she just lets me sleep where
ever I fall asleep, she says when she does manage to wake me I'm
really agitated. The bad thing about it is I don't even
remember ever being awoken. Another thing is I talk in my
sleep and I don't mean like spurts or one word out burst, I mean
I talk like I'm conscious I answer question ask question and
converse, or so I have been told. My wife like that part of
the disorder because any secrets that I have or something that I
am keeping from my wife, birthday presents, Christmas presents,
anything like that all she has to do is wait till I come home and
I'm extremely tired more that usual and ask the question and I
will give her the answer and I won' t even remember what I just
said or even that I was even speaking. It really is hell on earth
sometimes I think maybe I'm cursed because my name is Deman.
I am going to finish the process and get the medication and
whatever else I need, man I might even go see a voodoo priest I'm
ready to try anything. Even though that means I may be put
out the military I have to do something about this thing. DDennison27@aol.com
"I always thought that my inner clock got turned around because I was afraid to go to bed at night. I always hallucinate when I go to bed and they are much easier to deal with when it is not so dark."
WOW THANKS FOR SAYING THAT. THAT'S ME MOST OF MY LIFE,THOUGHT I WAS THE ONLY ONE. lovehopefaith868@aol.com
BETH ---- LOVE --- HOPE --- FAITH --- 868 --- MERCY--- GRACE --- PARDON
My name is
Leslie and I was diagnosed with narcolepsy and minor cataplexy in
the summer of 1994 when I was 21yrs old. I had been having
symptoms since around the age of 12, but like everyone else, I
thought that I just required more sleep than most people. My mom
even had me tested for mono! Finally, my junior year in college,
my best friend was majoring in Physical Therapy and had a class
that covered narcolepsy. She told me one day, almost jokingly,
that I had narcolpsy and that I should see a doctor. I blew off
the suggestion, until I fell asleep sitting across from a DC
Superior Court Justice my first day at my internship!
I've been on Ritalin ever since. I lost almost 25 pounds in the
first two months from lack of appetite and the renewed energy
source. I tried Proviginal in the clinical trials, but it didn't
work as well as the ritalin and it made birth control less
effective.
Today, I am happily married and we are in the discussion phase of
starting a family. I've asked my Ob/Gyn and my family doctor, who
manages my narcolepsy, for advice, but I haven't gotten any solid
answers yet. I would love any advice from anyone in a similar
situation and any input on how difficult it is raising an infant
with narcolepsy. I'm afraid of dropping the child with the
cataplexy, I'm nervous about the disrupted sleep and possibly
losing my job if I go on disability for the entire pregnancy
(part of my job requires driving). If anyone can offer any advice
or where to turn to for medical or legal counciling beyond the
standard routes, please shoot me an email at lestewar@teksystems.com. Thanks and I look
forward to hearing from you.
I
hope this e-mail is not going out into outer space because I'm
looking at an old web link, but if I'm not and you do actually
get to read this I'll briefly tell you about my experience with
narcolepsy.
I'm 28 years old. I was diagnosed about four years ago at the
Stanford sleep disorders clinic, near my home town here in the
Bay Area. I am a professional journalist so to anyone who thinks
that narcoleptics are less creative, think again! I too fall in
that 20% category of people that experience all of the symptoms,
and yes those so-called hallucinations can be pretty scary, of
course the sleep paralysis usually associated with them doesn't
help. I have had some experiences that were so real I often think
sometimes that we (narcoleptics) lie somewhere between the
boundaries of two different realities. It sounds crazy, I know
but if you're like me, you know what I'm talking about. I do kind
of like the lucid dreams sometimes, I know that no one else can
dream the way that we can, which is why they can be so
frightening at times. Listen to Third Eye Blind's song,
Narcolepsy, it uses the line, " How'd you like to be alone
and drowning?" I must say that the cataplexy is what
convinced me finally that I had narcolepsy, because like many, I
didn't know what was happening to me all those years. I've had my
share of scraped knees and spilled drinks, but nothing serious.
Yes, my head has slumped back, twisted my neck, blocked my
breathing, but left me with nothing more than a stiff neck.
