After reading this thread www.abovetopsecret.com...
I was appalled, wounded, and ultimately frightened. It is
no secret that I have narcolepsy. Most of you have heard of this neurological sleep disorder and already know what it entails. Surprisingly, or
perhaps not surprising at all, there are many who still believe it is a myth, an imagination, and/or a serious case of laziness, apathy, and lack of
motivation. This includes some physicians as well—some believe it is psychological and temporary.
I know that the ATS crowd knows better though. Just in case you have not heard of narcolepsy, it is a very real sleeping disorder that results in
extreme drowsiness with secondary symptoms such as sleep paralysis and cataplexy (waking paralysis. I thank God everyday that I’ve never had a
cataplectic attack.) Even worse, the disorder is incurable at this time and the prevailing methods of treatment are dubious in their effectiveness.
Excessive daytime sleepiness. People with narcolepsy fall asleep without warning, anywhere, anytime. For example, you may suddenly nod off while
working or talking with friends. You may sleep for a few minutes or up to a half-hour before awakening and feeling refreshed, but eventually you fall
Narcoleptics feel an irresistible urge to sleep, even at inappropriate times. This urge often overtakes the narcoleptic and the physiological need for
sleep wins the struggle. This symptom is called EDS, or excessive daytime sleepiness, and it dramatically affects all areas of the narcoleptic’s
life. And that’s really what this thread is going to be about: my experience with this most sinister, debilitating, yet subtle of diseases.
I won’t presume to bore you (oops, too late!) with the causes:
Hypocretin (hi-po-KREE-tin) is an important chemical in your brain that helps regulate wakefulness and REM sleep. People with narcolepsy have low
levels of this neurochemical in their spinal fluid. It's particularly low in those who experience cataplexy. Exactly what causes the loss of
hypocretin-producing cells in the brain isn't known, but experts suspect it's due to an autoimmune reaction.
Narcolepsy may cause serious problems for you professionally and personally. Others might see you as lazy, lethargic or rude. Your performance may
suffer at school or work.
It is estimated that narcolepsy affects as many as 200,000 Americans, although fewer than 50,000 are diagnosed. Narcolepsy is as widespread as
Parkinson's disease or multiple sclerosis (MS) and more common than cystic fibrosis, but it is not as well known.
or this mother of all lies I stumbled across:
medications are very effective
So, why am I making this thread? Well, as I stated already—the correlation between flu vaccines and narcolepsy
# is incredibly troubling to me as I know firsthand how awful it can be to live with this
misunderstood sleeping disorder. It really is one of those things that must be experienced before it can be empathized. Incidentally, I hope NO ONE
has to walk a mile in my shoes! I wouldn't wish it on my worst enemy.
To various degrees and in different ways, this sleeping disorder has changed my life—and none for the better. I am very passionate about spreading
awareness for this disorder in the hopes that it will save someone the anguish and sorrow it has caused me. Even if this thread doesn’t relate to
you personally, perhaps it will help change your view on someone you know who may develop this disorder. And most importantly, hopefully we can avoid
a nation of narcoleptics by spreading awareness about the possible vaccine correlation.
Okay, now that all the formal stuff is out of the way, I am going to tell you the nitty-gritty of my life as a narcoleptic.
I was not diagnosed with narcolepsy until I was in my first year of college. I often wonder about how different my life would have been had I had an
earlier or later diagnosis. I’m not sure if it would have made things better or worse.
As far back as I can remember I was always very tired. I was one of those children who always fell asleep on a car ride. I fell asleep on the drive to
school nearly every day while I was in elementary school. I played little league baseball and often fell asleep on the car ride to practice. Many
times I begged to sleep instead of having to go play baseball (which I loved playing.)
As I got older I tried combatting this tendency to sleep in the day by attempting to go to sleep earlier. It didn’t work. At one point I was living
with my estranged father and his new wife. I had 2 stepbrothers that I shared a bedroom with. I always fell asleep to the sound of them talking to
each other in the darkness. I always woke to the sound of my stepmother yelling to wake me up. I would usually awake mid-sentence and instantly fall
back asleep before I could even move…only to be awoken by more shouting.
I was living between three households at this time. I was living with my (evil) stepmother during a few days of the week, with my mother on her days
off, and with my dad’s parents for the weekends. My dad was and still is a truck driver and was never at home.
