19 Dec 2025
Approximately 9 million people in Europe live with epilepsy, and behind each diagnosis stands a network of family members and caregivers learning to provide support. Whether you're caring for a child, partner, parent or friend, understanding epilepsy care fundamentals will help you provide better support whilst also protecting your own wellbeing.
This article highlights practical advice and tips for new epilepsy caregivers, covering everything from seizure first aid to emotional support strategies.
Understanding Epilepsy: What New Caregivers Need to Know
Before diving into practical caregiving tips, it's essential to understand what epilepsy actually is. Epilepsy is a neurological condition characterised by recurrent seizures caused by abnormal electrical activity in the brain. According to Epilepsy Action, the UK's leading epilepsy charity, seizures can affect people in vastly different ways depending on which part of the brain is affected.
Types of Seizures:
Not all seizures look the same. Understanding the different types helps you recognize them and respond appropriately:
Focal Seizures: These begin in one specific area of the brain. During a focal seizure, the person remains aware and might experience unusual sensations, twitching or intense emotions. With focal impaired consciousness seizures, the person may appear confused, wander aimlessly, or make repetitive movements like chewing.
Generalised Seizures: These affect both sides of the brain simultaneously. Tonic-clonic seizures (previously called "grand mal") are the most recognisable (think convulsive seizure), involving loss of consciousness, stiffening and jerking movements of the body. Absence seizures cause brief staring spells that might be mistaken for daydreaming. Learn more about absence seizures if your loved one experiences these.
Understanding seizure types is crucial because different seizures require different responses. Ask your loved one's neurologist to clearly explain their specific seizure types and create a personalised seizure action plan.
Essential Seizure First Aid: Your Most Important Skill
Learning proper seizure first aid is the most valuable skill you'll develop as a caregiver. The NHS guidelines and Epilepsy Society recommend following the simple "CARE" approach during convulsive seizures:
C - Comfort: Cushion their head with something soft like a folded jacket or pillow to protect them from injury. Remove any nearby hazards such as hot drinks, sharp objects, or furniture with hard edges.
A - Action: Begin timing the seizure immediately. Note when it started, as this information is medically critical. Clear the surrounding area and stay calm, your composure will help others remain calm too.
R - Recovery: Once jerking movements stop, gently roll the person onto their side in the recovery position. Tilt their head slightly back to keep airways open. This position prevents choking if they vomit or have excessive saliva. Do not put anything in the persons mouth.
E - Emergency: Call emergency services if the seizure lasts longer than 5 minutes, if multiple seizures occur without recovery between them, if the person is injured, has difficulty breathing afterward, or if it's their first seizure.
Critical First Aid Don'ts:
Just as important as knowing what to do is understanding what NOT to do:
Never put anything in their mouth - not your fingers, a spoon or medication
Never try to hold them down or restrain their movements
Never move them unless they're in immediate danger (near water, traffic, or fire)
Never give them food, drink, or medication until they're fully alert
Most seizures stop naturally within 1-3 minutes. Your role is to keep the person safe until it ends and provide comfort during recovery.
Creating a Seizure Action Plan
A seizure action plan is a document that provides clear instructions for anyone helping your loved one during a seizure. Download Lampsy's free seizure action plan template to get started.
Your plan should include:
Personal Information: Full name, date of birth, photo, and emergency contacts with multiple phone numbers
Medical Details: Diagnosis, seizure types, typical seizure duration, frequency, and known triggers. List all current medications with dosages and timing.
Seizure Response Instructions: Step-by-step first aid specific to their seizure types, when to administer emergency medication (if prescribed), and when to call an ambulance
Post-Seizure Care: How long recovery typically takes, whether they usually sleep afterward, any confusion patterns, and when they can safely be left alone
Additional Considerations: Medical alert jewelry information, specialist contact details, and any other relevant health conditions
Share this plan with everyone in regular contact with your loved one: family members, teachers, employers, and close friends. Keep copies in multiple locations and on your phone.
Managing Medications: Building a Reliable System
About 70% of people with epilepsy can control their seizures with anti-seizure medications (ASMs), making medication adherence absolutely crucial. Missing even one dose can trigger breakthrough seizures.
