EPILEPSY- FACTS ABOUT TREATMENT

Radha (name changed), a psychology student suffered from epilepsy. A bright young girl as she was, she never let her spirits get daunted by the recurrent seizures that came in her way while reading, counseling, traveling. She had a multifocal onset epilepsy that was not amenable to surgery and often felt quite drugged by the five medications she was on. She herself was a psychologist and she could convince herself to accept this condition and live on with it. Her sprits would often inspire my mundane life and I often quote her example to my patients to egg on to their dreams and not let themselves down just because they have epilepsy. Today Radha is a successful counselor and a happy person. She has a cause, a passion and a drive to fight for. There are occasions when she feels low, but so do all normal people without any disease. For many persons with epilepsy, the medical scenario may not be as dismal as her. For many, with epilepsy it is an easily controlled disorder and most can live normal lives with appropriate treatment. This article is aimed at Persons with epilepsy and their families, to create awareness on nature of the problem, magnitude of it, and what we can do to control it.

How significant is this problem of epilepsy in our country?

There are more than 12 million persons with epilepsy (PWE) in India. These constitute around 17% of the 70 million PWE worldwide. Despite availability of antiepileptic drugs (AEDs), there is a large treatment gap varying from 50 to 70% among PWE.

Today poverty, poor education, cultural beliefs, stigma, poor healthcare infrastructure have resulted in escalation of the magnitude of this 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.

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. The ILAE definition of epilepsy includes the psychosocial, cognitive and neurobiological aspects as well.

What precautions are important for people with seizures and epilepsy:

A risk assessment should be done for such people. It includes assessment for performing following activities and for following conditions:

Bathing and showering, preparing food, using electrical equipment, managing prolonged or serial seizures.

It is important to assess 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 against the role of the carer.

It is important for PWE in remission to consult their epileptologist to determine if they can drive or not. Depending on the seizure freedom the practices and regulations differ from country to country.

For patients who throw acute full-blown generalized seizure, it is important for the bystanders to not panic. It is important that 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 your epileptologist has prescribed nasal midazolam, it can be administered in prescribed doses. An immediate medical attention should be sought while attending to a patient with active seizures.

Can seizures Be prevented?

With a good compliance of medications, we can ensure that the seizures are maximally controlled. In addition, having adequate sleep and minimizing stress by adhering to a sleep schedule does help in controlling seizures.

Per se, it is difficult to predict who could develop epilepsy.

In developing countries, maintaining hygiene of food preparation and consumption may help preventing 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.

Children with photosensitive epilepsies should take appropriate precautions to avoid the video games and animations involving light flashes in display.

What are the causes of Epilepsy?

Epilepsy can be caused by different conditions that affect a person’s brain. Some known causes include:

§ Stroke.

§ Brain tumor.

§ 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, during birth).

§ Some genetic disorders (chromosomal, metabolic disorders).

§ Other neurologic diseases (hereditary dementias, ataxias).

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 genetic basis, which can be discovered only after a detailed genetic analysis.

All 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 the epilepsy and the age of the individual. The classification of the 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, your Epileptologist will try to do basic evaluation to find the cause of epilepsy. This may include neuroimaging and an electroencephalogram (EEG). Of children a battery of tests including neurometabolic workup, genetic analysis and neuropsychiatric assessment may be needed. The latter two also help in assessment of epilepsy presenting de novo at any age and refractory epilepsies. For people who already are on medications, your epileptologist may advice drug levels to guide the treatment and evaluate side effects.

Is epilepsy treatable? How long should be treatment for epilepsy be? When can AEDs be tapered?

Treatment decisions are often individualized between a person with epilepsy and treating Epileptologist who will often consider 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 condition.

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. An experienced eileptologist considers medical issues, associated risks and comorbidities, electrodiagnostics and response to treatment before deciding if medications could be tapered.

Certain characteristics of seizures described as 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. Children having a particular subset of epilepsy like typical absence seizures, Rolandic seizures, benign occipital seizures may outgrow 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 brain that culminates into seizures, than addressing the underlying etiology. 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:

Refractory epilepsy is best managed by an epileptologist, who is an neurologist with special interest in epilepsy . An epileptologist will titrate the treatments of epilepsy according to the type of epilepsy, and accordingly by optimizing medications. Epilepsy surgery should be considered in all cases of refractory epilepsy. Epilepsy surgery is available at many centers, including ours, for a certain subset of epilepsies. These are refractory epilepsies amenable to surgery, in which a clear focus or seizure origin is found, and removal of that focus is feasible. Vagal nerve stimulation and a bit expensive procedure – the responsive nerve stimulation are available for the inoperable conditions. For children, modalities like ketogenic diet have also helped in some metabolic disorders with seizures as well as other refractory epilepsies. There are novel therapeutic neuromodulation techniques coming up for management of refractory epilepsies. Your epileptologist will give you more information about this.

How important is Epilepsy surgery in refractory epilepsy?

Epilepsy surgery should be considered in all patients with refractory epilepsy.

Considering that around 25% of the 12 Million population with epilepsy would have refractory seizures, there would be at least 500,000 candidates for epilepsy surgery in India at any given time point. However, only two in 1000 eligible patients undergo epilepsy surgery in India, with growing pool of refractory epilepsy subjects.

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 the 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. Usually, woman who is in the reproductive age group should seek for an 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 right to live as normal individuals and can have highly successful carriers and family lives. People who have created history like Theodore Roosevelt, Olympic athlete Dai Greene, Prince an American singer and writer, 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 Caesar, Napoleon I of France all were said to suffer from epilepsy. World still remembers them for their greatness, not for their ailment.

For further doubts/ questions please contact Dr. Madhuri Khilari, Consultant Neurologist and Epileptologist, Apollo Hospitals, Jubilee hills, Hyderabad.

write to: dr.madhuri.khilari@gmail.com