Not a Terrible Epilepsy at all

In common use, the term epilepsy refers to a whole group of diseases with very different clinical manifestations and different outcomes. Today, medicine knows more than 60 such diseases…

People have known about this disease since ancient times. Medical historians say that there is no substance, mineral, animal or vegetable origin, which would not try to treat epilepsy. People who suffer from this disease, some consider mentally disabled, others-geniuses. Which of them is closer to the truth? Let’s try to figure it out.

The name is there, but the disease is not?

In fact, there is no disease called “epilepsy”. In common use, this term refers to a whole group of diseases with very different clinical manifestations and different outcomes. Today, medicine knows more than 60 such diseases. Among them, there are very severe forms that are painful and difficult to treat. And there are some-doctors even call them benign — that do not cause the patient any special inconvenience and pass themselves, even without medication. Elena Dmitrievna Belousova, Professor, MD, head of the Department of Psychoneurology and epileptology of the Moscow Institute of Pediatrics and children’s surgery of Rosmedtechnology believes that one of the main tasks of the doctor to whom the patient complained of epileptic attacks is to determine which disease from this large group he is dealing with.

Most often, children and adolescents get epilepsy, among them, from 0.5 to 1% are subject to epileptic attacks. The disease also occurs in adults, mainly the elderly — they have epilepsy is actually a complication after injuries, strokes, and other vascular pathologies. In Russia, the frequency of epilepsy, its prevalence is the same as in the whole world – not higher or lower.

Usually, we imagine epilepsy as follows: the patient suddenly falls, he develops convulsions, foams at the mouth, he utters some screams, and eventually, stunned, falls asleep. In fact, such classic attacks — doctors call them generalized tonic-clonic-are not common in all patients. Most often, epilepsy manifests itself as loss of consciousness or some kind of violation of it. A person — a child or adult-begins to behave inappropriately: does not respond to others, does not answer questions, and so on.

— It happens, and especially often in children and adolescents, a short-term attack with a violation of consciousness for 10-15 seconds-explains Elena Dmitrievna, – the attack can not even be noticed, or taken at first for inattention, absent-mindedness. But if these episodes are repeated, happen often, parents still understand that something is wrong with the child. These seizures are called absence seizures. During them, the patient does not fall, just for 10-20, sometimes for 30 seconds turns off from the surrounding reality: does not answer questions, does not react at all to others.

If you do not pay attention to absences in time, the attacks will persist. The child will not be able to study at school, because with this form of epilepsy, attacks are very frequent, tens or even hundreds a day.

Sometimes there are night attacks, and they are also not always similar to the classic generalized tonic-clonic attack. Parents note that the child takes some unusual poses, different parts of the body are strained, and the mouth is distorted. It happens that the patient wakes up, and can not say anything, although he is conscious.

Of course, there are disorders of consciousness and not related to epilepsy. I think everyone has fainted at least once in their life, or was close to it. If a person feels ill in a stuffy room, with a sudden change of body position, after some physical activity, then most likely it is not epilepsy, but just fainting. In epilepsy, attacks occur spontaneously, without cause, as they are called, in an empty place.

What to do?

A patient with suspected epilepsy should be shown to a neurologist. Or take a referral from a district pediatrician or therapist and contact them in the so-called epileptology office. Such specialized centers (this is a state-run, free service) exist in Moscow and in many regions. They are able to provide specialized assistance at a fairly high level.

  • Referral to our Institute can be obtained from both a pediatrician and a neurologist. At the reception, you will be assigned to a consultation appointment without any additional problems.

In the vast majority of cases, modern research methods allow a specialist to make a diagnosis immediately. It is mandatory to conduct an electroencephalographic study (EEG), comparing its data with the story of the patient or his relatives.

Sometimes an additional examination is required.

— As a rule, – says Elena Dmitrievna,-it is necessary to conduct a magnetic resonance imaging of the brain to find out what is associated with this epilepsy, whether there are any changes in the brain.

In addition, sometimes an in-depth electroencephalographic examination – EEG-video monitoring is shown. In this case, for a long enough time, a video recording of the patient’s behavior is made simultaneously with the EEG recording.

  • Parents can not always correctly describe to us what happens to the child during an attack: where the head turns, whether the hands strain, etc. The video gives us the opportunity to see all this. And the EEG shows where there is an epileptic discharge, which is the reason for the attack: in which hemisphere what hemisphere, what proportion of the brain. This is very important for correct diagnosis, treatment selection, and prognosis.

Who is to blame?

