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What is it like to live with epilepsy? Keys to leading a full life

Epilepsy is a chronic neurological condition that affects millions of people around the world. It is characterized by the recurrent appearance of epileptic seizures due to abnormal discharges of electrical activity in the brain. “Epilepsy is a disease that has treatment in most cases, but it continues to carry a stigma that affects those who suffer from it,” says the Dr. Francisco Javier López, member of the Epilepsy Study Group of the Spanish Society of Neurology.

Although treatment has improved significantly, living with epilepsy It still greatly affects the quality of life of those who suffer from this condition. From crisis control to the emotional and social impact. To learn more about this condition and, above all, learn how to live with epilepsy, we spoke with several experts who explained to us what exactly this pathology consists of, what its treatment is and if there has been progress and how diet, exercise or, even rest.

What is epilepsy?

Epilepsy is a disease characterized by epileptic seizures recurrent, which can vary in type and intensity. “To diagnose epilepsy, the patient needs to have experienced at least two epileptic seizures without a clear causeor a crisis with a predisposition to have more,” explains Dr. López. These crises occur when one or more areas of the brain emit abnormal electrical discharges, causing symptoms that can range from sensory hallucinations to seizures generalized tonic-clonic.

Types of epilepsy

Epilepsy is classified into different types of seizures and epileptic syndromes. According to Dr. López, “generalized tonic-clonic seizures, where the patient falls to the ground and convulses, are the best known, but they are not the most frequent.” The most common crises are those of absencewhere the patient disconnects for a few seconds or minutes, or has mild involuntary movements. There are also focal or partial seizuresin which only part of the brain is affected, producing specific symptoms in one area of ​​the body.

Factors that trigger crises

Epileptic seizures can be caused by a variety of factors, including genetic causes, brain injuries due to trauma or vascular diseases such as stroke. “An injury to the cerebral cortex, where neurons are located, is a common cause of seizures,” explains Dr. López. Likewise, environmental factors, such as stress, lack of sleep, and exposure to flickering lightscan also trigger a seizure in epileptic patients.

Deep brain stimulation (DBS) and vagus nerve stimulation (VNS) are innovative therapeutic strategies for patients with epilepsy resistant to conventional treatments.

Treatments

Fortunately, advances in the treatment of epilepsy have allowed approximately two thirds of patients manage to control seizures with antiepileptic medication. “Today, we have more than 20 types of drugs “which have significantly reduced side effects compared to older medications,” highlights the neurology specialist. In patients who do not respond to drugs, there are other options such as “the deep brain stimulation (DBS) and vagus nerve stimulation (VNS), These are innovative therapeutic strategies for patients with epilepsy resistant to conventional treatments”he explains. These surgically implanted devices can reduce the frequency and intensity of seizures by sending electrical stimuli to specific areas of the brain.

What is it like to live with epilepsy? Keys to leading a full life© Getty Images

What is it like to live with epilepsy?

Without a doubt, one of the biggest concerns of patients is how to live with this disease and avoid the risks that may arise. And it is that living with epilepsy is a challengelargely due to the unpredictability of crises and fear of social stigma. The Dr. Carla Anciones, head of the Epilepsy Unit at the Sanitas La Zarzuela University Hospital, points out that “the possibility of having a crisis at any time generates insecurity and anxiety.” Patients are forced to adapt their daily activities, limiting tasks such as driving or playing certain sports, which can lead to frustration, isolation and in some cases, depression. However, it is possible to live well with epilepsy by taking into account the possible dangers and avoiding them, as well as reducing the risk of new seizures with medication and healthy lifestyle habits.

Alternatives such as the modified Atkins diet may also help reduce the frequency of seizures.

Strategies to manage epilepsy

Dr. Anciones recommends that patients work together with their medical team to develop a plan that includes adherence to treatment and the control of factors that can trigger crisesyes, like the sleep and stress. “It is vital that the patient adopts a healthy lifestyle that complements the medication and minimizes the triggers.”

Diet and exercise

The Food is a fundamental pillar to improve the quality of life of these patients. Specifically, as experts point out, the ketogenic dietcharacterized by a high content of healthy fats and low carbohydrates, has been shown to be effective in patients with refractory epilepsy. ANDgoes Mª Bautista, nutritionist at Blua de Sanitasexplains that “the ketogenic diet promotes the production of ketone bodies, substances that have properties anticonvulsantyes.” Alternatives like Atkins diet modified can also help reduce the frequency of seizures. Additionally, Bautista recommends foods rich in antioxidants such as fruits, vegetables, and nuts, which protect brain cells and improve overall health.

He regular exercise It is another of the fundamental pillars for the management of this disease. In addition, it has benefits not only in crisis management, it also helps the mental health of patients. Dr. Anciones recommends low-impact activities, such as walking, swimming, and practicingcar yogaactivities that can reduce stress without exposing those affected by this disease to unnecessary risks. However, he warns that “high-impact activities, such as boxing or rugby, should be avoided, especially in patients who have not yet controlled their condition.” They must also Take precautions in water sports, such as swimming, always with supervision.

Patients should be cautious with the consumption of substances such as alcohol and certain medications that may interfere with antiepileptic treatment.

Managing stress, anxiety and sleep

Another factor that can aggravate the disease and the quality of life of patients with epilepsy is stress and anxiety. Virginia del Palacio Llorca, psychologist at Blua de Sanitas, highlights that “chronic stress can trigger seizures in epileptic patients, raise cortisol levels and adrenaline in the body.” This increase in activity in the nervous system predisposes to seizures and affects the general well-being of patients. To reduce the impact of stress, specialists recommend relaxation and meditation techniques, and psychological support to manage the fear of having crises in public.

And if managing and controlling stress and anxiety is important for live better with epilepsyguaranteeing a good rest is also essential. And lack of sleep can increase the risk of seizures. “Establishing a consistent sleep routine is key, and patients should avoid stimulants such as caffeine and screens before bed,” advises the psychologist. A suitable sleeping environment, with a dark space and no noise, is also important for the patient to get a restful rest.

We must also not forget that unsafe environments represent a risk for people with epilepsy. Dr. Anciones recommends adapt the home to minimize dangers in the event of a crisis, removing sharp objects or avoiding hard surfaces. Patients should also be cautious about the consumption of substances such as alcohol and certain medications that may interfere with antiepileptic treatment. Even excessive caffeine consumption can increase the risk of seizures.

The role of family and friends

Finally, it is also important to highlight the great role that family and friends have in the management of a patient with epilepsy. In fact, support from the immediate environment is essential to improve the quality of life of those living with this disease. In this sense, Virginia del Palacio highlights that “family and friends should educate themselves about epilepsy to better understand the condition and know how to act in a crisis”.

It is also important to offer emotional support by listening and providing a safe space to express concernssince it is the person who can best guide you towards what type of help you need. Normalizing their situation, accompanying the person in social activities can help reduce anxiety and promote inclusion. In addition, promote healthy habitslike good nutrition and regular exercise, can benefit your well-being.

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