Episode seven of the Waking Up Tired – Narcolepsy Symptoms Explained podcast is about the one symptom that differs between narcolepsy type one and two, cataplexy. Narcolepsy Type 1 is defined by both excessive daytime sleepiness and cataplexy. Narcolepsy Type 2 is characterised by excessive daytime sleepiness but without cataplexy.
Because cataplexy varies so much between people who live with narcolepsy type one, this week we have two guests sharing their lived experience with cataplexy, and their narcolepsy diagnostic journey's.
Guest's sharing their lived experience:
First, we hear from Andrew. Andrew’s journey with narcolepsy began at 18, during a boating holiday on the River Avon in England. His first cataplexy attack came while fishing. The excitement of a bite on the line caused his muscles to give way, and he collapsed on the deck.
From collapsing on a footpath while rescuing a cat, to nearly drowning during a cataplexy attack in shallow water, Andrew's is a story of resilience, love, and finally finding community support and understanding through the Living with Narcolepsy in Australia group.
Elsie’s story brings us into the world of childhood narcolepsy with her experience with cataplexy beginning much earlier, around the age of eight, but it took nearly seven years to get a diagnosis.
Her symptoms started subtly, with facial drooping and knee buckling when she laughed, and were often dismissed as “just being tired” or “having a funny laugh.”
Despite her mum’s early instincts that something wasn’t right, Elsie faced years of confusion after being told by doctor's that there was nothing wrong with her. It wasn’t until she took matters into her own hands at age 15 when she decided to research her symptoms and pushing for a sleep study, that she finally received a diagnosis of narcolepsy type 1.
What is cataplexy?
Cataplexy is a sudden, brief loss of voluntary muscle control, often triggered by strong emotions like laughter, surprise, or anger. While it can manifest as a minor symptom like a drooping jaw, severe episodes can cause a person to collapse to the ground, remaining awake but unable to move or speak for a few minutes.
Potential risks
Injury: Falling during a severe episode can lead to major injuries.
Disruption: Cataplexy can seriously disrupt a person's daily life and force them to avoid social interactions due to the unpredictability of when a cataplexy episode will occur.
Treatment: Prescribing rules in Australia mean antidepressant medications are often a first-line treatment option, even when far more effective medications are available elsewhere, medications that don’t take away the person with narcolepsy’s ability to feel emotions.
Sodium oxybate is an effective treatment for both cataplexy and EDS. Sodium oxybate's mechanism of action (moa) for cataplexy involves slowing down overactive processes in the brain. The moa of sodium oxybate in narcolepsy involves increasing the amount of time the body spends in a deep sleep at night, reducing how much sleepiness occurs during the day. Accessing these medications without them being on the Benefits Scheme (PBS) makes them prohibitively expensive for patients in Australia.
Contact Host Di Spillane:
https://linktr.ee/wakinguptirednarcolepsy
https://wakinguptiredcom.wordpress.com/Living with Narcolepsy in Australia:
https://www.facebook.com/groups/1640576636416817/
If you or someone you know is experiencing symptoms like sudden muscle weakness triggered by emotion, please speak to a medical professional.
#cataplexy #narcolepsy #livedexperience #realvoices #realstories #narcolepsysymptoms
