Being in contact with Tanja from Institut für Epilepsie in Graz, I received a lot of resources about epilepsy. One resource immediately caught my attention: selpers.com is a Vienna based online platform, which offers scientific and free online courses. Its mission is to help people with chronic diseases to understand their condition, ease treatment and increase their quality of life. At its core selpers believes, that patients can influence their course of the disease through their behavior.
Besides trainings and livestream events users can use texts, video interviews, animations, podcasts and checklists to receive what they need to know in an interactive and easy-to-understand way. A blog features interviews with experts, new research and stories.
I chose the training course „Epilepsie verstehen“ held by Assoc. Prof. Dr. Gerhard Luef. I expected the course to be a good refresher and overview of the topic of epilepsy, because I felt I still have some blindspots that would need to be filled. In the following I will go through the contents and what I’ve learned.
1. What is epilepsy?
Dr. Luef starts with giving a definition about the chronic disease. Epilepsy is one of the most common chronic diseases worldwide. Around 10% of people will experience a seizure at some point in their lives and approximately 5% of them will develop epilepsy. Seizures can happen to basically anyone, even individuals without prior diseases, such as students experiencing lack of sleep. While a single seizure does not necessarily mean someone has epilepsy, multiple unprovoked seizures typically characterize the disorder. Although epilepsy is not curable, it is manageable through medication for two-thirds of affected individuals. Surgical intervention can offer a permanent solution in some cases.
A seizure occurs when brain cells discharge electrical signals in an uncontrolled manner, much like a „short circuit“ or „electrical storm“ in a specific brain region. In some cases, the entire brain is affected, leading to disruptions in all senses, including loss of smell, taste or even hallucinations. The most common type of seizure is focal, which arise from specific brain regions. Generalized seizures, on the other hand, involve widespread electrical discharges across the brain. Although epilepsy does not usually cause permanent damage, untreated seizures can lead to memory impairment over time.
2. Causes of epilepsy
Dr. Luef explains epilepsy itself is not inheritable, but a genetic predisposition can increase the likelihood of experiencing a seizure. Some genetic and pre-exisiting disorders, such as Landau-Kleffner syndrome or Down syndrome, may promote epilepsy. Additionally, brain injuries caused by stroke, tumors, head trauma or severe concussions can lead to epilepsy because of a developed long-term instability in brain function. In general, anything harmful to the brain, including sleep deprivation and excessive alcohol consumption, increases the risk of seizures.
3. Symptoms and course of disease
Focal seizures may begin with an aura – a warning sign like nausea or sensory disturbances – before leading to loss of consciousness. Symptoms may include unusual smells, tastes, or involuntary movements like hand twitching. Dr. Luef claims that observers often find seizures distressing, especially when symptoms such as foaming at the mouth or bleeding occur. However, people with epilepsy typically do not feel pain during a seizure, though they may experience muscle soreness or injuries afterwards.
Absence seizures, very common for children and teenagers, are characterized as brief episodes of unresponsiveness, often mistaken for daydreaming. After a severe seizure, individuals may fall into deep sleep and/or experience disorientation for minutes to an hour possibly. Those who suffer generalized seizures usually have no memories of the event. Dr. Luef states that minimal intervention for bystanders during a seizure is best: To ensure a safe environment is the priority. If warning signs like sensory changes occur before a seizure, documenting them if possible can help with diagnosis of doctors and management of the disease.
4. Diagnosis of epilepsy
According to Dr. Luef’s opinion first seizures should always be examined by a medical professional as soon as possible, ideally within 20 hours. Common symptoms include tingling sensations, regularly occurring déjà vu episodes or sudden nausea. Neurologists and pediatricians use various diagnostic tools to differentiate epilepsy from similar conditions like syncope (fainting) or psychogenic seizures.
A proper evaluation in a clinical setting includes medical history, eyewitness reports, and physical examinations, followed by an electroencephalogram (EEG) and an MRI. EEGs measure electrical activity in the brain to detect abnormal patterns. After a first seizure, patients may need to stay in the hospital for further monitoring.
5. Living with epilepsy
For most people with epilepsy, lifelong medication and therapy is necessary. In emergency situations, placing a person in the recovery position and minimizing injury risk is essential. For individuals planning a family, proper medical advice is crucial since some epilepsy medications can cause birth defects. Seizures during pregnancy pose risks for both the mother and baby, but this according to Dr. Luef should not prevent expectant parents to not have children.
Avoiding seizure triggers, such as sleep deprivation and alcohol misuse in relation to the specific form of epilepsy, is important. It can be dangerous to forget medication, especially during activities like hiking, swimming or driving. Certain careers, such as pilot, train conductor or military service, consciously exclude people with epilepsy due to safety concerns.
Epilepsy can be life-threatening in rare cases, such as Sudden Unexpected Death in Epilepsy (SUDEP), which occurs in about 1 in 1,000 patients. But most people with epilepsy can lead full and unrestricted lives. Open discussions about epilepsy, participation in support groups and spreading awareness are key to improving quality of life for those affected.
6. My message to you
In the last part Dr. Luef addresses affected people and their dependants directly. Epilepsy is not something affected people need to be ashamed of. It is a normal disease like any other. The affected should talk openly about their disease and get into an exchange. They should stick to their medication plan and ask a medical professional for help, when intolerances occur. Last but not least major risks should be avoided. Following all this makes living with epilepsy very easy for the affected.
Reflections
Overall, this online training provided a very good and comprehensive overview. I felt quite well informed and wished I had taken this training earlier. It really helped to fill in the gaps in my knowledge. It was interesting to hear an expert’s perspective on the disease, especially the part about people being shocked when they witness an epileptic seizure. This is valuable to know for what I would like to test in my potential master’s thesis: Is a mobile device capable of delivering first aid information to public untrained bystanders? Finally, hearing all the aspects of what can cause seizures and how basically anyone can be affected left me feeling grounded and grateful for my health and the choices I make in my daily life, such as not wearing a helmet when riding a bike.