On the days that I spent away from the stepmom, I napped after school before starting on my homework. I wasn’t allowed to nap with my stepmom
around. By the time I was 12, I decided I wasn’t going to stay with my stepmother anymore and I didn’t care what anybody had to say about it. I
put my foot down on this issue and reduced my households to my grandparents and my mother. I was now free to nap everyday at anytime.
I had this enjoyable routine of falling asleep on the way to school on the car ride, and coming home to fall asleep during a rerun episode of Star
Trek TNG. On the weekends I invited friends for sleepovers. We would generally stay up all night drinking pepsi, watching TV, playing video games, or
having marathons of board games like RISK. This is when I started to suspect that something was NOT normal about me.
I noticed that after a night in with the friends, I would sleep for about 12 hours straight. I always just blamed it on a night of sodas and video
games. But then I noticed that none of my friends needed to sleep for this long. They were awake and active several hours before I would wake up. Many
times they would attempt to wake me so we could continue the good times as only teenage boys know how to.
Eventually my friends started taking off and heading home before I awoke. They had learned not to wait for me—they knew I would be sleeping well
into the late afternoon. I was always very apologetic for neglecting my duties as host and felt really bad about not seeing them off or not offering
them breakfast, or not being able to give them my company.
After I graduated the 8th grade I spent a lot of the summer sleeping. I fell into the habit of staying up all night and sleeping all day. No one could
wake me. It was not unheard of for me to sleep until 3 or 4PM. I was then diagnosed with cancer just prior to my first day of high school. You can
learn a little more about that here: www.abovetopsecret.com...
So, during those years of cancer treatment, the issue of my sleeping habits naturally fell to the wayside. Incredibly, I remember complaining a lot to
my doctors describing my problems. I told them how I was very tired all the time, that I took short naps periodically, and that I struggled to balance
my sleep cycles. The docs usually brushed it all off and went straight for Occam’s razor touting, “Your body is dealing with cancer and
chemotherapy. I’m not surprised you’re always tired.” More about this later—
In retrospect, yes, I had some very bad habits as a teenager. Heck, even before I was a teenager I had very bad habits. No one ever set a bedtime for
me. No one ever told me when to go to bed. In fact, I was often shocked to hear of my friends’ parents imposing a bedtime on school nights. I
usually just stayed up watching Nick-at-Nite or something until i dozed off. I had never heard of such a thing until living with the stepmom; a policy
I would later rescind. I readily abused this lack of parental discipline in the summers, staying up until the wee hours. It’s not that I especially
tried to stay up late. It’s just that I never felt tired at nighttime. I had a few naps during the day and would be most alert in the night. Those
were my peak hours—and it came into play a little bit later with work and school.
Even in the more structured walls of the children’s hospital cancer ward, I continually found myself sleeping all day and being awake all night.
This was especially difficult to excuse because this hospital had very strict meal times. I would often miss out on meals while I was sleeping (this
is because you had to physically call in and order the meal yourself at certain times. Patients were not automatically served.) I often slept through
the doctors’ daily rounds and missed out on my own progress reports. I usually slept through activities such as visitors, recreation, social
gatherings etc. But, again...due to the nature of my illness it was not much of a surprise to anybody that I was sleeping so much.
Amazingly, miraculously—I beat the cancer in only 3 short years and was ready to attend my senior year of high school. I was well on the path to
recovery but narcolepsy would strike back with a vengeance now that I was getting older and entering the realms of adulthood AKA responsibility.
During my senior year, I was late to class EVERY…SINGLE…DAY of the year. I just couldn’t seem to wake up when I needed to. I would hit my alarm
clock and instantaneously fall back asleep for 20-30 minutes…sometimes an hour (interestingly enough, this tendency to immediately fall back asleep
upon awakening is one of the diagnostic methods to identify narcolepsy.)
For the year, I had 2 morning classes: ceramics and fabrics. Since I had most of my academic requirements satisfied with home schooling, I pretty much
only had electives to deal with. The ceramics teacher (go figure!) didn’t mind when I showed up late and he didn’t bother whenever I would fall
asleep in the corner of the room with a lump of clay in my hands. The fabrics teacher was very strict on enforcing the school’s tardy policy—and
if a hall monitor type didn’t see me on my way to class as I snuck through the halls, my fabrics teacher would rectify the oversight by writing me a
Needless to say, I had lunch detentions at least a few times a week. I eventually accrued so many detentions that I started getting assigned Saturday
school periods. At one point I was called to see the principal and vice principal. They were very stern looking over my records and said things like,
“Don’t you take your education seriously? Why can’t you show up for school on time?”
