The doctor dispelled myths and misconceptions about epilepsy

Despite the widespread occurrence of epilepsy, there are a number of myths and misconceptions about the disease. Ekaterina Mandra, head of the Medical and Diagnostic Department of the A.Ya. Kozhevnikov Clinic for Nervous Diseases at Sechenov University, Assistant Professor of the Department of Nervous Diseases, PhD, told Izvestia on February 10 about why social misunderstanding can harm more than seizures and how to recognize atypical forms of epilepsy.

Epilepsy is not a rare disease. The World Health Organization (WHO) estimates that it affects about 50 million people worldwide. In Russia, the prevalence is about three to four people per 1,000 population. Despite improved diagnosis and increased awareness, attitudes in society often lag behind medical realities. In about 70% of cases, epilepsy is due to a genetic predisposition or brain development disorders. The remaining 30% relate to acquired or symptomatic forms of the disease.

"Many people still perceive epilepsy as something "scary", surrounded by a halo of mystery and stigma. This bias is one of the heaviest burdens for patients, as it seriously affects their psychological state and quality of life. The only way to combat this is through education, open dialogue, and talking about real facts, which is what we are trying to do," Mandra said.

According to her, a vivid convulsive attack with loss of consciousness is the most common and very harmful stereotype about epilepsy. The specialist emphasized that generalized tonnico-clonic seizure is just one of more than 40 possible types. An attack can manifest itself as a short-term "freezing" when a person falls out of reality for a few seconds, twitching of one limb or facial muscles, a sudden feeling of fear, strange tastes or smells, visual distortions or confusion. In some cases, the person remains fully conscious.

According to Mandra, it is precisely because of such atypical symptoms that the diagnosis sometimes remains unrecognized for years. A person may not be aware of their condition for a long time if seizures occur rarely or occur in a mild and atypical form. In such cases, diagnosis is difficult and requires careful medical history collection. Mandra also stressed that myths persist in the context of helping a person with an epileptic seizure.

"One of them is an attempt to unclench a person's teeth and insert a spoon or other object into his mouth. It is absolutely impossible to do this: such actions are almost guaranteed to lead to injuries to the patient's teeth and jaw and damage to the hands of someone who is trying to help," she shared.

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She called another misconception the need to hold a person by force during an attack. The specialist emphasized the danger of such "help", as it can dislocate a joint or cause other injuries. Among other things, she called attempts to perform artificial respiration during seizures ineffective and unsafe. According to her, the attack will stop on its own, and it is impossible to stop it mechanically.

Mandra clarified that proper care includes putting a person in a safe space without hard and sharp objects around. According to her, it is also important to put something soft under the head, and lay the person on his side to fix him in a stable, safe position. After an attack, it is also necessary to stay close to the person and help him recover.

Urgent medical care, according to the doctor, should be called if the attack lasts more than five minutes, if they follow one another without restoring consciousness, as well as during an attack in the water, serious injury, or in the case of the very first attack in life.

At the same time, it is clarified that the risks associated with epilepsy increase the mortality rate by 1.5–3 times compared to the average population. The main threats, according to Mandra, are related to the effects of seizures, including injury.

"In my experience, after achieving seizure control, the main factors that worsen the quality of life are stigma and misunderstanding on the part of society. The fear that an attack will happen in public, unreasonable job refusals, difficulties in personal relationships — all this often turns out to be more severe than the attacks themselves. Overcoming these social barriers is our common task," the doctor concluded.

Ekaterina Demyanovskaya, an expert at the Hemotest laboratory and a neurologist, told Izvestia on August 2 last year that olfactory hallucinations were a possible symptom of epilepsy. She clarified that about 15% of patients with temporal lobe epilepsy turn to specialists with complaints of sudden appearance of strange odors. According to the doctor, an episode of this phenomenon can be the equivalent of a seizure.

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