Laughter is what usually does it for me, but sometimes when I
force myself awake from a terrifying sleep paralysis episode
associated with the feeling that "something or someone"
is trying to hurt me, I usually can stand up out of bed, then
fall right back down to the ground- ouch. Interestingly, when I
first went to see a doctor about this whole "problem"
which was what I called it back then, I told him about the
nightmares(hypnogogic hallucinations) about "someone"
trying to get me when I would lay down for a nap in the afternoon
and that I couldn't move, he told me that if he lived in the
neighborhood I lived in that he would have dreams like that too,
and that everyone gets fatigued when they drive or falls asleep
in a classroom or watching TV. Yes, that doctor was an idiot. The
hardest thing for me about dealing with Narcolepsy is trying to
get people to understand what it's like and that everything they
see on TV, (that movie, My Private Idaho) is absolute bullshit. I
don't instantly fall asleep, out of the blue, without warning,
while eating lunch at a table or talking to someone, sorry that
DOES NOT happen. I think I had one case when I was totally
"out of it" one night working and I was talking to a
co-worker and I suddenly couldn't remember what I was talking
about, but increased fatigue built up to that. I know for a fact
that I have a classic case of Narcolepsy, according to the
Stanford doctors and researchers and that it may appear to other
people that I fall asleep suddenly but the fact remains that
people with Narcolepsy have an uncontrollable urge to sleep not
uncontrollable sleep itself. When I start feeling the fatigue, it
gradually gets worse until I have to sleep, not just something
that "acts up". A lot of people are surprised when I
tell them I have narcolepsy, expecting me to suddenly doze off
while I stand there and talk to them. One of the research
directors at Stanford was nice enough to show me some of the dogs
they have there and study that have Narcolepsy. Those poor dogs
cataplex if they see food. But Stanford babies the hell out them
so not to worry but when you see what they go through its easy to
see how some people might think that cataplexy is like a sleep
attack, but its not.
I would love for anyone of the people in the office building I
work at that love to say "I'm tired" to feel my level
of fatigue for just one day, I know they would end up spending
the afternoon totally passed out, then we'll see how
"sleepy" they really are. Currently I'm participating
in the GHB clinical trial, it's supposed to work really well,
I'll see. I just hope it's not a placebo.
Thomas Zizzo
Assistant Editor
Electronic Business
408-345-4474
tzizzo@cahners.com
http://www.eb-mag.com
Hi,
My name is Chris, I am almost 28 and lately under a lot of
various stresses. I have noticed a rise in my need to sleep to
phenomenal levels. Sometimes 14 and 15 hours a day. Making work a
very difficult thing to do on a full time basis. Since January
this 2001, I have missed almost 2 months of time and a majority
of it sleeping. Just yesterday I was going to go back to work
after I had been to a counselor for depression, but I stopped at
home for lunch and having not even made lunch I got drowsy and
slept for about 5 hours. Therefor not returning to work as
expected. I have come to your site after having read a couple of
other news posts about the disorder. I notice that often I have
speech problems that may last for a couple minutes. And the
hallucinations, well all I can say is they are very vivid and
well, because I am kind of into the maccabre, I don't find them
so disturbing as I do fascinating. But after having looked at
these few sites. I am definitely considering going to a doctor
and just saying "I want to be tested". I have been told
that my medication for depression may cause my drowsiness but I
have never considered the dreams and the speech problems as
relevant to the issue at hand. Thanks to you and those sites out
there dedicated to this subject.
Chris
osirisandisis@home.com
My
mother-in-law has been test after test after test and we have
been so terrified about what was happening to her when she would
just suddenly collapse to the floor. When we would watch her it
looked like she was having seizures and yet they haven't been
able to find out what was wrong with her. Her doctor has now sent
her to a psychiatrist because she doesn't have any change in her
vital signs when she has a spell and everything else is normal,
but I keep thinking it's ridiculous because she said she needed
to get out and get a life and have a boyfreind and things like
that.How can you go out and have a life when it seems like every
time you go out the door you know that at some point you could
have a spell and if someone you know isn't with you they'd end up
getting an ambulance. She's gotten so she's afraid to go out and
walk around her house because she afraid she might have one in
the street trying to go see her neighbor or fall and lay in the
yard for hours with no one finding her. We have all kind of
resented the doctor's statement because she was very active until
she had one of these spells after my father passed away. At that
point they started running every test in the book and took away
her car and sent her home with no answers. She is alone and
doesn't want to live with someone. You see her disabled husband
passed away in '98' and she has been kind of enjoying being able
to go whenever she wants to. Anyway we may change our tune about
this psychiatrist because after talking to my mother in law she
looked up something in a medical book and said that they may be
able to help her by putting her on something like ritalin.
