Living with Epilepsy
When Dr Nick Dunn witnessed his best friend’s first seizure at school, it left a lasting impression. Here, he reflects on that experience, explains the different ways epilepsy can affect people and explores how greater understanding can help people living with the condition.
All morning, he had been complaining of an odd smell about the place, and then he started saying that everything felt a bit strange. We thought nothing of it and continued munching on our mid-morning interval snacks of crisps and Coke.
At the age of 15, we didn’t think too deeply about anything, other than getting through the school day and getting home to our dinners.
The next minute, when I turned round to speak to him, my best friend Vincent was on the floor, eyes staring and arms and legs jerking violently. We tried to shake and waken him, but he didn’t respond. His breathing was noisy and he turned navy blue. We had no idea what was happening, but it was very scary and the memory is still etched into my mind almost 40 years later. I ran to the staffroom and shouted for help. Fortunately, the deputy head teacher was trained in first aid and ran to help, clearing his tongue from the back of his throat to allow him to breathe, and his colour improved. Minutes later an ambulance arrived and took him to hospital. I felt shaken and a bit dazed for the rest of the day, and it was a relief later that afternoon to visit Vincent in hospital, who by that time looked absolutely fine, and was keen to get home.
For anyone who has experience of epilepsy they will recognise this story as a typical grand-mal (or tonic-clonic) seizure. This was Vincent’s first seizure and as far as I am aware he only had a few further seizures in the years following this. Many people live with epilepsy, and it is usually well controlled with medication, but it remains a condition which scares people and often remains not talked about.
According to Epilepsy Action someone receives a new diagnosis of epilepsy every 18 minutes, and 1 in 100 people have epilepsy in the UK. It is probably the most common serious brain condition affecting a wide range of ages and can start at any time.
Epilepsy is a brain condition which causes repeated seizures. Not all seizures are caused by epilepsy. People can have a seizure caused by lack of oxygen, drug or alcohol withdrawal, fevers or low blood sugar.
Epilepsy is diagnosed when repeated seizures have no other underlying cause, and electrical brain activity measured using a headset called an electroencephalogram (EEG) shows signs indicating risk of further seizures (epileptiform waveforms). Because the brain functions through transfer of electrical energy, a seizure occurs when there is a sudden burst of electrical energy which disrupts normal conduction pathways and sets off a cascade of chaotic electrical signals across the brain. Depending on which part of the brain is affected, seizures can take different forms.
Grand-mal seizures such as what happened to my friend Vincent are what people classically associated with seizures : the initial aura which gives a warning of what is to come – often people describe an odd smell or feeling a bit removed from reality ; violent jerking of the arms and legs, unresponsiveness, and laboured breathing often associated with tongue-biting and loss of bladder control. However other seizures may not cause unresponsiveness but cause twitching of one side of the body, or even just one arm or leg, some occur only at night during sleep, others cause “absences” which sometimes last only seconds but result in what may appear to be poor concentration or day-dreaming.
As a hospital doctor working in Intensive Care in Glasgow, I would occasionally be asked to deal with the acute medical emergency of status epilepticus, where someone continues to remain unresponsive with repeated seizures which could last hours or even days. Because of the high energy consumption made by the brain during these episodes, there was a risk of prolonged brain damage. In these rare and extreme cases, we would have to give the patient a general anaesthetic to reduce the risk of damage through the physical jerking, but also to reduce the demands on the brain as it rapidly consumed oxygen and glucose during these intense bursts of electrical activity. Fortunately, many of the anaesthetic drugs we used helped slow down brain and seizure activity although we would often add in other drug infusions of Phenytoin or Valproate in addition to the baseline drugs of lorazepam or diazepam.
Many people continue to have seizures from time to time, despite medication helping control most of the seizures. Although this can prevent people driving (for obvious safety reasons), they will lead very active and fulfilling lives. It helps if they can warn colleagues what might happen if they have a seizure and reassure them that the vast majority of the time seizures end within minutes without specific treatment other than some simple basics. If someone has a tonic-clonic seizure it helps if they can be kept comfortable on the floor until the seizure ends, which is usually within 4 minutes. Something soft under their head and removing furniture or nearby objects which could cause injury also helps. Only move someone if they are in immediate danger.
Often people can become very disorientated immediately after a seizure and some simple reassurance can help. If the seizure is prolonged, that is lasting 5 minutes or more, then call an ambulance.
Receiving a new diagnosis of epilepsy can be a shock but it helps to ask questions and talk to people about it. The Epilepsy Action website is an example of a really useful source of information for people affected by epilepsy. And it needn’t limit life opportunities. Vincent went on to also become a doctor and is now working as a Consultant specialising in Diabetes.
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