Living with Cataplexy: Coping with Narcolepsy Symptoms and Misunderstanding

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Cataplexy

Lotte can no longer function due to cataplexy when she experiences too many emotions, such as sadness, laughter and surprise. “I most often have an attack when I make a joke myself. When I do that, I’ve already thought of the joke in my head. I laugh about it myself, but it doesn’t come out of my mouth. Instead, I slowly fade away and my jaw trembles. I have less of this with sadness, because I laugh much more often in a day than I am sad. By the way, I can often stop an attack in time.

There is a hormone missing in my brain that controls sleep rhythm. As a result, I have no control when I end up in a dream sleep. During the day, my brain sometimes thinks I’m in a dream sleep. That is triggered by emotions and so I just fall asleep during the day and my brain switches off my muscles. During that dream I am paralyzed, so I can’t move. This is because your brain ensures that you do not actually move during your dream,” says Lotte.

“The scariest thing is that I am sometimes conscious when I am in a dream sleep. Also called sleep paralysis. I fight during the dream to wake up. The first few times it really felt like I was dying. I panicked a lot, but now I’m used to it.”

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Control

It varies with Lotte how intense the cataplexy attacks are and how long she lingers in them. “When I experience intense sadness, it is often unexpected. I try to stop it, but I often know that I out go. How long that takes depends on the situation. If I’m joking it could only be twenty seconds, but it could be up to ten minutes. When I’m panicky and anxious, I stay in it longer. It can be compared to a kind of sleep paralysis, which several people sometimes experience. I have had the experience of falling on the ground and hitting my head: then I get out of it very quickly, because then I experience pain.”

Lotte tries to leave as much room as possible for her naps during the day and to allow as few emotions as possible to prevail. “When I am rested, I suffer less from cataplexy, because I can then maintain better focus. In addition to taking medication, I always subconsciously hold back my emotions. It bothers me less with friends, because then I’m at ease. They also know how to deal with it. Yet I’m ashamed of it because it looks crazy. I can disguise it well at work, that’s where I really focus. As a result, many colleagues do not notice it.”

Work

“Although I told them at work that I had cataplexy, colleagues were very shocked,” says Lotte when she talks about a situation in which things went completely wrong. “I was sitting in my office chair and talking to a colleague, when I suddenly became weak and almost fell off my chair. I had an emotion during the conversation and was very tired. My colleagues panicked and called 911.

Because I was conscious, I tried to make beeping noises to tell them not to do that. The panic kept me on the attack even longer. When the paramedics heard that I had narcolepsy with cataplexy, they said I would soon recover.”

Living with cataplexy

Although Lotte does not blame people, she finds misunderstanding one of the most difficult things. “My colleagues often don’t understand it, because they don’t see that my jaw is shaking and I’m fighting it. I find that very irritating. Of course my friend understands. He even catches me regularly. I think it’s terrible that he has never experienced the ‘real Lotte’. He only knows Lotte with cataplexy.

It’s there every day and I always have to take it into account: when I’m driving, when I get tired and when I need to schedule naps during the day: it feels frustrating and stupid. Sometimes I’m afraid people will label me as lazy.”

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2023-12-14 14:21:39
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