That's all my mother in law could remember so I started searching
to see what they treat with ritalin and found Narcolepsy and it
mentioned Cataplexy and described it. It sounds exactly like she
has been going through but we are a little uncertain about the
narcolepsy. Can she have cataplexy as her only symptom? She
doesn't want to have narcalepsy and she may in denial. Can you
give me some questions to ask her? Also with the medication will
it make it so she can drive again maybe? Are there any that
work that aren't addictive? I am so glad I found this sight
so I can talk to someone about this and It is such a relief to
have something sound so much like it because we knew it wasn't
all in her head. Thanks
Skiz
57@aol.com
P.S. I don't care if you print this because maybe if someone
reads it, it will help
Dear Melody, I loved your letter, cataplexy was the symptom I experienced in association with narcolepsy. in fact it became a bit of a party game among my high school friends, to see who could make me fall down first. At the time I thought it was something that would go away or that was "no big deal". That was 12 years ago, now I truly hate my little problem. I can rarely tell a funny story and find it very embarrassing. I find myself having to explain my problem to new aquatances or simply allowing people to think I 've had to much to drink(ironically I don't drink). As for the hallucinations I had bad ones like you, about things so frightening that I've often thought that maybe I should become a horror novelist. I have also had ones that are so bizarre I am sure they would rival any acid trip. I do however like to look at things in a positive way at least I know that my hallucinations aren't real, and I kn! ow I am not going crazy, when I can't move at least know I can breathe and I've found semi-effective treatment. As for comedy, I can honestly say when something is truly funny, just ask after I pull myself off the floor. Good luck to you , thanks for making me feel not so alone, its nice to hear about some one knowing about what it feels like to be me. --- Loren & Amy Maxon --- maxonfive@earthlink.net
Hi my name is Michelle I am 28 years old. I was diagnosed with Narcolepsy, Cataplexy, idiopathic Hypersomnia, Excessive Daytime Sleepiness, Snoring and Sleep Apnea, Restless Legs Syndrome in 1996. It has been a very hard thing to deal with. I notice my symptoms in September of 96, when I was working and I would start to feel sleepy I would go to the bathroom and sit in one of the stalls and fall asleep. I was so embarrassed. I thought I was going crazy. I always got plenty of sleep and ate right I would say to myself all the time what in the HELL is wrong with me. My Dr. finally referred me to a Neurological Dr. where I was first diagnosed with idiopathic Hypersomnia & Sleep Apnea. I was put on Ritalin for about 8 months, and everything seemed to be working out. But then I notice the more my dosage had to be raised, it seemed that I was having really bad mood swings, so I was taken off the Ritalin and placed on Adderall. I started out on 10mg. Then when I thought things couldn't possiabley get any worst they did. I started to get very weak and sleepy after work I did not want to go out and I started sleeping anywhere from 24 hours to 72 hours, that is where I thought I was going to have a mental break down. I would miss appointments, Wake up 2 to 3 hours late for work. I would go into fits of rage. I would have people call and wake me up, but I couldn' t hear the phone ring. I would go out and buy different types of alarms to wake me up. I had 4 of them placed all over my room. If I did hear my phone ring I would pick it up and say I was awake fall back asleep, then wake up thinking why didn't they call me. I was convinced I was loosing my mind. I started to get depressed. People I worked with thought I was full of shit! I thought I was gonna loose my job. My family says it's all in your head, you have to make yourself get up and not be weak. Well for those you have this DAM disease you know it's easier said then done! I would leave the house crying thinking I was all-alone. I am now on 40mg of adderall that I take 4 to 5 times a day. My body is getting immune to the drug and I might have to switch to Cylert. Now I am starting to exprenice problems with my balance and my memory. I still do not receive any support from my family and sometimes I wonder how I will make it throw another day. Sometimes I feel that if I were dead then all my pain would disappear. Is there anyone out there that knows what I'm talking about? Thank you for listening, Michelle
Melody,
just wanted to give my opinion on the conversation. I feel that
you had every right to be upset. I love to work but people in the
office are making it impossible for me to do that. I can't ever
work fast enough for them. I don't feel sorry for myself, but
there are people who don't care or understand my disease. and
don't want to accommodate me. No matter how hard I try. I
don't want to loose my job!! (I LOVE TO WORK) I believe there are
people out there who suffer way more then me and I don't want to
take disability unless I really need it. Sometimes I just don't
know where to turn when things like this begin to happen.