Why does epilepsy occur? Doctors believe that as many forms of this disease, so many causes of it. Sometimes this is the result of some kind of brain damage: malformation, the consequences of lack of oxygen during difficult pregnancy and pathological childbirth, etc. If this is the reason, then epilepsy in a child often develops early, in the first or second year of life.

There is a separate group of diseases that are called idiopathic. They do not reveal any brain damage. It is believed that there is a genetic predisposition to such epilepsies, but it is not always clear to doctors what it is.

Ordinary people often talk about the hereditary nature of epilepsy.

— Yes, there are such forms, – confirms Elena Dmitrievna — – but they are extremely rare, rather this is an exception. Another situation is more common, when there is a certain genetic predisposition to the development of seizures. For example, there is a predisposition to so-called benign childhood seizures. Children with this inheritance are more likely to have seizures at elevated temperatures, and they also have benign epileptic syndromes. They are easy to cure, they pass without affecting the child’s intelligence.

Benign previously called those epileptic syndromes that occurred with rare attacks and did not affect the full development of the individual. Now this concept is somewhat narrowed: it is believed that truly benign epilepsies are those that can pass themselves, even if they are not treated. The attacks will continue for a while, and then they will pass. But benign epileptic syndromes occur only in children.

Can a doctor, having diagnosed a child with epilepsy, just send them home without prescribing any medications?

— Only in very rare cases, – explains Elena Dmitrievna. — And we always require that the parents of the patient and the doctor have a prompt and good communication. We must control the course of the disease.

Unfortunately, there are other syndromes that are at the opposite end of the spectrum. These are very severe types of epilepsy, they are called catastrophic. They also have another name — epileptic encephalopathies. They also occur only in children and are very difficult. But the main thing is that almost always such a disease causes a violation of neuropsychic and speech functions. And, if modern medicine can cope with attacks, then the regression of neuropsychic development that is observed in a small patient, unfortunately, can remain for life.

Live with epilepsy

But still, medications help the majority of patients. Patients with epilepsy receive medication constantly and for a long time. Even children’s benign epilepsy is treated for several years. But there are also patients who are forced to take antiepileptic drugs for a long time, for years, sometimes for decades. In other words, there are some types of epilepsy that doctors can’t cure yet. But they can control it, which means that if the patient regularly takes the right medications, then he will not have attacks.

What does the absence of seizures mean for the patient? A lot of things, and first of all, that he can live a full life. The intensity of physical and mental stress does not matter to him. Emotional stress also rarely causes complications. A patient who regularly takes antiepileptic drugs and does not have seizures can exercise, can travel with an accompanying person, and even independently. Abroad, an adult with epilepsy can even drive a car if there are no attacks for a long time. Of course, there are certain restrictions. The attack can be triggered by lack of sleep, excessive alcohol consumption. Some forms of epilepsy are characterized by photosensitivity (the attack can be a reaction to visual stimuli: flashing lights at a disco, when watching TV, when working on a computer). Accordingly, the work should be selected based on these characteristics of the body.

Each form of epilepsy has its own detailed list of recommendations.

— Sometimes all patients with epilepsy are not recommended to watch TV — this is completely wrong. You need to clearly understand who can do it and who can’t.

A patient with epilepsy is absolutely contraindicated extreme situations, whether it is work or sport. You can not become a high-altitude installer, engage in diving, mountaineering. The probability of a repeat attack, although small,but there is any form of epilepsy, with any, the most competent treatment. And if such an attack occurs under water or at altitude? Better not risk it.

Epilepsy and pregnancy

A separate conversation is about women preparing to become mothers. If a girl in childhood or adolescence had epilepsy and it passed, then as an adult, she can safely forget about it, and give birth, as they say, on a General basis. But a pregnant woman suffering from epilepsy becomes the object of special care of epileptologists. It is believed that a woman who regularly takes antiepileptic drugs has a 95 % chance of giving birth to a completely healthy child. At the same time, pregnancy and childbirth do not cause a deterioration in the course of epilepsy, the disease will not go into any severe form. In some forms of epilepsy, pregnancy even benefits the body and attacks become less frequent.

Elena Dmitrievna considers such women a separate group of patients. They must be observed in their own way, very carefully.

— This is a separate area of knowledge in the field of epilepsy — – she says — – there are even special standards for monitoring women of childbearing age with epilepsy, developed by the International League against epilepsy. Everything, of course, depends on what state the pregnant woman is in. If she doesn’t have any attacks, she takes the drug and tolerates it normally, then she is likely to be fine.”

Society and epilepsy. Quality of life.