Practical Management Tips:
Set Multiple Reminders:
Use phone alarms, medication reminder apps, or smart speakers. Set reminders for 15 minutes before the scheduled time to allow flexibility.
Use a Pill Organizer:
Weekly pill organizers with separate compartments for morning and evening doses reduce confusion and make it easy to see if doses were taken.
Keep Backup Supplies:
Store extra medication in a separate location. If your loved one travels, they should carry medication in hand luggage with a copy of their prescription.
Monitor Side Effects:
Keep a log of any side effects, mood changes, or concerns. Many side effects improve after a few weeks, but some require medication adjustments. Report concerning symptoms to the neurologist promptly.
Never Stop Suddenly:
Abruptly stopping epilepsy medication can trigger severe seizures, including status epilepticus, a medical emergency. Any medication changes must be supervised by a neurologist.
Identifying and Managing Seizure Triggers
Understanding what triggers your loved one's seizures empowers you to help them avoid these situations. Common triggers include:
Sleep Deprivation:
One of the most common triggers. It’s extremely important to maintain a consistent sleep schedule of 7-9 hours nightly, even on weekends. Create a calming bedtime routine and optimize the bedroom environment for quality sleep. Better sleep habits significantly reduce seizure frequency for many people.
Stress and Anxiety:
Emotional stress can lower the seizure threshold. Encourage stress-management techniques like mindfulness, deep breathing exercises, regular physical activity, and therapy. As a caregiver, help create a low-stress environment when possible.
Missed Medications:
As mentioned, medication consistency is critical. Build routines that make taking medication automatic rather than something to remember.
Illness and Fever:
Infections and fever can trigger seizures, particularly in children. Monitor temperature during illness and consult the medical team about fever-reducing strategies.
Alcohol and Recreational Drugs:
These substances interfere with epilepsy medications and lower seizure thresholds. Have honest, non-judgmental conversations about substance use.
Hormonal Changes:
For women with epilepsy, seizures may fluctuate with menstrual cycles, pregnancy, or menopause. Track patterns and discuss them with specialists.
Flashing Lights:
For people with photosensitive epilepsy (only about 3% of cases), certain light patterns trigger seizures. Avoid strobe lights, cover one eye in situations with flashing lights, and use screen filters.
Encourage your loved one to keep a detailed seizure diary noting the date, time, duration, warning signs and possible triggers. This information helps neurologists optimize treatment and identify patterns.
Supporting Emotional and Mental Health
Caring for someone with epilepsy extends far beyond physical safety. The emotional impact of living with epilepsy is often underestimated.
Research shows that people with epilepsy are 4-5 times more likely to experience depression and anxiety compared to the general population. The mental health challenges in epilepsy are substantial, with approximately 30-50% experiencing depression and 11-25% dealing with anxiety disorders.
How to Provide Emotional Support
Listen Without Judgment:
Create a safe space for your loved one to express fears, frustrations, and concerns. Sometimes they need to vent without seeking solutions, just being heard is powerful.
Validate Their Feelings:
Acknowledge that adjusting to epilepsy is genuinely difficult. Avoid minimizing statements like "it could be worse" or "stay positive." Instead say, "This is really hard, your feelings are valid but you are strong and will go through this."
Encourage Professional Support:
Suggest counseling with therapists experienced in chronic illness. Cognitive behavioral therapy has proven particularly effective for managing anxiety and depression in epilepsy.
Social Life:
Isolation intensifies mental health struggles. Maintain friendships and joining epilepsy support groups can extremely beneficial, where they can connect with others who truly understand their experience.
Respect Their Independence:
Balance protection with autonomy. Overprotectiveness can damage self-esteem and create resentment. Involve them in all decisions about their care.
Educate Those Around Them:
Epilepsy stigma remains a significant problem. Help educate friends, family members, and colleagues to create a more supportive environment. Click here to read all about the most common myhts and how to debunk them!
Technology and Monitoring Solutions
Modern technology helps caregivers feel more supported in this journey, as modern tools enhance safety while preserving independence of everyone involved!
Seizure Detection Devices
Traditional wearable seizure detection devices have helped many families, but often come with challenges like discomfort, false alarms and visible medical appearance. That's why invisible monitoring technology represents an exciting advancement in epilepsy care!
