The Truth About Epilepsy: It’s Time Awareness Was Spread


There are many serious misconceptions about epilepsy. A vast number of people know very little of the medical condition, usually reaching the very ignorant conclusion that people who are epileptic are prone to massive convulsions and are forbidden anywhere near strobe lighting (as a plain example). If only they knew the truth and not such an outdated notion. First of all, there are over 40 different types (yes 40, you read correctly) of the neurological condition, and in addition many different types of seizure.


I am writing about this topic as several weeks ago in a formative feedback session at university, one of the students presenting her work expressed an interest at looking into the condition further as part of her artistic research. I immediately volunteered to help assist her with any information she may require. The reason being that, as many of you may not already realise, I have a mild form of epilepsy myself. Juvenile Myoclonic Epilepsy to be precise, which I developed at the age of 15. Now, before any of you rant ‘oh my god, she could have a seizure at any time’, to be quite blunt absolutely anyone can have a seizure. In fact 1 in 20 people will have a seizure in their lifetime. They can be triggered by something you would least expect. And no, having a sudden ‘fit’ does not make you epileptic.

You may have previously heard about a woman who suffers a seizure whenever she hears a track performed by American singer Ne-Yo. She suddenly stiffens and starts vomiting uncontrollably. She resorted to having an operation were most of her left temporal lobe was removed from her brain in an attempt to calm down the seizures. This is a type named Musicogenic Epilepsy. In this case seizures occur in reaction to music and particular frequencies. I read about someone who even got seizures just by the sound of their morning alarm clock…

In my case however, my form of epilepsy (also referred to as Janz Syndrome) is triggered by awakening. My arms and legs contract (also referred to as jerks), but I remain entirely conscious. I lived with the condition for about 10 months before I was medically diagnosed and prescribed medication, which thankfully is very effective. I very rarely have a seizure these days, the last one being about six years ago.  But I’m one of the lucky ones. There are people out there with such major and debilitating forms of epilepsy – even drugs or a special diet (such as the Ketogenic diet) cannot control their seizures…

However there could be a breakthrough solution available to those with untreatable forms of epilepsy at some point in the near future. In 2013, researchers from the University of California San Francisco (UCSF) determined a medial ganglionic eminence (MGE) cell that had the ability to take control of seizures. This was discovered after cell transplant surgery performed on mice with epilepsy, which ultimately cured their seizures. According to their research, the cell transplant prevented “overactive signalling of nerve cells performed in the hippocampus region of the brain, responsible for learning and memory functions and linked with seizures”. This is of course a major discovery and identifies the incredible progress being made in the challenge for producing a cure, especially for those in desperate need of one.

However, finding a cure will not rectify the stigma attached to epilepsy and those who suffer from it. Professional awareness has to spread across the public, as many people know too little about the condition, even though a staggering 1 in 30 people in the UK have or will develop epilepsy at some point in their life. People need to know more and be aware of the different forms of seizure.


Now for some facts. There are several kinds of seizure: Tonic-Clonic, Absence, Myoclonic, Tonic, and Atonic, as well as Simple Partial and Complex Partial:

– A Tonic-Clonic seizure is the most common form of generalised seizure, were you lose consciousness and your body starts contracting uncontrollably.
– An Absence seizure is when you briefly lose your awareness or consciousness, lasting for an average of a few seconds. There are no convulsions.
– A Myoclonic seizure is a violent contraction of the muscles, mainly in the arms and legs. There is usually no loss of consciousness.
– A Tonic seizure is a brief loss of consciousness. The body can also stiffen and suddenly fall to the ground.
– Finally an Atonic seizure causes your body to go limp and collapse. There can be a brief loss of consciousness.

A Simple Partial seizure is where you develop a peculiar sensation, such as jerks or pins and needles in one part of your body or develop a strange taste. There is no loss of consciousness either. A Complex Partial seizure however is rather more complicated. You may experience strange behaviour, such as randomly wondering around aimlessly or fidgeting or mumbling. You can also develop temporary visions, emotions, sensations and fears. You may not remember having a seizure at all and have your awareness and consciousness affected.


A seizure is an abnormal burst of electrical activity in the brain that temporarily halts or disturbs messages being sent between brain cells, resulting in a particular seizure, depending in which part of the brain the electrical burst occurs. There is always usually a trigger behind a seizure, but there are unknown causes of epilepsy (Cryptogenic Epilepsy), as well as Symptomatic Epilepsy which is usually a result of damage to the brain or an underlying brain condition.


SUDEP (Sudden Unexpected Death in Epilepsy) is in fact rarer than some might think, and is usually associated with Tonic-Clonic seizures. According to research around 1 in a 1,000 people with epilepsy will die as a result, but measures can be taken to reduce the risks of SUDEP. For example, remembering your medication is an absolute must! And suffering a seizure alone and being seriously drunk also heighten the risk. It is not particularly known as to what causes SUDEP, but is believed to do with the area in the brain that is responsible for the heart beat and/or breathing, that can be affected during a seizure.


A seizure can be triggered by any manner of things. A few examples would be fatigue, stress or anxiety, a lack of food intake (low blood sugar levels), excess alcohol, even menstruation. And although many believe flash photography and strobe lighting have a large part to play in triggering a seizure, in fact only 4% of epilepsy sufferers are photosensitive.


I could go on about this particular cause, but going on about it will not spread awareness. I have distributed important facts as well as shared a small portion of my own experiences. If only some of you readers could pass on this information, useful and mindful information, on to others, I am certain it will make some difference in rectifying people’s attitudes and thoughts towards the condition, and make them realise the truth about epilepsy.


Currently the Winchester Editor of Wessex Scene, Kalisto is a fine arts student, keen writer and emerging artist with a mighty love of coffee...

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