Living with Epilepsy: A Young Woman's Decade-Long Journey with Seizures
Letizia Mollinedo, a 26-year-old woman, has spent the last ten years adapting to life with epilepsy, a chronic neurological condition that affects approximately one in every 100 people. Her story sheds light on the realities of living with seizures, from diagnosis to daily management and the challenges of traveling with the condition.
The Diagnosis and Early Experiences
Letizia was 17 years old when she collapsed on the street while heading to her doctor's office. A month later, she received a diagnosis of epilepsy, a condition characterized by unexpected electrical surges in the brain that trigger seizures, with symptoms varying widely among individuals. At the time, she was living in Tunisia, just a week before departing for university, when she experienced her first seizure.
She recalled, "It's quite common for people to faint from the heat. My mum told me that people tried to pour water down my back, thinking I had heat stroke. What I remember is waking up, my neck soaked, in the back of an ambulance." Instead of spending her final week saying farewell to friends and family, Letizia underwent numerous tests but left before receiving a diagnosis. About a month later, she had a second seizure at her university dorm's lunch table, leading to her official diagnosis.
Managing Seizures and Side Effects
Over the next decade, Letizia worked to find the right combination of medications and self-care strategies to ensure her safety. She explained, "I spent the next decade finding the perfect cocktail of medications and self-care that would ensure I would be safe. It's not a straight upwards trajectory. I've reduced my number of seizures, but now I have terrible side effects. It's not as easy as it seems."
Letizia experiences tonic clonic seizures, which cause the body to stiffen, convulse, and lose consciousness. This means she often has little direct awareness of the seizures themselves. She noted, "You don't see the seizure or experience it in any way. You also lose a big chunk of time following the seizure. So for about 30 to 40 minutes after, you're doing things and saying things that you have no control over and you won't remember. All you have to piece together the incident is stories from other people."
Social Stigma and Misconceptions
Beyond the medical challenges, Letizia faced new social taboos. She admitted, "I knew absolutely nothing about epilepsy and that was the scariest part. I relied heavily on violent depictions of seizures as shown on medical dramas, movies and shows. I had never thought twice about it before, but I looked at these videos and images and saw myself and it was horrible."
She added that when she shares her diagnosis, people often respond with fear. "Seizures are very scary, so if you mention you've had them, the reaction is usually one of fear. It would be great if people could stop associating epilepsy with such strong reactions, and we could fight the misconception of how rare it is. It's quite a common condition."
Triggers and Daily Precautions
For Letizia, seizures can be triggered by various factors, requiring constant vigilance. She tracks her sleep patterns, stress levels, and maintains bodily awareness, such as avoiding standing too close to train tracks in the mornings. This ongoing monitoring is crucial for managing her condition and preventing episodes.
Traveling with Epilepsy
Traveling has imposed emotional and financial burdens on Letizia. Last summer, she had a seizure while traveling in Switzerland after a long day of travel. "I collapsed. It was a nasty seizure, and I was vomiting severely for several days. I ended up in urgent care. It was an extremely upsetting situation. I was there for my wedding planning and instead I spent the better part of a week in bed, puking, with a horrendous headache," she shared.
She was fortunate to receive medical help but had to pay out of pocket due to a lack of international health insurance. Since then, she has purchased travel insurance but found her options "limited" and "expensive" because of her condition. Despite this, she remains hopeful, emphasizing the importance of preparation. "Accept your limitations and know that the danger is real, but as long as you take precautions, there's nothing that can stop you from traveling as much as you can and want to. It's all about preparation. I've learned that making sure you've prepped enough medication, gotten the number of your neurologist, and checked to see where the hospitals are."
Expert Advice on Travel Insurance and Seizure Response
Hannah Mayfield, a money expert with PayingTooMuch, highlighted the challenges for travelers with pre-existing conditions like epilepsy. "Travellers with pre-existing medical conditions often face a delicate balancing act when arranging travel insurance. Conditions like epilepsy must be declared during the medical screening process so insurers can assess the risk and provide a quote that reflects the traveller's specific needs. It is not just about finding the cheapest policy. It is about making sure you are properly protected."
Dr. Asimah Hanif provided guidance on how to respond if someone nearby experiences a seizure. She advised, "Stay calm and stay with them; timing the seizure helps medical responders. Protect them from injury – cushion their head, loosen tight clothing around the neck, and gently move hazards away. After the seizure, place them in the recovery position (on their side) and check for medical ID. Call 999 if the seizure lasts more than five minutes, if another follows without full recovery, it's their first known seizure, or they are injured."
Dr. Hanif also cautioned against restraining or moving someone during a seizure unless they are in immediate danger and advised avoiding panic or attracting unnecessary attention.
