An epilepsy diagnosis can feel overwhelming, bringing with it a unique set of challenges and questions. It's completely normal to feel a mix of emotions, from uncertainty to a desire for control. I've experienced a lot of this! But here's the powerful truth: epilepsy doesn't have to define you or limit your aspirations. With the right knowledge, proactive management, and a strong support system, you can navigate daily life with confidence and continue to pursue a full, meaningful, and vibrant existence. This page is designed to be your trusted guide, offering practical advice, emotional insights, and actionable strategies to empower you on your journey.
Let's face it, many different seizure triggers can suddenly come out of the blue. In this section, we'll be talking about what it's like to manage your seizure triggers and seizure diary.
There is a wide variety of seizure triggers, and we can't cover all of them. In this list, we will help you identify and learn about the most common seizure triggers in the moment.
Some of the most common seizure triggers include:
Missing medication
Lack of sleep / Sleep deprivation
Stress and anxiety
Alcohol and drug use
Illness, fever, and infections
Hormonal changes (e.g., menstrual cycle, puberty, pregnancy)
Flashing or flickering lights (photosensitivity)
Dehydration / Not eating properly (especially low blood sugar)
Certain other medications (interactions)
Excessive caffeine
Extreme temperatures
Specific sensations or activities (reflex epilepsy, e.g., reading, hot water, certain sounds)
Now that you know some of the most common seizure triggers, let's talk about your personalized seizure diary.
First of all, what is a seizure diary? A seizure diary is a record that helps you keep track of the number, type, time, place, and any other signs of the seizure. Now, why should you keep a seizure diary?
Keeping a seizure diary helps because:
Identifying Triggers: By noting what happened before a seizure, you can start to pinpoint your triggers, such as stress, lack of sleep, or specific activities.
Assessing Medication Effectiveness: Your diary provides concrete data for your doctor to see if your current medication is working optimally or if adjustments might be needed.
Monitoring Frequency & Severity: It gives you a clear, objective record of how often seizures occur and how impactful they are.
Recognizing Auras/Warning Signs: Consistent tracking can help you identify any recurring sensations or symptoms that might precede a seizure.
Informing Doctor's Appointments: Why try to recall details from memory when you could be fully or partially unconscious? Your diary provides accurate, detailed information, making your appointments more productive and effective.
Personal Empowerment: Taking an active role in tracking gives you a greater sense of control and understanding of your condition.
What To Include In Your Seizure Diary
Date and Time: Note the exact start time and approximate end time of the seizure.
Type of Seizure: If you or an observer knows, specify the type (e.g., focal aware, tonic-clonic).
Description of the Seizure: What happened?
Before (Aura/Warning Signs): Any feelings, smells, sights, or sensations just before the seizure began.
During: What did you or an observer (Family and/or friends) see?
After (Post-Ictal Period): How did you feel immediately afterward?
Possible Triggers: What do you suspect might have contributed?
Medication Information: Did you take your medication as prescribed? Were there any recent changes in your medication or dosage?
Other Factors: Note anything else relevant from that day, such as your general health, stress levels, amount of sleep the night before, or menstrual cycle stage (if applicable).
Injuries Sustained: Any cuts, bruises, or other injuries that occurred during the seizure.
Sleeping isn't just good for people without epilepsy: Epileptics need vital sleep as well. In this section, I will explain to you the tips of good sleep hygiene and bettering your management of stress to help you live with epilepsy.
Establish a Consistent Sleep Schedule: Go to bed and wake up at roughly the same time every day, even on weekends. This helps regulate your body's natural sleep-wake cycle.
Create a Relaxing Bedtime Routine: Wind down for at least 30-60 minutes before bed. This could include reading, taking a warm bath, listening to calming music, etc.
Optimize Your Sleep Environment: Make your bedroom dark, quiet, and cool. Consider blackout curtains, earplugs, or a white noise machine if needed. (I use a white noise machine!)
Limit Screen Time Before Bed: The blue light emitted from phones, tablets, and computers can interfere with melatonin production, a hormone that helps you sleep at night. Aim to stop using screens at least an hour before sleep. (This helps a LOT. Sleep is very important!)
Avoid heavy meals, caffeine, and alcohol close to bedtime.
Get Regular Physical Activity: Exercise during the day can promote better sleep, but avoid intense workouts too close to bedtime.
Avoid Long Naps: While short power naps (20-30 minutes) can be refreshing, long naps can disrupt your nighttime sleep schedule.
Practice Relaxation Techniques
Deep Breathing: Simple exercises like slow, deep belly breaths can calm your nervous system quickly.
Mindfulness & Meditation: Focus on the present moment to reduce worry about the past or future. Short guided meditations can be very effective.
Progressive Muscle Relaxation: Tensing and then relaxing different muscles can release physical tension.
Prioritize Physical Activity: Regular exercise is a powerful stress reliever. Even a brisk walk can clear your head. I do this a lot!
Engage in Hobbies & Interests: Make time for activities you enjoy – whether it's reading, painting, gardening, listening to music, or playing a sport. These serve as healthy distractions and sources of joy.
Ensure Good Nutrition: A balanced diet supports overall brain health and can help your body cope with stress more effectively.
Connect with Your Support Network: Talk to trusted friends, family, or a support group. Sharing your feelings can significantly reduce stress.
Set Boundaries: Learn to say "no" to commitments that overwhelm you. Protect your time and energy. You don't have to be a people pleaser 100% of the time; let them know that you're a human too.
Time Management: Organize your tasks, prioritize, and avoid procrastination. Breaking large tasks into smaller ones can make them feel less daunting.
Seek Professional Help: If stress feels overwhelming or persistent, consider talking to a therapist or counselor. They can provide personalized strategies and support to develop healthier coping mechanisms.
Things such as driving or just mentally being stable, this can get hard, especially when you have epilepsy. In this section, we'll talk about navigating key life areas (Employment, driving, etc.) and emotional well-being and support.
Driving & Transportation: Driving regulations for people with epilepsy vary significantly by state, including required seizure-free periods. If you can't drive, I would suggest some public transportation or walking.
Employment & Education: In the U.S., the Americans with Disabilities Act (ADA) protects individuals with epilepsy from discrimination in workplaces and schools. This helps students or faculty stay safe.
Social Life & Relationships: I hate discussing my epileptic life with others. But it's helpful because it can help you openly discuss to get rid of myths, reduce stigma, and foster a strong support system. In dating and intimate relationships, honesty and clear communication about your condition are key.
Family Planning & Pregnancy: For women of childbearing age, it is essential to consult your neurologist before planning a pregnancy. This helps the neurologist and you come to terms with needed changes or none at all for the best healthiest outcome.
Epilepsy & Mental Health: It's very common to experience anxiety, depression, or mood changes when living with epilepsy. I experience a lot of these, and the feelings are COMPLETELY normal. Your mental health is just as important as your physical health.
Coping Strategies: Developing healthy ways to cope can make a significant difference. Practice relaxation techniques like deep breathing, meditation, or yoga. These helped me a lot when I was struggling with many negative mental health factors, such as anxiety.
Building a Support Network: Lean on trusted friends and family, and consider joining epilepsy support groups (online or in-person) for shared experiences and encouragement. My family follows a very supportive epilepsy charity, "The Epilepsy Foundation." You can find some more information here: The Epilepsy Foundation
There are a LOT of topics we didn't cover in this first update. Stay tuned for future readings to help you cope with epilepsy!