Dispelling Myths about Epilepsy

“ We knew that he was seizing…we had seen seizures in a video played once, in a hospital…we gave a metallic object in his hands…thankfully, he stopped seizing thereafter” or “we took the child to a priest…he has a talisman and herbal cure for this condition” or even, “ we were asked to take medications for three months. We did not follow up again. Now our child has had seizure recurrence.” Every neurologist is familiar with similar information coming from the patient’s families.

This article will mainly address the actual questions asked by patients in epilepsy clinic and dispel the myths associated with epilepsy management.

“ What should I do if my father seizes the next time, if I should not give any metallic object in his hands?”

There is no science behind this commonly observed practice -sadly, even amongst the educated people.

World epilepsy society recommends the 3 S: Stay with the person having a seizure.

Make sure they are Safe.

If they convulse, turn them on their Side.

Never put anything in their mouth and if the seizure persists longer than 5 minutes, call the emergency.

My sister doesn’t have seizures. She only ‘get’s lost and blabbers’ or ‘ its more like a giddiness spell’ , not like the violently seizing patient’s we have seen.

Seizures can have multiple forms, that include staring spells, sudden falls, abnormal irrelevant speech, abnormal behaviour and gestures; that are momentary. Frank convulsions is just one of the seizure types. So please don’t hesitate to consult a neurologist if any of these symptoms are present. Partly, this ignorance, could be because of the stigma epilepsy carries today. It is high time every person with epilepsy has access to the care and treatment they need, and the opportunity to live free from stigma and discrimination in all parts of the world.

“Our child cannot have seizures. Nobody in our family had seizures”

• Epilepsy can affect anyone with a brain. According to the World Health Organization, epilepsy is the most common serious brain disorder worldwide with no age, racial, social class, national or geographic boundaries.

• Over a lifetime, one in 10 people will have a seizure, and one in 26 will be diagnosed with epilepsy. There are 12 million people in India living with active epilepsy. Yet, it is one of the most neglected conditions, with minimal awareness amongst people.

• Three quarters of people living with epilepsy in low-income countries do not get the treatment they need, increasing their risk of dying prematurely and condemning many to a life of stigma

• So epilepsy is attributable to known genetic causes in about 30-40 % of the cases. This, is mostly, a polygenetic inheritance, which means that this does depend on multiple genes and may not follow the dynamics of single gene inheritance. Others, however, may have acquired causes.

“My child has seizures, with brain injury at birth. We want a medicine to cure that.”

Brain injury at birth may result in scarring of the brain, which does not melt away with any kind of medications. This scar may, result in epilepsy, which can be treated.

When an epileptologist evaluates a patient with epilepsy, treatment is titrated according to the kind of epilepsy, kind of seizures, associated clinical findings, comorbidities and medicines thereof, presence of structural abnormality in brain, behavioral abnormalities, EEG abnormalities. Essentially most of the so called anti-epileptic medications are more of ‘anti-seizure’ medications. Meaning, they do little to curb the underlying pathology, however they do suppress the seizures, as long as they are regularly administered. Some of the epilepsies may need long term, even life-long medications. Having said so, there are some kinds of epilepsies, that children do outgrow eventually. In such cases, it is possible to taper the medications. The best person who can help you in making decision about this is your epileptologist.

“My niece gets frequent seizures despite being on three medications. Are all seizures difficult to control?”

Here’s the good news. In epilepsy, majority of the seizures (2/3rds) are easy to control. The remaining third can have uncontrolled seizures despite receiving an adequate trial of more than two anti-epileptic medications.

“A solution for these uncontrolled seizures?”

Your Epileptologist may try to control the seizures by changing and titrating the drugs. For the ones that don’t respond, epilepsy surgery , Vagal nerve stimulation, Responsive Nerve stimulation, ketogenic diet are other viable options. Please meet your epileptologist to determine which option may suit you the best.

“ Is there any way we can stop seizures from happening?”

We all strive towards seizure freedom. And that’s the aim of world epilepsy society too- to fight epilepsy together. A good deal of simple lifestyle modifications- sleep, diet, regular medications, abstinence from recreation drugs could work wonders! But creating awareness about epilepsy is the most important of all. If you have refractory epilepsy, please contact an epileptologist to chart a plan for the best control of your seizures.

“ I have structural epilepsy- with last seizure six months ago. I don’t want to take medications every day, please consider me for epilepsy surgery”

Well, epilepsy surgery is not the answer to all the epilepsies. It is for definite refractory focal epilepsies with surgical amenableness. Which means, an epilepsy originating from an anatomically identifiable and distinct substrate; removal of which would not be deleterious to vital brain functions like memory, movements, vision, cognition. With the exhaustive time and cost involved in epilepsy surgery, seizure freedom with best tolerated antiseizure medication is preferable. With unresponsiveness to two or more medications, epilepsy surgical evaluation, however has significant importance.

Today there is a dearth of action to address gaps in epilepsy knowledge, care and research. A tiny help in bridging this can help a PWE (persons with epilepsy) access the care he needs, opportunity to live free from stigma and discrimination. Taking a person to the epileptologist, encouraging women with epilepsy to have families, and creating awareness in these couples, financial aid for the poor and for research on epilepsy, etc. A bold step by an educated youth- is what the country calls for.