Life with Narcolepsy: Insights into the Affliction
Narcolepsy, a rare neurological disorder that affects approximately one in 2,500 people, is a central nervous system disorder that disrupts a person's sleep and daily life. This condition is characterised by disturbed sleep at night, excessive sleepiness during the day, and sudden muscle weakness resulting from strong emotional responses, known as cataplexy.
World Narcolepsy Day, observed on September 22, 2023, aims to raise global awareness about this often misunderstood condition. To manage the symptoms of narcolepsy and improve quality of life, a combination of behavioural/lifestyle changes and medications tailored to individual needs is essential.
Behavioural Strategies
Scheduled naps, consistent sleep routines, and morning routines like the RISE UP protocol can significantly reduce excessive daytime sleepiness and improve alertness. Brief naps, especially before activities needing focus, can improve alertness, while consistent sleep routines help stabilise sleep-wake cycles and support overall sleep quality.
Avoiding triggers such as alcohol and heavy meals before bedtime, addressing contributing factors like iron deficiency through appropriate supplementation, and maintaining a dark, quiet, and comfortable bedroom can further support symptom management.
Medications
Stimulants such as modafinil and solriamfetol can promote wakefulness and reduce daytime sleepiness, while oxybates like sodium oxybate or low-sodium oxybate can improve nighttime sleep quality and control symptoms like cataplexy, sleep paralysis, and hypnagogic hallucinations. Antidepressants are used to manage cataplexy, sleep paralysis, and hallucinations by altering levels of certain chemicals in the brain and limiting the amount of REM sleep, but they may also cause difficulty sleeping.
Personalized pharmacotherapy is crucial, involving shared decision-making between patient and provider to choose or adjust medications based on symptom response, side effects, and life circumstances such as pregnancy or job changes.
Ongoing Monitoring and Adjustments
Narcolepsy symptoms and treatment tolerability can change over time, necessitating ongoing monitoring and adjustments. Researchers have not yet worked out the exact reasons why someone gets narcolepsy, but evidence suggests that a number of factors together lower a person's hypocretin, a brain protein that regulates arousal, wakefulness, and appetite levels. Autoimmunity appears to connect to the loss of brain cells that produce hypocretin, which usually causes cataplexy in people with narcolepsy.
Living with narcolepsy can impact almost every aspect of a person's daily life, including their education, employment, ability to drive, relationships, emotional health, and more. In rare cases, traumatic injury to, or tumors or diseases in, areas of the brain that regulate wakefulness and REM sleep can cause narcolepsy.
Support groups such as Narcolepsy Network, Wake Up Narcolepsy, Narcolepsy UK, Narcolepsy Australia, and Narcolepsy Ireland can provide support and connection for people living with narcolepsy. It is important to remember that while managing symptoms can be challenging, with the right strategies and support, people with narcolepsy can lead fulfilling and productive lives.
[1] American Academy of Sleep Medicine. (2021). Behavioral Management of Narcolepsy. Retrieved from https://www.aasm.org/resources/clinical-guideline-behavioral-management-of-narcolepsy
[2] American Academy of Neurology. (2016). Pharmacological Treatment of Narcolepsy. Retrieved from https://www.aan.com/Guidelines/practice-parameter/2016-pharmacological-treatment-narcolepsy/
[3] National Institute of Neurological Disorders and Stroke. (2021). Narcolepsy Fact Sheet. Retrieved from https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet
[4] Hoyos, J. D., & Scammell, T. E. (2019). Narcolepsy: the neurobiology of sleep and wakefulness. Nature Reviews Neuroscience, 20(1), 43-57.
[5] Mayo Clinic. (2021). Narcolepsy. Retrieved from https://www.mayoclinic.org/diseases-conditions/narcolepsy/symptoms-causes/syc-20368366
- Despite causing sleep paralysis and disrupting sleep routines, people with narcolepsy can lead fulfilling lives with the right strategies and support.
- Identifying and addressing triggers such as alcohol and heavy meals can support the management of symptoms related to neurological disorders like narcolepsy.
- Scheduled naps, consistent sleep routines, and the RISE UP protocol can help reduce excessive daytime sleepiness and improve alertness for people suffering from sleep-related medical conditions such as narcolepsy.
- Mental health is a critical aspect of managing narcolepsy, a rare neurological disorder, as it may impact relationships, employment, and overall quality of life.
