Understanding Hetlioz and the Sleep Disorders it Can Treat

There is no doubt that sleep disorders can significantly impact daily life, if you’ve ever even had one sleepless night you know how terrible one can be left feeling after just a single night of interrupted sleep. For many individuals, sleepless nights are an inescapable way of life. Constant sleep disturbances or insomnia-like symptoms can lead to issues such as; extreme fatigue, cognitive impairment, and reduced quality of life. For individuals with certain rare sleep conditions, standard treatments may not be effective. One medication specifically designed for unique sleep disorders is Hetlioz (tasimelteon), which helps regulate the sleep-wake cycle in individuals with non-24-hour sleep-wake disorder and nighttime sleep disturbances associated with Smith-Magenis Syndrome. In this blog we’ll break down what these are and how Hetlioz can help.

What Is Hetlioz?

Hetlioz is available in capsule form and functions as a melatonin receptor agonist. It works by binding to melatonin receptors in the brain, helping regulate the body’s internal clock, or circadian rhythm. Hetlioz (tasimelteon) helps reset the circadian rhythm, allowing patients to maintain a more consistent sleep-wake cycle and improve overall sleep quality. Unlike over-the-counter melatonin supplements, Hetlioz is an FDA-approved prescription medication for treating specific sleep disorders.

What Sleep Disorders can be Treated by Hetlioz?

• Non-24-Hour Sleep-Wake Disorder (Non-24)
  Non-24-hour sleep-wake disorder is a circadian rhythm disorder that primarily affects blind individuals. It occurs when the body’s internal clock fails to synchronize with the 24-hour day-night cycle, causing progressively shifting sleep times.

• • Causes of Non-24
    Non-24 primarily affects people who are completely blind because they lack the ability to perceive light, which is the primary cue for regulating the body’s circadian rhythm. However, in rare cases, sighted individuals may also develop Non-24 due to underlying neurological or genetic factors.
  • Symptoms of Non-24
    • Difficulty falling asleep or staying asleep
    • Insomnia symptoms that fluctuate over time
    • Excessive daytime sleepiness
    • Fatigue and difficulty concentrating
    • A constantly shifting sleep schedule that becomes increasingly out of sync with societal norms

• Nighttime Sleep Disturbances in Smith-Magenis Syndrome (SMS)
  What Is Smith-Magenis Syndrome? Smith-Magenis Syndrome (SMS) is a rare genetic disorder that affects multiple systems in the body, leading to developmental, cognitive, behavioral, and sleep-related challenges. It is caused by a deletion or mutation of the RAI1 gene on chromosome 17. SMS occurs in approximately 1 in 15,000 to 25,000 individuals.

• Key Features of Smith-Magenis Syndrome
  • Developmental and Cognitive Challenges
    • Delayed speech and language development
    • Intellectual disability, typically in the mild to moderate range
    • Motor delays, such as difficulties with coordination and fine motor skills
• Behavioral Characteristics
  Individuals with SMS often display distinct behavioral traits, including:

• Repetitive self-hugging
• Hand licking and page flipping (turning pages in books repetitively)
• Aggressive outbursts or self-injurious behaviors (e.g., head-banging or biting)
• Hyperactivity and impulsivity
• Strong social personalities, often seeking attention and engagement

3. Sleep Disturbances
   One of the hallmark features of SMS is severe circadian rhythm dysfunction, leading to disrupted sleep. People with SMS often have:

• Inverted melatonin production – their bodies produce melatonin during the day instead of at night
• Frequent nighttime awakenings
• Excessive daytime sleepiness
• Shortened sleep duration

How Effective Is Hetlioz for these conditions?

Clinical trials have shown that Hetlioz can significantly improve nighttime sleep duration and reduce daytime napping in individuals with Non-24 and SMS. By helping to align the body’s circadian rhythm with the external environment, patients often experience more restful sleep and an improved overall quality of life.

What to Expect When Taking Hetlioz

• Dosage: Hetlioz is typically taken once a day before bedtime.
• Time to Effect: It may take several weeks to months for patients to experience the full benefits.
• Side Effects: Common side effects include headache, nightmares, upper respiratory infections, and grogginess.
• Considerations: Hetlioz is not recommended for individuals with normal sleep patterns or those who do not have Non-24 or SMS.

Hetlioz offers a targeted treatment for individuals with Non-24-hour sleep-wake disorder and nighttime sleep disturbances due to Smith-Magenis Syndrome. By improving sleep consistency and duration, this medication helps enhance the overall well-being of those affected by these challenging conditions. If you or a loved one has been diagnosed with one of these disorders, consult with a healthcare provider to determine if Hetlioz is the right treatment option.

For more information on Hetlioz and sleep disorder treatments or for help applying for Hetlioz copay assistance;
Click here to see our dedicated Hetlioz page