How to Cope With Narcolepsy
Narcolepsy is a neurological condition that disrupts sleep patterns. The narcoleptic sleeps poorly at night, and suffers from excessive sleepiness and sleep attacks during the day. Physical events that normally take place during REM, or dreaming, sleep intrude into waking hours. Symptoms like cataplexy, hallucinations, and sleep paralysis are expected in sleep, but annoying to the point of being disabling when they occur while the narcoleptic is awake.
Unfortunately, since narcolepsy is thought to be a genetically linked autoimmune disorder, there is no way to treat its causes directly. Research continues into the exact mechanism of narcolepsy, but until it's better understood treatment is symptomatic, meaning it focuses on alleviating the unpleasant effects of narcolepsy.
The narcoleptic sleeps as much as a normal person, but does not sleep and wake in the usual sequence. The narcoleptic patient must either adjust the sleep/wake pattern to necessary activities, or tailor the activities to the fragmented sleep/wake cycle.
Behavioral changes are recommended as supplements to treatment with prescription drugs. The goal is to minimize the disturbances caused when the narcoleptic suddenly falls asleep or displays REM-like physical symptoms during daily routines. Treatment recommendations vary depending on the narcoleptic's individual experience with the disorder.
These changes in daily routine are intended to produce two effects: first, to improve sleep at night, and second, to lessen the amount of sleeping during the day. You should not count on these alterations to eliminate anomalies in your sleep-wake cycle, but it is possible to achieve some improvement by adhering strictly to the following guidelines.
- Set a sleep schedule. You should keep regularly scheduled sleeping hours (at least eight hours each night) in order to train your body to accept that time period as designated for that particular purpose.
- Avoid stimulants in the evening. To encourage sleep to come, it is recommended that during the several hours prior to lying down, you refrain from using any substance known to interfere with sleep. Doctors have identified the three most commonly used culprits as caffeine, nicotine, and alcohol.
- Do not eat heavy meals. If possible, limit all consumption to more light food (vegetarian cuisine is especially recommended), eating more frequently if necessary.
- Nap after meals on a regular basis. These need not be long siestas: ten to fifteen minutes will suffice.
- Schedule daytime naps to avert unscheduled sleep attacks. As with your nightly hours for sleep, establishing set times for sleep to occur will help your body learn when sleep is acceptable. If you can introduce some predictability into your sleep-wake cycle, you will have a much better chance of leading a productive life because you'll be able to keep commitments on time.
Experts recommend planning three nap times each day, as a regular habit. In general, naps of at least one hour have given better results in terms of increased alertness. This will of course interfere with school or work, and you'll have to communicate your special needs to the school's administrator or your employer's human resources team. A flexible work schedule will help, as opposed to the strict hours imposed by shifts.
Be advised that the Americans with Disabilities Act (ADA) does cover narcolepsy, so your employer will be legally required to make exceptions, within reason, to keep you on the job. Depending on your diagnosis, you may be permitted to mold your work schedule around your nap times. For example, you might be allowed to have regular "off line" periods and keep a folding cot in a storage room.
- Include a period of exercise in your scheduled routine. Narcoleptics are at greater risk for obesity than the average person, and the physical stimulation exercise brings can provide much-needed energy as well as health benefits.
- Try to work in bright light. That simple change can make you noticeably more alert. Just as it's recommended to dim your lights while preparing for bed, to bring on sleep, turning the lights up has the effect of making you more wakeful.
- Reliable scheduling. Remember that your narcolepsy can become more predictable only if you give it a known routine as a foundation. Avoid any job that means you work one schedule during one week and another the next, because that will eliminate any progress you've made.
- There are conflicting recommendations about night shift work. Some narcoleptics are sufficiently wakeful at night to make taking night shift work possible, but in general it's not recommended.
