Do I Have Narcolepsy? -or- Is My Dad An Asshole?
Paul Durant
my parents always told me I was just lazy. Recently I went to a sleep
pathologist to investigate the possibility of sleep apnea, and she told me I
may have narcolepsy, but we have to run more tests. (namely, that one test
where you take five little naps throughout the day and they see how long it
takes you to go to sleep, and then how long to start dreaming.)
So I start reading up on narcolepsy, and I go "Holy shit, this is me to a
'T'. I thought everyone had this kinda stuff!" Namely, I experience
hypnagogic hallucinations (auditory and visual, no real pattern -- sometimes
I hear total nonsense music and see computery stuff, sometimes I hear people
talking in another language and see dogs running around, et al.), am
continually and excessively tired during the day and have truble getting and
staying asleep at night, rarely experience sleep paralysis (oddly enough,
only when sleeping in English class), and start to dream very early in
sleep. I don't know if this is related, but I also have the wierdest dreams
in the history of cognitive thought on a regular basis -- I can have a Mega
Man robot master named "Burger Man" (who shoots burgers), a robot master
named "Spider Man" (who also shoots burgers), a flaming warehouse that turns
into a smelly gym complete with criminal mastermind, a lost wallet, a
champion racehorse, and a military expedition to the Rockies all in the same
dream. And it made sense at the time, too. But I digress.
Anyway, since she wasn't sure if I was narcoleptic, she suggested that I try
and "reset my circadian rthym" to make me go to bed at 9:00. I was hesitant,
because 9:00 is when ten-year-olds go to bed, but I agreed anyway. To do
this, I was supposed to stay up as late as I could, sleep for 10 hours, then
stay up 2 hours later each subsequent night. I stayed up until 3:30 AM that
night, 5:30 the next, et al. It was sheer TORTURE -- I was begging for God
to smite me and end my suffering. I was in constant pain, hallucinating,
lonely, and the only thing I could ever think of was how I wanted to go to
sleep RIGHT NOW. But somehow I lived through it, and now my bedtime was 9:00
PM, and I would be happy and awake during school, right?
WRONG.
It's even worse than it was before. During the day, my fatigue hangs on me
like the weight of the planet, and I can barely function at all. I fall
asleep VERY often in class, often sleeping through entire periods (and these
are 93 minute long periods). I feel, to use the vernacular, like a pile of
shit that's been hit by a bus. This has been going on for one week and only
getting worse -- Every night, I will either wake up at 1:15 AM (on the dot)
or be unable to fall asleep despite my exhaustion, laying in bed from 9
until 12:00 or 1:00. This week has been one of the worst weeks of my life. I
tell my dad how I feel, and say I want to stop going to bed at 9 because
it's screwing SOMETHING up, and when I went to bed at 10 to 11, I still
slept in class, but it wasn't this often and it wasn't this painful. Dad
tells me no, and that I have to keep this up for 3 months before I can quit.
HOLD IT RIGHT THERE.
I have been feeling like shit since this whole thing started. I haven't
started any new medication or anything else that could cause it. My grasp of
cause and effect tells me that this is the cause of my shittiness. He tells
me I'll have 2 months 3 weeks more of this, AND the fact that I'm going to
bed with the children and seniors? No. Hell no. Then he drops it on me.
If I drop out of this now, he will never again provide any help for sleep
disorders. No further testing. No medication. No support. No nothing.
Essentially, he's holding me for ransom.
But is he right? That's what I'm asking you. Is it reasonable to expect me
to go through 3 months of this? Will these symptoms always happen with such
an adjustment, or is it just me? Do my symmptoms sound like narcolepsy? I'm
asking any sleep pathologists and educated folk to help me out on this one.
Patrick Richards
have a couple of other sleep disorders and still struggling going on 4
years.
Sorry, but I am going out of town today so I won't see any replies but I do
know a bit.
