“Those who dream by day are cognizant of many things which escape those who dream only by night” — Edgar Allen Poe

Narcolepsy is a chronic lifelong sleep disorder, and is a disorder of the nervous system, not a mental illness.  Anxiety does not cause narcolepsy.  While its cause is not well understood, it does tend to run in families, and the main symptom is that of overwhelming daytime sleepiness and frequent sudden daytime sleep attacks which may occur during any type of activity at any time of the day.  Contrary to popular belief, narcolepsy is not related to depression, seizure disorders, fainting, or a simple lack of sleep.  Sadly, most patients with narcolepsy go years without being diagnosed, as their condition is often mistaken for depression, epilepsy, or the side effects of medications.

Although not a fatal illness, narcolepsy can be dangerous if episodes occur during driving, operating machinery or similar activities, and can most certainly cause serious disruptions in daily activities.  There is no known cure for narcolepsy. However, medications and lifestyle changes can help manage the symptoms, and can most often be well controlled.  Talking to friends and family will help to cope with this disorder.

Symptoms

The most common symptoms of narcolepsy are:

• Excessive daytime sleepiness – Experienced as periods of extreme drowsiness every three to four hours during the day.  Individuals feel a strong urge to sleep, often followed by a short nap (sleep attack).  These episodes tend to last about 15-20 minutes.  They often occur after eating, but can occur while eating, talking to others, driving, or in other situations.  Most awaken feeling refreshed.
• Hallucinations – Known as ‘hypnagogic hallucinations’, these may occur when falling quickly into REM sleep, as one does when first falling asleep, or upon awakening.  Because people with narcolepsy often find themselves in this semi-awake phase where dreaming begins, they can end up experiencing their dreams as reality, which can be extremely vivid.
• Sleep paralysis – Characterized by an inability to move when first awakening from a sleep attack, or rarely when first becoming drowsy.  During these episodes, which usually last only one to two minutes, individuals may experience a temporary inability to move or speak.
• Sudden loss of muscle tone – Known as cataplexy, can cause a number of physical changes, from slurred speech to complete weakness of muscles, and can last from a few seconds to a few minutes.  Cataplexy is uncontrollable and is often triggered by intense emotions, usually positive ones such as laughter or excitement, but sometimes anger, fear, or surprise.  Some people with narcolepsy experience only one or two episodes of cataplexy a year, while others may have several episodes on an almost daily basis.

The signs and symptoms of narcolepsy can begin anytime up into your 50s, but they most commonly begin between the ages of ten and twenty-five.  Symptoms often are more severe for those who develop them early in life, rather than in adulthood.  In many cases, narcolepsy is undiagnosed and, therefore, often goes untreated.

The goal of treatment is to effectively control symptoms.  Although none of the currently available medications allows people with narcolepsy to consistently maintain a fully normal state of alertness, it can be controlled in most patients with the use of medication and lifestyle adjustments.  Treatment should be individualized based on symptoms and therapeutic response.

There are several classes of prescription medications that have been shown to be helpful in treating the symptoms of narcolepsy.  These include a variety of central nervous system stimulants as well as antidepressant medications.  In addition to medication, lifestyle adjustments are key in effectively managing the symptoms of narcolepsy:

• Stick to a sleep schedule – Go to sleep and wake up at the same time every day, including weekends.
• Take naps – Schedule short naps at regular intervals during the day. Naps of 15-20 minutes two to three times during the day may reduce sleepiness for one to three hours, reduce the number of unplanned, sudden sleep attacks, and help maintain alertness.  These daytime naps are not a replacement for good effective nighttime sleep.
• Eating light meals during the day and avoiding heavy meals before important activities.
• Avoid nicotine and alcohol – Using these substances, especially at night, can worsen your signs and symptoms.
• Get regular exercise – Moderate, regular exercise at least four to five hours before bedtime may help you feel more awake during the day and sleep better at night.
• Informing teachers and supervisors about the condition so as not to be punished for being “lazy” at school or work

Open and ongoing communication between the health care professional, the patient, and the patient’s family is important for the best management of narcolepsy.

Before attempting to implement any sort of specific treatment program an accurate diagnosis should be sought.  Locally, we are extremely fortunate to have several highly qualified board certified sleep specialist physicians, and their highly experienced staff including Registered Polysomnographic Technologists (RPSGT) and Registered Sleep Technologists (RST).  These specialists can incorporate specific assessment tools in order to make a precise diagnosis of narcolepsy.

Santa Barbara Sleep Clinic

                        Jeffrey R. Polito, M.D. and Andrew W. Binder, M.D.

5973 Encina Road, Suite 102
Goleta, CA     93117

Phone: (805) 681-7378

Email: info@sbsleepclinic.com

Santa Barbara Neuroscience Institute at Cottage Health System

            Charles J. Curatalo, M.D.

400 West Pueblo Street
Santa Barbara, CA     93105
Phone: (805) 682-7111

Sansum Medical Clinic Neurology Department

Victor W. Rosenfeld, M.D. and Hsien C. Young, M.D.

317 W Pueblo St
Santa Barbara, CA     93105
Phone: (805) 898-3240

Sleep Disorders Center of Santa Maria

Richard P. Wikholm, M.D.

116 S. Palisade, Suite 206

Santa Maria, CA     93454

Phone:  (805) 347-9132

Premier Diagnostics, Inc. Sleep Disorders Center

George Yu, M.D. and Asghar Arfaei, M.D.

3450 Loma Vista Road

Ventura, CA     93003

Phone: (805) 339-0602

Two of the best nation-wide narcolepsy information and support networks can be contacted at:

Narcolepsy Network, Inc.

Robert L. Cloud, Esq., President

277 Fairfield Road, Suite 310B

Fairfield, NJ 07004

Tel: 973-276-0115

Fax: 973-227-8224

E-mail: narnet@aol.com

National Sleep Foundation

1522 K Street NW, Suite 500

Washington, DC   20005

Tel: 202-347-3471

Fax: 202-347-3472

nsf@sleepfoundation.org

http://www.sleepfoundation.org