Living With Narcolepsy and Parasomnia

Living with a sleep disorder can be a challenging and often isolating experience. Two out of the 5 sleep disorders I have are parasomnia and narcolepsy, both of which can significantly impact a person's daily life.

Living with parasomnias

Parasomnias are a type of sleep disorder that involve abnormal or unwanted behavior during sleep. These behaviors include sleepwalking, talking in your sleep, night terrors, and sleep-related eating disorders. They can be dangerous and disruptive and potentially a risk of injury to myself and those around me.¹

Living with parasomnia has at times been frightening and is frequently exhausting. Often, I wake up feeling confused and disoriented. I am often unable to recall any of the behaviors that were infringing on my quality of sleep. Frequent night terrors often make falling asleep something that I do not look forward to and, instead, I hope to just be too exhausted to dream and experience them.

The night terrors can also end up quite violent, where I find myself physically punching or trying to defend myself. At present, being single, no one else is typically affected. But if I were married or someone else was sharing the bed with me, they risk being disturbed by me screaming and kicking or punching, and I cannot imagine that would be healthy for the person sleeping next to me.

Narcolepsy and parasomnias can be a dangerous combination

Sleepwalking has felt quite dangerous at times, especially since, with my narcolepsy, I can fall asleep anywhere. My most frightening sleepwalking experiences have been when I have fallen asleep while I am out of the house and have no recollection of how I got to where I am or reached back home.

Other types of parasomnias, such as sleep-talking or sleep-eating, are less dangerous but do still occasionally cause stress. As someone who lives alone, sleep-talking is not an issue most of the time. It is only when I have company or am staying 'round at someone else’s house that it becomes more of an issue, as it then impacts other people.

Discovering that I was eating in my sleep

Regarding sleep-eating, I am often only aware that I have been sleep-eating when I find food missing in the morning or crumbs on counters. The frustration with sleep-eating is how it interferes with me trying to lose weight. When I am trying my hardest — already impeded by feeling constantly sleepy and exhausted with narcolepsy and having to fight against the tiredness to get my exercise in — it can be disheartening and incredibly frustrating when I am diligently sticking to my diet only to find that I am going in the kitchen and eating snacks in the night.

I have found the best way to combat this is I try not to keep snacks in the house. For a while I found that to be helpful; then, I woke up one morning to find the refrigerator open and tangerine skins on the counter. I love tangerines, and I knew there was no one else who could have eaten them in the night. This was a frightening revelation, as it meant that I got out of my bed, went to the kitchen, and took out a knife to peel the skin of the tangerine. Handling a sharp object whilst sleeping had so many dangerous ramifications. After this, I decided not to have too many tangerines in the house.

Waking up during a sleep-eating episode

The trickiest part is that I do not always sleepwalk or sleep-eat. I can go months on end without any episodes, so figuring out what my triggers were was important in strategizing how to manage it. 

I found that sleep-eating and sleepwalking were bigger issues when I was on very restrictive diets where my sugar intake was limited. I found that if I didn’t get enough sugar in the day, my body would seek it in the night. Most recently I woke up thinking I had cracked my tooth, but when I awoke, I was in the kitchen in the cupboard where I keep the raisins, and I had opened a packet of dried pasta and was eating it. It was the crunching sound of the pasta breaking that had woken me.

Managing the symptoms of parasomnias

Living with parasomnias and narcolepsy has been a challenging experience, but throughout the years I have found ways to manage the symptoms and improve my quality of life:

1. Seeking professional help

Sometimes just being able to put a name to something can be immensely helpful. Having a doctor tell me that there was a reason why I was sleep-eating, or more recently that there are treatments and things we can try to help eliminate or reduce the night terrors, was awesome. Your healthcare provider is an excellent resource in coming up with solutions to better manage your condition.

2. Avoiding triggers

Learning the things that trigger your symptoms and avoiding them can be helpful.

3. Educating others

Explaining your symptoms and why they are happening to family and friends can reduce some of the stress caused by trying to manage how others will feel or react to you. Preparing them can reduce some stress they might have and reduce yours as well.

4. Giving yourself grace

It can be easy to let the difficulties of having multiple sleep disorders get to you and make you feel disappointed or sad at the things it limits or forces you to adapt. Remembering to not be so hard on yourself can make a big difference in lifting your mood.