Cataplexy is a temporary loss in muscle tone and control, ranging in magnitude from an involuntary drooping of the eyelids to, in more severe cases, a total loss of muscle control. It is caused by emotions, and usually more associated with positive ones such as laughter or excitement, or a pleasant surprise. However, while it is seen less, negative emotions like anger or frustration can also cause cataplexy. Cataplexy can occur by itself, but is most commonly seen as a main symptom of narcolepsy, a condition causing daytime sleepiness and sleep attacks.¹ It is thought the loss of hypocretin neurons in certain areas of the brain associated with wakefulness ar the leading cause in the development of this condition.²

A cataplexy episode can cause a person to collapse, which could be potentially dangerous. A person could have a cataplectic attack in traffic, putting themselves and other drivers in peril. So, it is very important that people who live with cataplexy know how to deal with their condition and plan their lives to avoid these situations.³

In this article, we explore possible behavioural and lifestyle modifications which can be undertaken by people suffering from cataplexy as a way to reduce risks related to cataplectic attacks and improve quality of life. These include a more structured lifestyle, taking into special consideration the importance of regular and high-quality sleep, as well as a consistent exercise routine.^4,5 Cataplexy is often triggered by emotions, so learning to recognise and control emotional triggers is crucial in dealing with the condition.⁶ Also, it is important to create an environment which supports the patient, which can include household safety measures and a network of supporting people educated in the risks and consequences of the disease.

Structured lifestyle

Managing triggers are key to living with cataplexy, and living a structured, predictable lifestyle could help in controlling many of these. By avoiding any stresses that could result from sporadic or unplanned events, you can reduce the risk of cataplectic episodes. Scheduling regular breaks or rest periods throughout the day has also been seen to manage triggers well in individuals with cataplexy, as well as small, 15-minute naps.^4,7 These have been seen in a variety of studies to help with daytime sleepiness and cataplexy in individuals with narcolepsy, and taking the time to plan and schedule such activities into your daily life could be a key factor in helping individuals with cataplexy manage and make the best of their condition. 

Sleep

The importance of sleep is very intertwined with a consistent, scheduled day, and is vital for a person suffering from cataplexy to take seriously. Irregular sleep patterns can make cataplexy symptoms worse, making it more difficult to control emotional triggers and making serious attacks more likely. A focus on sleep hygiene will help improve the benefits of sleep and control cataplexy episodes while awake: 

• Regularity: Focus on going to bed and waking up at the same time every day
• Improved habits: The habits you adopt during the day will impact the quality and quantity of sleep you achieve. Following the 10-3-1 rule (no caffeine 10 hours before bed, no food 3 hours before bed, no fluids 1 hour before bed) will ensure high-quality sleep, decreasing the frequency of cataplexy episodes. However, this rule is subjective and supported by anecdotal evidence, so should not be treated as a rule but general guidelines for improved sleep
• Removing sleep disturbers: Studies have shown substances like alcohol severely affect quality of sleep even in small doses. Avoiding these will dramatically improve your sleep⁸

Controlling your sleep patterns in this way will allow you to be more focused during the day, reducing the likelihood of attacks. It will also make it easier to follow an exercise routine, which has been shown to be important in helping individuals with cataplexy to manage their symptoms.

Physical activity and exercise

Studies have shown people with narcolepsy have overall lower cardiovascular fitness, and higher levels of daytime sleepiness and more frequent cataplexy episodes have been associated with cardiovascular exercise tolerance.⁹ Although this doesn’t prove exercise is the definite cure for the condition, it brings to the light what could be a very easy, accessible and effective treatment tool for people that live with cataplexy.

Engaging in a regular exercise regimen, especially one focused on cardiovascular fitness, could help people manage symptoms and triggers that arise throughout the day. This in turn would help with sleep quality and maintaining a structured lifestyle, creating a sort of positive feedback loop that results in effective symptom control. These benefits could be available for people of all abilities, as even something as simple as going for a daily walk would result in an increase in cardiovascular fitness and the associated benefits.

Recognising and controlling emotional triggers

Cataplexy episodes are commonly caused by specific emotional triggers such as anger but are more commonly associated with positive emotions. So, a person could become suddenly excited or happy, and suffer a cataplectic attack because of it.⁶ It is clear from this how distressing this can be for a patient, as it might discourage them from engaging in activities that make them happy, which could end up causing more harm than good. It is very important for a person suffering from cataplexy to identify their emotional triggers early, and they must try to learn to recognise and manage them when they do occur. Attending behavioural therapy may be useful to learn and develop strategies to manage stress and the individual emotional responses of the patients, which could help them avoid or reduce the frequency of their episodes.¹⁰ As well as the patient understanding their triggers, however, it is also recommended that the people who either live with or are closest to them are also aware and familiar with their condition and their triggers.

Social support structure

It is helpful to educate those closest to you in the intricacies of your condition, as they may unknowingly do something to worsen it, such as cause an emotional trigger that leads to a cataplexy episode. So, you should attempt to foster an environment in which your condition is understood and specific measures are put in place to avoid situations that could cause you harm. While this is important in your home, it may also be useful in places you frequent such as your work. Your co-workers should be aware of your condition and know what to do in the event of an episode. A strong base of social support and understanding is also important in dealing with the mental struggles caused by cataplexy. Knowing you are not alone and that there are people prepared to change their own lives to help you, as in all mental stresses, is vital. 

Safety measures

This article is focused on ways to prevent and reduce the frequency of cataplexy episodes. However, the unfortunate reality of the condition is that while their occurrence can be minimised, they are most likely unavoidable in the long run. So, simple adjustments should be made, especially around the home, to ensure your safety in case of a cataplexy episode. Different measures range from removing sharp objects from exposed places where you might fall on them, or installing non-slip mats and bars in order to avoid falling during the episode. Relating back to the last paragraph, it is also very important that the people around you are aware of the possibility of a cataplectic attack, and are clear on what they should do in that situation.

Summary

The consequences of a cataplectic attack can potentially be very severe, so it should be very important to both those suffering from cataplexy and those who are close with someone who does to understand how these can arise, how to avoid them and how to mitigate them when they occur. Firstly, an organised, structured lifestyle is very important. This can help avoid undue stress and any unexpected emotional triggers that could cause an episode.

Making sleep a priority, both in quality and quantity, is key to managing the symptoms of cataplexy. Falling asleep and waking up at the same time every night will allow your body to fall into its natural rhythm, improving your quality of sleep. Also, a focus on daytime activities that promote quality of sleep, such as controlling alcohol or caffeine consumption or following a consistent exercise programme are key to positive sleep hygiene and quality of sleep. 

It is important for you and those around you to be able to recognise and manage emotional triggers that cause cataplexy. Cognitive behavioural therapy may be useful in working towards this, as well as other methods such as meditation. A focus on building a strong support structure around you is also crucial in helping you work through the difficulties of cataplexy, both physical and mental ones. Cataplexy is a treacherous and unpredictable condition, but it doesn’t mean you shouldn’t attempt to work with it and live your life to the fullest. To that end, you should try to do all you can to control the disease, and learn to adapt your world to live a successful and happy life.