Thank you for creating this page, without it I would have never
known there were other people out there who suffer the same pain,
and without this page I would have committed suicide a long time
ago. Now when things get tough I just go to your page. There are
some of us who don't have support from family, friends, or work.
That's were you and your page come in. you and your page help you
really do. I've been coming to your website for a while, but a
couple of weeks ago was the first time I had the nerve to send u
my story. I have read all the stories and my heart goes out to
all. My name is Michelle and for anyone who ever feels like u
receive no support please feel free to e-mail me at
mitch7228@aol.com I will do my very best to lend an ear. Once
again Melody thank your for everything u do.
Thank you,
Michelle
mitch7228@aol.com
Thank
you so much for this site. I have read every story and read
the postings on the board. In two weeks, I am going to see
a neurologist who specializes in sleep disorders. After reading a
lot of information on Narcolepsy, I honestly feel I have this
disorder.
For as long as I can remember, I have always dealt with
sleepiness and low energy levels. My parents tried to
encourage me to participate in extracurricular activities.
However, I resisted, because sometimes I wanted to and other
times I did not. My parents called it being wishy
washy. It frustrated me because I wanted to
participate and had good intentions. I worked at a local
drug store during my high school years. I DREADED being asked to
stock shelves or do inventory. It was all I could do to
stay awake – especially if I was doing it by myself.
My high school counselor thought I was unmotivated and put me
with the slower students. My parents raised a ruckus and I
was moved into more advanced classes. It was because of my
mother’s love and devotion that I finished high school
without any problems. All along, she knew something was not
normal and she stuck by me through thick and thin. My
father quietly followed my Mother’s lead.
In college, I took my sleepiness as a challenge…a challenge
to prove I was motivated and could finish what I started.
By the Grace of God and my mother’s never ending support, I
completed my degree. Shortly after I graduated, my mother passed
away. As time went on, I was really struggling to stay focused on
the job. Sometimes I would be in a fog. I would drink
up to 6 or 7 cokes during an average workday - just to
function. Then I would go home and collapse. My
family doctor then said I needed to be on anti-depressant
medication. I tried them but I thought they were making me
too sleepy, so I stopped taking them. My Gyn said I
had PMS. He gave me progesterone, told me to eat a sugar
free, low sodium diet and remove all caffeine from my diet.
He also got me started on an exercise program. This all
worked beautifully when I was single and lived a very ridged and
structured life.
Getting married added a new dimension to the situation. My strict
diet went out the window. I slept a lot, but it did
not seem to interfere with anything. My husband worked
rotating shifts so he didn't have any true idea how much I slept.
I lived 1 mile from work, so I did not have much of a drive with
which to contend. I loved my job - I analyzed charts and
interviewed new moms to capture birth certificate data. I
was on my feet a lot and always switching gears. I had
episodes of loosing strength in my hands and legs. I used
the stairs rather than the elevator because it was quicker.
I fell down the steps in the stairwell more than a few
times. It was all I knew, so I didn't give it much thought
- I’d always been less than graceful. In fact, my
nickname became “Miss Grace.” Sometimes I would
go into a "trance like state" where I would just stare
straight ahead with no expression. I could hear and see
everything going on around me, but I couldn't move. After
it was over, I was just fine. If anyone asked what
was wrong, I would say I was “just thinking.”
