Doctor placing electrodes on patient's head for a polysomnography (sleep study)
Diagnosis

HOW IS NARCOLEPSY DIAGNOSED?

Ideally, diagnosis typically relies on a 24-hour sleep study that includes a nighttime portion (polysomnogram) and daytime nap portion (multiple sleep latency test). The diagnosis is mainly based on how quickly and frequently one’s brain enters rapid eye movement sleep (REM)/dream sleep during these tests.

Diagnosis in Kenya

Access to neurologists in Kenya is limited, as most people lack health insurance, and many neurologists work in private institutions. This results in long waits and limited availability, as the few neurologists available also manage other conditions. For an initial evaluation, consulting a psychiatrist at Level 4 or 5 hospitals is often the first step. However, only a small number of neurologists specialize in sleep-related disorders.

Due to the high cost or absence of sleep clinics in many regions, most narcolepsy diagnoses are made through EEG tests. This highlights the critical need for affordable sleep care facilities and better access to specialists. Prior to diagnosis, it is not uncommon for people to be misdiagnosed with other sleep disorders, depression, psychiatric conditions, ADHD and even epilepsy.

There are two forms of narcolepsy:

type 1 narcolepsy with cataplexy, and type 2 narcolepsy without cataplexy. Recent research suggests that type 1 narcolepsy with cataplexy is caused by a lack of hypocretin (also called orexin), a key neurotransmitter that helps sustain alertness and regulate the sleepwake cycle. Less is known about type 2 narcolepsy without cataplexy.

When visiting your doctor for possible narcolepsy, you’ll likely be asked for a detailed sleep history. You may also complete tools like the Epworth Sleepiness Scale, which uses short questions to measure your level of daytime sleepiness. Based on your answers, you’ll rate how likely you are to fall asleep in specific scenarios.

If narcolepsy is suspected, your doctor will likely recommend sleep studies. These typically include a Polysomnography (PSG)—an overnight test at a sleep lab to monitor your sleep patterns—and the Multiple Sleep Latency Test (MSLT) conducted the next day. The MSLT evaluates how quickly you fall asleep and whether you enter REM sleep during daytime naps, which are key indicators of narcolepsy.

A comprehensive overnight sleep study that monitors brain activity, eye movements, heart rate, breathing, and muscle activity. PSG is used to rule out other sleep disorders, such as sleep apnea, before confirming narcolepsy.

Conducted the day after PSG, this test measures how quickly a person falls asleep in a quiet environment during multiple daytime naps. Narcolepsy is indicated if the patient falls asleep quickly and enters REM sleep during naps.

These may include blood tests or cerebrospinal fluid (CSF) analysis to measure hypocretin levels, a biomarker associated with narcolepsy type 1. Imaging tests may also be used to rule out other neurological conditions.

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