Living well with narcolepsy

Unless detected and appropriately treated, narcolepsy can be detrimental to a person's quality of life. Despite advances in medical research and technology, a cure for narcolepsy remains elusive. However, under proper treatment, most people with narcolepsy live almost normal lives.

What are the symptoms?
There are four main symptoms:

• EXCESSIVE DAYTIME SLEEPINESS — a feeling of continual tiredness, with a tendency to fall asleep without warning at inappropriate times, such as at a work meetings or while driving.
• CATAPLEXY — a sudden loss of voluntary muscle control, triggered usually by intense emotion, such as anger or surprise. Examples of a cataplectic attacks include sagging facial muscles, a nodding head, buckling knees, loss of arm strength, garbled speech as well as an immediate total body collapse. Attacks can last from a few seconds up to 30 minutes.
• SLEEP PARALYSIS — an inability to move or speak when falling asleep or waking up.
• HYPNAGOGIC HALLUCINATIONS — vivid dream-like experiences that occur when falling asleep or waking up. This can be frightening as the person is often partially awake.

Other symptoms that may be experienced include:

• AUTOMATIC BEHAVIOUR — the performance of routine tasks while asleep, and waking up with no memory of it. This can be potentially dangerous if the person is involved in a potentially hazardous activity, such as driving or cooking.
• DISTURBED NIGHTTIME SLEEP — difficulty staying asleep at night. Quite often, the daytime sleepiness is exacerbated by the awakenings during the night.
• ERRATIC MOOD SHIFTS — increased susceptibility to depression due to fatigue and a continual lack of energy.
• DECREASED QUALITY OF LIFE — excessive sleepiness and sleep attacks are generally misunderstood and socially unacceptable. This lack of understanding can detrimentally impact self-esteem, strain personal relationships, and lead to psychological problems.
• POOR PERFORMANCE AND MEMORY — while narcolepsy does not directly affect a person's intelligence or performance, excessive sleepiness during the day can often be enough to negatively impair a person's work, study, concentration, memory and attention span. That is why it is crucial for children with narcolepsy to be identified at the earliest possible age, in order to avoid lowered self-esteem and a pattern of failure.

How is narcolepsy diagnosed?
If you believe you may suffer from the symptoms of narcolepsy, you should see a sleep specialist. If narcolepsy is suspected, you may be required to undergo two different tests at a sleep centre, to determine whether narcolepsy is present, and if so, how severely you have it.

The two tests are as follows:

• DIAGNOSTIC SLEEP STUDY — involves the monitoring of your brain waves, muscle activity, heart rate and eye movements while you sleep. This is accomplished using small electrodes attached to your skin. It is a painless, non-invasive procedure that will require you to stay overnight.
• MULTIPLE SLEEP LATENCY TEST (MSLT) — is conducted the following day to measure your sleep onset and how quickly it takes you to enter dream sleep. The test will require you to take four or five 20-minute naps at two-hour intervals.

At the conclusion of both tests, your sleep patterns will be analysed. Once this is completed, your sleep specialist will inform you whether your symptoms are caused by narcolepsy, or by another disorder that shares some of its characteristics.

Can narcolepsy be treated?
Yes it can! Narcolepsy is treatable, but not yet curable. The symptoms can generally be controlled so that sufferers can lead relatively normal lives. Treatment usually involves three components:

• MEDICATION — through careful discussion with you, your sleep specialist will generally prescribe stimulants to improve alertness, and antidepressants to control cataplexy, hypnagogic hallucinations and sleep paralysis. As both forms of medication can often carry side-effects, your sleep specialist will work closely with you to find a suitable balance between controlling the symptoms and undesirable side effects of medication.
• LIFESTYLE CHANGES — medication is only one element of treatment. Behavioural changes can help revive your lifestyle. We recommend taking the following steps:
  • Maintain a regular schedule for sleeping and waking up;
  • Regular short naps during the day may be helpful for staying alert and awake;
  • Stick to a proper diet and exercise regularly (at least three hours before bedtime); and
  • Abstain from alcohol, nicotine and caffeine in the late afternoon or evening.

• EDUCATION — living with narcolepsy can be difficult without support from family, friends and work colleagues. Without education, excessive tiredness during the day can be perceived as laziness, while cataplexy and dreaming can be mistaken for a psychiatric illness. To minimise misunderstanding, you should:
  • Educate family members — their support will be critical in helping you cope with narcolepsy. Reassure them that your behaviour is neither deliberate nor crazy.
  • Inform friends — their support will be important too. Asking them to read this article may help clear up any misunderstandings or misconceptions.
  • Educate your boss — requesting special consideration in the workplace can help you regain your confidence to be a productive, efficient worker.
  • Join a support group — knowing you aren't the only person with narcolepsy can be comforting. Share your experiences with others and learn how they manage to live normal lives.