Lampsy is pioneering a new generation of seizure monitoring that's embedded directly into a bedside lamp. Unlike wearables, there's nothing to charge, nothing to remember to put on and no uncomfortable sensors against the skin. The device uses advanced technology trained on thousands of hours of hospital footages in Europe to detect movements indicative of tonic-clonic seizures with over 99% accuracy and 18 times fewer false alarms than existing solutions.
For families worried about seizures, especially during the night, this technology provides genuine peace of mind. When unusual activity is detected, emergency contacts receive immediate calls and notifications so they can respond promptly. All data processing happens locally, ensuring complete privacy, meaning no sensitive footage is sent to the cloud unless you explicitly choose to share it.
If your loved one is at risk for nocturnal seizures, learn more about Lampsy and join the waiting list to be among the first families to benefit from this innovative monitoring solution.
Other Helpful Technology
Seizure diary apps make tracking easier than paper records
Medication reminder apps with customizable alerts
Medical alert jewelry provides critical information to first responders
Self-Care for Caregivers: You Can't Pour from an Empty Cup
Caring for someone with epilepsy is demanding, both physically and emotionally. Caregiver burnout is real and can affect your health, relationships and ability to provide care.
Signs of Caregiver Burnout
Persistent exhaustion that doesn't improve with rest
Increased irritability or mood swings
Withdrawing from friends and activities you once enjoyed
Changes in appetite or sleep patterns
Feeling resentful toward your loved one
Neglecting your own health needs
Essential Self-Care Strategies
Accept Help: When people offer assistance, say yes. Create a list of specific tasks others can do such as grocery shopping, meal preparation, accompanying your loved one to appointments, or simply spending time with them so you can have a break.
Set Boundaries: It's okay to prioritize your own needs. Schedule regular time for yourself, even if it's just 30 minutes daily for a walk, reading, or a hobby you enjoy.
Join a Caregiver Support Group: The Brain Charity provides free support specifically for carers of people with neurological conditions throughout the UK. Connecting with others who understand your experience reduces isolation and provides practical coping strategies.
Maintain Your Own Healthcare: Continue attending your own medical appointments and don't postpone preventive care.
Practice Stress-Management: Regular exercise, meditation, journaling, or therapy can help you process the emotional demands of caregiving.
Take Respite: Regular breaks from caregiving responsibilities aren't selfish, they're essential for long-term sustainability. Investigate respite care options in your area.
Educate Yourself, But Don't Obsess: While knowledge is empowering, constantly researching epilepsy can increase anxiety. Set boundaries around information consumption.
Practical Daily Living Tips
Beyond emergencies and medical management, daily life with epilepsy requires some practical adjustments.
Employment Considerations
Your loved one can absolutely work with epilepsy, but certain considerations apply:
Disclosure to employers is sometimes necessary, particularly if job duties include driving, operating machinery, working at heights, or if seizures could pose safety risks
Know your rights under the Equality Act 2010, which protects people with epilepsy from discrimination
Reasonable adjustments might include flexible working hours to accommodate medical appointments or managing fatigue
Social Activities and Travel
Epilepsy shouldn't prevent anyone from enjoying life! It just needs special attention of a few matters and activities such as:
When swimming, always have a buddy and inform lifeguards
Avoid swimming in open water or during vulnerable periods
Most people with epilepsy can and should travel, just pack extra medication and carry documentation
Inform airlines about the condition when booking
Research healthcare facilities at destinations
Obtain travel insurance that covers pre-existing conditions
Looking Ahead: Hope and Realistic Expectations
Here's encouraging news for new caregivers feeling overwhelmed: approximately 70% of people with epilepsy achieve seizure freedom with proper treatment! Many eventually reduce or stop medication after years without seizures (always under medical supervision).
Living well with epilepsy is absolutely possible. People with the condition graduate from university, build successful careers, have families, travel the world, and pursue their passions. While epilepsy presents challenges, it doesn't have to define or limit your loved one's life.
Disclaimer: This article provides general information and should not replace professional medical advice. Always consult with your loved one's neurologist or epilepsy specialist team for guidance specific to their situation.
