Dr Shaurya Darbari
Epilepsy is a strange disease. It is not strange in that it is rare; around 10 million people in India i.e. 1% of its population have been diagnosed with epilepsy. India, in fact, shares one-fifth of the burden of patients with epilepsy in the world. It is not strange in that we don’t know what causes it; strides in science and technology have given us insights into what causes an epileptic seizure. It is not strange in that it cannot be cured. It is strange because many still, including the educated classes, in different parts of India, do not think of epilepsy as a ‘disease’.
I remember attending a jagrata when I was a child. That jagrata was held because one household had a spate of bad luck in their finances. Many guests attended, and most were educated and from well-to-do backgrounds. It was already 3 am and the loud music and the flashing lights were already taking a toll on the sleep-deprived guests. And perhaps that was the best recipe to induce a seizure in one of the guests, a young female. And instead of providing first aid and rushing to a hospital, people were extolling on the success of thejagrata, that the evil spirit that was causing all the financial woes had finally shown itself. “Mata aagyi! (The goddess has come!),” shouted people without wasting an instant, and striking the lady with brooms and shoes, while she was seizing and frothing from her mouth. I don’t know if their financial woes were finally cured, but certainly, the affected lady didn’t receive the medical attention she should have, something that I realized years later when I started studying medicine.
Our brain is a complex network of neurons, each communicating precisely with one another through the means of electric and chemical signals, the complexity of which modern science is just beginning to fathom. These neurons and their connections are what make us who we are and determine how we act and react to situations. In epilepsy, a group of these neurons becomes autonomous, firing at will and at unexpected times, and these waves of electrical activity cause what we call a seizure. This barrage of abnormal electrical waves risks the death or permanent damage of the neurons. There are numerous causes that lead these abnormal neurons to fire, and this is an active area of research, but old head injury, insults to the brain during birth or before, or some genetic abnormalities and congenital malformations are some of the most common causes.
Seizures are of many types. In what was earlier called Generalized tonic-clonic seizures, the body starts to stiffen up suddenly or violently shake, and one tends to lose consciousness, and then it becomes dangerous, like what if during a seizure, one was driving or maybe climbing stairs? Another type is Absence seizures, which is more common in children, with sudden lapses in attention and blank staring, which at times may reflect on their school performance.
It is not easy to recognize seizures, and sometimes even professionals like us fail to recognize one when presented with it. But it is always better to be safe than sorry. Detailed history taking with an emphasis on the sequence of events by a professional can most of the time identify a seizure, but sometimes the help of an electroencephalogram (EEG) is needed to identify the seizure and its type. In EEG, several electrodes arranged like a crown are worn over the head and it can record the electrical activity of the brain, helping us to diagnose epilepsy and in some cases, point to an area of the brain that is causing it.
The first treatment of epilepsy is medication (anti-epileptic drugs or AEDs for short) which have to be taken regularly without fail. Usually, this is all that is needed to control epilepsy, and these medications can usually be stopped after 2 years. There are more than 30 types of AEDs in the market, with newer ones regularly being introduced. Not all AEDs act in the same way and not all of them work for every type of epilepsy. Their doses often need to be adjusted according to the patient and sometimes two or more different types of AEDs are added to the mix.
Sometimes seizures occur despite maximum doses of multiple AEDs taken regularly, and this is called refractory epilepsy. These patients are often asked to undergo multiple additional tests and if that focus of abnormal neurons is found, they are the best candidates for epilepsy surgery and after it, more often than not achieve considerable seizure control or even seizure-free life.
The concept of neurosurgery for epilepsy isn’t recent and actually started before medications to control seizures were discovered. But this got into its modern avatar in the 1970s when such surgeries became much safer. With modern diagnostic tools making the identification of seizure focus more accurate, epilepsy surgeries have become one of the most commonly done neurosurgical procedures in the world. And for some types of seizures, surgery has a success rate of even more than 90%.
These surgeries should be preferably done in centers with advanced diagnostic techniques which aid in identifying the correct patient. Usually a team of doctors from different specialties sit together, individualizing every patient, and after going through every test report, only then reaching a decision to operate through consensus. Our job as a team of specialists is to ensure that the correct patient with the correct disease is identified to achieve the maximum benefit. The patient and the family are extensively counseled throughout the process.
But more often than not, the limiting factor of achieving a successful outcome is not the treatment, but the treatment-seeking behavior of patients. There is still a large gap in understanding epilepsy as a disease and that it is fully curable. Diagnosing and treating epilepsy is a long process and requires multiple follow-up visits so that the right dosages of the right drugs are determined. Many patients are afraid of AEDs, thinking that they are damaging their brains and many stop taking them altogether, which eventually culminates into another seizure. And we never know when the next seizure may be life-threatening. Modern AEDs albeit with minor side effects, are incredibly safe and do not affect one’s thinking or personality. Many people still think of epilepsy as some demonic possession and prefer spiritual means to medical treatments, which not only leads to delays in treatment but also hampers the development of the brain when the seizures are uncontrolled.
The world observed International Epilepsy Dayon the second Monday of February and we hope that the stigma around the disease and fear of its treatment, especially surgery, is cleared. We know it’s a long process, but we believe more people will get aware about this and seek treatment, leading perfectly normal lives which are seizure-free.
The author is Assistant Professor Neurosurgery All India Institute of Medical Sciences Vijaypur (Jammu) J&K
Follow our WhatsApp channel
