Myths and truth about epilepsy

11 questions about this disease and 11 exhaustive answers

Patients with epilepsy were treated by psychiatrists some 30 years ago. The disease has still been stigmatised, there are a lot of myths about it. Epilepsy Day was celebrated around the world on 25 March. Doctor of Medical Sciences, chief visiting specialist and child neurologist of the Volga Federal District Yelena Morozova and Candidate for Medical Sciences Dmitry Morozov are epileptologists. Symbolically, Yelena had a purple scarf on, while Dmitry had a purple handkerchief in the pocket of his jacket. It isn’t accidental: the purple, lavender colour is considered to be therapeutic, relaxing, and precisely this colour became a symbol of Epilepsy Day. Realnoe Vremya is publishing takeaways from their story. We answer the most popular questions about the disease: what to do if a person has a fit, how epilepsy is diagnosed, what to do if the diagnosis was already made and, most importantly, why epilepsy isn’t a sentence.

What is epilepsy and how many people have it?

Dmitry Morozov: Epilepsy is a chronic brain disease that is characterised by repeating, primarily unprovoked fits. As a rule, the disease makes its debut either in early childhood or appears in old age. There are two statistical peaks of the disease — under a year and after 65 years. Up to 75% of epilepsy cases are diagnosed under the age of 20. 1 in 100 children are diagnosed with epilepsy, while 5% of people have had fits (at least once in life). Around 60 million people have epilepsy around the world.

Yelena Morozova: And this is excluding India and China that don’t count the incidence. Scientists think that this number will reach 100 million together with it. 925 children are diagnosed with epilepsy in Kazan today, while around 2,000 children live with such a diagnosis in Tatarstan. I will also add that there must be at least two fits: a one-time fit isn’t a reason to make the diagnosis.

What should I know about this disease for in general?

Yelena Morozova: This disease is socially crucial.

Firstly, it is quite dramatic (it is not accidental that most patients also develop a syndrome of anxiety and even clinical depression).

Secondly, even neurologists at times demonstrate insufficient knowledge about it, which means knowledge should spread.

Thirdly, patients with the disease are often stigmatised: such children are unwillingly accepted by kindergartens, some schools insist on homeschooling, adults start to have problems at work. For instance, a young woman with epilepsy turned to me and told me that her employer learnt about the diagnosis (she had a fit) and is going to fire her now. Interestingly, her employer turned to me on the same day, he asked me to help to dismiss her for health reasons.

Historically, epilepsy was officially considered to be a part of psychiatry till the 90s of the last century. Of course, this made some impact on patients’ lives, society had a certain view of it. Stigmas perhaps appeared due to this. Then epilepsy gradually switched to neurology, but patients’ social problems haven’t yet disappeared. And the fewer myths about this disease, the better.

How is epilepsy diagnosed? According to a fall and convulsions?

Yelena Morozova: Firstly, fits must repeat at least twice. A one-time fit doesn’t mean there is a disease. Secondly, most ordinary people and doctors think that epilepsy is just “classic” fits with falls and convulsions. But only some fits look like this.

Dmitry Morozov: Medicine describes up to 70 types of epileptic fits.

Yelena Morozova:

In many cases, it is hard to think we see a fit. There are criteria to make a diagnosis: firstly, they must be absolutely specific. A doctor also has to evaluate if there are changes on an EEG and MRI and results of a genetic test. And one can confidently say based on a patient’s integrated examination: yes, this is indeed epilepsy. It is impossible to make a diagnosis due to the clinical findings or only MRI/EEG. It is very important that an EEG done according to the protocol lasts for 15 minutes doesn’t matter. It is necessary to do the test for at least 2 hours with an episode of sleep. In other words, EGG video monitoring is necessary. Ideally, this monitoring should be conducted during a fit to certainly combine the moment of the fit with the peak of brain activity on the electroencephalogram.

What else can epileptic fits look like besides classic ones?