I think on the resetting the clock you do have to do that for seveal months
BUT I don't understand the doctor not doing the naps tests. Usually what
they do is a standard sleep study in that you stay overnight in the lab
hooked up, hard to sleep but you usually do and they test for sleep apnea
and possible other sleep disorders.
The next day you stay at the lab, you are awaken about 6 or 7 in the morning
and told to stay awake. About 9 or 10 am you will be asked to lye down for
20 minutes and they will see if you go to sleep and if you get rem.
they do this about 4 or 5 times. Usually people with N go to sleep in less
than 5 minutes and go into rem quickly. The normal sleep cycle rem does not
usually happen for 90 minutes but with N you get it pretty quick.
As far as dream or whateve you are saying it might, and I say might, be
cateply (not spelled right).
Resetting your clock I don't think will do anything for your N if you have
it.
Did not get the part about staying up to 3:30am as you did not finish what
you were doing? A doctor wanted me to go for a walk at 8am every morning
for 45 minues facing the sun. Our bodies respond to light and without it we
would not know when to go to sleep and wake up.
In your case you need to have your Dad on your side. You can go to
sleepnet.com and look for narcelpesy forum and read there but I think you
need a sleep study and nap test done. I thought there might be a blood test
they can do for N but not sure if it is done.
I have had 6 sleep studies done in the last 3 years and without a sleep
study doctors are guessing so I would push for sleep study and you can still
go to bed at 9pm but push to have study done. There is a chance you have
sleep apnea.
Do you snore? Do you stop breathing when you sleep (this someone else has
to listen for as you cannot tell)? This are some of the signs of sleep
apnea besides being tired thourghout the day.
"Paul Durant" <031...@comcast.net> wrote in message
news:oJIA8.41087$n7.38...@bin8.nnrp.aus1.giganews.com...
Arrhae
newsreader...
> If I drop out of this now, he will never again provide any help for sleep
> disorders. No further testing. No medication. No support. No nothing.
> Essentially, he's holding me for ransom.
>
> But is he right? That's what I'm asking you. Is it reasonable to expect me
> to go through 3 months of this? Will these symptoms always happen with such
> an adjustment, or is it just me? Do my symmptoms sound like narcolepsy? I'm
> asking any sleep pathologists and educated folk to help me out on this one.
I don't think that's going to help one bit. Find another doctor, or find
some family doctor that'll diagnose you with ADD and get you on some meds
to help. That's pretty much how I'm running now.
Another, riskier option, would be to try and get a depression diagnosis
and a prescription for Effexor. There's a lot of side effects with that
med, and withdrawal symptoms, but regardless of how crappy it makes you
feel during the day, you may well get the best sleep you've had in a long
time on it. One of the side effects many depressed people on it complain
about is that it delays the onset of their REM sleep - which may be
exactly what you need. I was on it for two days, stopped feeling weak
when I laughed and such, didn't dream during short naps, and slept very
well for a couple days after I went off it, as well. You get more of the
refreshing sleep phase, apparently, so you're less tired during the rest
of the day. I went off it because the side effects were intolerable, for
me, but it works for others, and it worked while I was on it.
--
"All I know is that he likes pop tarts. POP TARTS. Find me a restaurant
that serves Pop tarts and we'll talk."
-Sara, 10/18/01
Tim
>>Anyway, since she wasn't sure if I was narcoleptic, she suggested
that I try and "reset my circadian rthym" to make me go to bed at
9:00. I was hesitant, because 9:00 is when ten-year-olds go to bed,
but I agreed anyway.<<
Hello Paul,
I notice you do not mention a word about light therapy, which is
almost always indicated in 'resetting' circadian rythym. The sleep
specialist I am seeing instructed me to obtain a 10,000 lux medical
grade therapy light from Apollolight.com (or a similar company) in
order to 'reset' my circadian rythym. I am to use this light every
day for 30 minutes immediately after I get up. After about one month,
this will 'reset' my brain to the light, then we will gradually move
my sleep/wake times by 30 minute increments until I'm waking up and
sleeping when I should. I cannot say whether it works, because I
haven't ordered one yet, but from what I understand these lights are
very effective for circadian rythym disturbances.
