Over 600,000 people in the UK have epilepsy, with 87 new diagnoses happening every day. Yet because it’s an invisible condition, awareness is limited.
“Epilepsy affects people’s lives in so many ways. Low self-esteem, social isolation and gaining employment can be just some of the issues which people with epilepsy have to deal with,” a spokesperson for Epilepsy Action tells HuffPost UK.
“As a result, many people feel uncomfortable talking about their condition for fear of discrimination or feeling embarrassed.”
To coincide with International Epilepsy Day (12 Feb) and to help educate the wider public, here’s how to tell if someone’s having a seizure, as well as what happens after diagnosis.
Epilepsy can start at any age, but more commonly occurs either in childhood or after the age of 60. It’s often lifelong, but can sometimes get slowly better over time. Epilepsy Action estimates that with the right treatment, the majority of people with epilepsy (70%) could be seizure-free.
The only visible symptom of epilepsy is recurrent seizures caused by bursts of electrical activity in the brain. There are roughly 60 different types of seizure and a person may have more than one type. Some people remain aware throughout their seizures, while others can lose consciousness. For some, epilepsy can be life-threatening: 1,000 people die in the UK every year because of it.
According to the NHS, a seizure might cause a person to: uncontrollably jerk and shake (a “fit”), lose awareness and stare blankly into space, become stiff, collapse or experience strange sensations (such as unusual smells or tastes, and a tingling feeling in the arms or legs).
You should call 999 for an ambulance if someone: has a seizure for the first time, has a seizure that lasts more than five minutes, has multiple seizures in a row, has breathing problems or has seriously injured themselves.
A seizure can be a one-off event, however in other cases it might be a sign of epilepsy. To determine which it is, your doctor will often refer you to a neurologist who can provide further tests. Between seeing your GP and neurologist, the NHS advises to avoid activities that could put you or others in danger, such as driving and swimming.
The neurologist will likely perform an electroencephalogram (EEG) or a brain scan to test brain activity. They may also ask you for more information about your seizure, such as: when you had it, what you were doing when it happened, and how you felt before, during and afterwards.
Epilepsy treatment aims to reduce the amount of seizures people have or stop them completely. According to the NHS, the main treatment options are:
:: Anti-epileptic drugs (AEDs). Epilepsy Research UK warns people to be mindful of the side effects of some AEDs which can include weight gain, sleepiness, confusion, unsteadiness, lowered efficacy of the contraceptive pill and harm to an unborn baby.
:: One third of people with epilepsy are unable to control their seizures with anti-epileptic drugs (AEDs), if this is the case, surgery might be advised. Surgery involves removing the small part of the brain that’s causing the seizures.
:: A procedure to put a small electrical device inside the body can also help control seizures, this is called vagus nerve stimulation (VNS). The device is hooked up to a wire under the skin which connects to a nerve in the neck. Bursts of electricity are then sent along the wire to the nerve, which help change electrical signals in the brain.
:: Following a ketogenic diet - high in fat, low in carbs and protein - can also help control seizures. It is usually advised as a temporary solution for children but not for adults, as a high-fat diet is linked to issues like diabetes and heart disease.
Some people need treatment for life whereas others might not need treatment at all if they know what triggers their seizures. Triggers can be anything from stress, lack of sleep, waking up or drinking booze, to menstruation, flashing lights and some medications and illegal drugs.
Experts advise patients with epilepsy to keep a diary so they can learn what prompts their seizures and devise a plan to keep fits at bay.