Living with epilepsy: Five things you should know

Epilepsy affects around one in 100 people across the UK and can affect people in many different ways. It’s often a condition that takes time to diagnose and can in fact start at any age.

It’s the fourth most common neuro disability on the planet and for many people a diagnosis can feel devastating. But it is a condition that can be lived with, providing that you ensure you have the right treatment and live a lifestyle that suits the condition.

If you’ve been recently diagnosed then there are several things about the condition you should know as a start point, including:

Epilepsy is Different for Everyone

One thing to understand is that epilepsy generally affects each person differently. While there are similar symptoms, seizures will differ in type, intensity and frequency. In some cases people may experience more generalised seizures which involve the entire brain and can cause loss of consciousness. For others, they may come from a specific part of the brain and may be more subtle in the symptoms. That could be confusion or feeling unusual sensations.

Triggers for seizures can also differ greatly from person to person. The likes of stress, sleep deprivation and even certain foods can play their part, while flashing lights also more commonly have an impact. It’s important to work with your doctor to uncover the triggers in order to manage them more effectively.

Treatment Can Make a Big Difference

Epilepsy is a condition that is manageable. Certainly for most people. Anti-epileptic drugs can prevent or reduce the frequency of seizures, although it is important to note that finding the right medication and dosage can take a bit of time. It is largely possible to find good seizure control this way, however.

Where medication isn’t effective, there are options for surgery or vagus nerve stimulation, or even taking up certain diets. Essentially, you need to continually monitor your condition alongside your specialist to ensure that your treatment plan meets your needs.

Safety and Lifestyle Adjustments are Important

Living with epilepsy often involves making safety adaptations to minimise risks during a seizure. For instance, precautions such as avoiding unsupervised swimming, using safety features in the home, or ensuring others know how to assist during a seizure can enhance safety. It’s also essential to follow DVLA regulations concerning driving. In the UK, people with epilepsy may need to remain seizure-free for a specific period before being allowed to drive.

Lifestyle adjustments can also play a role in managing the condition. Maintaining regular sleep patterns, managing stress, and following a balanced diet are key factors that can help reduce seizure risk. Exercise is generally beneficial, although it’s wise to consult your doctor about any activities that might carry additional risks.

Emotional and Social Impact

Epilepsy is not just a physical condition—it can have emotional and social implications as well. Many people with epilepsy experience anxiety or depression, often related to the unpredictability of seizures or societal misconceptions about the condition. It’s important to address these feelings and seek support when needed.

Social stigma surrounding epilepsy has decreased in recent years, but misunderstandings still exist. Educating those around you about epilepsy can help build a supportive network. Charities such as Epilepsy Action and the Epilepsy Society offer resources and community support to help individuals and their families navigate these challenges.

You’re Not Alone

One of the most empowering things to remember is that you’re not alone. Millions of people worldwide live with epilepsy, and many organisations and support groups exist to provide help and guidance.

Connecting with others who have epilepsy can be a source of comfort and inspiration. Whether through in-person groups, online forums, or social media, sharing experiences and advice can foster a sense of community and understanding.

Advocacy and awareness efforts are also paving the way for better treatment options and societal acceptance. By staying informed and actively engaging with available resources, you can take charge of your condition and lead a fulfilling life.