International Epilepsy Day: Misconceptions and how Covid-19 affects the neurological disorder

Every year, the second Monday of February is observed as International Epilepsy Day. This year, it falls on February 13 and the theme is "stigma". Very often when a person suffers from a seizure people don't know how to react. Furthermore, they are stigmatised and may often face ridicule or be at the other end of receiving help, even with a lot of people around them and this may be due to the lack of awareness.

So, what is epilepsy? According to Dr Jigyasha Sinha, consultant, paediatric neurologist and epileptologist, Kokilaben Dhirubhai Ambani Hospital, epilepsy is "a disease of the brain where recurrent seizures occur due to disturbed electrical activity of the brain. It can be caused due to structural abnormality of the brain, genetic defects, metabolic derangements or even unknown reasons." In India, it is estimated that at least 10 - 12 million people suffer from epilepsy, that means one patient for every thousand, according to Dr Neelu Desai, consultant, paediatric neurologist and epileptologist, PD Hinduja Hospital & MRC, Mahim. As far as children go, Sinha says, less than one per cent under the age of 17 are affected by it.

On International Epilepsy Day, Mid-day Online spoke to Sinha and Desai to understand more about the disease. They not only share how people suffering from it are affected but also explain the common misconceptions surrounding it and how Covid-19 has a negative impact on the disorder.

What is epilepsy and how is it caused?
Sinha: Epilepsy is a disease of the brain where recurrent seizures occur due to disturbed electrical activity of the brain. It can be caused due to structural abnormality of the brain, genetic defects, metabolic derangements or even unknown reasons.

Desai: Epilepsy is one of the common neurological disorders which predisposes the brain to generate repeated unprovoked seizures. A practical definition consists of the occurrence of at least two unprovoked seizures more than 24 hours apart. It can be caused due to multiple reasons like structural defects of the brain, genetic causes, infections, autoimmune disorders, metabolic defects and many unknown reasons.

How can a person know if they are suffering from epilepsy?
Sinha: A child may have loss of consciousness with abnormal involuntary stiffening or jerking of limbs and body or may have brief loss of awareness of the surroundings with unusual behaviour like staring, chewing, lip smacking, vomiting etc. This may be followed by sleepiness and tiredness.

Desai: If a person or family member or friend suffers from the following symptoms, then they should consult a neurologist:

- Jerking and/or stiffening of the entire/one side of body

- Daydreaming (absence seizures)

- Unusual sensations such as fear/ strange taste /odour, or a rising feeling in the stomach.

- Excessive startling

- Any unusual behaviour

- Eye deviation to one side, inability to see

During a seizure, the patient may be aware of what is happening or may be unconscious. Seizures can occur in sleep as well as wake state. Patients may remain drowsy or feel exhausted or confused or complain of headache after a seizure.

How can people know if another person suffers from epilepsy, especially those who are not family members?
Sinha: If a child is showing any loss of consciousness with involuntary stiffening or jerking of body/brief blanking out or staring spells without being aware alone with unusual behavioural mannerisms happening repeatedly, the child could be evaluated after seeking help of the neurologist/ epileptologist and investigated for the same in order to confirm the disease. This would often require a electroencephalography or EEG/neuroimaging and basic blood tests.

Which group of people are most affected by epilepsy? Is it seen more in a particular age group?
Sinha: Although Epilepsy is common in all age groups, and about less than 1 percent of children suffer from epilepsy below 17 years of age, different types of epilepsy can manifest at certain paediatric age groups. The peak incidence can occur in infancy itself.

Desai: Seizures can occur in any age group or gender. Though almost 70 per cent of epilepsies start in childhood, they may continue to get seizures till adulthood.

Can epilepsy be treated and prevented?
Sinha: Most of the Epilepsy can be treated with medications and some may require surgical interventions. Although genetic epilepsy may not be prevented, preventing traumatic brain injury can certainly help in avoiding one of the risk factors for epilepsy.

Desai: Yes, most epilepsies are treatable with the help of one or two medications. About a third of cases do not respond and are drug refractory. These can be treated by special diets, epilepsy surgery or neuromodulation techniques.

Does consuming particular food help in the treatment of people suffering from epilepsy?
Sinha: There are certain diets which can help in seizure reduction like a strict Ketogenic diet and low glycemic index diet. But this could be achieved only with the help of a clinician and a dietician. However, one could avoid consumption of too much processed food, high sweetened food in order to prevent certain comorbidities with epilepsy too.

Desai: In some patients with epilepsy, ketogenic diet or modified Atkins diet or low glycemic diet may help controlling seizures. However, this treatment should only be taken under supervision of a trained medical professional.

What are the common misconceptions about epilepsy?
Sinha: The common misconceptions are that epilepsy is caused by possession of evil spirits, that it is contagious, that it is some form of madness, that having a family member with epilepsy should be hidden. There are others like children with epilepsy should not go to school, that a seizure can be terminated by putting a spoon in the mouth or sprinkling water or making them smell onion or leather shoes, that women with epilepsy cannot have children or marriage can cure the disease. They are false.

Desai: Common myths about epilepsy are:

- It can transmit from one person to another

- Medicines can be interchanged or stopped when seizures are controlled

- Medicines can cause brain damage

- Medicines can be self-adjusted

- Normal EEG or MRI rules out epilepsy

- Patients with epilepsy cannot go to school or lead normal lives.

What are the challenges that a child suffering from epilepsy goes through?

Sinha: Learning difficulties, concentration and attention deficits, mood changes, anxiety and feeling low, socially outlasted at times, sleep disturbances, consequences due to seizures per say like sustaining injuries, headaches and sometimes medication related side effects can be quite challenging for an epileptic child.

How can people help those suffering from epilepsy, generally and while travelling with children in public transport?
Sinha: For children, after a diagnosis of epilepsy has been made a parent should ensure compliance with medications, avoid the seizure triggers and recognise warning signs of a seizure. With the help of their clinician, they should work to figure out the best way to organise and monitor the child's safety when they are away from home, watch for sudden changes in behaviour, encourage normal activities, and stay positive. Parents can learn the rescue treatment/ first aid of seizure from the clinician and speak about it at school.

While travelling a parent should be aware of first aid of seizure, ensure medication is given and sleep is adequate, and the child is seated in a safe, less crowded place.

Desai: If you see a person getting a seizure

- Do not panic.

- Make him/her lie down on any one side.

- Remove all sharp objects/glasses from the surroundings. Loosen clothing.

- Time the seizure

- Do not put anything in mouth till he is fully conscious

- Do not restrain forcefully, this may cause injuries.

- If possible, video the event, especially if the doctor has asked for it.

- In case the seizure goes on for 2-3 minutes, use emergency medicine prescribed by his doctor if available

- If the seizure continues despite the emergency medicine or the patient suffers injuries or there is a long recovery time, take the patient to the nearest hospital.

People with uncontrolled epilepsy should not drive. However, those with well controlled epilepsy for more than a year shall be able to drive. Those who are stopping or reducing medicines, should also not drive till a year passes of seizure freedom.

Does Covid impact epilepsy in any particular way?
Sinha: Covid-19 has had some negative impact on epilepsy. Increased seizure frequency, frequent mood changes, anxiety, depression and dependency on screen for online classes or entertainment leading to further increased seizures/ headaches has been noted.

Desai: Any infection can increase the chance of getting seizures. Those with any neurological involvement due to Covid may be prone to getting more seizures.

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