There are more than 12 million persons with epilepsy (PWE) in India. These constitute around 17% of the 70 million PWE worldwide. Despite the availability of antiepileptic drugs (AEDs), there is a large treatment gap varying from 50 to 70% among PWE. The overall incidence (0.2-0.6 per 1000 population) and prevalence is (3.0-11.9 per 1000 population) in India. For treatable epilepsy, this gap can be attributed to poor education, poverty, cultural beliefs, stigma, and poor healthcare infrastructure; whereas for chronic epilepsy, this gap can be attributed to lack of proper diagnosis and treatment.
The burden of epilepsy, as estimated using the disability-adjusted life years (DALYs), accounts for 1% of the total burden of disease in the world.
This does not consider the morbidity caused by social stigma and isolation, which PWE in our country face; thereby intensifying the magnitude of the problem in India.
What is epilepsy? Does it mean that a person who has had a seizure once has epilepsy?
Seizures and epilepsy are not the same.
An epileptic seizure is a transient occurrence of signs and/or symptoms due to abnormal excessive or synchronous neuronal activity in the brain.
In simple words, a seizure is an event and epilepsy is the disease involving recurrent unprovoked seizures and consequences thereof.
A commonly used definition of epilepsy heretofore has been two unprovoked seizures more than 24 hours apart.
What precautions are important for people with seizures and epilepsy:
A risk assessment should be done for such people. It includes assessment for performing
the following activities and for the following conditions:
Bathing and showering, preparing food, using electrical equipment, managing prolonged or serial seizures, the impact of epilepsy in social settings, SUDEP (sudden unexpected death in Epilepsy), the suitability of independent living, where the rights of the child, young person or adult are balanced with the role of the carer.
For patients who throw acute full-blown generalized seizure, it is important for the bystanders to not panic. It is important that the patient’s oral cavity is free and not occluded by cloth/ fingers/ any other material. If feasible, a patient actively seizing should be always made to lie down in a sideways position, in a safe place. If a doctor has prescribed nasal midazolam, it can be administered in prescribed doses. Immediate medical attention should be sought while attending to a patient with active seizures.
With good compliance of medications, we can ensure that the seizures are maximally controlled.
Per se, it is difficult to predict who could develop epilepsy.
In developing countries, maintaining the hygiene of food consumption may help to prevent neurocysticercosis, one of the commonest causes of epilepsy in our country.
For expecting parents, approaching birth can be an ideal opportunity to review and consider the best and most helpful measures to start to ensure maximum safety for both mother and baby.
What are the Causes of Epilepsy?
Epilepsy can be caused by different conditions that affect a person’s brain. Some known causes include:
- Brain tumour.
- Brain infection from parasites (cerebral malaria, neurocysticercosis),
viruses (Herpes simplex), and bacteria, tuberculosis
- Traumatic brain injury or head injury.
- Loss of oxygen to the brain (for example,
- Some genetic disorders (such as Down syndrome).
- Other neurologic diseases (hereditary
For 2 in 3 people, the cause of epilepsy is unknown. This type of epilepsy is called cryptogenic or idiopathic. However, most of the so-called idiopathic causes now we do have a genetic basis, which can be discovered only after a detailed genetic analysis.
That said, there are very few epilepsies that are transmitted from one generation to another. Most of them are acquired, although genetic and environmental factors may result in the condition manifesting in a person.
What are the types of seizures, are all seizures similar?
The clinical presentation depends on a number of factors, chiefly: the parts of the brain affected, the pattern of spread of epileptic discharges through the brain, the cause of epilepsy and the age of the individual. The classification of epilepsies is controversial and has tended to focus on both the clinical presentation (type of epileptic seizure) and on the
underlying neurological disorder (epilepsies and epilepsy syndromes).
As a general awareness regarding seizures, there are partial and generalized seizures. Children may have other kinds like absence seizures and Epileptic spasms.
What tests are needed in People with epilepsy?
In general, a physician often needs basic evaluation to find the cause of epilepsy. This may include neuroimaging and an electroencephalogram (EEG).
For children, a battery of tests including neurometabolic workup, genetic analysis and neuropsychiatric assessment may be needed. The latter two also help in the assessment of epilepsy presenting de novo at any age and refractory epilepsies. For people who already are on medications, a physician may advise drug levels to guide the treatment and evaluate side effects.
Is epilepsy treatable? How long should be a treatment for epilepsy be? When can AEDs be tapered?
Treatment decisions are often individualized between a person with epilepsy and a physician. A physician often considers the patient profile and tailors the treatment offering the most suitable drugs in the armamentarium of epilepsy drugs.
