narcolepsy itself doesn’t get “triggered.” we always have it, whether or not we show symptoms. it’s just the name of the disease, which is made up of these main symptoms:

• Excessive Daytime Sleepiness (EDS)…it’s just what it sounds like. we get excessively tired at inappropriate times with no real known cause. we may or may not fall asleep at these times. the notion that we just fall asleep randomly thru-out the day isn’t exactly correct. we may have sleep attacks, but more often than not, it’s when we’re doing something relaxing like watching tv or reading. EDS is the main symptom of narcolepsy, not sleep attacks. those are much more rare than you might guess.
how it interferes: it ***** to feel draggy & tired all the time, it’s hard to concentrate at school or work, we might fall asleep at bad times like driving (although it’s rare), folks don’t want to hire you if you fall asleep in an interview, it can limit things like driving or what career you choose if it’s not well controlled, stuff like that.

• Cataplexy…loss of muscle tone triggered by intense emotion. think of fainting goats who fall over when frightened. that’s us, only the emotion may be different. for me, it’s anger. for my brother, it’s giddiness form laughter. might affect just one part, like our legs or head, might affect the whole body. whatever body part is affected will slump, we cannot move it. we are awake the entire time, which may be anywhere from 30 seconds to 30 minutes. mine usually last about 5 minutes. key to preventing them is to prevent emotions from getting out of hand. not always possible, so it’s one reason many narcos don’t go to comedy clubs, lol. i only have a few a week, but some narcos have them several times each day.
interference: imagine having one of these behind the wheel of a car…or walking down stairs…or holding a baby…or even just when walking down the street or in a store surrounded by a million people. we KNOW you’re staring at us, whispering about us, pointing…we are awake & crying inside.

• Hypnogogic Hallucinations…most people hit REM (the dream stage of sleep) after about 90 mins of sleep – we enter it within 5 mins, sometimes as we’re falling asleep & sometimes even before we are technically sleeping. this causes us to dream while we’re technically awake (since we’ve already entered REM). hence, hallucinations when we are falling asleep or waking up. mine happen several times each week & are auditory in nature so i hear things that aren’t really happening. not usually an issue, most of the time i am able to recognize it’s not real & continue falling asleep…unless it involves something scary like fire or someone breaking in.
interference: cops know you’re number by heart because you call 911 about “the scary guy standing in the room” on a fairly regular basis. you don’t mean to cry wolf, it seems real at the time. and no, we’re not schizophrenic. it’s just a dream. ’nuff said.

• Sleep Paralysis…when you enter REM, your body goes into a lock-down paralysis mode to prevent you from hurting yourself while dreaming. Since we enter REM at different times, we are in a state of paralysis while falling asleep or waking up. for me, this happens nearly every night, but it only lasts a few minutes. not generally scary once you learn to recognize it.
interference: scary to not be able to move even though your eyes are open.

• Automatic Behavior…ever notice you’re driving but been daydreaming & don’t remember actually driving the last few miles? we do that, just a lot more often & usually for longer. our body is putting all effort into staying awake, leaving nothing for conscious behavior or memory. so we kind of go into automatic mode but don’t realize it or remember it after. this happens a lot if we are very tired. just our body’s way of staying awake & keeping us safe.
interference: at its worst, it can be dangerous in the wrong situation. at the very least, you don’t remember anything you’ve done & your friends think you’re high since you don’t respond when they talk to you.

not every narcoleptic develops all symptoms. most, in fact, only have one or two. every case of narco is different, and each person has it to a different degree. meds to help us stay awake may help. things like taking a short nap recharges our batteries for several hours, so i generally take one or two 10-min naps each day. that helps keep sleep attacks away. if attacks do occur, they don’t usually last longer than a half hour, most often just for a few mins. aand for severe or frequent cataplexies, meds may help. not much is done for hallucinations, paralysis or auto behavior. those things just kinda get dealt with.

we are usually diagnosed in our late teen/early twenties, but some people aren’t diagnosed for many years (like my dad at age 45) because it’s misdiagnosed or attributed to things like working midnights. i remember having hallucinations at about 5 yrs old & having sleep paralysis by age 8. i always felt tired, as long as i can remember. never mentioned it growing up because i thought everyone felt that way. didn’t know any different. my brother was diagnosed in his twenties, my nephew at 16. we each have differing symptoms & to differing degrees. but you learn to adapt your life as needed & take each day as it comes. some days are good & we feel awake all day, some days are bad & we want to sleep all day. but it could be worse. at least we have a good way of breaking the ice at parties…”hey, watch this, i can fall asleep standing up…”

still with me or did you fall asleep two paragraphs ago? lol, sorry it’s so long. hope this helps you understand my world a little better. feel free to write if you have any other q’s.