Early days of my residency, like any other resident doctor of our country, I was on one of those night duties which I could never forget. It was a few minutes past 5 am when a girl in her teens (probably 18 years old) was brought to the emergency room by her parents.
She had woken up early around 4 am to study for exams. But when her mother casually checked on her, she was found to be lying unconscious on the floor with frothing from her mouth, tongue bite & had passed urine. Her eyes were closed & she was unresponsive.
By the time they reached the ER, she was conscious and was asking for details of what had happened. On detailed history, she reported having brief shock-like jerks for a couple of years for which she had never really paid any attention. In Neurology its only a minority of patients who present with such a classical picture.
I felt proud of myself for delivering the diagnosis with minimal aid of investigations. Juvenile Myoclonic Epilepsy is what her prescription read and I had started her on the medications needed. Upon learning that it was rather easy to manage this kind of epilepsy, the entire family felt relieved.
A couple of months later, same ER room setting, around 10 am, an ambulance rushes in with a loud siren sending a wave of panic in the ER. As I walked towards it, I could see a few familiar faces. You see it’s very easy to forget the names and details of individual patients and their relatives when you attend to hundreds of patients daily.
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Looking at me the man screamed at the top of his lungs “Doctor, Kavya has met with accident, she is not moving at all, please save her! .” My panic only doubled as I realized that she has sustained a massive head injury & more importantly ‘she was not breathing’!
What followed is still a blur to me, almost an hour of unsuccessful CPR. Kavya had a seizure while driving to her school in peak hours of traffic and met with a fatal accident. It is then that the father revealed they never started the medicine prescribed & didn’t get the advised EEG test because a “respectable family friend “had suggested to them that “such events are common among teenagers and there is no need to start medications for same & that she doesn’t have epilepsy!”.
Epilepsy is a chronic noncommunicable disease of the brain that affects around 50 million people worldwide. It is characterized by recurrent seizures, which are brief episodes of involuntary movement that may involve a part of the body (partial) or the entire body (generalized) and are sometimes accompanied by loss of consciousness and control of bowel or bladder function.
With written documents tracing the condition’s history back to 4000 BCE, epilepsy is among the earliest known medical diseases worldwide.
However, for centuries, epilepsy has been associated with fear, misinformation, prejudice, and societal stigma. This stigma continues in many countries today and can impact the quality of life for people with the disease and their families as we saw happening with Kavya.
Excessive electrical discharges in a cluster of brain cells cause seizure episodes. Such discharges can occur in several brain regions. From the smallest attention-deficit or muscular twitches to severe and protracted convulsions, seizures can take many different forms. The frequency of seizures can also differ, ranging from fewer than one per year to multiple per day.
Seizures and Epilepsy are not synonymous. Epilepsy is defined as having two or more unprovoked seizures.
How do seizures manifest?
Seizures can have a variety of characteristics, depending on the part of the brain affected and the extent of the disruption. There are transient symptoms that manifest as loss of awareness or consciousness, such as jerking and stiffening of limbs, disorders related to primary sensation (such as visual blurring, decreased hearing or auditory hallucinations, and altered taste), change in mood, confusion or other cognitive abilities.
Individuals with epilepsy frequently experience psychological disorders like excessive worry and sadness in addition to a higher frequency of physical issues including fractures and bruising from seizure-related traumas. In a similar vein, individuals with untreated epilepsy have a three times greater chance of dying before earlier than the general population, with low- and middle-income nations and rural areas having the highest rates of early mortality.
Many of the leading causes of death associated with epilepsy include falls, drowning, burns, and protracted seizures which can be easily prevented with timely diagnosis & appropriate treatment of epilepsy.
What causes Epilepsy?
Epilepsy is not contagious. Although many underlying disease mechanisms can lead to epilepsy, the cause of the disease is still unknown in about 50% of cases globally. The causes of epilepsy are divided into the following categories: structural, genetic, infectious, metabolic, immune and unknown. Examples include:
- brain damage from prenatal or perinatal causes (e.g. a loss of oxygen or trauma during birth, low birth weight);
- congenital abnormalities or genetic conditions with associated brain malformations
- a severe head injury
- a stroke that restricts the amount of oxygen to the brain
- an infection of the brain such as meningitis, encephalitis or neurocysticercosis
- certain genetic syndromes; and
- a brain tumour
Whom to meet if I / my loved ones are suffering from Epilepsy?
