Ask Nurse Lynn: Sleep Disorders in PWS

Question:

Female, 30 years old, deletion subtype

We have just had two instances in the last 3 weeks where our daughter could not be woken up. The first time she was taken to the hospital via ambulance and didn’t wake up until she was in an emergency room. The second time was just this past Monday while she was at an overnight sleep study. Paramedics were called but she didn’t go to the hospital because she woke up while they were there.

It will be interesting to see what, if anything, they notice (since she was still hooked up to some monitoring equipment- this was during one of the “naps” for a MSLT). At the hospital they didn’t find anything other than low BP (it was under 90) and they basically gave her IV fluids until her BP came up (but she often has a BP in the low 90s).

Is PWSAUSA seeing other individuals with this issue?

Nurse Lynn’s Response:

Sleep and alertness problems are very common in PWS. Research shows that people with PWS often have sleep disorders such as sleep apnea, hypersomnia (extreme sleepiness), and narcolepsy-like episodes that can make someone very hard to wake even when they look like they are simply sleeping.

Excessive daytime sleepiness is one of the most common sleep concerns in PWS and may be related to poor quality sleep, breathing pauses during sleep, or differences in how the brain controls sleep and wake signals. Because breathing problems and low muscle tone are common in PWS, oxygen levels or carbon dioxide levels can change during sleep, which may lead to deep unresponsiveness or “not waking” episodes.

Low blood pressure can also play a role. Dehydration, medications, illness, or autonomic nervous system differences can make blood pressure drop further and cause fainting-like or hard-to-wake events. Another possibility doctors look for is central hypersomnia or narcolepsy-like episodes, which are increasingly recognized in PWS and can cause sudden deep sleep that looks like unconsciousness.

Across clinics and family reports, PWS programs do see similar situations. While it is not the most common presentation, episodes of extreme sleepiness, “passing out,” or difficulty waking are described and usually trigger a careful review of sleep study results, medications, blood pressure, blood sugar, adrenal function, and breathing patterns. Many teams also check for seizures, heart rhythm problems, or CO₂ retention during sleep.

The fact that one event happened during an MSLT is important because that test is designed to look for hypersomnia and narcolepsy patterns. I would watch closely for warning signs such as harder-to-wake sleep, new confusion, morning headaches, behavior changes, snoring, pauses in breathing, medication changes, or dehydration. If another episode happens, it is appropriate to treat it as urgent and share PWS medical alert information with emergency staff, so they understand the special sleep and breathing risks.

Waiting for the sleep study interpretation is exactly the right next step, and you may want to ask specifically about hypersomnia/narcolepsy patterns, oxygen and CO₂ levels, and autonomic blood pressure regulation.