Epilepsy and your mental health

Seizures can bring sudden feelings like fear or déjà vu, especially when they start in the temporal lobe. That part of the brain is also important for memory and emotion.

So mood changes are not a sign of weakness. They can be part of the condition, and they deserve care like any other symptom.

Many seizures come without warning. Always half-waiting for the next one can keep your body on alert and wear you down.

Some people with frequent seizures may not be able to drive or do certain work for a time. Losses like these can bring real grief and frustration.

Many people with epilepsy and their families face stigma and discrimination, especially where myths about the condition persist.

Some epilepsy treatments can affect concentration and memory. If you notice changes in your mood or thinking after a change in treatment, tell your care team. Never stop or change a treatment on your own.

• Feeling flat, hopeless or empty most days
• Losing interest in people or things you used to enjoy
• Pulling away from friends and family
• Sleeping or eating much more or less than usual
• Thinking you are a burden

People with epilepsy should tell their health care team about mental health symptoms so they can get the right care.

You could say

• “Could you refer me to a counselor who knows about epilepsy?”
• “I feel more anxious since my seizures started. Can we talk about that?”
• “My mood has been low for a few weeks and I wanted to mention it.”

CDC describes Project UPLIFT as a program that teaches mindfulness and other skills to reduce depression in people with epilepsy.

A seizure action plan tells people around you what to do and who to call. Many people feel calmer once a few trusted people know it.

1. Breathe in slowly through your nose for a count of four
2. Breathe out gently for a count of six
3. Name five things you can see and three things you can hear
4. Repeat for a minute or two

Small daily practice helps more than waiting until you feel panicky.

If you have stopped going to the shop, the gym or a friend’s house, try a short visit with someone who knows your plan. Then build up slowly.

A therapist can guide this step by step if the fear feels too big to face alone.

Some seizures bring sudden fear, and panic can feel strange in the body too. Keep notes on what happened and share them with your care team, who can help tell them apart.

• Calendar or planner with reminders
• Checklists for daily tasks
• Notes app for things people tell you
• Voice memos after appointments

• Make a short to-do list each day
• Split big jobs into smaller tasks
• Use a timer to keep track of time

HOBSCOTCH (Home-Based Self-Management and Cognitive Training Changes Lives) is one of the proven programs listed by the CDC-supported Managing Epilepsy Well Network. Programs are available in some communities.

If memory or focus has changed, mention it. Your team can look at possible causes and may suggest a specialist assessment.

• Avoid big meals and exercise within a few hours of bedtime
• Go to bed and get up at the same time each day
• Keep distractions out of the bedroom

Tracking seizures and possible triggers can help you spot patterns. Add your mood and sleep to the same notes.

• A short walk or safe daily exercise
• Breathing or relaxation practice
• Saying no to one thing this week
• Time with people who make you laugh

CDC advises people with epilepsy to limit alcohol and avoid illegal drugs. If cutting down feels hard, talk with your clinical provider.

Hearing unkind ideas for long enough can make you hide, feel embarrassed or blame yourself. Notice that voice and question it, the way you would for a friend.

Kinder things to tell yourself

• “A seizure is a medical event, not a personal failure.”
• “I am more than my diagnosis.”
• “I get to decide who I tell and when.”

• “Lots of people with epilepsy work in all kinds of jobs.”
• “No, you can’t swallow your tongue during a seizure.”
• “You can’t catch it. It’s a brain condition.”

Support groups and local Epilepsy Foundation offices can connect you with others affected by epilepsy. Hearing “me too” can ease a lot of shame.

You could ask

• “Do your friends know? How do you feel about that?”
• “Is anything at school worrying you?”
• “What’s the hardest part about epilepsy for you right now?”

Teens may feel angry about rules, missing out or not being able to drive yet. Involve them in decisions and safety plans so they feel some control.

Some children need extra time or repeated instructions, and some need a special education plan.

Teaches mindfulness and other skills to reduce depression. Available in English and Spanish.

Helps people with epilepsy learn skills to cope with stress, stigma and isolation, and to better control seizures. It is for people who have had negative health events.

Targeted Self-Management for Epilepsy and Mental Illness is for people managing epilepsy along with a condition such as depression.

HOBSCOTCH is home-based with cognitive training. MINDSET supports health decisions. PACES encourages people to take an active part in managing epilepsy.

To find a program, look at managingepilepsywell.org or ask your local Epilepsy Foundation office.

Run by the Epilepsy Foundation. Information specialists answer questions, give emotional support and connect you to local help. It is not for emergencies. Check epilepsy.com/helpline for current hours.

Free and confidential support if you are in emotional distress or having thoughts of suicide, or are worried about someone else.

Free, confidential support by text, 24/7, anywhere in the United States.

findahelpline.com lists free, confidential helplines by country. Your national epilepsy association may also offer support.