When I would do other duties in the department such as abstract
or code patient records, I would spend the entire time fighting
to stay awake. I just thought it had more to do with me not
liking those particular job duties. Regardless, it frustrated me.
After I had my baby, my world turned upside down. I could
not stay awake long at all. It took all my energy to feed
her and get her dressed. It would take me all day just to
get out of the house to run a couple of errands. It took
every ounce of energy to do even the smallest task. I
stopped cooking dinner. When I would get on the floor to play
with her, I would usually fall asleep. When I read her a book, I
fell asleep; when we watched TV, I fell asleep. I couldn't
remember anything. I would forget to pay bills because I was to
sleepy to remember. My husband finally took over the check
book. My job performance suffered and I finally left that
job. My husband and I relocated and I accepted another
position. I knew I had to be on my P's and Q's, so I hid my
sleepiness and other symptoms from everyone at work. Problem is I
took it out on everyone at home. The job required a
lot of daytime traveling. When I drove, I would get sooo
sleepy. I tried to ignore it but I would nod off very
frequently when I was driving. Usually, when I reached my
destination, I would have to take a 15 minute nap. If not,
then when I went in to do my training, I would be a total zombie
and make no sense. I would fall asleep talking on the phone, fall
asleep in meetings…you name it. If I
wasn’t driving, I would sleep on the entire trip. I
struggled with this for 3 1/2 years.
My husband finally gave me an ultimatum and told me to go see our
family doctor. He diagnosed me with Major Depression.
I was on Prozac for a while. He then he switched me to
Effexor and Wellbutrin. It certainly lifted my mood and
helped me have a positive attitude. However the episodes of
falling asleep, muscle weakness and the trance like episodes
(which may very well be cataplexy) have continued. I have
been in to see him several times in the past few years for
episodes of falling asleep at the wheel that were such close
calls they left me shaky and very upset. I kept blaming it on the
medication. He told me neither one should be making me that
groggy but really had no suggestions. He would do a whole lot of
blood work, but nothing abnormal ever appeared. This whole
time, my husband has been saying something was wrong, something
more than the depression. I went back to the doctor about 6
weeks ago because I had fallen asleep on the couch one night and
my husband couldn't wake me up. Also, several co-workers have
noticed me falling asleep at my desk. Usually, what wakes me up
is some part of my body suddenly jerks – it could be my
hand, my foot, my leg….I just never know. He
immediately referred me to a neurologist for "hypersomnia
and memory loss." My appointment was 8 weeks away -
now I have only 2 more weeks. I started doing some research
on my own and found your web site. I’ve checked out
this neurologist’s credentials and training – they seem
to be impressive. I am quietly optimistic he will be able to
provide some answers and hopefully solutions.
There are so many other symptoms you have on here that I have
experienced, but never attributed it to anything other than me
just being odd. As I said at the beginning, after reading
everything, there is no doubt in my mind I have narcolepsy
- I fall asleep at the drop of a hat, begin dreaming right away,
get floppy headed when I start laughing hard, and go into a
trance like state where I can not move, but I am aware of
everything and everybody around me. I am watching closely
to see what Leah finds out…I can really empathize with her.
Now I have read a lot about the sleep studies that are done, but
what exactly, can I expect during this first visit? I have
kept a sleep chart and notes of my sleepy episodes for the last
several weeks. What kind of questions are asked, what kinds
of testing –if any, are done (other than blood work and
sleep studies) Any information you can offer would be greatly
appreciated! Again, thank you so much for this site.
It is has been my lifeline for the past 6 weeks! If you
feel this letter would benefit others, please feel free to post
it. mary
mrsmhb@juno.com
hi melody!
i read your article about "fellow" and i totally
disagree with her point of view. She is not entirely facing the
fact that she's disabled, she sees that as a sign of weeknes by
which she could be harmed, it's like she's afraid of other
people.
I must say that i am not narcoleptic myself, but i found this
topic interesting when we were asked to investigate it in college
(i'm studying psycology in Sonora, Mexico).
