Coping With Narcolepsy

Narcolepsy, which is a chronic condition with no definitive cure, can disrupt your daily life. It is characterized by regular attacks of uncontrollable drowsiness, alongside other symptoms such as cataplexy (inability to control muscles for brief periods) and hallucination.

It is associated with psychological issues such as depression and anxiety, and it can seriously hinder quality of life. While management of narcolepsy can be challenging, if you’ve been diagnosed, know that there are many strategies out there that can make coping with it easier.

While taking it on will require sustained effort, with support, medical help, and the right lifestyle adjustments, you can live and thrive with it. 

Emotional

Among the aspects of narcolepsy that make it challenging is that the condition is closely related to and often coexists with other psychiatric disorders. In particular, those who’ve been diagnosed experience higher rates of depression and anxiety.

The exact nature of this association is still being researched—there may be underlying physiological commonalities between these conditions—but it’s partly due to the stress and discomfort associated with narcoleptic symptoms.

Certainly, regular sleep attacks, bouts of cataplexy, and other symptoms are distressing and can lead to a perceived lack of control over daily living. Further, as with other conditions, people with narcolepsy may feel like they’re a burden on others or face stigmatization at home or at work.

These effects are the reason that people with narcolepsy face significantly reduced quality of life, as well as disruptions to their social and professional lives.

However, it’s essential to remember that these feelings are completely natural. Don’t hesitate to seek professional counseling if you’re struggling, or ask your healthcare provider about group therapy sessions. It’s important to remember that you’re not alone as you manage narcolepsy.   

Physical

Alongside medical treatments, adopting lifestyle changes and modifying behaviors are essential aspects of managing narcolepsy. These changes, primarily aimed at improving the quality of sleep, consist of:

• Getting daily exercise: At least 20 minutes of physical activity four to five hours before bedtime every day significantly improves sleep quality. Also, regular exercise has been shown to help with depression and other mood disorders.
• Having a regular sleep schedule: Critical to good-quality sleep is consistency. Try to wake up and go to bed at consistent times every day, even on weekends or days off.
• Taking regular naps: Short naps at consistent times of the day can also reduce the frequency of uncontrollable attacks of drowsiness and other symptoms.
• Avoiding alcohol and caffeine: In different ways, alcoholic beverages and those with caffeine (such as coffee, tea, sodas, etc.) can impact sleep quality. Avoiding these for at least three hours before bedtime can help a great deal.
• Skipping large meals: As with alcohol and caffeine, large meals eaten right before you turn in for the day can also disrupt sleep quality.
• Quitting smoking: Far from the only health benefit of quitting this habit, it can also help with sleep, which, in turn, can minimize narcolepsy symptoms.
• Relaxing before bed: Taking part in relaxing, restful behaviors before bed, such as taking a bath, meditating, listening to soothing music, doing gentle yoga, or trying aromatherapy, can also be helpful. 

Social

As noted, narcolepsy can be a significant burden on daily life, and it’s associated with a number of other psychiatric conditions. Several strategies may be needed to take on the emotional and social fallout of this condition:

• Counseling: Psychiatric evaluation is often a feature of taking on narcolepsy, and individual counseling may be necessary to help cope with the condition and take on any others. It’s worth looking into this option if you feel anxiety, depression, stress, fear, or difficulty functioning as a result of the condition.
• Group therapy: Directed group sessions with others who experience narcolepsy or sleep disorders can also be beneficial. These offer safe spaces for sharing experiences and challenges and offer people with narcolepsy a sense of shared community.
• Online communities: Online resources and social media groups can be sources of information and support for those with narcolepsy. The National Narcolepsy Network and Wake Up Narcolepsy are nonprofit patient advocacy and education organizations. It’s also worth looking into Facebook or other social media sites for narcolepsy support. 

Practical

If you work and have narcolepsy, it’s also important to remember that you have rights. According to the Americans with Disabilities Act, employers are legally required to provide reasonable accommodations for any disability.

Communicate your narcolepsy diagnosis with your manager or supervisor, and talk about what can be done in the work environment. This might mean adjusting your schedule or giving you time to take quick rest breaks during the day.

Another essential consideration when it comes to narcolepsy is driving safety. Because of the propensity for sudden drowsiness and cataplexy due to the condition, people with narcolepsy are at increased risk for automobile accidents.

Rules for driving if you are diagnosed with narcolepsy vary from state to state. You must become familiar with the rules for your state and how they impact your license.

Here are some tips:

• Get your healthcare provider’s opinion on whether driving is safe.
• Drive for short stretches at a time, and take regular breaks.
• Be sure to take a nap before you drive.
• Stay active and engaged when driving. Sing along to your music, or engage in conversation with others.
• Consider carpooling, taking public transport, or ridesharing for your regular commute.