Typically, a Neurologist is a doctor who carries expertise in the diagnosis and treatment of various types of epilepsies. Diagnosis needs detailed history from the people who have witnessed the seizure episodes (family members/friends), basic blood work, an EEG and Neuroimaging like MRI/ CT scan.
In a few of the cases where EEG and MRI do not give additional information – the next line of investigations are carried out like Stereo EEG, and depth electrodes which are called invasive monitoring. In our country currently, there are around 38 comprehensive care centres which are dedicated to the management of difficult-to-treat epilepsies.
Can epilepsy be treated?
I always say to my patients that Epilepsy is one of the good diseases of the brain to have because we can treat it effectively!
One can manage seizures with medications. Using antiseizure medications appropriately can help up to 70% of epileptics become seizure-free. After two years without seizures, stopping antiepileptic medication may be considered, although this decision should be made after considering pertinent clinical, social, and personal issues.
The two most reliable indicators of seizure recurrence are an abnormal electroencephalography (EEG) pattern and a documented aetiology of the seizure.
It was estimated that in India approximately 50% of people with epilepsy may not obtain the necessary treatment in the initial 5 years of onset. We refer to this as the “treatment gap.” Patients who may not respond well to medication therapies may benefit from surgery.
Can Epilepsy be Prevented?
If you are wondering if epilepsy can be prevented, the answer is a clear Yes. An estimated 25% of epilepsy cases are potentially preventable. Preventing head injury, for example, by reducing falls, traffic accidents and sports injuries, is the most effective way to prevent post-traumatic epilepsy.
Adequate perinatal care can reduce new cases of epilepsy caused by birth injury.
Cardiovascular risk factor reduction, such as measures to prevent or control high blood pressure, diabetes, and obesity, as well as abstaining from tobacco and excessive alcohol consumption, is the main emphasis of the prevention of epilepsy linked to stroke.
Central nervous system infections are common causes of epilepsy in tropical areas like our country. Elimination of parasites in these environments and education on how to avoid infections can be effective ways to reduce epilepsy worldwide.
Social and economic impacts
Over 0.5% of the world’s disease burden, a time-weighted estimate that includes years of life lost to premature death and time spent in worse-than-optimal health, is attributable to epilepsy.
Out-of-pocket costs and productivity losses can create substantial burdens on households.
The stigma and discrimination that surround epilepsy worldwide are often more difficult to overcome than the seizures themselves. People living with epilepsy and their families can be targets of prejudice. Pervasive myths that epilepsy is incurable, contagious, or a result of morally bad behaviour can keep people isolated and discourage them from seeking treatment.
International Epilepsy Day
International Epilepsy Day is an annual awareness-raising initiative organised by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE). It’s observed on the 2nd Monday of every February worldwide.
It is an opportunity to raise awareness of epilepsy, what it is, how it can be treated, and what is needed to bring treatment to all people who need it.
The theme this year is: ‘Milestones on My Epilepsy Journey’. People with epilepsy as well as any healthcare worker who is involved in epilepsy care can send their experience in the form of any artwork like paintings or drawings, photography or photomontage, pottery or sculpture, beadwork, embroidery, or needlework.
Similarly, we at Manipal Hospital Yeshwanthpur, Bengaluru are celebrating this day to create awareness. I take pleasure in wishing all of you a happy International Epilepsy Day & hope that I have succeeded in adding a point or two to your existing knowledge about Epilepsy!
By Dr Avinash Kulkarni, Consultant- Neurology, Manipal Hospital, Yeshwanthpur
Disclaimer: The opinions and assertions expressed in this article are solely those of the authors and do not necessarily reflect the views of Udayavani. The publication holds no legal responsibility for the content presented. 