Understanding Focal Impaired Awareness Seizures: What Mine Really Look Like

When you hear the word seizure, what do you actually picture?

For a lot of people, it’s someone falling to the floor and convulsing. I know that because before I was diagnosed with epilepsy, that was pretty much what I thought epilepsy looked like too. I had absolutely no idea there were different types of seizures, which made understanding what was happening to me incredibly difficult.

I was diagnosed with epilepsy in 2012, after years of experiencing strange episodes that I couldn’t explain. I knew something wasn’t right, but trying to describe something when your own awareness and memory are affected isn’t exactly easy. I experienced overwhelming fear, intense déjà vu and strange movements, yet because I wasn’t having the type of seizure most of us recognise from TV and films, epilepsy wasn’t the obvious answer.

Eventually I was diagnosed, and what I experience are focal impaired awareness seizures, previously commonly called complex partial seizures.

I’ve spoken about my epilepsy many times over the years, both here on Tales of Annie Bean and elsewhere, but I wanted to revisit focal impaired awareness seizures because I still think they’re incredibly misunderstood.

What is a focal impaired awareness seizure?

A focal seizure starts in one side of the brain. During a focal impaired awareness seizure, a person’s awareness is affected. They may look awake, but they might not be able to respond normally to what’s happening around them, communicate properly or remember everything that happened during the seizure.

And this is where I think some of the misunderstanding comes from. Seizures don’t always look dramatic from the outside.

Someone might stare or appear confused. They may make repetitive, involuntary movements known as automatism, such as lip smacking, chewing, swallowing, rubbing their hands, picking at clothing or making other repeated movements. Some people may make sounds or move around.

They can also be experiencing things you can’t see.

Fear can be a symptom. Déjà vu can be a symptom. Strange sensations, changes in emotions or altered experiences can form part of a focal seizure too.

Then there is what happens afterwards. A seizure ending doesn’t necessarily mean that person is instantly back to normal. There can be confusion, problems communicating, exhaustion and a need to rest while the brain recovers.

Most importantly, there isn’t one universal experience of a focal impaired awareness seizure. What happens to me won’t necessarily be what happens to somebody else.

What happens during my focal impaired awareness seizures?

There are certain things that happen during mine that are incredibly consistent.

My left hand clenches. Without fail. My other hand has to repeatedly open and close and my motor skills go. I often close my eyes, I lip smack and swallow repeatedly, and sometimes I’ll make noises.

But I cannot speak. At all.

That’s one of the strangest parts of it. From the outside, some of what I’m doing could probably look relatively insignificant. Inside my head, however, it is anything but. It’s scary as hell.

I get an incredibly intense feeling of déjà vu, although simply calling it déjà vu doesn’t really explain how powerful it is. Alongside it comes this absolutely overwhelming fear like nothing else. It’s not the same as being nervous or a little frightened. It’s an intense, horrible feeling that completely takes over.

And I can’t explain that to you while it’s happening because I can’t speak.

Even when the seizure itself stops, I’m not immediately back to normal. My speech doesn’t come back straight away and it can take a little while before I can properly communicate again. Afterwards, I get awful headaches and I’m completely exhausted. Often I simply have to sleep it off.

That’s something I don’t think people necessarily understand when they see somebody with epilepsy looking “fine” again. The visible part might have finished, but the impact of it hasn’t.

My epilepsy has also changed over the years. I’ve had periods where I’ve been nearly seizure-free and others where seizures have appeared in clusters. They’re sporadic and, frankly, seem to arrive whenever they fancy.

Yet I’ve also done things since my diagnosis that I couldn’t have imagined when I first heard the word epilepsy.

I started doing triathlons after my diagnosis and sport gave me something positive to focus on at a time when I desperately needed it. Since then I’ve swum, cycled, run, travelled, taken on challenges for epilepsy awareness and even crossed the finish line of an IRONMAN World Championship in Kona.

I don’t mention that because everyone with epilepsy should be out doing an IRONMAN — absolutely not. Epilepsy is different for everyone and what is safe and appropriate for one person may be completely different for another.

I mention it because having epilepsy and having a life aren’t mutually exclusive.

For me, living with epilepsy has involved learning my own condition, understanding risk, knowing when I need to rest and accepting that sometimes my body gets the final say. But awareness from the people around us matters too.

If someone tells you they have epilepsy, don’t assume you know what their seizures look like. They might not fall down. They might not convulse. They might be standing in front of you looking relatively “normal” while experiencing something completely overwhelming that you can’t see.

Focal impaired awareness seizures are real seizures.

Mine involve clenched hands, repetitive movements, loss of speech, intense déjà vu and a level of fear I find almost impossible to describe. Afterwards come the headaches, exhaustion and recovery. Someone else’s experience may be entirely different. And perhaps understanding that is one of the most important bits of epilepsy awareness in the first place.

This post describes my personal experience of epilepsy and focal impaired awareness seizures and shouldn’t be taken as medical advice. If you think you or somebody you know may be experiencing seizures, please speak to a healthcare professional.