Living in the invisible world of the chronically ill

When you think of some of the finest novels such as Oliver Twist, A Tale of Two Cities, A Christmas Carol or Great Expectations who comes to mind and what do you think of?

When you think of great works of art such as The Starry Night and The Potato Eaters whom do you think of? What comes to your mind when you think of the American writer, editor and literary critic- Edgar Allan Poe?

Although they all come from diverse backgrounds, time periods and places; there is one common factor, unifying them all and that is epilepsy. 

Surprising, yet true and so is the case for many other prominent figures such as Neil Young who lives with epilepsy, who can be quoted “Epilepsy has taught me that we are not in control of ourselves”; the 26^th President of the United States of America - Theodore Roosevelt and his lesser-known brother Elliot and legendary performer and Grammy Award-winner -Prince and the woman who made waves on “Britain’s Got Talent Susan Boyle.

Growing up, with majority of my life having dealt with the hardships and turmoil’s of head injury (about 23 years) has left me puzzled about my own health. I have never fully understood what epilepsy really was about; other than the fact that it was a mysterious condition that has 'causes' that I was not yet aware of.

Although I have a brief understanding of my health problems (-the diagnosis - Myoclonic epilepsy), I never really fully understood the other types of epilepsy. I questioned myself as to why I should remain so ignorant about this huge neurological disorder that was staring back into my face. 

All I knew was that I had been suffering from epilepsy since the age of 9 and I was now 32 years old. What I didn't know was that there were so many other forms of seizures, which could occur in different forms and affect people in ways.

Most of the time, people develop this condition while they are yet young and eventually outgrow it, but many people develop it as an adult as well. The seizures can be very disruptive and lead to many injuries and problems; but with medication and proper treatment it can be treated.

Epilepsy is a brain disorder where nerve cells/neuron's signal out abnormally causing strange emotions, sensations, convulsions, even behaviour, even muscle spasms, or even loss of consciousness. The person will have repeated seizures, with some times obvious reasons, but at other times it is pretty complicated to understand.

Seizures… what are they and how are they different from epilepsy?

 An Invisible lightning flashes through the unseen storm of your brain’s electrical storm. Rather than having normal connections that occur between the cells of the brain, here an electrical storm is occurring right inside of your brain AND you CANNOT do a thing to stop it. Such is the case with seizures; such has been the case with billions of other patients, across the world.

Seizures refer to events while epilepsy encompasses recurring and unprovoked seizures. They are also known as ‘fits’ or ‘attacks.’ They occur when there is a sudden interruption in the way the brain works; and a person can have a seizure without having epilepsy but a person cannot have epilepsy without having seizures. There are over 40 different types of seizures!!!! 

All seizures have a ‘BEGINNING’, ‘MIDDLE’ and an ‘END’; and it is not easy to spot all parts from each other. The symptoms may be EPISODIC (come and go), STEREOTYPIC (occur the same way or similar each time) and may be UNPREDICTABLE.

Before the seizure begins, usually there is an aura or warning symptom of a seizure; such as dizziness. However, everyone experiencing a seizure does not experience this aura.  The middle of every seizure is called as the ictal phase, which correlates with electrical seizure activity in the brain.

When the seizure ends, the postictal phase occurs which is the recovery period post the seizure. While some people immediately recover, others can take minutes to hours to feel the same again.

Understanding how epilepsy is caused and what causes seizures can vary from one person (suffering from the condition) to the next. It is mainly important to look at factors such as whether it has been genetically inherited or acquired at some age during one’s life (due to an event).

There are plenty of reasons such as brain malformations, lack of oxygen during birth, genetic factors, head trauma, stroke, trauma, etc. Most of the time these causes are labeled as cryptogenic which means that they do not have any specific, underlying cause. The other cause would be idiopathic which means that there is no neurological disorder but all of the symptoms remain consistent to epileptic syndromes.                  

All of this I didn't know about, and there was so much to understand!

What has just been fascinating is that our country is propelling access and acceptance, realising its true potential as global pharmaceutical markets are in the midst of major discontinuities. While the growth in developed markets will slow down emerging markets will become increasingly important and Indian pharmaceutical markets along with the markets of China, Brazil and Russia will spearhead the growth within these markets.

In addition to that, constant up gradation in technology and developments in Indian startups have also caught global attention, with the recent marvel being one having caught Ivanka Trump’s attention. The flagship product of 'Terra-blue' ‘TJay’ –this smart glove, is a biomedical device, which has embedded sensors, which can detect an oncoming epileptic seizure. Founder, Rajlakshmi Borthakur has claimed, “This could make life easier for many of the 50 million people worldwide who suffer from epilepsy, and for those who care for them."

TJay  

There are three different types of seizures that can occur, depending on which area of the brain that it occurs in. These include generalised seizures, focal seizures and unknown seizures.

1)     Partial Seizures- Here the epileptic activity occurs in only one area of the person’s brain. They can be of two types: simple and complex partial seizures.

2)     Generalised Seizures: Here, the epileptic activity occurs when both halves of the brain have epileptic activity. The patient will lose consciousness during the seizure. They are tonic-clonic (or grand mal) seizures and are usually very noticeable.

When a person suffers from this kind of a seizure their bodies stiffen, shakes, jerks and they lose consciousness. Generalised seizures are further classified into absence, myoclonic, tonic clonic, tonic and atonic seizures. 

3)     Unknown seizures: When the beginning of a seizure is unknown it is known as unknown seizure.              

       
       With constant global events, neuroscience conferences, workshops and programs being organised across the world there is so much to find out; whether it’s about the ketogenic diet, podcasts, or any other epilepsy related news.