I read in your letter to fellow that you said you were concerned
about what the other "normal" people would have to
think about you (narcoleptics), but let me tell you, we know it's
a problem you face with 24/7 and it it out of your hands. It has
to do with the cerebral substances we have.
ditto_34@hotmail.com
Hello, my name is Kyle, I am 26 and I almost certainly have Narcolepsy. This has been going on for years. At one point a doctor said I had Apnea and I used a CPAP without any results for about six months. I often mentioned it to my regular doctor's and they just told me to drink coffee, sleep more, etc. After hearing this for years I was convinced no one could help me. Every doctor was scared to prescribe stimulant drugs, so I ended up taking sometimes as many as 20 No Doz or Vivarin to get me through a workday. That eventually became ineffective, and I was almost ready to start using Cocaine or Speed just to keep my job and my life in order! This is a very scary feeling when you want to buy Cocaine, because you can't find a doctor to help you. I am a Financial Analyst for one of the 50 largest corporations in the US. It was the fear of losing this job that made me refuse to stop until I was treated. I was caught dozing a couple of times at work and of course they did not like it. Unlike most people, I am lucky enough to work for a company with a caring Human Resources department that works to keep employees as opposed to just firing them on the spot. Texas is an "at will employment" state meaning employers can terminate anyone at any time without notice or any explanation. I finally admitted to my job that I was ill and needed help. I started searching for a doctor to treat me. I searched until I found a sleep specialist in San Antonio. I live in Austin which is about 90 minutes from there. When I went to see her she said I did not have symptoms of Apnea or Narcolepsy. After an MRI turned up nothing, she then referred me to another sleep specialist who is also a Psychiatrist. This was to make certain I do not have depression or another psychological disorder. He said I did not have depression and ordered a sleep study and a Narcolepsy panel, which is a blood test used to help diagnose Narcolepsy. Those results showed signs of Narcolepsy, but also showed things that do not support Narcolepsy. My sleep study did not show Apnea. I think I have Narcolepsy, but I think it affects me differently than most people. I do not ever get weak when laughing, crying, etc. I do not talk in my sleep or hallucinate, and I do not ever feel paralyzed. I do doze off all the time. I have fallen asleep while driving, sitting at a red light, in the middle of a conversation, eating, even while having sex! Basically, if I get comfortable I sleep. Period. Many times I have slept 7 to 10 hours, then woke up and sat in my chair to watch the morning news and have fallen asleep again. I was very fortunate to find this latest doctor, because he prescribed me Provigil without a definite diagnosis. I have seen very good results and no side effects. I take 200mg three times a day. I still feel drowsy at times, but so far I have not completely fallen asleep while on the drug. This has been like I was reborn! I feel great, and do not care if they ever have a definite diagnosis as long as I have my medication to get me by. If you don't know, Provigil is VERY expensive. Without insurance my Provigil would cost me $500 per month! My next step is one of those sleep studies they do in the daytime while you take short naps. I may never know what I have, and may have to take Provigil forever, but at least I can work and drive without any serious fear. This is the greatest feeling in the world. Good luck to all of you and this is a great website. =KYLE= Austin, TX
kyle@moment.net
Thank you for the opportunity to ask questions. My 19 year old daughter, Rebecca is in the process of being diagnosed. The neurologist is suspecting cataplexy. About 3 weeks ago, Rebecca began " passing out" 2 - 3 x per day. She always goes out after lunch and dinner no matter the time of day for 30 seconds to 1 minute, but rarely after breakfast. She can hear everything, but not feel touch or move. Drooling occurs during the time out. I am confused about the cause of cataplexy, most info I read corresponds the cataplexy to moments of high emotion...this is not the case with Rebecca. She has had medical difficulties most of her life and after a 4 day hospital stay for the shingles 10 years ago, the doctors had even suspected an autoimmune disease. Could there be a connection? Have only been able to find one case of cataplexy associated with food and that one is with a dog. Help? It is ok to post this. Thank you. Rebecca's mom.
joyjames@bellsouth.net
Hi Melody,
My name isTeresa, I'm 47 years old. I've just been diagnosed with
narcolepsy. My doctor has me taking Provigil 200 mg. - 2 a
day.
