TOM SCAMMEL (MD, Beth Israel Deaconess Medical Center): Narcolepsy is characterized by excessive daytime attacks of sleepiness and the sleepiness is often so intense that people with narcolepsy can feel as though they've been up all night and they feel that way every day. And so for many people with narcolepsy it's a struggle to stay awake on a day by day basis.
PATIENT #1 : It's affected everything in the past three years of my life. My school. My work. My friends. Myself. My personality has changed. And everything's changed. So my life is nothing like it used to be.
TOM SCAMMEL : In addition to having the sleepiness they often have three other symptoms. They have what are called hypnagogic hallucinations which are hallucinations that are very vivid and intense sensations that often come on just as they are falling asleep or perhaps just as they wake up. And those hallucinations can be a sensation of suddenly falling or they may think that they heard a sound or they saw somebody in their bedroom.
MICHELLE HIBBARD (patient with narcolepsy) : I dreamt I had needles in my mouth. I could hear my little nieces running around. Which they were and I couldn't spit the needles out because I didn't want them to get hurt and my mother could see my face like I was hurt and upset. Something was painful. While I was sleeping. I had to keep those needles in my mouth.
TOM SCAMMEL : They can also have what's called sleep paralysis which is an inability to move when they wake up from sleep and the first time that the sleep paralysis happens to people they can often find it terrifying.
PATIENT #2 : When I'm sitting and I start to want to go to sleep but I'm not asleep. That's when I have it and I can't move and I can hear. I know where I'm at. I know where I'm sitting in my living room but I hear strange noises like people coming in the house and I'm trying to wake up and I fight. Fight. Fight. It seems like it lasts forever. I don't know how long it lasts but it's a terrifying experience for me. I hate it.
TOM SCAMMEL : The final symptom that people with narcolepsy have that is seen in almost no other disease is something called cataplexy. And cataplexy is a sudden loss of muscle tone or muscle power.
PATIENT #3 : And I was standing in the ocean. Up to my knees. Just standing there looking out and I just keeled over and I was laying on in the water with my nose rubbing against the sand and I couldn't move and it was awful. And I just held my breath for about. And finally it passed. That, you know, was a first time experience and it just scared me to death.
TOM SCAMMEL : It's usually brought on by an intense emotion such as laughter but sometimes it can occur with anger or fear and so the most classic situation would be that somebody hears a really great joke and suddenly their knees go all weak and their trunk is weak and they'd slump to the ground.
NARRATOR : Narcoleptics can succumb to cataplexy at any time. sometimes dozens of times a day. Luckily for Michelle, this bout of cataplexy came on while she was seated. Nevertheless. The loss of muscle control in her face and jaw renders her unable to speak. Cataplexic attacks can last for up to 30 minutes. If an episode comes on while a narcoleptic is driving, swimming or climbing stairs the consequences can be deadly.
MICHELLE HIBBARD : I'm afraid to go for a walk by myself. If I'm more tired, I'm more prone to having cataplexy. So if I go for a walk I don't know how I'm gonna be. How far I can go and how I'm gonna be walking back.
NARRATOR : Luckily, narcoleptics are getting the first novel treatment in 40 years. Once they took addictive amphetamines to try to stay awake. Today, there's a new safer stimulant called modafinil. But even with the drug, Michelle suffers cataplexic attacks on a daily basis. Here the jitters of a television interview trigger an episode.
MICHELLE HIBBARD : Got it.
TOM SCAMMEL : So that's cataplexy right there?
MICHELLE HIBBARD : Yeah. Better treatment I believe will happen in my lifetime. I think it's a condition that you have to learn about it and learn to live with it. It's just a battle. Every hour.
NARRATOR : Now there may be new hope for narcoleptics. Watch this. That's cataplexy. Just like with humans. The loss of muscle control makes these narcoleptic dogs go limp. And look. These mice are also narcoleptic.
CLIFF SAPER (MD, Beth Israel Deaconess Medical Center) : The mice would walk along their cage normally and then after awhile they would suddenly fall over and they would twitch a little bit. Then they'd get up and they'd walk a little more and then eventually fall over and then they'd come back and they would walk again. What was happening was that the mice were having sleep attacks and they were literally falling over asleep.
NARRATOR : Now scientists are using these animals to study narcolepsy. It is the first window into this devastating sleep disorder.
CLIFF SAPER : It gives us a key to unlock some of these secrets about how the brain can fall asleep. For a long time the things that happened in narcolepsy. The sudden attacks of sleep. The sudden transitions into the type of sleep that we call REM sleep. Those things were completely without any explanation.
NARRATOR : Studying mice and dogs, scientists have now found a gene for narcolepsy and they've discovered that a key to the disorder may be a messenger in the brain called orexin. Scientists had known orexin helped regulate eating but they never suspected it might be involved in sleep. This orexin discovery may lead to a whole new class of drugs for treating sleep disorders.