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Thanks to her diagnosis, Susan now knows how to reduce her seizures. “I went through different forms of therapy. There they found out that I had trauma. Thanks to intensive trauma treatment and regular therapy, I currently only have a seizure once a month. But this varies depending on the period: if I experience more tension and stress, that also means more seizures for me.”
No solution
Unfortunately, there are no specific medications that can help Susan relieve her seizures. “With therapy I can reduce my seizures, but I don’t think they will go away. Since it has a psychological cause, it depends a lot on how I process my trauma and stress. So it will probably be better in the future and worse in the next.”
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Unknown
Susan thinks it’s a shame that so few people are aware of her illness. “When I tell people I have PNEA, I always have to explain it. Things are different with epilepsy: everyone knows about it because more people suffer from it. I don’t know anyone who has PNEA and I feel a bit lonely sometimes. There is actually no one who understands what I feel and with whom I can discuss it.”
But what Susan may find even more difficult is that people don’t know what to do when she has a seizure. “When I have a seizure on the street, people often touch me. This is well-intentioned, of course, but it only makes my attack worse. When strangers touch me, it causes me more stress and tension. At the same time, people usually start talking to me loudly and then quickly call the ambulance or the police. The hard part is that I hear everything but I can’t respond. I know there’s no need to call, but I can’t make that clear to others.”
Tips for others
What is the best thing for bystanders to do? “I think the most important thing is to stay calm,” says Susan. “It works well when people calm me down without otherwise touching me. Then I know someone is with me. I don’t need to be put in a certain position or anything like that. What’s important is that I’m not in a dangerous place.”
Unnecessary in the ambulance
If Susan has a seizure outside, she is always taken home by the ambulance or the police. “Who gets called depends on what my offense looks like. Sometimes people think I’m on drugs and call the police. Because the police don’t know what’s going on, I’m often treated roughly. They don’t understand that I’m having a seizure and think I’m defending myself. Unfortunately for me that just makes the attack last longer.”
When Susan was still living in the village, the paramedics recognized her. “At some point my ID was no longer needed. I was unnecessarily in the ambulance every week.” Luckily, Susan was last brought home a month ago. “It’s obviously nice that they keep coming back when I have an attack, but sometimes it’s twice as much. While they’re busy with me, it might be better for them to go somewhere else. But they are called for a reason: bystanders are often frightened by my attacks. Then at least the ambulance or the police will be there to calm them down.”
risk
Even though she could have a seizure at any moment, Susan doesn’t let her condition limit her. “I probably won’t be allowed to drive and avoid busy places in the future, but I have a bike at the moment. Even though I’ve fallen a few times, I don’t want PNEA to make my world small. For example, I also really enjoy riding horses and simply take the risk of an attack for granted.”
Susan says she has never had a seizure with the horses. “I now work with animals part-time and notice that they really calm me down.” Before Susan received the diagnosis, she spent a year at home. “My seizures made it impossible for me to go to secondary school, so I had to find a suitable school. I still had a job in the supermarket, but at some point that was no longer possible. That’s why I spent a lot of time among the horses. I’m in special education now and I know exactly what I want. After graduating from high school, I want to learn how to care for animals so that I can work with animals in the future.”
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