I sympathize with your situation. I have narcolepsy with cataplexy
and have only recently been diagnosed at 31 years of age. Thinking
back, I suspect I've had narcolepsy since the age of 15 or 16, which
is the earliest I can trace back my sleep related problems (beginning
with night insomnia with daytime sleepiness). My parents thought it
was just some teenage 'thing', that I was growing and needed more
sleep, or something. Despite being health care worker for several
years, it never occurred to me that I had a sleep disorder until about
18 - 20 months ago, when a nurse suggested it to me.
While my parents were never hard on me, I've been accused, whether
implied or expressed, of being lazy, unmotivated, undisciplined,
'shiftless', immature, indifferent, self-absorbed, lacking direction
or purpose in my life, and goodness knows what else, relating to poor
academic and work performance due to what I now know to have been
caused by narcolepsy. When you hear these things long enough, you
begin to believe them. For as long as I can remember, I have
essentially blamed myself for all my sleep related issues, due in no
small part because so many others have suggested that I just wasn't
disciplined enough to get myself on a consistent sleep schedule (or
that I didn't care enough about my grades or job).
I cannot tell you the number of times I have been struggling half-way
through a day of school or work, barely keeping my eyes open, and
someone would say "You look like hell, maybe you shouldn't stay out so
late" when I hadn't been 'out' in months. Or, I would suddenly become
so tired that my eyes would get all blood shot and glassy, and without
fail, someone would suggest that I 'stop partying so much' when I
hadn't done any of that in months, either. Or, someone would
playfully albiet seriously say 'I don't know what kind of drugs you're
on, but I want some'. Things like that, I've heard them all a hundred
times.
All I can say is hang in there, and be thankful you're getting help at
17 instead of 31...or 45 as some have. I have lost two good jobs,
have wrecked two cars from falling asleep at the wheel, and have been
unable to stay gainfully employed for almost two years. I just moved
back in with my parents, at 31 years of age, who have also been paying
my medical bills since I have no insurance. I will likely file for
bankruptcy because I cannot pay my bills and haven't been able to a
while now. Thank God I have my parents to fall back on, as painful as
that may be to do at 31 years old, because I would probably be living
under a bridge or something right now if I didn't have any support
means.
I'm not telling you this because its uplifting. I'm telling you this
because the earlier one gets diagnosed, the more likely one will be
able to avoid a situation like mine. Your father needs to stop acting
like such an ass and learn something about sleep disorders, and I'd
tell him so myself if I could.
If this routine is making you worse than you were before, you need to
communicate that with your physician. If you aren't already seeing a
physician who is certified in sleep medicine (a sleep disorder
specialist), I strongly recommend that you demand that your doctor to
refer you to someone who is qualified in sleep disorders.
Good luck and keep us posted.
Regards,
Tim
JTatum5655
have not been put on provigil. I don't have narcolepsy but my girlfriend does.
I will never claim to understand what she goes through because I have no idea.
Luckily, Zyrem allows her to sleep at night. She still has hallucinations and
gets daytime sleepiness. She is unable to go to late movies or out very late
because she is fearful of falling asleep, even if she has slept all day.
Luckily she is motivated and handles it as best as she can. For you, though,
it sounds like you need some more support. She was diagnosed after having mono
in college. Make sure your doctor is taking this seriously. Hopefully you
won't get cataplexy as well, which is what Zyrem has to be prescribed for now.
I think provigil causes awful headaches, which results in another prescription
of topomax. Your dad needs to get real and understand this is a very serious
issue. Once my girlfriend's parents found out that it was real and saw her
first cataplectic episode, they knew how serious this was. Good luck and check
into coming to the narcolepsy conference in Vegas in October. Also, there is a
chat every thursday for people with narcolepsy to communicate w/ each other. I
think it's at www.sleepnet.com