Non-Pharmacological Measures for managing narcolepsy
Education is an important component in the management of narcolepsy. Common misconceptions, even among healthcare providers, are that sleep attacks and cataplexy are a result of poor motivation, denial, or avoidance. Participation in support groups that focus on coping skills and identifying community resources may be beneficial to patients for assistance with administrative and medical issues. Patients should be connected to support groups such as the Narcolepsy Canada Foundation or Narcolepsy Network Community. Please refer to the "Patient-Friendly Resources" section for links to useful websites that patients would benefit from.
Other non-pharmacological options include:
Unfortunately, non-pharmacological modalities and lifestyle changes are often insufficient to control the symptoms associated with narcolepsy. Most patients require life-long medication to cope with the debilitating effects of the disorder.
Driving and the risk of motor vehicle accidents in patients with narcolepsy
Patients and family members should be warned about the potential hazards of sleepiness related to driving, operating machinery, and/or working in hazardous settings. Factors that influence decisions about when it is safe for a patient to resume driving depends on the following:
Approximately 40% of individuals with narcolepsy may report sleep-related motor vehicle crashes. Their risk for crashes is estimated to be around 4 times higher than that of control groups. Patients suffering from cataplexy and sleep paralysis are thought to be at the highest risk for motor vehicle accidents, based on the spontaneity of these symptoms. In a study of patients with narcolepsy, 42% reported having experienced cataplexy while driving and 18% reported sleep paralysis while driving.
Driving recommendations for narcoleptic patients from the Canadian Medical Association:
• Patients with a diagnosis of narcolepsy supported by a sleep study, and with uncontrolled cataplexy episodes, daytime sleep attacks, or sleep paralysis during the past 12 months (with or without treatment) should not drive any type of motor vehicle.
• Generally, patients with narcolepsy should not drive commercial vehicles, as long distance driving can be difficult for these patients without experiencing hyper-somnolence. However, individuals with narcolepsy who are able to maintain a regular sleep–wake cycle may be able to drive commercial vehicles during the day, over short routes.
Education is an important component in the management of narcolepsy. Common misconceptions, even among healthcare providers, are that sleep attacks and cataplexy are a result of poor motivation, denial, or avoidance. Participation in support groups that focus on coping skills and identifying community resources may be beneficial to patients for assistance with administrative and medical issues. Patients should be connected to support groups such as the Narcolepsy Canada Foundation or Narcolepsy Network Community. Please refer to the "Patient-Friendly Resources" section for links to useful websites that patients would benefit from.
Other non-pharmacological options include:
- Good sleep habits; avoiding sleep deprivation and/or irregular sleep patterns
- Behavioural modification
- Avoiding certain medications that can cause daytime sleepiness or insomnia
- Smoking cessation, since nicotine worsens narcolepsy/cataplexy
- Decrease or eliminate intake of caffeine and alcohol, particularly in the late afternoon or early evening, due to the detrimental effects on paroxysmal leg movements, which can interfere with the continuity of sleep
- One or two 20-minute naps will often improve sleepiness for 1 – 3 hours
- Good sleep hygiene and a regular, adequate sleep schedule
- Psychosocial support
Unfortunately, non-pharmacological modalities and lifestyle changes are often insufficient to control the symptoms associated with narcolepsy. Most patients require life-long medication to cope with the debilitating effects of the disorder.
Driving and the risk of motor vehicle accidents in patients with narcolepsy
Patients and family members should be warned about the potential hazards of sleepiness related to driving, operating machinery, and/or working in hazardous settings. Factors that influence decisions about when it is safe for a patient to resume driving depends on the following:
- Degree of response to medication
- Variation in the patient’s degree of alertness and sleepiness across the day
- The patient’s compliance with treatment
- Ability to obtain adequate nocturnal sleep
Approximately 40% of individuals with narcolepsy may report sleep-related motor vehicle crashes. Their risk for crashes is estimated to be around 4 times higher than that of control groups. Patients suffering from cataplexy and sleep paralysis are thought to be at the highest risk for motor vehicle accidents, based on the spontaneity of these symptoms. In a study of patients with narcolepsy, 42% reported having experienced cataplexy while driving and 18% reported sleep paralysis while driving.
Driving recommendations for narcoleptic patients from the Canadian Medical Association:
• Patients with a diagnosis of narcolepsy supported by a sleep study, and with uncontrolled cataplexy episodes, daytime sleep attacks, or sleep paralysis during the past 12 months (with or without treatment) should not drive any type of motor vehicle.
• Generally, patients with narcolepsy should not drive commercial vehicles, as long distance driving can be difficult for these patients without experiencing hyper-somnolence. However, individuals with narcolepsy who are able to maintain a regular sleep–wake cycle may be able to drive commercial vehicles during the day, over short routes.
References
1. J Clin Psychiatry 2007;68[suppl 13]:16–192.
2. Canadian Medical Association 2006. CMA Driver's Guide. Determining Medical Fitness to Operate Motor Vehicles 7th edition. Accessed May 22, 2012 from http://www.cma.ca/determining-fitness-to-drive#copyright
Images:
http://bouldersleeptherapy.com/disorders/narcolepsy.php/
autoimmunediseasesa2z.com
www3.unil.ch
1. J Clin Psychiatry 2007;68[suppl 13]:16–192.
2. Canadian Medical Association 2006. CMA Driver's Guide. Determining Medical Fitness to Operate Motor Vehicles 7th edition. Accessed May 22, 2012 from http://www.cma.ca/determining-fitness-to-drive#copyright
Images:
http://bouldersleeptherapy.com/disorders/narcolepsy.php/
autoimmunediseasesa2z.com
www3.unil.ch