A sudden attack of illness can be a different kind of psychological disaster for the patient. Very often patients with epilepsy hide their disease, are ashamed of it. For some reason, epilepsy is considered a kind of stigma, a disgrace. Sometimes even doctors meet who believe that epilepsy is necessarily associated with some intellectual disabilities, with some special qualities of the person. In fact, of course, this is not the case. Most patients do not suffer intellectually and there are no changes in their personality. This problem exists all over the world, let alone in today’s Russia, where domestic violence in both children’s and adult groups has become almost the norm. A person with epilepsy can often be denied employment if they know his diagnosis. The child may not be taken to kindergarten or school. In words, “so as not to injure other children”, but in fact-they are simply afraid of responsibility.

It is fair to say that there is another opinion. Epilepsy, due to the brightness of its clinical manifestations, has always attracted attention. This disease was suffered by many prominent people-Alexander the great, Julius Caesar, Napoleon.

— Both in ancient times and in the middle ages, it was believed that this is possession by demons, some devilish forces. They even thought that the patient with epilepsy was contagious, and advised to stay away from him. But there was an opposite point of view — that this is a sign of sanctity — just remember our fools and the blessed. In other words, there were plenty of myths about epilepsy.

Unfortunately, if medical care for epilepsy patients in our country is more or less established, the level of social assistance is almost zero. No one helps them understand this diagnosis, no one informs them about their rights, and even more so, no one helps them defend these rights. There is no legal framework prohibiting discrimination against patients with this diagnosis.

Meanwhile, such assistance is highly developed abroad. There are public organizations that lobby for the interests of epilepsy patients, whether they are children or adults. If government programs infringe on the rights of these patients, then the adoption of such laws immediately meets with public resistance. There is an active explanatory work in the media. In Europe, there is even a program called “Epilepsy from the shadows”. That is, from this twilight of superstition, epilepsy as it were comes to light and people begin to understand that it is not so terrible, that it is possible to fully exist with it.

Things are not so good in our country. Medications needed for the treatment of epilepsy are included in the preferential lists, meaning patients receive them for free. The problem is that these lists are constantly changing, with drugs appearing and disappearing. In addition, each less-than-significant municipality makes its own lists of preferential medicines. Take the Moscow region: in one district, the drug is included in the preferential list, but in the neighboring one — it is not.

Meanwhile, antiepileptic drugs are not cheap, sometimes the cost of treatment reaches 2-3 thousand per month or more. For a resident of a provincial city, this is a lot. And here patients are waiting for a surprise from officials. Let’s say that the patient has been taking a certain antiepileptic drug for some time. The medicine is helping him, the attacks have stopped. When the package of the drug is finished, he goes to the doctor and gets a prescription for a new portion. The prescription is free, because the drug is included in the preferential list. But then one day the doctor tells him with a sigh: “Unfortunately, there will be no more free prescriptions, your drug will be excluded from the preferential list. But there appeared its analog, another drug, almost the same and still not quite the same. Do you need to write it out or will you buy the old one for money?»

Meanwhile, the issue of changing the drug is not so easy to solve with a single stroke of an official pen. This problem is discussed by epileptologists all over the world and the conclusion they came to is not comforting for patients: it is better not to change the drug. Such recommendations are given by the European antiepileptic League and the American Academy of neurology. Our doctors also agree with them.

— When a patient is trying to prescribe some other, similar drug, but not the one that he received, the risk of relapsing attacks is about 30 %.

In other words, there were ten patients with epilepsy who took free medication. Suddenly they stopped giving out this medicine for free. The patients changed the drug and three of them resumed their attacks. But we have already said what a sudden attack of epilepsy in our society is fraught with. A man can lose his job, his fiancee. He may be driving at this moment without taking into account the laws, cause an accident on the road and at the same time kill himself and other people.

Therefore, now doctors not only in Russia, but also around the world actively protest against the practice of unjustified replacement of drugs for patients with epilepsy. The Russian branch of the European epilepsy League also advocates for the interests of its patients. At all administrative levels, practitioners try to explain that it is really dangerous when a stroke of the pen of an official can cause a person to have an attack that is unknown how it will end. Along the way, advising their patients not to change the drug, at least without first consulting with their doctor.

— If you are told at the pharmacy that we will give you not your usual, but another, much better drug, you still need to first consult your doctor. And he will already decide whether such a replacement is possible or not. After all, a different drug is not the same. Not only does the box change, but the fillers change, and the characteristics of the release of the active substance change, which means their concentration in the patient’s blood. Still, this is undesirable if the patient was doing well on the old drug.

To sum up our conversation about the disease of Caesars and fools, we can say: if your child has epilepsy, he will not necessarily grow up to be a genius. But most likely, he will grow up to be a normal and full-fledged person.

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