My response was a very sober and honest confession “I…don’t know. I want to be here. I care about my education, but for some reason I can’t
seem to wake up when I need to.” It didn’t matter that I was on the honor roll and had the highest grade in anatomy & physiology class in the
entire school. They still treated me as a hooligan and made an example of me with detentions and Saturday schools. Looking back, I kind of wonder why
they never asked me to see the school counselor or anything.
I tried my luck at dating a bit while in high school. The closest thing I ever had to a relationship didn’t bode well. I had actually missed a few
key dates due to oversleeping or falling asleep prior to the date. It’s very difficult to explain to someone that you fell asleep instead of keeping
an appointment with them. It’s something that would affect my future social life and relationships with my family.
I didn’t care though. I was on the fast track to higher education and was determined to shine through despite my adversity. My first semester of
college I managed to get hired on the night crew stocking groceries. I loved that job actually. It was easy and peaceful—it had only one drawback. I
was only getting about 4-5 hours of sleep a day. I would work my shift, come home and take my nap, go to class, study for an hour, and then go back to
work. I didn’t last very long doing this and had to resign.
I was starting to blame and loathe myself for my failure. My grandfather who practically raised me often told stories of being a full-time college
student and a full-time employee. He even managed to find himself a wife, have 4 kids, and build a beautiful home. After all, it was that kind of work
ethic that made him into the well-to-do successful man that he was. I was determined to emulate him, but could only attack myself for not being able
to follow in his footsteps.
I continued to struggle with my sleep needs. My body simply didn’t behave like a normal person’s body. It was entirely unpredictable. Sometimes I
would sleep at night, sometimes I wouldn’t. Sometimes I could wake up, sometimes I couldn’t. Sometimes I slept for 4 hours and sometimes I slept
for 18 hours! Sometimes I would be clear-headed and energetic (rarely,) and sometimes I would be incredibly drowsy and foggy-minded. There was just no
telling how I was going to feel from a day-to-day basis.
I also complained to my doctors following up my cancer treatment that I was often lethargic and had trouble keeping a healthy and consistent sleep
I heard a lot of suggestions from doctors, friends, and family. I was told all the trite platitudes like not to drink coffee, not to watch TV an hour
before bedtime (whenever that would be, I could never tell,) to exercise in the mornings etc. Yeah, it all sounded good, and I made very honest and
practical attempts at these lifestyle changes. I had a mindset that it was ME that was mucking up my sleep habits (and to a degree, yes, it’s true.)
But, no one seemed to understand what I was going through. I didn’t even understand the culprit here—all I could do was blame myself.
I tried hard. I really did. I made so many lifestyle changes in the hopes of fixing my sleeping cycles and daily fatigue. I ate healthier, I exercised
periodically, I meditated.* I was attracted to the supposed side-effect of increased energy. (*I will explain why I didn’t feel this beneficial
side-effect a bit later.)
I eventually found another job that seemed to suit my needs. It was a part-time position that only offered 5 hour shifts. It seemed perfect at the
time, and for a while it was. But I don’t have to tell you that the nature of part time shifts include unpredictable schedules. I hope you see where
I’m going with this.
On any given week I was asked to work at 6AM to unload a truck or to help close the store at 10PM. My work schedule was highly unpredictable, changed
from week-to-week, and spanned a wide range of hours. I tried explaining a few times to my boss how difficult it was for me to have such a work
schedule that encompassed early morning and late evening shifts bookending my class schedules. She simply told me to “take it or leave it.” I
never complained again about work scheduling and somehow pushed myself through it (honestly, I’m not sure how! I remember that it was a very
difficult and exhausting time of my life, but it seems like such a blur now…even though it was only a few years ago.) My grades in class suffered as
In fact, I was again showing up late—or not at all—on a regular basis. I had at least two professors who gave me a barely passing final grade
(this was when I was doing the overnight grocery job.) Whether I truly deserved that D+ or not is still a mystery to me. I am quite sure I bombed
those courses and did not deserve the credits I received from them. I was struggling to complete assignments on time. All I cared about was when I was
going to get my next nap. It was like being in the grip of an addiction. I didn’t even care about college or work anymore, to say nothing of living
a life and having a family etc.—all I wanted was one long, undisturbed nap. That became my only aim in life.