- Make safety your top priority at all times. If you must drive, do not do so in your occupation or when sleepy. The same goes for operating machinery. Make sure the places where you live and work are safe for you during sudden sleep attacks. When everyone you spend time with during the day knows what to expect from you, they can help you come close to living a normal life, but you have to cooperate.
- Remain utterly faithful to your scheduled medication and take it exactly as prescribed. If you fail to do that, you're not only sacrificing the benefit but potentially harming yourself as well.
The drug therapies used to counteract narcolepsy are stimulants (to keep the narcoleptic awake during the day), sodium oxybate (to regulate sleep and control cataplexy), tricyclic antidepressants (for cataplexy), and selective serotonin or norepinephrine reuptake inhibitors (for cataplexy, hypnagogic hallucinations and sleep paralysis).
As with behavior modifications, prescribed medications are intended to make narcolepsy easier to live with rather than to cure it altogether, although some promising studies have shown success in treatment with hypocretins (the neurotransmitters thought to be absent in narcolepsy).
Stimulants to Promote Alertness
- Methylphenidate (Ritalin, Concerta) used to be one of the treatments of choice to combat excessive daytime sleepiness (EDS), but it has been supplanted by newer drugs. Its side effects include agitation, anxiety, rapid heartbeat, and high blood pressure.
- Various amphetamines like dextroamphetamine (Dexedrine, Dextrostat), methamphetamine (Desoxyn), and amphetamine plus dextroamphetamine (Adderall) are no longer used as frequently as they once were, both because of their side effects (similar to those of methylphenidate) and because the newer preparations are more effective.
- The newer, less addictive stimulants modafinil (Provigil) and armodafinil (Nuvigil) are now preferred. They have fewer side effects and less potential for abuse.
- An older stimulant called Cylert was occasionally used in narcolepsy treatment, but it lost its FDA approval in 2005 because it could cause severe liver damage.
Sodium Oxybate (Xyrem)
Also called gamma-hydroxybutyrate (GHB), this drug helps control cataplexy and EDS, and makes it easier to sleep at night. Due to its high abuse potential, popularity on the black market and dangerous side effects, access to sodium oxybate is strictly limited.
Antidepressants to Reduce REM Symptoms
Some antidepressant drugs are given specifically to suppress the occurrence of REM events during waking hours, meaning cataplexy, hypnagogic hallucinations, and sleep paralysis. The first group is the tricyclic antidepressants (TCAs). There are two classes of TCAs, distinguished according to whether they possess sedative or stimulating properties.
- The sedative TCAs include imipramine (Tofranil), clomipramine (Anafranil), and amitriptyline (Elavil). They are used at night, to ease the transition into sleep.
- The stimulating TCAs such as protriptyline (Vivactil) and desipramine (Norpramine) are taken during the day, to help you remain awake.
- Selective serotonin reuptake inhibitors (SSRIs). SSRIs are like TCAs in that they are used to treat cataplexy, hypnagogic hallucinations, and sleep paralysis. They are also used as antidepressants, but are thought to have fewer side effects than the TCAs.
The SSRIs most often prescribed in narcolepsy are fluoxetine (Prozac, Sarafem), sertraline (Zoloft), paroxetine (Paxil), citalopram (Celexa), and venlafaxine (Effexor).
- Selective norepinephrine reuptake inhibitors (SNRIs). The SNRI atomoxetine (Strattera) is used in the same fashion as the TCAs and SSRIs.
- Monoamine oxidase inhibitors (MAOIs) are occasionally prescribed to narcoleptics. The MAOIs used in narcolepsy include selegiline (Eldepryl, Movergan) and phenelzine (Nardil). These antidepressants are given to fight EDS, but their use is often avoided for several reasons: their effectiveness in narcolepsy is dubious, they have unfortunate interactions with other drugs, and they also interact with certain foods, so it's usually simpler and safer to try some other medicine.
All the medications discussed above have restrictions on their use as well as various unpleasant side effects, so it is wise to see how much improvement you can achieve through behavioral modifications before you move on to prescription drugs.