For Those Newly Diagnosed

The Epilepsy Foundation can help you or your loved one navigate an epilepsy diagnosis. This is often a stressful and confusing time in a person’s life; our goal is to make sure you get the right information and guidance to work towards seizure control. We can offer one-to-one support, education materials, training, and more.

Some of the first steps to take after being diagnosed with epilepsy include:

• Assess the level of care needed (primary care physician, neurologist, or epileptologist)
• Create a Seizure Action Plan
• Disclosure of epilepsy diagnosis to school or place of employment
• Discuss medication options
• Refer to resources about state driving laws
• Schedule an EEG (electroencephalogram) and/or MRI
• Track medication side effects

How Do I Manage My Epilepsy?

Taking an active role in managing your epilepsy is an important part of reducing your seizure activity, and can help you feel in control. Learning how epilepsy affects you and finding your seizure triggers is an important step in managing your epilepsy. Common triggers include:

• Stress
• Lack of sleep
• Missing medication doses
• Eating a poor diet

Identifying your seizure triggers gives you the power to avoid them, or at least reduce the likelihood of being affected by them. Triggers vary from one person to another, and some people have no triggers at all.

One way to manage your epilepsy is by keeping a journal and tracking your seizures, triggers, medication side effects, and other relevant information. This can help your healthcare team in trying to find the right medication for seizure control.

Check out our downloadable Self-Management Toolkit. This toolkit is a great resource when navigating your epilepsy diagnosis.

Epilepsy and Safety

Balancing activities you enjoy with precautions to keep you safe is the best way to continue living a full and active life.

Naturally, some activities carry more risk than others. You may need to consider your safety during activities that others take for granted, or find someone to accompany you for things you’re used to doing alone. There are also daily living tasks that you may have to approach differently, like taking a shower instead of a bath.

It may seem overwhelming, but by taking a few simple precautions you can greatly reduce your risk of being injured during a seizure and still lead a full and active lifestyle. Read our Living with Epilepsy brochure or contact us for more information about safety and injury prevention.

Thriving with Epilepsy

Meet Ellis Weiss

Being diagnosed with a rare form of epilepsy comes with its own unique challenges, but that doesn’t mean you have to go through it alone. Since their daughter Ellis was diagnosed with Doose Syndrome, Erik and Kendra Weiss have used monthly EFMN Connect Groups to meet others who have a child with epilepsy and learn from their experiences.

Read Ellis's Story

Connecting With Others

Epilepsy can feel very isolating, especially if you have recently been diagnosed. Connecting with others is an important way to find support, and also to learn from what others have experienced. We make it easy for you to meet others in the epilepsy community through Connect Groups, social events, the Rise Above Seizures Walk, and other events that you can find on our online calendar.

Behavioral Health and Epilepsy

Since epilepsy is a condition of the brain, it can often co-exist with other neurological or psychiatric disorders. This means not only are people with epilepsy at a higher risk of developing psychiatric disorders, but people with primary psychiatric disorders are at a higher risk of developing epilepsy.

Between 25 and 50% of people living with epilepsy will also be diagnosed with a psychiatric disorder, which may include depression, anxiety, attention deficit disorder (ADD), personality disorders, and psychosis. The most common psychological disorders in adults with epilepsy are mood and anxiety disorders, and the most common among children are attention deficit hyperactivity disorder (ADHD), anxiety, and depression.

Read more about behavioral health and epilepsy in our Epilepsy & Mental Health booklet, or contact us for more information.