Falling asleep is about to get to best of me. I fall asleep at
work, driving- If I get to feeling sleepy while driving I always
pull off the road, I fall asleep whenever we go out to dinner
with other couples, this is very embarassing.
I'm always tried and feel like my body has took all it can
stand.
I just wonder if someone could share with me how the Provigil has
worked for them and how it makes them feel - side affects. (SInce
I have been taking it, I don't won't to eat, I still feel like my
eyes are a little heavy and I do have alittle more energy, also I
think at times it feels like my heart wants to run away with me,
but not always)
I really like your web site. I will be waiting to
hear from anyone.
Thanks for having this wonderful web site.
Teresa
TAC4235168@aol.com
Hi, I am an 18 year old student and I am about to go for a hearing for Social Security Disability. I was diagnosed when I was 16 due to reoccurring headaches. At first they thought that I was depressed because I am a girl, then they thought it was my wisdom teeth (took my wisdom teeth out), then it was my sinuses (had a sinus surgery), and then I went to a sleep study and they gave me a blood test to screen for the gene for Narcolepsy and I had the gene although I didn't show any other signs of Narcolepsy. My doctor put me on provigil and I take it twice a day, which is more than other people have to take. I take a whole pill while someone I met only had to take a half of a pill. If I don't take my medicine, I will go into a daydream like state and not remember what happened during that time at all. It really affects my school work, if I'm not on the medication. Although I have my bad days and my headaches still occur even if I am on the medication, Social security turned me down for disability because my grades are fine and that it doesn't seem to affect me socially. It is because I will not let the illness affect me socially and I will not let something like this stop me from achieving my goals. I graduated at the top of my class and was an honor grad. I have chosen to go to a private college and because of that most of the scholarships I could not apply for. I have noticed lately that I have start to have more symptoms than before. I am not saying that I am disabled, but I do need the assistance in order for me to continue my education and to be able to afford my medication. Not only do I have Narcolepsy, but I have asthma, arth in my knees, reoccurring sinus problems, and I am allergic to almost every grass, tree, and weed out side. I am not complaining, without these illnesses, I would not be the person I am today and I would not be as strong as I am. I just thought that I would share that with you and that I think your site is quite interesting. Sincerely, a fellow narcoleptic
Frog0783@aol.com
Dear Melody, I just found your page and I can't believe that once more I have found someone who is living the same life I am and have..if that makes any sense. I write just the way I talk...one thought leads to another and if I can get the thoughts together before I drift off again they usually connect. There is so much I want to say that I am afraid my emotions are going to take over and I'll enter that staring and nothingness state and won't remember any of what I want to comment on..sound familiar? First let me say whaat really struck me in the hole where my heart used to be before the company I worked for decided they were going to get rid of me(with a LITTLE.Ha! help from my trusted (and handpicked ,by me) associate whom I was training ) for my job (unknown by me) and this 60 yr. old narcoleptic was no match for this fresh ,truly beautiful young 22 yr.old bombshell with golden hair and forked tongue..gee,don't I sound like the pitiful one? Well, maybe at some later date I will elaborate but at this point I'll just tell you that it was not a pretty exit..It took 6 mos. for me to realize that I was being set up and 6 more of almost total degradation before they got me out(much to my boss's surprise...he had no idea juust how much a person who needs her job ..with no other support and needing insurance and meds will take tostay with the means to afford it) By the time it was all over and I mean it was all just about over for me because I had no dignity or confidence or much walking around sense left..and that is what I meant when I started this..you seem to have had a similar employment disappointment. I'll be a long time getting this behind me,if ever,b ut at least I am walking around, taking nourishment,and offer just the slightest opinion every now and then if iit isn't on anything more than the price of ice in Alaska. You know, we PWN's have a fragile sense of ourselves as relating to those "others" anyway..those PWON who know we would do better if we just got a better night's sleep or exercised more, or got this foolishness out of our heads anyway and decided to buckle down or is it up? like the rest of the people aand go out there and get it dddone,rright? Well, before you think I am nuts instead of narcoleptic let me go on to another topic or two..I'm getting just a little dozy as you can probably tell.I