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, we have two guests sharing their story for this episode, Elsie and Andrew.
Cataplexy has been the brunt of the joke in Hollywood depictions for years. The reality is, there is nothing funny about having a cataplexy episode.
So, what is cataplexy?
Cataplexy is defined as a loss of muscle tone (atonia) in one or more limbs or group of muscles or even the entire body. The atonia of cataplexy is the opposite of the high muscle tone (hypertonia) of epilepsy. Where a person experiencing an episode of epilepsy will go rigid or repeatedly flex certain muscles, the muscles of a person with narcolepsy having a cataplexy episode (or an ‘attack’) will go limp.
They may slur their speech; drop something they were holding or collapse to the floor. They might be unable to communicate or could look like they are unconscious. However, they are conscious and fully aware of what is going on, but may be unable to respond until the episode passes.
Cataplexy affects approximately 75% of people who live with narcolepsy. The onset of a cataplexy episode is triggered as a response to experiencing a strong emotion such as laughter, surprise, joy, a scare, or love.
While excessive daytime sleepiness (EDS) can be severely debilitating and can wreak all kinds of havoc in a person who lives with narcolepsy’s life, cataplexy is most often the cause of accidents. Broken glass or phones when they drop things spontaneously, fractures, broken bones, and concussions are common results of stumbling or collapsing to the ground.
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.
Australia’s treatment landscape is considered behind other developed nations, which can leave patients with suboptimal options or significant out-of-pocket costs. Accessing these medications without them being on the Benefits Scheme (PBS) makes them prohibitively expensive for patients. The inequality to accessing first line treatment options isn’t just overseas, it also depends on which Australian state or territory you live in and who your treating specialist is. It is unfathomable how everyone who is living with narcolepsy in Australia is treated, surely, we deserve to at least have health equity in our own country?
If you or someone you know is experiencing symptoms like sudden muscle weakness triggered by emotion, please speak to a medical professional.
