18-year-old Amy* was in an argument with her sister when suddenly she woke up on the floor, totally confused and extremely scared. Several faces were looking down at her but she could not recognise any of them.

One of those faces was of her four-year-old niece looking down at Amy with a look of fear which she describes as an image she will never forget.

This was Amy's first experience of a seizure and what she was going through was the stage following a seizure that is depicted by confusion and drowsiness.

Following this Amy had the necessary tests done to rule out any other problems and the seizure was deemed a one-off. Six months later, however, Amy had another seizure.

At this point, Amy was started on medication and the clinical diagnosis of epilepsy was established. Her condition was stable for a while but then she started to deteriorate.

Doctors could not find the right medication and Amy was having one or two seizures per month up to sometimes even twice a day.

Amy also had other types of seizures and experienced an inability to speak properly, called dysphasia. She would also get feelings of sadness, panic, deja vu and dizziness lasting seconds which appeared out of nowhere. These are another type of seizure.

In Malta, over 4000 people suffer from epilepsy yet the condition is rarely spoken about. Rebekah Cilia from The Malta Independent spoke with Amy to understand how epilepsy has affected her life and the stigma associated with the condition.

What is it like living with epilepsy?

Although today my epilepsy is controlled, never cured, living with epilepsy has not been the easiest thing in the world for me. I had to struggle with the idea of having to change my lifestyle. I had to grasp the idea that I have to take medications for the rest of my life.

I had to deal with the constant fear that I will have a fit, especially in public - something that still haunts me today, even at this very moment.

Although I have not had a seizure for over a year and a half the condition still controls me because of the fear associated with a having a seizure.

What are the limitations associated with epilepsy?

For one, you cannot drive if you have epilepsy unless you have been free from seizures and are controlled on the same medication for over a year.

There are also lifestyle changes associated with epilepsy which is basically working around triggers that may cause a seizure. Having said this, these triggers do not always cause a seizure.

Getting enough sleep is essential and this is very difficult in my case because I am a night-owl. This was initially a big change for me especially for a teenager wanting to go out to parties and staying out late.

Alcohol intake also has to be regulated because alcohol can lead to fits. I remember filling my glass with a soft drink pretending it had alcohol in it.

It was hard to accept at first, in fact, I think I was in denial. I would not sleep enough and did not adjust properly.

The anxiety is huge both in terms of embarrassment and the fact that I may hurt myself. Once I even had to have stitches because I fell and hit my head.

I was also very worried that I was a burden to my family and friends although my parents and close friends were extremely supportive although some people did start to treat me differently.

In fact, the definition of epilepsy apart from having seizures also includes the psychological impact the seizures bring about on the person. For me, the psychological aspect of the condition is worse than the actual seizures.

I still have to calculate the number of hours I have to sleep and sometimes because of my full days I do not get enough. I then spend the next day worrying I am going to have a seizure because I did not get enough sleep.

 What do feel when you get a seizure?

Everyone feels different things but some people with epilepsy can describe an aura prior to having a seizure. It is a very distinct feeling and in fact, when I listen to myself describe it sounds a bit surreal.

With this aura, some can sense the seizure coming and find a safe place.

Is there a stigma associated with epilepsy?

Unfortunately, I can say hand on heart that the stigma surrounding epilepsy is extremely present. However, whenever I share my story people have generally been supportive.

There have been times, however, when people have told me I am going to end up in a wheelchair, that I will not have children, I will not be able to work. These things were sometimes said even by people close to me.

I can recall at the age of 10, before I ever had my first seizure, being at Mass and a child in a pram started shaking. I did not know at the time that the child was having a fit so I asked what was happening and someone told me 'look away because the child is having what was known and still is as 'tal-qamar'.

This is a very derogatory Maltese phrase associated with demonic possession. Although this is not so relevant today, I have heard of one particular story where someone was having a seizure and exorcism came into the picture.

Epilepsy is also generally associated with lower levels of IQ and other negative connotations. This stigma persists today especially due to the fact that certain psychological conditions may also be present in persons who have epilepsy. 

The unknown is also a factor in the stigma associated with epilepsy.

Caritas Malta Epilepsy Association works very hard to battle the taboo on epilepsy and holds many talks in schools to explain the condition to students, tomorrow's generation.

What is epilepsy?

Epilepsy is a neurological condition that leads to a tendency to have seizures. A seizure can be explained as a burst of electrical activity in the brain. Our brain is controlled by electricity.

When a seizure occurs it can go haywire and it can be manifested as such.

Everyone has a seizure threshold. This threshold can be lowered even more by certain factors such as sleep deprivation and alcohol excess. In people with epilepsy, that threshold is even lower.

Having one seizure, however, does not mean that that person has epilepsy. A seizure may be the result of other causes such as infections and head injury.

There are different types of seizures: focal and generalised seizures. The latter is what people generally associate seizures with when the person is unconscious for a few seconds. Focal seizures involve a part of the brain and the seizures are manifested depending on its origin.

Those arising from the part of the brain responsible for movement lead to jerking. These seizures may also involve emotions or feelings of panic or fear if they involve the part of the brain responsible for feelings. They may involve what are known as automatisms with swallowing, humming, grunting or salivation.

What should one do if they see someone having a seizure?

First and foremost keep calm. Just ensure the person is protected and if possible put something under their head. You have to let the seizure run its course, do not hold the person down. If the seizure lasts for more than five minutes call an ambulance.

Stay with the person after the seizure because of the stage of confusion. The person will need your support.

Do you believe epilepsy has made you stronger?

You never know how strong you are until being strong is the only option you have. In a way I consider this to be a blessing because the condition has shown me the true colours of others. And I have also found people who constantly support me to this very day.

I feel that the topic of epilepsy is still a taboo. But also thanks to the Caritas Malta Epilepsy Association who help several suffering from this condition the awareness is growing.

Caritas Malta Epilepsy Association can be contacted on 25906600 or [email protected]

*name has been changed protect identity