I Just Got Diagnosed with Epilepsy, Now What?
6 Oct 2025
Receiving an epilepsy diagnosis can feel overwhelming. Whether you experienced your first seizure recently or have been dealing with unexplained episodes for months, hearing the words “you have epilepsy” marks the beginning of a new chapter. But here’s the important part: you’re not alone, and with proper management, most people with epilepsy live full, active lives.
In the United States, approximately 3.4 million people live with epilepsy, and 150.000 new cases are diagnosed each year. This guide will walk you through everything you need to know after your diagnosis, from understanding what epilepsy really means to practical next steps for managing your condition.
What Does an Epilepsy Diagnosis Actually Mean?
Epilepsy is a neurological disorder characterized by recurrent, unprovoked seizures. A seizure occurs when there’s a sudden surge of electrical activity in the brain, temporarily affecting how it works. To receive an official epilepsy diagnosis, you typically need to have experienced:
Two or more unprovoked seizures occurring more than 24 hours apart, OR
One unprovoked seizure with a high probability of more seizures (based on EEG findings or brain imaging), OR
A diagnosis of a specific epilepsy syndrome
Types of Seizures You Should Know About
Understanding your seizure type is crucial for treatment. Epilepsy seizures fall into several categories:
Focal Seizures (Partial Seizures) These start in one specific area of the brain. You might remain conscious (focal aware seizures) or experience altered awareness (focal impaired awareness seizures). Symptoms can include unusual sensations, repetitive movements, or confusion.
Generalized Seizures These involve both sides of the brain from the start and include:
Tonic-clonic seizures (formerly called grand mal): Involve loss of consciousness, muscle stiffening, and jerking movements
Absence seizures: Brief lapses in awareness, often mistaken for daydreaming
Myoclonic seizures: Sudden, brief muscle jerks
Atonic seizures: Sudden loss of muscle tone, causing falls
Unknown Onset Seizures When the beginning of a seizure isn’t witnessed or can’t be determined.
Your neurologist will identify your specific seizure type to determine the best treatment approach.
How Doctors Diagnose Epilepsy: The Testing Process
If you’ve just received your diagnosis, you’ve likely undergone several tests. Understanding what these tests revealed can help you feel more in control of your health journey.
Essential Diagnostic Tests for Epilepsy
Electroencephalogram (EEG):
This is the most important test for diagnosing epilepsy. An EEG records your brain’s electrical activity using small electrodes attached to your scalp. It can detect abnormal patterns that indicate epilepsy, even between seizures. You may have had:
Routine EEG (30-60 minutes)
Prolonged EEG monitoring (24 hours or more)
Video EEG monitoring (recording seizures as they happen)
Brain Imaging:
MRI (Magnetic Resonance Imaging): Provides detailed brain images to identify structural abnormalities, tumors, or scarring that might cause seizures
CT Scan: Used to quickly rule out serious conditions after a first seizure
PET or SPECT Scans: Sometimes used to identify areas of abnormal brain metabolism
Blood Tests
These check for metabolic or genetic conditions that might cause seizures, as well as electrolyte imbalances.
Neurological Examination
Your doctor assessed your behavior, motor abilities, mental function, and reflexes to determine how epilepsy affects your brain function.
Your First Steps After Diagnosis
1. Find the Right Epilepsy Specialist
While your primary care doctor can manage some aspects of epilepsy, working with a neurologist specializing in epilepsy is essential. An epilepsy specialist (epileptologist) has advanced training in seizure disorders and stays current with the latest treatments.
Questions to ask your doctor:
What type of epilepsy do I have?
What triggers should I avoid?
What are my treatment options?
How often should I have follow-up appointments?
When should I call you between visits?
2. Understand Your Treatment Options
Treatment for epilepsy is highly personalized. Your neurologist will consider your seizure type, frequency, lifestyle, and other health conditions when recommending treatment.
Anti-Seizure Medications (ASMs) About 70% of people with epilepsy can control their seizures with medication. Common first-line medications include:
Levetiracetam (Keppra)
Lamotrigine (Lamictal)
Valproic acid (Depakote)
Carbamazepine (Tegretol)
Finding the right medication may take time. Be patient and communicate openly with your doctor about side effects.
Other Treatment Options If medications don’t control seizures effectively, your doctor might recommend:
Epilepsy surgery: Removing the brain area causing seizures
Vagus nerve stimulation (VNS): An implanted device that sends electrical impulses to the brain
Responsive neurostimulation (RNS): A device that detects and stops seizures
Ketogenic diet: A high-fat, low-carbohydrate diet that can reduce seizures
Deep brain stimulation (DBS): Electrodes implanted in the brain to regulate abnormal activity
3. Create a Seizure Action Plan
A seizure action plan is a document that tells others how to help you during a seizure. It should include:
Description of your typical seizures
How long they usually last
First aid steps
When to call 911
Emergency contacts
Your medications
Click here to download our template. Fill it out and then share it your with family, friends, coworkers and teachers.
