One step at a time
New to Seizures or Epilepsy: Start Here
A first seizure or a new diagnosis can leave you with more questions than answers. Start with what you need today. This guide is for adults, families and anyone supporting someone with seizures. Our guides are free to read, with no email required.
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Choose a useful starting point
Someone needs help now
Go straight to seizure first aid and when to call for emergency help.
I am preparing for an appointment
Take a short checklist of what happened and the questions that matter to you.
I want to understand treatment
Find questions about medicines, side effects and getting help between visits.
On this page
- If a seizure is happening now
- A first seizure and epilepsy are different starting points
- Copy or print this appointment checklist
- If an EEG is next
- Help the people around you know what to do
- Make space for treatment questions
- If genetic testing comes up
- You can ask for support before you have every answer
If a seizure is happening now
Get emergency help when needed
Call 911 in the U.S., or your local emergency number, for a first known seizure, a seizure that reaches 5 minutes (or an earlier threshold in the person's action plan), another seizure without recovery, trouble breathing or waking afterward, serious injury, or a seizure in water. Pregnancy or diabetes with loss of consciousness also calls for emergency help. Follow the dispatcher's instructions.
Stay with the person, time the seizure and clear nearby hazards. Do not hold them down or put anything in their mouth. Our first-aid guide has the full steps and free printable sheets to share with the people around you.
A first seizure and epilepsy are different starting points
One seizure does not automatically mean epilepsy. A clinician needs to assess what happened, possible causes and the chance of further seizures. Sometimes epilepsy can be diagnosed after one unprovoked seizure when the risk of more is high; you do not always have to wait for a second.
If you are still waiting for answers, ask who is arranging follow-up and what to do if another event happens. If epilepsy has been diagnosed, ask for its name, what is known about your seizure type and what remains uncertain. You can ask someone to write this down in plain language.
That linked page explains research about first unprovoked seizures. Study averages cannot tell you your own chance of another seizure.
Copy or print this appointment checklist
Choose the items that fit. Copy them into your own notes or use your browser's Print command. There is no form to fill in here; keep personal details in your own notes to share with your care team.
- Bring a brief account of what happened before, during and after the event, including its duration and recovery. A witness's notes can help.
- Bring your current medicines, supplements, allergies and any hospital discharge paperwork or test reports.
- Ask: Was this likely a seizure? What other explanations are being considered? Is epilepsy diagnosed, suspected or still uncertain?
- Ask: Which tests or appointments come next, who arranges them and when should I expect results?
- Ask: What should we do if another event happens? When should we call emergency services or contact your office?
- Ask about driving, bathing, swimming, work, school and other activities that matter to you. Get advice for your situation and location.
- If medicine is prescribed, ask what it is for, which side effects need help and whom to contact about a missed dose or supply problem.
- Before leaving, check the next appointment, a contact number and your two most important unanswered questions.
You do not need a perfect record. If someone is supporting you, decide together whether you want them to attend, take notes or help remember questions.
If an EEG is next
An EEG records electrical activity in the brain. It is one part of an assessment, alongside what happened and your medical history. A normal EEG does not rule out a seizure or epilepsy. Ask what kind of EEG is planned, how to prepare and who will explain the result.
Help the people around you know what to do
Ask your care team about a written seizure action plan: what your seizures may look like, the help you need, emergency thresholds and contacts. If rescue medicine is prescribed, its instructions belong in that plan. The people who may give it need appropriate instruction.
With your permission, share the relevant plan with family, friends, school or workplace helpers. Adults deserve a say in how they are supported and what is shared.
Make space for treatment questions
Ask how the treatment decision fits your diagnosis, daily life and priorities. If seizures continue or side effects are difficult, tell your care team. Do not change or stop a seizure medicine on your own; ask for a plan and help with any barriers to taking it.
If genetic testing comes up
You do not need to navigate this topic alone. Ask what testing might explain, what it might leave uncertain, whether it could change care and what costs or family implications to consider. Ask who will explain the results and whether genetic counseling is available.
You can ask for support before you have every answer
Tell your team if worry, sleep, mood, costs or practical responsibilities are making life harder. Ask what support is available. Someone supporting you can help with one manageable task, such as arranging transport or learning first aid, rather than trying to solve everything at once.
The Epilepsy Foundation Helpline connects people with information and support resources; check its current hours. It is not an emergency service. Outside the U.S., ask your care team about a local epilepsy organization.
Choose one next step
Save your appointment questions, share the first-aid guide, or ask your team for the next contact and date. You can return to the rest when you are ready.
Sources and page information
Medical background was checked against the CDC and Epilepsy Foundation pages listed here on October 10, 2026. This guide provides general information and questions for your care team; it cannot diagnose a seizure or choose treatment for you. Linked research summaries describe particular studies, not personal predictions.
- CDC: First Aid for Seizures
- Epilepsy Foundation: What Is Epilepsy?
- Epilepsy Foundation: Evaluation of Your Medical History
- Epilepsy Foundation: What if my EEG was normal?
- Epilepsy Foundation: Seizure Action Plans
- CDC: Treatment of Epilepsy
- Epilepsy Foundation: Genetic Testing for Epilepsy
- Epilepsy Foundation: Helpline and current availability
Sources checked October 10, 2026.
Published by Epilepsy Explained. Suggest a correction: include the page URL, the passage, and a supporting source. How we prepare and correct our pages.