Excessive Daytime Sleepiness (EDS)
All patients with narcolepsy have EDS and it usually the first symptom to develop. Because of it, the patient has to expend an ever greater effort on remaining awake during the daytime.
The patient may also suffer sleep attacks during which he falls asleep quite involuntarily. Indeed if he fights sleepiness and refuses to take a nap it is likely that sleep will overcome him without warning. He can also suffer 'micro-sleeps' very often without being conscious of having slept. For instance, during conversation, when another person is talking the narcoleptic can drift into sleep for as little as 30 seconds or so. When he recovers consciousness he attempts to re-enter the conversation only to find that he is 'out of synch', causing everybody else present to stare in amazement.
An important characteristic of narcolepsy is that, after having had a nap, the subject wakes feeling refreshed and able to function relatively normally for some time.
EDS can cause other symptoms such as mental 'fuzziness', poor memory, problems focusing the eyes, lack of energy and exhaustion.
Explaining Excessive Daytime Sleepiness
It is very difficult for the normal person to accept excessive daytime sleepiness as being out of the patient's control. The unaffected see the patient's sleepiness as an insult, a rejection, or evidence of a lack of interest. Family members equate the patient's pathological sleepiness with their normal experience of sleepiness and assume that the patient could "fight it off" if he or she really wanted to. The spouse and family members must clearly understand that this symptom is totally outside the control of the patient's volition or willpower. This point must be made with great firmness. Even family members with a rudimentary understanding of the disorder often conclude that the patient "just isn't trying hard enough".
Further to confuse the situation, the patient with narcolepsy may be capable of staying awake and alert, and may even become animated, during occasional, unique and/or stimulating circumstances. Family members, who see the patient responding with animation to an unusual guest, experience, or situation, tend to assume erroneously that the patient should always be capable of 'willing' the same level of alertness. For instance one narcoleptic patient attended a symposium on sleep disorders held out of town. Although he normally naps frequently and has little energy or enthusiasm during the day at home, he was able to remain wide awake and alert almost all day at the symposium (He napped for half an hour in the afternoon). This reinforced his wife's conviction that he could always stay awake if he were really interested in their home life.
Our experience with thousands of patients is that this is not correct. The normal correlation which exists between interest and wakefulness simply does not hold for those suffering from narcolepsy. Assuming that the person with narcolepsy could fight it off if he really wanted to is as illogical as assuming that no one need ever sleep because some people are able to fight off sleep during unique (Christmas Party) or emergency (fire) situations.
The symptoms must be defended as manifestations of a disorder, and not signs of a willful lack of effort. Without firm and knowledgeable counselling on the part of the physician, family members are often unable to accept sleepiness as part of the illness.