The Narcolepsy

A student in PSYCO 104 this term (M.B.) wanted to share his experiences with narcolepsy. I've read about it, but have never met a student who has it. He was okay with me giving his name, but in the interests of ethics, I'm just using his initials. Here is his description in his own words (with minor editing for readability):

...when I had the [multiple sleep latency] test done, I went in and out of REM sleep 173 times in an 8 hour period. During the daytime portion of the test, where they had me take 5 scheduled 20 minute naps, between each of which I needed to stay awake for 2 hours, the average time it took me to fall asleep for each of the naps was 2.3 seconds, starting from when the attendant turned off the lights in the room.

My physician told me that on average, a narcoleptic will wake up in the morning after being in bed for 8-9 hours feeling as exhausted as a normal person would after being up for 36 hours straight.  Obviously, after almost three years since my diagnosis, I can no longer relate to what waking up "rested" feels like, but from what I remember that statement is the most accurate relation I used to make.

In terms of my daily routine, including medication, the general consensus is, for lack of a better word, to jack me up on stimulants in the daytime, and knock me out at night.

Every morning I take 30mg of methylphenidate (which is fast acting), along with 40mg of methylphenidate-SR (which is slow acting).  The methylphenidate takes effect within about 15 minutes, and around the time it wears off about an hour and a half later, the methylphenidate-SR takes effect, lasting for up to 4 hours.

At noon, I take an additional 10mg of methylphenidate (fast) and 20mg of methylphenidate-SR (slow) to get me through the afternoon. When I get home from school, or 4 o'clock comes around (whichever comes first), I usually feel overwhelmingly exhausted, at which time I take a nap daily which is usually 45 minutes in length. This nap allows me to make it through the evening without further medication.

My nighttime routine has fluctuated most, as I've previously tried two different types of medications which did not work for long, each with their own odd effects:

Initially, I was on Co-zopiclone, and during that period of about 6 months, it supressed my ability to dream completely, which was a welcome effect, seeing that I had gotten used to the hypnogocic hallucinations and sleep paralysis during which I dreamt of snakes in my bed or shadows coming at me with knives. Now however, I am taking Apo-trazodone, at a dosage of 200mg each night. Trazodone has helped reduce the frequency at which I wake up during the night, and helps me stay asleep longer. As expected though, when I wake up, I am quite drowsy and groggy.

Most days when untreated, I could not stay awake in the passenger seat of a car for further than a block, nor could I stay awake for more than 2 hours without napping even when I was occupied.  Even now on medication, there are times at which I cannot stay awake, and involuntarily fall asleep for brief periods.

I also experience cataplexy, although luckily not to the extent that many individuals do.  While I have had some episodes of collapse, my symptoms while untreated ranged from buckling at the knees and dropping whatever I'm holding (being the most severe), to loss of the control of my facial muscles when angry, happy, or laughing. To this day, mostly during the evenings but also when I am extremely fatigued, I will slightly slur my speech, close my eyes, and involuntarily flatten my tongue in my mouth, pressing it against my teeth.

I know that I have very likely given you more information than you can talk about in class, but I am completely comfortable with you using anything you see fit. I am not embarrassed to tell my story, and I consider it an opportunity to do anything that I can to help educate more people on the effects of Narcolepsy.

Thanks for sharing that information with us, MB. It puts into perspective what "being really tired" is, and how most of us have no real idea what it feels like.

Why aren't you studying?