My story about epilepsy 

Video made and edited by David Morrah 

David Morrah film maker

This video is about my experience with epilepsy and what people need to know about it. My seziures are different to normal tonic clonic seziures. I have a lot of absent seziures and I don’t have control I fall and don’t remember I even had a seziure this type is not a tonic colonic but absent seziures are just as horrible as the most common seziures.

My name is Lori and I first got diagnosed with epilepsy when I was 25 years old, that was a few years ago now.

 How did you handle being told you were epileptic? It was emotionally difficult to accept that I am epileptic. It took me a few years to fully accept that I am epileptic.

What generally causes epilepsy? When I get anxious and stressed and also not getting enough sleep it triggers my seizures which is not pleasant. But that’s mostly what triggers my seizures. Everyone is different, so my awareness is there every day and I have learnt to look after myself more.

What generally causes epilepsy? When I get anxious and stressed and also not getting enough sleep it triggers my seizures which is not pleasant. But that’s mostly what triggers my seizures. Everyone is different, so my awareness is there every day and I have learnt to look after myself more.

Is the medication good at preventing seizures, or can they still happen?

Yes the seizures come and go, it doesn’t happen everyday but knowing what affects me helps to prevent seizures. And the current drugs I’m on helps reduce the risk of seizures.

You have had absent and tonic clonic seizures - can you describe each one?

 Absent is different to tonic clonic seizures. The tonic clonic ones are more dangerous and will need serious medical attention and an ambulance is needed urgently. But with absent seizures it happens for at least 1 minute and then I come back to normal.

If someone is found in a tonic clonic seizure, what do you need to do?

If found having a tonic clonic seizure I need medical attention urgently as I know from experience and I need to be put in the recovery position.

What other types of seizures can people get?

There are at least 3 types of seizures: focal onset, generalised onset, and unknown onset.

1. FOCAL AWARE SEIZURES 

During these seizures the person is aware and may experience feelings such as déjà vu, an unpleasant smell or taste, or sensations such as ‘butterflies’ or nausea. These seizures may also involve motor activity (such as involuntary and brief jerking of an arm or leg) or fiddling with clothing or pointing.  Sometimes, this type of seizure can come before another seizure type (e.g. tonic-clonic seizure).

FOCAL IMPAIRED AWARENESS SEIZURES 

During these seizures the person may appear confused and dazed, and may do strange and repetitive actions (such as fiddling with their clothes, making chewing movements with their mouth or uttering unusual sounds). 

2. GENERALISED ONSET SEIZURES

Generalised seizures are presumed to affect a person’s awareness or consciousness in some way and, consequently, may pose safety risks for the person.

Generalised seizures with motor onset involve changes in muscle activity, which can include limb stiffening, jerking, and loss of muscle control or convulsions. Those seizures with a non-motor onset are often called absence seizures and involve the person ‘zoning out’ for a brief period. 

Generalised onset seizures include: myoclonic seizures; tonic-clonic seizures (that’s a stiffening of the muscles and limbs jerking and the shaking of the body. A person experiencing this type of seizure may produce excess saliva).  There are also tonic seizures; atonic seizures; absence seizures; and, myoclonic absence seizures (which tend to last between 10 and 60 seconds).

3. UNKNOWN ONSET SEIZURES

For some people, despite lots of tests and investigations, the type of seizure is unclear. Because the onset of the seizure is unknown, people who experience these may have varied states of awareness.  For more information please visit the epilepsy foundation website.

Besides medication, what other lifestyle things can lessen seizures from occurring?

 Meditation, yoga, any form of relaxation.  I find my anxiety disorder is an issue to my epilepsy which can be challenging as it can cause an absent seizure. And getting enough sleep. 

9. How have you overcome the stigma from having this condition?

It all comes down to your mindset and attitude towards it. I have had to accept that you can’t change the fact I am epileptic. Some days I can be negative if I have had a seizure in public as it reminds me of the first time I had one.

Does memory loss affect anyone with epilepsy?

People with epilepsy are at a higher risk of developing memory problems, which can be frustrating and affect their early life. There are potentially several reasons for memory problems in people with the frontal lobes of the brain.

How does it affect you when you coming back to reality from a seziure? 

When I’ve had an absent seizure I don’t remember what or where I am. And I am in a confused state. And then realized that I’ve had a seizure. 

Finally, you are a life coach and musician - how have you managed to thrive despite the odds?

 Well, I have a guy who owns a business and is my label after 12 years in the music industry. He decided to release my popular songs chill in my vein and exbf collection on vinyl record.