"Our dreamer, where are you, what are you thinking about?" Sandra heard this question far too often throughout her childhood, adolescence, and even into adulthood. But Sandra wasn't dreaming. "Even as a child, I felt different. I had trouble concentrating and often had memory problems," Sandra explains. In retrospect, these were signs of her epilepsy.
shattered apprenticeship dream
Sandra was a good student in primary school and successfully transitioned to the Gymnasium (academic high school). Unfortunately, due to her condition—which went undetected at the time—her memory repeatedly failed her, forcing her to return to the lower secondary school. After lower secondary school, she was accepted into the preparatory course at the School of Applied Arts, but was unable to complete it—despite her great creativity. She simply couldn't retain the vast amounts of material. "I was already having my first seizures back then, though not as severe as later on. But even my mother didn't believe me—she was overwhelmed by my condition. Besides, in the 1980s, not much was known about epilepsy. She thought I had a mental illness."
Sandra dropped out of the preparatory course, met her future husband, and became a mother for the first time at 23. At 25, she had her suspected epilepsy medically evaluated for the first time – the result was inconclusive. "I briefly took medication for epilepsy, but it gave me a severe rash. Back in the eighties, medications were much stronger and not as individually adjustable as they are today. I resisted the medication and refused to acknowledge the illness. I repressed it for a long time."
Fulfilled career dream
Sandra has another child. Shortly afterward, at 27, she begins a second training program. Her career goal: kindergarten teacher. "Luckily, back then it was still possible to become a kindergarten teacher without a university degree. I completed the training – with two small children at home. And despite my undiagnosed epilepsy." After her training, she works full-time while her husband stays home to care for the children and manage the household. The marriage is anything but happy; her husband is physically and emotionally abusive. Nevertheless, the couple stays together for 23 years.
Despite facing multiple challenges, Sandra worked as a kindergarten teacher for 20 years: “For many years, I worked full-time, was always the primary teacher, and had numerous parent-teacher conferences and meetings. When I had a free afternoon, I often went home and slept for at least two hours. Or I would have an epileptic seizure without even realizing it. I was always completely exhausted after the seizures.” What motivates Sandra and keeps her going is her love for her social and creative profession. “I was already taking the children into the woods to play when nobody else was doing that. And I could spend hours painting or crafting with them. That was my escape and my salvation,” she says, looking back.
Increased seizures
Towards the end of the 2000s, Sandra's symptoms of epilepsy became more pronounced. The episodes, which she found difficult to describe, became more frequent. "Most epileptic seizures began with severe déjà vu. My whole body felt as if I had already experienced a situation before. The seizures were accompanied by nausea rising from my abdomen. My gaze would become fixed, I couldn't speak, and I collapsed. It's hard to say how long this state lasted—perhaps two or three minutes. For me, it felt like an eternity, because the fear of death was part of the seizures. This isn't surprising, since a seizure also affects the amygdala, a region of the brain that regulates the perception of fear." Sandra also sometimes collapsed outside the home. "Once, I barely managed to stay upright in front of the post office. From an outsider's perspective, a seizure can look terrifying." "During the severe seizures, I had to breathe deeply and heavily, which caused me to make inhuman sounds," she explains. Sandra is disappointed that hardly anyone offered her help in public during or after a seizure. "People just stare, but do nothing," she says resignedly.
Relieving certainty
During this time, Sandra talked to her cousin about her condition. Her cousin took her seriously and encouraged her to seek medical evaluation. In 2012, after a positive initial consultation, Sandra was admitted to the Epilepsy Clinic in Zurich for several days of epilepsy monitoring. Afterwards, it was clear: Sandra had epilepsy. The doctors told her that she had a responsibility for the children in her care and therefore could no longer work as a kindergarten teacher. "At first, it felt like the ground had been pulled out from under me. After all, I loved my job. But then I was relieved. Now I had an explanation for my condition and, moreover, medical permission to stop functioning."
Hard times
Despite the reassuring diagnosis, things don't go smoothly for Sandra in the coming years: She reduces her hours as a kindergarten teacher and retrains to teach German as a Second Language (GSL) to children with a migration background. Sandra takes medication for epilepsy, but still has regular seizures.
Between 2017 and 2019, Sandra was repeatedly signed off sick for extended periods. So frequently, in fact, that her daily allowance insurance stopped paying out. "While I could barely work anymore, I was prescribed more and more anti-epileptic drugs. I was taking up to 600 mg a day. At the same time, I was plagued by existential anxieties and bouts of depression," she recounts, tears welling up in her eyes. The emotional strain and stress were so intense that Sandra experienced her first so-called dissociative epileptic seizure during this period. She barely managed to call an ambulance herself. In the ambulance, her arms and legs cramped up, leaving her unable to move. After such seizures recurred, Sandra admitted herself to a specialized psychiatric clinic in Arlesheim in January 2019. "My condition was so dire that I contemplated suicide," she recalls. The stay proved beneficial for Sandra. She then finds the strength to "emigrate" to Spain in the autumn of 2019 to be with her two children. Unfortunately, such serious conflicts arise with the children that Sandra returns to Switzerland disillusioned after nine months.
Constant triggers
The conflict with her children brought old traumas to the surface, burdening Sandra so severely that, starting in the summer of 2020, she suffered almost daily dissociative epileptic seizures for about two years. As a result, she was unable to take up a new job she had applied for. "The triggers for the seizures were—from an outsider's perspective—tiny. It could happen that I had a seizure while unpacking things from a moving box from when I emigrated. If an olive oil bottle had a Spanish label. Or if someone on the street was speaking Spanish," she explains.
Nightmare over
In 2021, Sandra began trauma therapy to process the violence she suffered at the hands of her father and husband, as well as other traumatic experiences. She was finally granted disability benefits, which lifted a huge weight off her shoulders. Sandra gradually felt better, and with that, her epileptic seizures became less frequent. When her son returned to Switzerland, they reconnected. He—who himself has ADHD and suffers from neuropathic pain following a stroke—recommended cannabis therapy to her. Sandra's login and epilepsy login agreed and wrote her a prescription: "Currently, I take four drops of a THC-CBD oil in the morning. And before going to sleep, I smoke a joint. This relaxes me, and unlike before, I can sleep through the night. The anti-epileptic drugs made me sleep more lightly, which meant I was often tired and stressed. It was a vicious cycle that triggered many seizures. Since I started smoking cannabis before bed, I've been seizure-free." At the same time, Sandra is able to reduce the dosage of her epilepsy medication to currently 300 mg per day. Her goal is to eventually be able to manage entirely without anti-epileptic drugs.
Sandra has also re-established contact with her daughter, who still lives in Spain. "I'm so happy she's pregnant. That's brought us closer again." Things seem to be steadily improving for Sandra. She's even received approval from her health insurance company to cover the cost of her cannabis medication. "I can only recommend that anyone with epilepsy get tested to see if cannabis therapy would be beneficial for them. If I had started earlier, it would have saved me many epileptic seizures and a lot of suffering."
