My husband was asked to play with some local musicians the other night. After one of the sets, the guitar player sat down and introduced himself. “I have narcolepsy”, he declared. Since my curiosity often leads my mouth before I’ve had the chance to think, I immediately asked if that meant that he could fall over at any moment. We had a long talk and I was compelled to explain to myself and now to others the fundamentals of this disease and its partner, cataplexy.
Narcolepsy is a sleep disorder. It is believed that it is an autoimmune disorder, but the precise cause is not completely understood. A protein called hypocretin is produced in lesser amounts in some patients, but not in all. There are certain genes that are associated with the disease and it tends to run in families.
The first signs appear anywhere between puberty and the early thirties. Symptoms include increased excessive daytime drowsiness with the need for a quick nap. People with narcolepsy are able to fall asleep with ease during the day and the naps usually only last for about 15-30 minutes.
Another symptom is the ability to “hallucinate” in the period between being asleep and being awake. Many times, some people experience a type of paralysis when falling asleep and/or when first waking up.
A physician will first use tests to rule out other causes for the periods of fatigue and may order blood work, ECG, EEG and a sleep study. There is no cure. The goal is to reduce symptoms and learn to make lifestyle changes.
Cataplexy is a loss of muscle control while awake that causes temporary paralysis. This is the condition where the head may fall forward and the body is unable to support itself so that one falls. Cataplexy can be severe to the point where paralysis lasts for longer than a few minutes or it can be as minor as a feeling of weakness. It is usually brought on by strong emotions like laughter.
Medications may be prescribed to help prevent sleepiness. Those include stimulants such as armodafinil (Nuvigil), dextroamphetamine (Desedrine, DextroStat or methylphenidate (Ritalin). Antidepressants like Serotonin Norepinephrine Reuptake Inhibitors (SNRI), Selective Serotonin Reuptake Inhibitors (SSRI) or Tricyclic Antidepressants (TCA) can help reduce sleep paralysis and hallucinations. Sodium oxybate (GHB, Xyrem) is sometimes also prescribed for excessive daytime sleepiness.
Narcolepsy is a chronic condition that lasts a lifetime. It may not include cataplexy, but cataplexy is usually accompanied by narcolepsy. It can be dangerous if not managed. Most states require driving restrictions and episodes may prevent working in jobs that involve operating certain types of machinery.
On a final note, the occurrence of narcolepsy varies in different countries. In the US, approximately 1 in every 2,000 people is affected. It is found in greater numbers in Japan and is rarely found in Israel. Research continues to try to pinpoint the cause, study the epidemiology of the disease and find a cure.
My new friend is currently on disability as it has affected his ability to work on a regular basis and can be unexpected and injurious. He was not offended by my naïve questions and, in the end, I learned a great deal more about this disease.