At times, an incomplete description of seizure that went unwitnessed may mar the diagnosis. In such instances, clinicians use their best judgement in order to treat the
In any case, you consider yourself as an epileptic or not, it is paramount to consult a doctor
and decide upon medications accordingly. It is difficult to decide the duration of treatment a patient needs at the offset. A physician often considers medical issues, associated risks and comorbidities, electrodiagnostic and response to treatment before deciding if medications could be tapered.
Certain characteristics physicians consider characteristics like focal, myoclonic, tonic-clonic seizures and seizures that persist after treatment or need more than one drug to get controlled as indicators for prolonged treatment. Even in children, learning disabilities,
epileptiform abnormalities and history of focal seizures are poor prognostic
markers for treatment withdrawal.
We know of some good prognostic markers in childhood epilepsy. And children having a
a particular subset of epilepsy like typical absence seizures, Rolandic seizures, benign occipital seizures definitely outgrows the condition with age.
When to start medications for seizures?
The available literature demonstrates that although early AED treatment robustly reduces seizure recurrence risk in the short term, the prognosis for the development of epilepsy is unchanged. The indication for early AED treatment depends on the presence of key risk factors such as epileptiform abnormalities on EEG, a remote symptomatic etiology, a significant abnormality on neuroimaging, abnormal neurological exam, and a nocturnal seizure among others.
Its more or less akin to people with diabetes or hypertension or high BP, wherein, the risen sugars and BP levels are taken care of as long as a patient is on medications; while off medications, they stand increased risks of uncontrolled sugars and blood pressure respectively. This also means regular and monitored intake can control the condition extremely well.
Can seizures persist even after medications have been started?
This depends on several factors. A poor compliance or inappropriate or insufficient trial of
medications can result in poorly controlled seizures even after starting medications. Starting medications does not mean that the underlying cause for seizures is eradicated. More often than not, medications started for PWE are for preventing the abnormal excessive electrical discharge in the brain that culminates into seizures than addressing the underlying aetiology. This is because the underlying brain damage may not always be treatable.
What is refractory epilepsy?
Out of 3 epilepsy patients, one can have uncontrolled seizures despite receiving an adequate trial of more than two anti-epileptic medications.
What is the treatment for refractory epilepsy?
A physician often tries to control the seizures by changing and titrating the drugs. Epilepsy surgery is available at many centres, including ours for a certain subset of epilepsies. Vagal nerve stimulation and a bit expensive procedure – the responsive nerve stimulation are available for inoperable conditions.
For children, modalities like the ketogenic diet have also helped in some metabolic conditions with seizures as well as other refractory epilepsies.
Can people with epilepsy participate in sports?
In general, if a person is free from seizures he/she and is on antiepileptic drugs, most of sports and leisure activities can be undertaken.
The problem arises when the seizures are frequent and poorly controlled. For them, any type of activities, which may endanger their life or that of others due to an accident resulting from a seizure, should be avoided.
Can people with epilepsy get married?
Today a person with epilepsy can have a legally valid marriage and epilepsy is no more an illness to claim for divorce. A woman who is in the reproductive age group gets appropriate counselling from the treating physician. The latter adjusts medications suitable to this age group. Women with difficult to control epilepsy should have periodic assessments and medications may be adjusted/ changed before they conceive.
PWE have the right to live as normal individuals and can have highly successful careers and family lives. People who have created history like Theodore Roosevelt, Olympic athlete Dai Greene, Prince an American singer and writer, the author who is a legend Agatha Christie, Olympian Florence Griffith Joyner, composer George Gershwin, Alexander the Great who conquered the world. The list is really exhaustive—all faced epilepsy- and created wonders this world has witnessed.
Socrates, Julius Caeser, Napolean I of France all were said to suffer from epilepsy. The world still remembers them for their greatness, not for their ailment.
Concluding, epilepsy is a condition that if properly attended to, treated and cared may result in a perfectly normal lifestyle. There is no reason why a person with epilepsy that is well-controlled should not be able to do something a normal person does. There is always a ray of hope with newer treatment modalities for the patients with hitherto uncontrolled seizures despite proper medications. Epilepsy is a condition, like any other medical condition- be it diabetes or hypertension. It should not be stigmatized upon. Both these conditions need precautions and meticulous treatment, which are easy to follow and need lifestyle adaptation. Small wonder if people with epilepsy can live an absolutely normal healthy lifestyle, have blooming families and carriers if all the things are taken care of!
Dr. Madhuri Khilari
Neurologist and Epileptologist,
Apollo Hospitals, Jubilee Hills.
Apollo Hospitals, Jubilee Hills.
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