Strive to #AimForZero Seizures

The Epilepsy Foundation wants people with epilepsy to know that “No seizures, no side effects” should be the ultimate goal of epilepsy treatment.

Unfortunately, too many people with epilepsy whose seizures can be controlled accept continued seizures in their life — and may be unaware of potential strategies to prevent them.

The Epilepsy Foundation believes that even one seizure is not acceptable and is taking steps through research and the development of new therapies to work toward no seizures for all people living with epilepsy.

For most people living with epilepsy today, the disease can be controlled with available therapiesgood seizure-management practices, and the support of an epilepsy specialist.

And for people with the most severe types of difficult to control epilepsy, there are steps an individual can take to lower one’s risk, including participating in research to find new, more effective therapies.

What You Can Do

Regardless of a person’s current level of seizure control, there are many proactive steps people with epilepsy can take once they have committed to exploring all options to stop seizures.

Learn About Seizures and SUDEP

People say “knowledge is power” because it is true. Make sure you understand how serious seizures are, what type of seizures you have, what SUDEP is, and how to manage your seizures so you can be an effective member of your own health care team.

Know Your SUDEP Risk

Talk about SUDEP with your health care team so you understand your risk. Do the type of seizures you have put you at higher risk? As reported in the SUDEP Guideline, people who have three or more generalized tonic-clonic seizures a year have a 15 times higher risk of SUDEP. If you have seizures at night, should you consider using a monitoring or alerting device or sharing a room so someone is there to help if needed?

Orrin Devinsky MD Talks About SUDEP

Know Your Seizure Triggers

Track your seizures and identify seizure triggers. Tools like the Epilepsy Foundation My Seizure Diary can help. Then take steps or make lifestyle changes to avoid them. Find information about managing seizure triggers and epilepsy self management programs.

Michael Privitera MD Talks About Seizure Triggers

Explore All Treatment Options

While seizure medicines are the most common epilepsy treatment, there are other approaches to think about too. If your seizures are not controlled or you are having side effects or other issues (like mood or behavior changes), explore other options, including

Dr. Jeff Buchhalter on the Ketogenic Diet and SUDEP
Provided by our partner, The Charlie Foundation for Ketogenic Therapies

Visit a Comprehensive Epilepsy Center

If your seizures are difficult to control, meaning you continue to have seizures after one year or after two anti-seizure medications have been tried, we recommend seeking more specialized care. Comprehensive Epilepsy Centers pull together a team of specialists to ensure your seizures are diagnosed properly, perform additional testing if needed, and help you explore all treatment options. Find an epilepsy center here.

Participate in a Clinical Trial

Clinical trials are the only way new treatments can be approved and made available to people with epilepsy. They also help determine if a potential treatment is safe and effective. When you participate in a clinical trial, you are helping to advance epilepsy treatment and care. Your participation may increase knowledge about conditions that affect you and those you love. During the trial, you will also have access to knowledgeable specialists and monitoring. Learn more and get started here.

Reach Out for Support

Connect with your local Epilepsy Foundation or call our 24/7 Epilepsy & Seizures Helpline at 800-332-1000 for services, support, and referrals. Use the forums and chat sections to connect with people online.

Strive to #AimForZero Seizures

These steps will help most people living with seizures improve seizure control and quality of life.

The one third of people living with persistent seizures even with existing therapies – and already following these seizure management practices – may want to consider participating in medical research that can lead to effective treatments. Learn about clinical trials, why they are important, and how a trial might benefit you here.

New Treatments and Therapies in a Timeframe that Matters

One of the Epilepsy Foundation's key strategic priorities is to accelerate new therapies for people with epilepsy and seizures in a timeframe that matters.

One example of this is the Rare Epilepsy Network, which unites 26 rare epilepsy organizations, Epilepsy Foundation, Research Triangle Institute, Columbia University, and New York University to expedite research into the rare epilepsies.

Another example of our commitment to preventing seizures and sudden unexpected death in epilepsy (SUDEP) is the SUDEP Challenge Initiative, which will be awarding more than $1 million for a series of prize challenge competitions around predicting and preventing SUDEP.

Authored By: 
The Epilepsy Foundation SUDEP Institute
Authored Date: 
09/2017
Reviewed By: 
Joseph I Sirven MD
on: 
Thursday, September 28, 2017