I had one class that ended at 9PM. I was driving home one evening and nodded off while behind the wheel. Luckily I woke up as I started to swerve into
a ditch and took control of the vehicle. I had fallen asleep for a few brief seconds and it could have cost me my life—or the lives of others. This
was the one and only time I have fallen asleep while driving. That isn’t to say I haven’t had to drive while tired ever again. Nay, my life often
demanded that I drive while half-awake.
Probably since I was about 12 or 13 I had suffered from frequent sleep paralysis. I usually kept it to myself. I didn’t know what it was the first
few instances of experiencing it, but it didn’t take long until I heard the medical term and scientific explanations. Unfortunately, I never made
the connection between sleep paralysis (a common symptom of narcolepsy) and narcolepsy itself. I suffered many years from this frightful phenomenon,
but was never able to connect the dots that would reveal a sleeping disorder.
For years I would wake to the sound of the alarm clock and instantly fall back asleep, or into a sleep paralysis episode. When I finally did wake up,
I would roll out of bed and rush to class—sometimes without showering or brushing my teeth, or putting on fresh clothes in the hopes that this would
be the day that I finally didn’t show up late. In high school, being late meant lunch detention—in college, it meant the more benign penalty to my
overall grade. As much as I tried to prevent this embarrassment, I never showed up to a class midterm or final showered and groomed in all my time
spent in college.
Don’t worry, it’s not like I never showered and groomed—it just seemed to be on important test days that I was especially tired. Perhaps the
added stress caused me to be even more tired than usual.
I started to live in this very surreal paradigm—life was but a dream to me, but hardly merrily, merrily. I seemed to just drift incoherently from
one activity to another: work, school, bed, work school, bed. I would fall asleep while watching hockey games, while reading textbooks and taking
notes, and while in the break room at work. In high school, I was known to fall asleep during band class while the brass and woodwinds were rehearsing
I couldn’t figure out if I was biting off more than I could chew or if I was actually that lazy heap that so many thought I was.
I followed up with my doctors every 3 months, which is standard routine for a few years concerning cancer patients who are in remission. At every
appointment I said the same thing, “I’m always tired. I can’t sleep when I need to and can’t stay awake when I need to. No matter how much
sleep I get it never feels like I have energy.”
I saw different doctors during these appointments—they were a group of pediatric oncologists that all worked together. One particular appointment I
met with a doctor that I had not met with very often. He heard my complaints, looked through my charts, and said, “Hmm. I see you always complain
about these symptoms. It’s been a few years since you’ve had any cancer or chemotherapy. I wonder if you have sleep apnea.” He was the first
person who ever suggested that I might have a sleeping disorder. I had literally seen dozens of doctors and made the same complaints.
He set me up with an appointment to have a sleep study. I was diagnosed with narcolepsy and put on medications for it. Because one of my problems was
that I couldn’t sleep at night, I was prescribed sleep aids as well as stimulants. Believe it or not (and as paradoxical as it sounds) insomnia goes
hand-in-hand with the fatigue and drowsiness of narcolepsy. Think of when you are very exhausted but can’t fall asleep—this is typical for some
The neurologist/ sleep specialist I met with explained to me that the quality of sleep I get looks superb on the charts. In fact, he even went so far
as to say that non-narcoleptics wish they could sleep as soundly and deeply as I did. BUT that it was the narcolepsy that wouldn’t let me feel these
benefits. He explained that all the sleep and deep meditation in the world will NOT override the effects of the narcolepsy.
So, now I had a diagnosis, but a whole new set of problems. It finally clicked! It all finally made sense. I had a sleeping disorder. I finally had an
excuse! I could finally blame something! I didn’t have to attack myself anymore! I even went back to my old high school and talked to the ceramics
teacher about it—how I always felt really bad about showing up late and falling asleep at times.
That became my anthem. I started saying it so well and so often that I wasn’t even sure if I meant it anymore. At the end of the semester I told a
few college professors the same old line, “By the way, I meant no disrespect to you or to the class by showing up 15 minutes late everyday blah blah
Yes, I had a diagnosis that explained why I was feeling the way I did all those years. But it has been a struggle to undo the role model my
grandfather had set for me in the past. I started wondering if the diagnosis had become a crutch for me. It seems like any failing I have at this
point I could almost trace back to my narcolepsy. “If only I were more rested and energized. If only my sleep habits were consistent and
predictable. If only…if only…”
If only I were normal I could have found another job, put more effort forth, went to graduate school and achieved my dreams.