Yelena Morozova: There is a myriad of them. There are so-called reflex fits that are now considered epileptic. There is reading, food, hot water epilepsy... It is when some habitual action or conditions that are habitual for most people provoke a seizure. For instance, I had a patient who worked as an accountant. Her fits were provoked by reading, and at times they developed after reading two pages. There are the so-called mental fits like a Kazan Federal University student who came to when she was downhearted had because she was uninterruptedly bothered by a forced flow of consciousness. She said: “I don’t want to think about it” but couldn’t get rid of stereotyped repeating thoughts. There is also some kind of freezing when a person simply turns off for a few seconds without losing consciousness. In our practice, we have reported such fits that were seen only on an EEG, while parents hadn’t even noticed it. While they turned to me because the child’s academic performance suddenly fell. By the way, if your child’s academic performance is clearly going down and he is obviously losing learning skills, there is sense in monitoring him just in case. In a word, I want to say that it doesn’t necessarily have to be visible fits.

Dmitry Morozov: Babies under one year are the most difficult age for diagnostics. Newborn babies can have a lot of strange movements that are very hard to tell from a pathology. And it is the hardest group of patients to differentiate and identify seizures. We are often brought babies who have physiologically normal movements, but inexperienced parents think that something is wrong with them. An epileptologist who differentiates normal movements from pathological ones is needed if there are such suspicions.

Is the diagnosis often made mistakenly?

Yelena Morozova: I had a good example yesterday, it was a 15-year-old patient. The family is creative, the girl is an artist. Several years ago, she was diagnosed with epilepsy, a doctor dramatically told her about it. As a result, she had had two attempts of suicide in two years. The girl decided that she had a disease, she couldn’t perform, her artistic career ended, that’s to say, her life ended too. The child lives on antidepressants. As a result of an examination, it turned out she was diagnosed wrongly and she didn’t have epilepsy. And it is very serious because a diagnosis that can be mistaken and once appears in the medical records stays with the patient forever. Healthy young people often come to me and say: “I want to go to the army, drive a car but I have had one fit, and the diagnosis isn’t removed.” But it is very tough to remove a diagnosis in Russia.

Can epilepsy be cured?

Dmitry Morozov: Epilepsy is a chronic disease. But one of the key myths about it is that it can’t be cured. 75% of the patients control epilepsy well. We can get to have no fits and reach remission. Only 30% of patients don’t respond to medication. But we can free 10% of the patients with the help of surgery. And it is quite a big percentage, and doctors should keep this in mind.

Such patients don’t have a reason for frequent hospitalisation, while the necessity of staying in hospital once in six months is a stereotype. Ideally, a person with epilepsy should be provided with a good basic therapy, and a pill intake once a day becomes the only reminder of his disease.

I would like to stress that it is very important to chat with a qualified learnt specialist first to make a diagnosis. One shouldn’t self-medicate in any case. Popular methods in the case of epilepsy simply don’t work — they can be even dangerous.

Yelena Morozova: The fact that a lot of adults with epilepsy are treated worse than children is surprising for me. They live on pills and tolerate continuing fits because they were prescribed the pills when they were children. But one shouldn’t live with fits all their life, neither should one consider them as a sentence. If a medicine doesn’t suit somebody, it is necessary to look for another scheme that’s optimal in every specific case. Our goal is to minimise the seizures, and it is also possible. It is absolutely wrong to continue to live and understand that you were sentenced. Meanwhile, many patients leave the epileptologist’s room in shock as some do the room of an oncologist. At the same time, cancer is a much more dramatic disease than epilepsy, and a lot of its forms are treated now. As for epilepsy, medicine doesn’t stay still, and new ways of minimising the number of fits and reaching remission appear.

Is it true that people with this disease can’t study at university, do a hard job?

Yelena Morozova: There are a lot of unreasonable myths and restrictions when it comes to epilepsy. Even patients with very mild cases of the disease are constantly imposed restrictions: they can’t undergo rehabilitation, they can’t study at university, go to the army, do sport, drive a car, do a job that requires high intelligence... They all are myths. I support that these children shouldn’t be stigmatised as much as possible. With due treatment, if a patient responds to the treatment, he leads a completely usual lifestyle.

How to help a person who is having a seizure?

