Lottie is no longer able to function due to cataplexy when she feels many emotions, such as sadness, laughter, and surprise. “Most often I get attacked when I make a joke myself. When I do it, I’m already thinking about the joke in my head. I laugh at it myself, but it doesn’t come out of my mouth. Instead, I slowly fade away and my jaw quivers. I have less sadness Because I laugh more often in a day than I feel sad. By the way, I can often stop an attack in time.
Lottie suffers from narcolepsy and cataplexy. In cataplexy, there is no hormone in my brain that controls the sleep rhythm. As a result, I have no control when I end up in dream sleep. During the day, my mind sometimes thinks I’m in a dream. This is triggered by emotions and so I fall asleep during the day and my brain switches off from my muscles. During this dream I was paralyzed, so I couldn’t move. This is because your mind ensures that you are not actually moving while you are dreaming.
“The scariest thing is that I’m always conscious when I’m in dream sleep. It’s also called sleep paralysis. During the dream I fight to wake up. The first few times I really felt like I was dying. I used to panic a lot, but now I’m used to it.”
Jenelle, 25, suffers from sleep paralysis: ‘I really thought I was dying’
It varies with Lottie in how severe her cataplexy attacks are and how long they last. “When I feel really sad, it’s often unexpected. I try to stop it, but often I know I’m… Outside He goes. How long it takes depends on the situation. If I’m kidding, it can only take twenty seconds, but it can be up to ten minutes. When I feel panicked and anxious, I stay in it longer. It can be likened to a type of sleep paralysis that many people sometimes experience. “I’ve had the experience of falling to the ground and hitting my head: then I get out of it very quickly, because then I feel pain.”
Lottie tries to leave as much space as possible for her daytime naps and allow as few emotions as possible to take over. “When I am relaxed, I suffer less from cataplexy, because then I can maintain better concentration. In addition to taking medications, I always subconsciously suppress my emotions. It bothers me less with friends, because I feel comfortable there. They also know how to deal with it “Yet I’m ashamed of it because it seems crazy. I can hide it well at work, and that’s where I really focus. As a result, many colleagues don’t notice it.”
“Even though I told them at work that I had cataplexy, my colleagues were completely shocked,” says Lottie when talking about a situation where things went completely wrong. “I was sitting in my office chair and talking with one of my colleagues, when I suddenly became weak and almost fell out of my chair. I had agitation during the conversation and was very tired. My colleagues panicked and called 911.
Because I was conscious, I tried to make beeps to tell them not to do it. Panic kept me on the attack for longer. When the paramedics heard that I had narcolepsy with cataplexy, they said I would recover soon.
Living with cataplexy
Although Lottie does not blame people, she finds it incomprehensible YesOne of the hardest things. “My colleagues often don’t understand it, because they don’t see that my jaw is shaking as I resist it. I find it very annoying. Of course my boyfriend understands. He even catches me regularly. I think it’s terrible that he has never experienced ‘real loty’. It’s Only Lottie knows she has cataplexy.
It’s there every day and I always have to keep it in mind: when I’m driving, when I’m tired, when I need to schedule a nap during the day: it’s frustrating and stupid. Sometimes I’m afraid people will call me lazy.
Elaine (30) with narcolepsy and cataplexy: “I take four naps in one day.”
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