Sleeping through the day - Narcolepsy

Lisa Zeller has always been a sleepy head but three years ago the tiredness took complete control over her life. At first she recognized a strong urge to sleep. Even 14 hours a day weren’t enough. “When I couldn’t sleep or tried to fight the tiredness I just fell asleep, even when walking or eating – my head just into the bowl of soup or salad. After a while I got other symptoms, which I didn’t know what to think of. They were terrifying, because I couldn’t control them and they didn’t get better with sleep. Often my muscles just stopped working, I just got jelly legs and fell down. I really thought I am going nuts.” Finally Lisa was diagnosed with Narcolepsy, a little-understood sleep disorder that afflicts as many as 100,000 to 200,000 Americans. Narcoleptics suffer from an excessive daytime sleepiness, an all-consuming urge to sleep. Researchers compare the disorder to the way non-sufferers feel if they have not slept for two full days. The sleep becomes the ruler of the Narcoleptics life, taking control in odd situations. Lisa falls asleep whenever she can within moments. The longest time measured in a sleeping lab was 45 seconds. But also constantly sleepy, most Narcoleptics nearly never reach the relaxing deep sleep levels. They fall asleep, start dreaming and wake up again – sleep chopped into tiny bits – a life like torture. For Lisa even worse than the tiredness are Cataplexies, a sudden relaxation of muscles triggered by strong emotions such as love and malicious joy, anger, embarrassment, excitement, sorrow and surprise. Mostly Cataplexies are limited to parts of the body - the face or one arm, with things falling down. But once or twice a day Lisa falls down completely. The only thing she can do is protecting her head with the last flash of energy before she hits the ground, completely paralyzed. It takes about 20 to 30 minutes before she can get up again. When she lies on the ground Lisa is conscious, recognizes everything around her but isn’t able to react, not even to speak. In addition to sleepiness and attacks of muscle weakness, other common symptoms include brief periods of paralysis while falling asleep or waking up, hallucinatory experiences and automatic behavior, when only the brain starts sleeping, while the body is still moving on. “When this happens I do things which don’t make sense” Lisa says, “like cooking pasta in the oven or shaving my little dog.” Narcolepsy is a very disabling illness and the effect on its victims is devastating. Even treated narcoleptic patients are often markedly psychosocially impaired in the area of work, leisure, interpersonal relations, and are more prone to accidents. These effects are even more severe than the well-documented deleterious effects of epilepsy when similar criteria are used for comparison. Because Narcolepsy is not well known the large majority of narcoleptic patients in the US are still undiagnosed. One recent study suggests that it takes an average of 14 years between the onset of symptoms and correct diagnosis. During this time Narcoleptics are often stigmatized as being lazy and diagnosed with illnesses like depressions, schizophrenia and children often with ADHS. I am documenting the life and struggle of people around the world suffering from Narcolepsy – an ongoing project.