Five things to know about my epilepsy

By Jane Williams

Seeing as I was diagnosed with epilepsy more than half my lifetime ago, I can’t remember what it’s like not to know about it. Despite being the most common serious neurological condition in the world, there is still a surprising number of misconceptions surrounding it.

(1) Should I put a spoon in your mouth?
This question, or variants of it, is the one I get asked most often. It stems from the misunderstanding that you can swallow your tongue when having an epileptic seizure. But the tongue is attached, so therefore incredibly unlikely that you could swallow it.

So the simple answer? No, definitely not. Please don’t put a spoon, your fingers, or anything else, into my mouth. I will bite it, and bite it hard — with the strong likelihood of hurting you — and the spoon. And trust me, a sore tongue is better than a friend who isn’t talking to you because you made them bleed.

(2) What does it feel like to have a seizure?
There are many different kinds of seizures, and they can feel different to different people. The most well-known seizure is the one people associate with falling to the ground and ‘foaming at the mouth’. The technical name is tonic-clonic (or grand mal) and is a seizure I have experienced many times.

I find that I cannot recall the majority of the seizure. What I generally remember is the aftermath: I feel like I’ve run a marathon (not that I’ve ever run a marathon), my body aches, and I’ve normally bitten my tongue. I can feel a bit woozy but it doesn’t take me long before I’m absolutely fine again.

(3) Does epilepsy mean you can’t go to nightclubs?
No, it doesn’t mean that. Some people with epilepsy (and only some) are photosensitive which means that certain patterns of light can trigger a seizure. Strobe lights are often found in nightclubs, and so this can limit the ones I go to, but the medication I take should also control the photosensitive aspect of my epilepsy.

Strangely, covering one eye when confronted with a strobe light means I will not have a seizure — as both eyes need to see the light. This meant that in university, my friends and I invented a rather fetching ‘one eye dance’ which meant we could all keep dancing without fear of seizures.

(4) What should I do if you have a seizure?
If we take this question to mean a tonic-clonic seizure, then my answer is generally along the lines of ‘do nothing’. Tonic-clonic seizures do look very scary (I wouldn’t want to see myself have a seizure) but the key thing to remember is this is what epilepsy means and entails: the reoccurrence of seizures. I am not in any harm when I am mid-seizure.

Generally, as a rule, you should never move or try and restrain someone who is having a seizure — unless they’re at risk of causing themselves further harm (for example if they started having a seizure at the top of a staircase or at the edge of a cliff). Time the seizure and if it lasts more than five minutes phone an ambulance, but generally they will last no more than two minutes (though it can feel like a lifetime). Stay with the person and reassure them of what has happened. They may be very confused (I have been known to ask my mum who she is).

(5) What triggers your seizures?
All kinds of things can trigger seizures in people with epilepsy but for me, the most common trigger by far is a lack of sleep. More specifically, my seizures are triggered when my sleep pattern is disturbed. For example, I have long been banned from having naps as there is no guarantee that when having a nap, the phone won’t ring, the postman won’t knock at the door, or the next door neighbour won’t decide to start renovating their house — and these disturbances could trigger a seizure for me.

However, on the plus side, there is a huge range of medications that control seizures and for many people, if taken correctly, their seizures stop. I am one of these lucky people, and most days, I completely forget that I have epilepsy. It’s just a case of remembering to take my medication!

In the 12 years since my diagnosis, I have found that reading and learning about epilepsy is the best way of knowing how to cope with it. When friends ask about it, I can answer with confidence and I have often found if I am not scared, then neither are they. Although seizures can be frightening, when you know what they are, why they are happening and how to deal with them, much of the fear disappears.

Jane Williams is a Marketing Executive at Oxford University Press. She was diagnosed with Juvenile Myoclonic Epilepsy at 12 years old.

The Facts series gives clear, straightforward, and practical advice about a range of medical conditions and topics. It provides the essential facts for both patients and their families wishing to go beyond the information available from busy doctors, or simply not sure of the right questions to ask. The two books available on epilepsy in this series are Epilepsy and Epilepsy in Women, which address all aspects of epilepsy, at all ages.

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Photo: Jane with her YoungScot award for continually working to improve awareness of epilepsy. All rights reserved.