I walk a tightrope. On the one hand, I now know I have a debilitating neurological sleep disorder. I know my limits and capabilities much better now
than I did before. But on the other hand, I find myself more reticent to make ambitious goals. I find myself walking a fine-line between
self-defeatism and pragmatism.
At this point, I have almost given up looking for a career. I live at home with my mom and am financially dependent on her (you don’t have to tell
me I’m pathetic—like I don’t know that I’m pathetic.) I have applied for disability (I have other severe medical issues in addition to the
sleep disorder.) It pains me everyday that I stay at home at her expense. I still believe that hard work is the way and that it pays off. And yet,
here I am, jobless—doing no real contributory work. My sense of self-worth is anemic, but at least it's not catastrophic like it used to be.
I don’t really know what to do with my life. Creative writing is one of my interests, but I usually don’t feel motivated to write. I have given up
on my dreams. I doubt very much I will be the academic presence I always wanted to be. I don’t see myself in any prestigious positions. I would be
happy in entry-level work but have proven almost incapable of holding a full time job. I can do the work, but I can only seem to do things on my own
terms, in my own time. My ability to function diminishes over time. This has really become a moot point though as I have failed to even get past the
applicant stage. I have not had an interview since I lost my last job and applied to countless dozen places.
When I turn off the alarm on my clock, I naturally sleep for about 12 hours in a 24 hour period. Additionally, I can only stay awake for about 10-12
hours before falling asleep again. And of course, there have been instances where I’ve stayed awake for 40-50 hours and finally had to take some
drowse-inducing anti-histamines just to finally feel sleepy (this isn’t as common, but I experience this at least a handful of times a year.)
While awake, I am usually extraordinarily groggy. I have tried just about every medication used to treat narcolepsy. I have tried faithfully for about
2 years. I found the side-effects of the medications to be intolerable and the benefits negligible. I gave up entirely on conventional
medicine—meditation and alternative treatments weren’t able to relieve my drowsiness either. I have made drastic dietary changes purported to cure
all disease, but have felt no improvements.
I have been unable to forge lasting friendships and maintain familial ties. I can’t tell you the number of times I’ve either canceled or
unintentionally slept through a get-together with friends. I can’t tell you the number of times I have made a lunch-date with grandma and never
showed up because I was unable to wake up. Sometimes I simply couldn't sleep the night before, or sometimes I just couldn't be up at the designated
hour. I have stopped trying to make any appointments whatsoever. I’ve never been able to keep them—so, it is just easier not to make plans with
anybody than to let them down.
Clearly, I have been through a lot. I want to cite a post I made earlier that will sum up my feelings on narcolepsy:
I do not say this lightly
about narcolepsy. I am a cancer survivor and had a 3 year bout involving half a dozen major surgeries and 8 high-dose chemotherapy regimens. I have an
autoimmune disorder that attacks the neuromusculature. Left untreated, I will be totally, permanently paralyzed head to toe. I have had attacks where
I have been unable to even lift myself out of a chair. I donate a unit of blood (which is not viable for transplant) every 2 weeks to reduce the
dangerously high level of iron in my blood (hemochromatosis.) I have had to have hip surgery because steroid treatments (prednisone) have completely
deteriorated my femoral hip joints.
After all I've been through--none of that compares to the daily anguish of being hopelessly, incurably drowsy.
My very username is an allusion to my conflict. Buddha means one who is awakened, but the narcoleptic in me just wants to sleep. I just want to feel
rested. To the narcoleptic, sometimes even the very act of being awake is a discomfort. I have no sense of belonging. I have no identity or role in
society. The only thing I know for sure is that I really want to have one glorious, golden nap. I patiently await that day with hopeful verve.
So, now that I’ve disclosed all this what should I say? Should I say to love one another and not take a single day for granted? Should I say to
think and act positively and to trudge through all the muck no matter what? Yes, I probably should say these things because this is what I
practice—I don’t know if it has brought me any peace, clarity, or enlightenment though.
Oh yeah, and don't forget to practice good sleep hygiene.
Maybe my determination to uphold optimism is my last and only method of defiance.
And don’t feel bad if you fell asleep while attempting to read this bombastic, trite, and exceedingly dull onslaught of inconsequential text
edit on 23-1-2013 by NarcolepticBuddha because: (no reason given)