Yelena Morozova: You shouldn’t start to dash, open the window, get the patient’s head out of the window opening his jaw (often breaking the teeth). It is necessary to lay the patient onto one side so that he can’t swallow his tongue. Keep calm as much as possible. If possible, record a video of the fit to show it to the doctor later, and he will classify the fit and examine it. The doctor needs to see the face, arms, legs of the patient, the kinematics of the fit. You shouldn’t call an ambulance if you know the person well and the fit doesn’t last longer than 5 minutes. If everything takes more than five minutes, call an ambulance.

Dmitry Morozov: 90% of the fits end within three minutes. If a witness sees a fit in the street, he should call the ambulance in any case. The case is that we don’t know if this person has a chronic disease. The seizure might not be caused by epilepsy but be a consequence of a brain tumour or stroke.

What should parents do if their child’s EEG shows a suspicious activity and the doctor diagnosis him with epilepsy?

Yelena Morozova: First of all, it is necessary to confirm the diagnosis and immediately see a highly qualified epileptologist. It must be a doctor who will evaluate if this is a background activity of the brain around 5% of all people have or the symptom one should pay attention to even if there aren’t fits. Earlier, people used to say: “We don’t treat an electroencephalogram, we treat patients.” Now in some cases when there aren’t fits but there is activity on an EEG one should pay attention to. But such cases are very specific, they aren’t so frequent.

Dmitry Morozov: As old professors used to say, we should take off our hat to additional examination methods, an EEG and MRI, but we shouldn’t take our heads off. It means that the diagnosis of epilepsy is, first of all, based on clinical manifestations. And additional methods of examination work only then — an EEG, MRI, genetics.

Can a vaccine provoke developing epilepsy?

Dmitry Morozov: International health care resources explain that, for instance, there is no relation between vaccination against COVID-19 and epilepsy. So it is absolutely wrong to say that a vaccine can provoke epilepsy. But in some forms of epilepsy seizures are provoked by high temperature. In such cases, if a vaccine caused a short-term rise in the temperature, a person can develop an epileptic seizure. But it doesn’t mean that a vaccine provokes epilepsy or aggravates fits, temperature does.

Yelena Morozova: There is a subtlety. There is absolutely no link between a vaccine and epilepsy. Every person has his own trigger of a fit or even the debut of epilepsy: an injury is a trigger for somebody, for some, it is stress, a high temperature. This is why a vaccine can trigger a seizure only indirectly, by raising the temperature. And if this turns out to be the debut of the disease accidentally, you should understand that it would have manifested itself in another case, in other circumstances. Because the temperature can go up during the banal flu, chickenpox, any inflammatory disease.

Are people with epilepsy indeed morally and emotionally unstable?

Dmitry Morozov: As we have already said, some patients with epilepsy have ADHD, depression and anxiety. The doctor should pay attention to this when making a diagnosis. Anxiety and depression are often tougher than the fits themselves. Unfortunately, we don’t pay enough attention to the emotional component. The neurologist doesn’t pay attention to the mood. And if we start asking if the patient feels anxiety, if he has panic attacks, we will learn a lot of new things about him. And these corresponding states should also be paid attention.

Yelena Morozova: And these states appear because of myths. We should get rid of them as much as possible. It is important to know that in most cases this disease can be treated, and it is necessary to consider it correctly. I would advise doctors to talk with the patient, though even there is a shortage of time. Calm him down with the correct talk, covering his problem saying that there is no drama and there are modern approaches. Some patients tell me: “I will clearly go crazy later”. Yes, identity can change, but not necessarily. And the doctor’s task in the appropriate therapy is to avoid it.

Dmitry Morozov: Chekhov said that the doctor’s mission is not only to treat people but also spread knowledge. Our main goal is to tell you that epilepsy isn’t one disease. All people are different, and everybody develops it differently. And it isn’t a sentence but a disease that can be effectively controlled. We hope that when society understands this, the paradigm will change, stereotypes will be debunked. It is important to have as little darkness as possible and as much light in delivering this knowledge as possible.

By Lyudmila Gubayeva