Patient Education

New to seizures & epilepsy

A new seizure or epilepsy diagnosis brings a lot of questions at once. These starter materials from the Epilepsy Foundation explain what seizures and epilepsy are, how treatment usually works, and how to stay safe and organized in the early months — whether the diagnosis is yours or a loved one's.

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Hearing the words "seizure" or "epilepsy" for the first time can be overwhelming — for the person diagnosed and for the family around them. Epilepsy is a medical condition, like asthma or diabetes, in which the brain has recurrent seizures. It is not contagious, and it is more common than many people realize: the Epilepsy Foundation notes that 3.4 million people in the United States live with epilepsy, and 1 in 26 people will develop it at some point in their life.

The materials on this page are a starting point. The centerpiece is the Epilepsy Foundation's "New to Seizures and Epilepsy" toolkit, which walks through the basics in plain language: what seizures and epilepsy are, how doctors diagnose them, common seizure triggers like missed medication and poor sleep, seizure first aid, home safety, and how to work with your health care team. It is also available in Spanish. The toolkit includes honest, calm information about SUDEP (sudden unexpected death in epilepsy) — a rare risk that doctors bring up because keeping seizures well controlled is one way to reduce it.

Treatment usually starts with anti-seizure medication (ASM), and the Epilepsy Foundation notes that about 6 in 10 people control their seizures with the first or second medicine they try. When medicines alone are not enough, there are other options: epilepsy surgery, implanted devices such as vagus nerve stimulation (VNS) and responsive neurostimulation (RNS), and special medical diets. The flyers below explain each of these in everyday terms — not so you can choose one on your own, but so the conversation with your care team makes sense.

Two of the resources are simple worksheets: one for keeping track of everyone on your health care team, and one for writing down questions before appointments. In the early months, when information comes fast and appointments feel short, putting things on paper helps a lot.

None of this replaces medical advice. Use these materials to learn the vocabulary, understand your options, and come to appointments prepared — then work through decisions with your doctor or epilepsy team. The Epilepsy Foundation also runs a free 24/7 Helpline at 1-800-332-1000 (Spanish: 1-866-748-8008) with trained specialists who can answer questions and connect you with local resources.

The materials

Everything below is free. These summaries are for general education — always talk with your own care team about what applies to you.

  • New to Seizures and Epilepsy ToolkitThe Epilepsy Foundation's full starter packet for newly diagnosed people and families: what seizures and epilepsy are, common seizure types and triggers, seizure first aid steps, home and parenting safety tips, SUDEP facts, a fill-in Seizure Action Plan, and how to make the most of health care visits.
  • Toolkit en español: Lo nuevo en crisis epilépticas y epilepsiaThe same starter toolkit fully translated into Spanish, including the Spanish-language helpline (1-866-748-8008) and laepilepsia.org resources.
  • Surgery for EpilepsyExplains when epilepsy surgery is considered — usually after at least two medicines have not controlled seizures — the main types of surgery, how testing at a comprehensive epilepsy center works, and what to expect afterward.
  • Vagus Nerve Stimulation (VNS Therapy)Describes the VNS device — a small stimulator implanted in the chest that sends pulses to the brain through the vagus nerve — including who may be a candidate, how the magnet works during a seizure, and how well it tends to work over time.
  • Responsive Neurostimulation (RNS System)Covers the RNS System, a "smart" implanted device that monitors brain activity and responds within milliseconds to stop seizure activity — an option for some adults with drug-resistant focal epilepsy who cannot have surgery.
  • Dietary Therapies to Treat Seizures and EpilepsyIntroduces the four major medical diets used for epilepsy — the classic ketogenic diet, MCT diet, Modified Atkins Diet, and Low Glycemic Index Treatment — what being on one is like, side effects to watch for, and why these diets require a medical team, not a do-it-yourself approach.
  • Questions for My Health Care Team (worksheet)A printable form for writing down questions before appointments, noting who to ask, and checking off answers and next steps — a simple way to make short visits count.
  • My Health Care Team (worksheet)A printable contact sheet for tracking everyone involved in your care — neurologist, primary care doctor, pharmacy, counselors, school staff, and more — with space for the best way and time to reach each one.