Meet Mary.

Diagnosed with narcolepsy type 1 (narcolepsy with cataplexy).

34 years old | Office manager
Effective XYREM dosage: 9 g per night

Patient stories are based on actual patient experiences. Response to XYREM may be different for each individual.

Presentation

Referred to sleep specialist by neurologist for reports of “feeling tired all the time.”
Clinical interview reveals manifestations of excessive daytime sleepiness (EDS):
- Reports being “very tired” all day, every day.
Epworth Sleepiness Scale (ESS) score = 19.
Clinical interview reveals history of cataplexy:
- Dropping things preceded by feelings of “tingling” and “numbness” in hands.
- Falling for “no reason,” with knee buckling in response to strong emotions.
- Emotional triggers of fear and “passive stress.”
- More than 1 cataplexy episode per day.
Swiss Narcolepsy Scale (SNS) score = -16.
Currently taking a serotonin-norepinephrine reuptake inhibitor (SNRI) for major depressive disorder.

Learn about Mary’s diagnosis >

Patient stories are based on actual patient experiences.

Diagnosis

On initial overnight PSG/MSLT (while taking an SNRI):
- MSLT showed mean sleep latency of 5.9 minutes; no SOREMPs out of 4 nap trials.
On a repeat PSG/MSLT (after SNRI taper):
- PSG ruled out OSA and other primary sleep disorders; nocturnal SOREMP observed.
- MSLT revealed mean sleep latency of 7.7 minutes, SOREMPs on 4 out of 5 nap trials.
- Drooping face and sloped shoulders in response to strong emotions such as happiness, anger, stress.
- Buckling of the legs, occasional full body collapse when laughing or surprised.
- Daily cataplexy episodes.
Swiss Narcolepsy Scale (SNS) score = -42.
Repeated PSG, followed by MSLT, showed:
- Nocturnal SOREMP on PSG.
- Mean sleep latency 4.3 minutes, SOREMPs on 1 of 5 nap trials.
Diagnosis of narcolepsy type 1 established.
SNRI treatment for major depressive disorder reinitiated.

Learn about Mary’s treatment >

MSLT = multiple sleep latency test;
OSA = obstructive sleep apnea;
PSG = polysomnogram;
SOREMP = sleep onset REM period (within 15 min of sleep onset).

Patient stories are based on actual patient experiences.

Treatment

Counseled regarding XYREM therapy.
Enrolled in the XYWAV and XYREM REMS.
Initial dosage:
- 4.5 g per night in 2 equal, divided doses (2.25 g at bedtime, 2.25 g 2.5–4 hours later).
Titrated to effective dosage:
- By increasing total nightly dosage by 1.5 g per night (added 0.75 g at bedtime and 0.75 g 2.5–4 hours later) at weekly intervals.
Effective dosage:
- 9 g per night in 2 equal, divided doses (4.5 g at bedtime and 4.5 g 2.5–4 hours later).