Living with Epilepsy: Practical Lifestyle Adjustments
Identifying and avoiding your triggers can significantly reduce seizure frequency. Common triggers include:
Sleep deprivation: Maintain a consistent sleep schedule (7-9 hours per night)
Stress: Practice stress-management techniques like meditation or yoga
Missed medications: Set phone reminders or use a pill organizer
Alcohol and recreational drugs: These lower seizure threshold
Flashing lights (for photosensitive epilepsy): Avoid strobe lights and certain video games
Hormonal changes: Track seizures during menstrual cycle
Illness or fever: Take extra precautions when sick
Keep a Seizure Diary Track your seizures, including date, time, duration, warning signs, and possible triggers. This information is invaluable for your doctor when adjusting treatment.
Modern technology makes this easier! Consider using a seizure tracking app or monitoring device to help you manage epilepsy.
Safety Considerations
Living with epilepsy requires some safety modifications:
At Home:
Use protective guards on radiators and heating elements
Carpet floors where possible to cushion falls
Shower instead of taking baths
Use microwave instead of stove when alone
Keep bedroom simple and safe
Driving:
Driving restrictions vary by country but typically require you to be seizure-free for 3-12 months. Check your state’s specific laws and talk to your doctor about when it’s safe to drive.
At Work
You’re not required to disclose your epilepsy to your employer, but it may be beneficial for safety reasons. The Americans with Disabilities Act (ADA) protects you from discrimination and entitles you to reasonable accommodations.
The Emotional Impact of an Epilepsy Diagnosis
It’s completely normal to experience a range of emotions after your diagnosis. Many people go through stages similar to the grief process of denial, anger, bargaining, depression and acceptance.
Mental Health Matters
People with epilepsy are more likely to experience:
Depression (affecting 30-50% of people with epilepsy)
Anxiety disorders
Social isolation
Low self-esteem
Don’t suffer in silence. Mental health is as important as physical health. Consider options such as:
Joining an epilepsy support group (online or in-person);
Working with a therapist experienced in chronic illness;
Talking openly with loved ones about your feelings;
Connecting with others who have epilepsy;
Building Your Support Network
You don’t have to navigate epilepsy alone. Building a strong support system is crucial:
Family and Friends Educate your loved ones about epilepsy, seizure first aid, and how they can support you. The Epilepsy Foundation offers resources for family members.
Support Groups Connecting with others who understand your experience can be incredibly valuable. Look for local support groups or online communities.
Healthcare Team Beyond your neurologist, you might benefit from:
Epilepsy nurse specialist
Neuropsychologist
Mental health counselor
Social worker
Financial and Legal Considerations
Insurance and Medical Costs
Epilepsy treatment can be expensive. Tips for managing costs:
Review your insurance coverage thoroughly
Ask about generic medication options
Look into patient assistance programs from pharmaceutical companies
Consider epilepsy foundations that offer financial assistance
Legal Rights and Protections
You have rights under the ADA, which prohibits discrimination based on disability in:
Employment
Public accommodations
Transportation
Government services
The Epilepsy Foundation’s Legal Advocacy program can provide guidance on disability rights.
Looking Ahead: Your Epilepsy Prognosis
Here’s some encouraging news: About 70% of people with epilepsy can become seizure-free with proper treatment. Many people eventually reduce or stop medication after years of being seizure-free (always under medical supervision).
Success isn’t just about being seizure-free, it’s also about living fully. With proper management, people with epilepsy graduate from college, build successful careers, get married and have children, travel and pursue hobbies and lead independent, fulfilling lives!
Ongoing Care and Monitoring
Epilepsy management is a lifelong journey. Regular follow-ups with your neurologist are essential, typically every 3-6 months initially, then annually once stable. Your doctor will:
Monitor seizure control
Adjust medications as needed
Order periodic blood tests
Track side effects
Update your treatment plan
The Future of Epilepsy Management: Innovation and Hope
Medical technology in epilepsy care is advancing rapidly! New developments include:
Improved anti-seizure medications with fewer side effects
Advanced wearable seizure detection devices
AI-powered seizure prediction systems
Gene therapy research
More precise surgical techniques
Essential Resources for People with Epilepsy
International Bureau for Epilepsy (IBE): Global advocacy and support network (epilepsyadvocacyeurope.org)
European Academy of Neurology (EAN): Latest research and guidelines (ean.org)
ILAE (International League Against Epilepsy): Research and education (ilae.org)
National Epilepsy Organisations
There are a number of national epilepsy associations that can help you in your journey! Here are a few:
Ireland: Epilepsy Ireland
Germany: Deutsche Epilepsievereinigung
France: EFAPPE
Netherlands: Epilepsie Vereniging Nederland
An epilepsy diagnosis changes your life, but it doesn’t define you. With proper treatment, self-care, and support, you can manage your condition effectively and live the life you want.
Remember these key takeaways:
Work closely with an epilepsy specialist
Take medications as prescribed
Identify and avoid your triggers
Prioritise sleep and stress management
Build a strong support network
Stay informed about new treatments
Advocate for yourself
Know your rights under European disability laws
The journey ahead may have challenges, but you’re stronger than you think. Thousands of people are diagnosed with epilepsy every year across Europe, and they go on to live remarkable lives. With the right tools, support, and attitude, you can too.
Your epilepsy diagnosis is not the end of your story. It’s the beginning of a new chapter where you learn to thrive despite challenges.
Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always consult with your healthcare provider regarding your specific condition and treatment options.