think I read that other post on another site about disability, also, and was stunned . I commend you for taking action and am ssorry you came under fire. We are used to ducking the blows from those out there but whew,boy! when itcomes from your blind side, so to speak, it 's a double whammy. I feel that if I haveonly learned one thing from this whole life adjusting malady, it is tolerance of others. So I am trying my best to figure out what would prompt anyone,much less one of us, to make such statements. It is noot as if anyone who gets disability is going to be able to live the "bounteous and beautiful life of the rich and famous" on their SSDI...unless I am living in a SS-less state and missing out on something. Andfurther more, I don't feel that anyone should be criticized for getting the help from the dollars they put in when they need help because they can no longer work. We are all different and yet we are all alike..when you come to the end of all you can do..when you can no longer fake it or hide it and you are already weary from the charade of trying to appear "normal" it is time to use that wisdom we all have received from experience and let up on ourselves and knoow we have fought the good fight...it is not all over, yet. Just this particular phase of our journey. And if anyone out there thinks the journey is over just because we can't join the work force out there , just wait until they try to live (wheether it be singly or bless their hearts raising a family) on their disability. Talk about a trip....this is where creative "travel" begins!That is unless they were listening very,very closely when E.F. Hutton spoke! Well, there's lots more where this comes from...my try for unemployment, my legal battle ,etc. but I'll save that for possibly another time if it might help someone.For the record I am 63yrs old and have had N probably all my life..especially HH,SP,RLSonly slight C up to this point but I don't rule out anything! I have had some funny things happen aaand some not so funny. No one else I knew had anything similar to N when I was growing up and I soon learned it was best not to relate some of the symptoms to those others. You might end up somewhere you might not like. I became a master of disguise...of feelings , making them and toning them down..of geting that desperately needed little nap sitting up, standing, anywhere anytime...automatic behavior served me well,thank goodness. Actually, I became a conversation piece in my family....tell us your latest dream...who did you say is over there on the table....I hope you aren't going to start that screaming and talkming all night again..you know , all those little things we have all heard at one time or another. Sorry this is so long but I really got to going ,didn't I? Anyway, I am visiting with my daughter and family thrrrough the month of August(that is iif I can get my meds up here ,another story another struggle another wworry that I will have to cut my trip short and miss this ppprecious time with my grandkids..2 boys age 13 and 10.. and then there is Gracie! age 2....I told my daughter she should have named her Blessing and she said.. Grace is close (and accurate..sssshe was not supposed to have any more children but oh, what we would have missed. See, it is true...and I don't mean to step on anyone,'s toes about religion, honestly..but I do believe God or whomever you wish to identify with, ddoesn't close doors unless He opens a window. I have learned from this little girl to accept what I have and explore each thing as if it were brand new and thrilling and to trust that I will know when the time is right fffor each new thing. I don't know if any of this letter makes any sense to you,Melody and I don,'t think you can use it as one of your postings but I just had to get in touch and all of this prattling on has released a lot of pent up feelings in me.I needed this. I thank you so much..you will never know. I'll be in touch later if you like and maybe can be a little more specific about my symptoms,meds,drs.,etc.I can say this without a doubt.. my life may have been pretty sleepy but it has neverbeen boring..some oof my biggest laughs have bee at myself...some ooooooof my biggest hurts have been because of my illness and myself....but once I accepted the fact that this is me and I am me and aaalways will be then I know I am all right. A little unsure at times..the only thing I am sure of and I'm not kidding,honestly..I amsssure that no matter what or where or when I am not going to be on time! I have lost my sense of time..I don't know 20 mins from 2 hrs. I run into a grocery store and fffirst thing I knoow I have been in there 2 hrs. reading labells,looking at produce,etc. And I am always sssshocccccked wwwwwhen I reaaalize what time it is.I have terrific staying power for intense work that tries the patience of others but can't ever seem to get dressed on time or finished with my days agenda no matter what!!!!!!!And this is not just lately. Any ideas or me,toos to share? Nanzzz AppleQ@aol.com......................Oh,yes,your site iis beautifully done and I know I am going to eeeenjoy all phases of it.