The worst thing that can happen to a person diagnosed with epilepsy is not being able to control the seizures of the disease. And it is for many reasons. “Freedom from a crisis is getting closer to having a normal life,” says Dr. Antonio Gil-Nagel, director of the Epilepsy Program of the Neurology Service of the Ruber Internacional Hospital in Madrid. In Spain some 400,000 people suffer from epilepsy and each year between 12,400 and 22,000 new cases are detected, according to estimates by the Spanish Society of Neurology (SEN).
Not all epileptic seizures manifest as seizures. Presenting absences (without realizing what is happening around them), lack of response to stimuli or repeatedly making automatic movements, among other signs, can also occur when the patient is suffering an epileptic seizure. Although most patients control this neurological pathology with anti-seizure medications (MACs), approximately 40% of patients do not achieve so-called sustained seizure freedom, after having tried at least two different drugs.
In these cases, their disease is defined as drug-resistant epilepsy, which represents a medical need not yet covered with all that this entails. “Patients who have epileptic seizures suffer a series of problems that range from the least serious to the worst. On the one hand, there is the social deterioration in their lives, since they cannot drive, their possibilities of working and creating a family are often limited, and, on the other, they are at risk of accidents that can lead to head injuries.†says Dr. Gil-Nagel.
The World Health Organization points out that epilepsy, which affects more than 50 million people worldwide, is the second neurological disease in years of life potentially lost or lived with disability. 60% of patients associate psychiatric, neurological or intellectual disorders, which means that the number of patients with disabilities due to epilepsy in working age in Spain exceeds 26,000 people, reports from the SEN. In addition, in drug-resistant patients there can also be cognitive deterioration due to the repeated effect of the attacks and, in the worst case, a risk of sudden death related to the disease. On this last point, rapid management of the disease is especially relevant and freedom from seizures as soon as possible, since it is more frequent in the first years of the disease and when the patient does not take the treatment(s).
Specialists point to two large groups of epilepsies, such as generalized and focal. “In the generalized we assume that there are lesions or functional alterations in the two cerebral hemispheres, being the cause of the epileptic seizures. In the focal ones, on the other hand, there is a type of lesion focused on a part of the brain that generates the seizuresâ€, explains the neurologist. In fact, epilepsy can have many causes, although genetic predisposition or suffering from some type of abnormality or brain injury are usually the most common.
Even so, there are many types of epilepsy that are increasing as the causes and mechanisms of the disease are known. And when the affected person does not respond to drug treatment, the challenge is greater. The treatment of drug-resistant epilepsy has been a challenge for several decades, since the lack of seizure control in these patients is associated with increased mortality and reduced quality of life, not only associated with the disease but also with adverse effects due to the high number of drugs to which these patients are exposed. People with uncontrolled seizures are three times more likely to have a worse state of health and a greater propensity to have depression.
“The first option is, if it exists, a non-pharmacological treatment that can help them and, among them, the possibility of surgery stands out. Today, this choice has been extended to patients in whom, for example, the first drug has failed. If the surgical option is simple, it should be evaluatedâ€, explains the doctor. Otherwise, palliative surgery procedures or neurostimulation systems can be used. Other alternatives, such as the ketogenic diet (low carbohydrate, high fat) can also be considered in selected patients. “In epilepsy, individualized management must be carried out, such as a tailored suit for each patient, and constantly assess what benefit we obtain,” says the specialist.
Other solutions are “new drugs that were not available before and that today we have seen have the capacity to rescue many patients who had refractory or drug-resistant epilepsy,” says Dr. Gil-Nagel. In fact, one of the main therapeutic innovations in the management of epilepsy that has occurred in recent years has been the approval of new drugs by the European Medicines Agency, which have been shown in clinical trials carried out in various patients from different Spanish hospitals a higher percentage of freedom from seizures than the rest of the drugs.
Additionally, patients often experience the stigma associated with crises, which leads to isolation and impaired interpersonal relationships. The stigmatization process suffered by people with drug-resistant epilepsy is reliably reflected in the documentary ‘Episodes of a Life’ promoted by Angelini Pharma Spain with the endorsement of the Spanish Epilepsy Federation (FEDE) and the Spanish Epilepsy Society (SEEP). . “You still come across some myths around the disease, such as that people with epilepsy can choke on their own tongue, but the social stigma is gradually disappearing,” says the doctor.
For specialists, the future in the management of epilepsy goes through many areas, highlighting the importance of consultation. “Research in epilepsy is done face to face with patients, knowing their state of mind, analyzing them, looking for details, understanding what is happening and how those affected express itâ€, affirms the neurologist. Thus, for him, clinical analysis must be as exhaustive and constant as possible, and be associated with research in genetics, more precise surgery, pharmacological research and new therapies. Everything so that the tailored suit for each patient implies a quality of life that is as close to the desired normality.
