Narcolepsy: A Narcoleptic's Explanation of the Disorder

Narcolepsy is not a disorder where you spontaneously fall asleep (although this is one symptom). Narcolepsy is actually an auto-immune disorder that effects the hypothalamus and causes a huge array of symptoms that effect all aspects of a Narcoleptics life.

It is a very complex disorder, but I am going to attempt to outline the basics below. This is Narcolepsy as it applies to me, all Narcoleptics have slightly different manifestations and some have only one or two symptoms of the disorder.

And for the last time....Yes, I am really Narcoleptic! I was diagnosed by a sleep specialist at 14 and spent most of my childhood not understanding what was "wrong" with my brain.
And if you don't want to read all of this, please just take the time to understand that Narcolepsy is not just "feeling sleepy". It is a complex and at times frustrating disorder.

FALLING ASLEEP

Narcoleptics have sudden attacks of excessive tiredness, in the same way that epileptics have attacks.

Having a sleep attack is like taking a Tylenol PM, 3 benadryls and then attempting to stay awake. It's very very difficult and if you manage it, the only thing you are thinking about is staying awake.

If I do manage to keep my eyes open, I am not really "awake" and I may not respond when talked to or moved, not because I don't know it's happening, but because I am actually so tired that I can't acknowledge it.

Things that bring on a sleep attack for me are loud noises, flashing lights, fighting, crying, laughing, stress, solving a problem, nervousness, or being out of my typical environment.
Imagine having a disagreement with someone and being so tired that you can barely comprehend the argument. Imagine wanting to explain yourself, but also desperately wanting to just go to sleep and have it be over. Imagine trying to remember what's going on, make an argument, stay reasonable and rational while simultaneously slipping into sleep. Imagine fighting on 3 benadryl...This is what it's like to have a fight as a narcoleptic.

CONSCIOUS SLEEPING

Most people are not aware of the fact that when I am taking a nap I am still conscious of what is going on around me. It is similar to watching two TV screens at once, it is muddled and confusing, but if you say my name, talk loudly, move me around, etc you will get my attention and I will know and remember what you are saying.

This typically leads to people saying things like, "she's not really asleep". This is not true. I am asleep, but I do not sleep like you sleep.

I might not be fully aware of where I am or what's going on, but I am aware of what you are saying enough to laugh if something is funny, be offended if someone is talking about me or be confused or startled by being touched or moved.

CATAPLEXY

Cataplexy is a medical condition that is only linked with Narcolepsy. It is usually described as a weakening of muscle tone, which makes little sense to anyone including Narcoleptics. So, in plainer terms....

Cataplexy is when your muscles randomly weaken or stop working completely. I am not tired when this happens and it cannot be helped by caffeine.

This can manifest itself as completely falling over, having to support myself on someone or something, sitting myself down on the floor or a chair, dropping things, etc. It also means that I am very clumsy and have lots of bruises. Ha ha.

Trying to do something during a cataplexy attack is like trying to do one extra pull-up after you've already done so many that you want to cry.

NIGHTMARE DISORDER

Many Narcoleptics also have nightmare disorder, which means that more often than not I have nightmares when I fall asleep. We also dream in perfect clarity, down to the most finite detail and our nightmares tend to be extremely violent, graphic, and disturbing.

Which is often really freakin' awesome, but sometimes really frickin scary.

DREAM SENSES

This is probably the least common symptom that I suffer from. I have all of my senses in my dream, which means that I can see, taste, smell, hear, and feel everything that is going on.
It also means if I get cut, stabbed, shot, etc my brain thinks it actually happened and so I actually feel the pain. I kinda wanna get shot in real life just to see if the pain my brain conjures up in my dreams is how it feels in real life. Also the pain does not necessarily go away after I wake up, it typically lingers for a few minutes.

Couple this with nightmare disorder and then imagine how peaceful my sleep is...

SLEEP PARALYSIS

Imagine being asleep and realizing you have an itch on your nose, you reach to itch it but you can't move your arm. You try to move some other part of your body and realize that you are completely paralyzed. You try to stay calm and hope it will go away, but it doesn't. Sometimes it lasts for several minutes.

Couple that with a sense of impending doom or danger, very similar to a panic attack. This is sleep paralysis.

NO STAGE 4 SLEEP

I do not get stage 4 sleep. Ever.

Stage 4 sleep is the most rejuvenating and restful of the stages of sleep. I never get there. I spend most of the night in REM sleep, which means I dream for almost the entire time I am asleep.

It also means that I have chronic sleep deprivation.

INSOMNIA

Believe it or not, Narcoleptics are typically diagnosed because of unbearable bouts of insomnia.

We do not sleep more than the average person, without the stage 4 sleep the way we sleep is not even comprable to people's without narcolepsy.

About one to three times a year I have severe sleep deprivation from a long bout of insomnia. And by severe I mean sleeping as little as three or four hours in a week.

HALLUCINATIONS

Narcoleptics have a very thin boundary between awake and asleep, which means that we also have a very thin boundary between dreaming and not dreaming, which means that when we are tired we tend to hallucinate.

This is not a typical hallucination because it is actually a dream that is imposing itself on the real world. It can happen when waking up in the middle of the night, when falling asleep, or really anytime at all.

Imagine feeling the pressure of someone sitting down on the end of your bed. Despite the fact that you are scared to death, you sneak a peek. You see a man sitting at the end of your bed looking at his hands. He is sickly thin and wearing nothing but a pair of boxers. You immediately snap your eyes shut, curl up and hope that he goes away.

This is what it's like to have dreams impose on real life. And yes, that was a real example....

OTHER EFFECTS OF NARCOLEPSY

Narcolepsy also causes allergies, poor digestion, weakened immune system, depression, memory and retention problems, joint pain, migraines, and poor motor skills.

CONCLUSION

This barely scratches the surface of what Narcolepsy is, but I'm sure no one will even want to read it at the length it is, so I'll wrap up now.

If you're interested in learning more, try talkaboutsleep.com and go to the forums, you can get first hand accounts of what it's like to be Narcoleptic as well as post in the forum for friends and family members of people with Narcolepsy.

I hope this helped people understand a bit better and treat Narcolepsy as the serious disorder that it is.