A Mental Health Counselor Discusses His Life with Narcolepsy

Editor’s Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak with patients about opportunities related to their diagnosed conditions. These opportunities can include activities such as sharing stories with other patients or health professionals about their diagnosis journey or recording video testimonials. To learn more about how to get involved with an opportunity for narcolepsy patients, click here.

Chris was tired. Not just tired, actually, but fatigued. Normally, he loved working with his clients as a mental health counselor—and in his spare time, Chris enjoyed hiking, staying active, and being out in nature. But his fatigue prevented him from living his life to the fullest. He was often falling asleep in situations where he shouldn’t and struggled to keep up with his favorite activities. According to a story in the Sun City West Independent, Chris pursued medical intervention and was soon diagnosed with narcolepsy. 

Although he jumped into treatment and worked with a sleep specialist, Chris still experienced excessive daytime sleepiness and cataplexy, a unique narcolepsy symptom characterized by sudden uncontrollable muscle weakness or paralysis. Eventually Chris switched doctors to look for better care options. His new physician recommended WAKIX (pitolisant). This once-daily tablet increases histamine levels in the brain, which improves brain activity in areas related to wakefulness. Learn more about WAKIX

For Chris, WAKIX was effective in reducing his cataplexy and excessive daytime sleepiness. That being said, he recommends that each person speaks with their physician to determine the optimal care plan for themselves. Outside of this, Chris also suggests using sun lamps for waking, taking the time to nap, using blackout curtains, and getting involved in support groups. Through these groups, people can learn more about narcolepsy, speak with others who are going through the same thing, and discuss management, advice, and other ideas. 

A Brief Overview of Narcolepsy

Narcolepsy is a chronic neurological disorder that affects the brain’s ability to regulate the sleep-wake cycle. It may cause people to fall asleep quickly for a few moments, and results in excessive daytime sleepiness that can be debilitating. Many people with narcolepsy also experience cataplexy, though not everyone does. Cataplexy is generally triggered by strong emotions, such as fear, anger, or excitement, or by laughter. In a cataplectic attack, someone is awake but cannot move. Outside of cataplexy and excessive daytime sleepiness, narcolepsy can cause hallucinations and sleep paralysis. Treatment options include sodium oxybate, gamma-hydroxybutyrate, Modafinil, Xyrem, and other medications such as WAKIX.

Editor’s Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak with patients about opportunities related to their diagnosed conditions. These opportunities can include activities such as sharing stories with other patients or health professionals about their diagnosis journey or recording video testimonials. To learn more about how to get involved with an opportunity for narcolepsy patients, click here.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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