Understanding Narcolepsy

The below excerpt from an article written by Psychologist John Cline Ph.D. for “Psychology Today” describes the disease particularly well. This first paragraph; written from the point of view of someone with undiagnosed Narcolepsy, may help any of you with questions as to what is Narcolepsy…?

“Nancy was sleeping again. Her husband and children were ready to go out but she was not. This has been the story of her life. In school she was always falling asleep. Then at night, she had trouble staying asleep. She would sometimes awaken unable to move. That was scary enough, but at times these episodes were even more frightening as she was aware of an apparent presence in her room and sometimes even saw people when nobody was there. They were always just part of a dream. Most upsetting were the times she would get startled, or was laughing at a very funny joke or got very angry — and she would just fall to the ground — unable to move for several minutes. This had gone on for most of her life and had caused great difficulty with teachers, friends and family who couldn’t understand why she was like this. In fact, it was only a few years ago that she finally got a diagnosis that explained her problem. Nancy has been suffering her entire life with the sleep disorder known as narcolepsy.

Cline then goes on to describe Narcolepsy as a Neurological Disorder that:

…is characterized by excessive daytime sleepiness, cataplexy, hypnagogic hallucinations and sleep paralysis. Narcolepsy is associated with the loss of hypothalamic neurons that contain the neuropeptide hypocretin. Narcolepsy is one of a group of sleep disorders known as hypersomnias. These disorders are characterized by excessive daytime sleepiness that does not occur because of sleep deprivation, other sleep disorders (such as sleep apnea or insomnia) or because the person’s 24 hour day/night rhythm is disturbed. Narcolepsy may also occur secondary to other medical conditions such as head trauma, stroke, Multiple Sclerosis, brain tumors, neurodegenerative disorders and central nervous system infections.

Taken from Dr. Cline’s article are the following descriptions of the main symptoms of Narcolepsy:

…abnormal regulation of REM sleep with the inappropriate intrusion of REM sleep physiology (for example, muscle paralysis) into daytime wakefulness. Cataplexy is the sudden muscle weakness that is induced by strong emotional states such as laughter or anger. It can vary in intensity and range from mild (with the head dropping or the knees buckling) to severe (with the person falling to the ground unable to move). Hypnagogic hallucinations result from REM sleep occurring abnormally early in the sleep cycle (short REM latency) with dreaming at sleep onset. These hallucinations are often vivid and may involve experiences such as being in a fire or flying, and often have strong feelings of fear associated with them. Sleep paralysis is the loss of muscle tone when waking up or falling asleep and can be a fearful experience. At times patients with narcolepsy may have automatic behaviors. These occur when the person continues engaging in whatever behavior he or she was doing, but in a semiautomatic way without conscious awareness. The person may find, for example, that she is suddenly in another room holding a mug of coffee with no memory of getting the coffee or walking to the new location. Automatic behavior episodes during periods of reduced arousal can last as long as 30 minutes with semi-purposeful behavior and amnesia for the interval. This is sometimes described as a “blackout” and can even appear like a seizure. The daytime sleepiness seen in narcolepsy is different from mere fatigue and involves frequently falling asleep during the day. With normal fatigue, rest may be helpful, but for a person suffering from narcolepsy rest is not enough and there is a strong need for sleep in the form of naps which may be brief or lengthy. The degree of sleepiness can vary greatly in severity. Excessive daytime sleepiness is frequently very disruptive to the person’s life as it interferes with the ability to function during the day and to hold down a job, go to school, or take care of children. The person has repeated episodes of falling asleep or taking naps. After a brief nap or sleep attack the person will often feel refreshed but after a short time will begin to experience sleepiness again. Sleepiness is most likely to occur during boring tasks or when sedentary such as watching TV. These symptoms are chronic and last for years. In the modern world this is an extremely difficult problem as our fast-paced, demanding, society generally requires a high degree of alertness during the day.

The article then gives the advice to contact your primary care physician (GP) if you or a loved one are experiencing the symptoms outlined above. Dr. Cline writes that treatment to try and combat the disrupted night time sleep and/or the daytime sleepiness will more than likely be tried initially. This is a step where other causes of fatigue and insomnia are ruled out through trial and error. Narcolepsy is still seen as a rare disorder, and as such medical professionals will automatically have to rule out more common conditions first. It is important though, that if you or a loved one do not experience reprieve from your symptoms, that you keep attending your GP informing them of such.

Diagnosis of Narcolepsy will involve a careful review of the symptom history as well as an over-night sleep study followed by a daytime nap study. These would be conducted in a Sleep Clinic by a specialised team. Referral for Sleep Studies is needed from your GP before one can be arranged. Once Narcolepsy is diagnosed treatment usually always involves medication to alleviate symptoms. These medications, teamed with behavioral techniques like planned naps, can help many people with Narcolepsy manage their Narcolepsy Symptoms.

Please note that these treatment methods (medications) are seen as ONE route to alleviating symptoms, but they do not always work for everyone. There are other methods that are suggested by people within the Narcolepsy community. We will endeavor to provide information on these various methods in other sections of this website.

If after reading this article, you feel that you or a loved one may have Narcolepsy and would like to ask any further questions; please feel free to contact us via our website: narcolepsyirelandcharity@gmail.com or alternatively you can like and follow our Facebook page Narcolepsy Ireland Charity where a member of our charity team would be more than happy to help you as much as possible.

Cristín McNeill