Besides your doctor, there are many local, national, and international organizations available to help people with epilepsy. Many of these organizations have local support groups or online forums for you to ask other people with epilepsy your questions.
The following is a list of organizations dedicated to helping people with epilepsy. Epilepsy Education Everywhere is providing this list for informational purposes only. If you know of an organization that should be listed, please contact us.
AED Pregnancy Registry
American Academy of Neurology
American Epilepsy Society
Anita Kaufmann Foundation
Centers for Disease Control and Prevention
The Charlie Foundation
Citizens United for Research in Epilepsy
Epilepsy Foundation of America (check the national site for your local chapter.)
International Bureau for Epilepsy
International League Against Epilepsy
National Institute of Neurological Disorders and Stroke
National Organization for Rare Disorders
North American SUDEP Registry
Realm of Caring
And, of course, don’t forget to ask your local librarian for help!
Emfit Movement Monitor
The Emfit Movement Monitor is a bed monitor that not only senses motions, but sends an alert to a caregiver when a child or adult is experiencing repetitive muscle spasms. For more information, go here.
EpDetect is also portable as it is a motion sensor application available for your phone. It will alert a caregiver as to your location and gives you the option to cancel the request. Visit here for more info.
Whether doing it on your home PC or as a phone app, a seizure diary is a great way to keep track of your seizures. Take copious notes such as how long your seizure lasted, the time of day, what you ate, or many other things when you have a seizure. These will help not only you, but also your doctor in determining treatment plans and whether or not any patterns exist. Online diaries include:
Vagus Nerve Stimulator
The VNS device is similar to a pacemaker in that it stimulates the vagus nerve sending messages to the brain in order to reduce seizures. Although a non-pharmaceutical option, it is typically used in people with intractable epilepsy in conjunction with anti-epileptic medications. Check here for more information.
Responsive Neuropace Stimulator
The RNS is a non-pharmacological treatment option for people with intractable epilepsy. A stimulator is based underneath the skull with wires leading to one or two key places where seizures originate within the individual. For more information, go here.
Life Alert gives you the opportunity to press a button and alert an individual at their centralized location that you are having a seizure. When you don’t respond, they will send medical assistance. For more information, go here
Traumatic brain injuries are just one of many causes of seizures. Protective headgear, such as Guardian Helmets, can help protect you from additional head trauma. If you are at risk of falling during a seizure, or simply want additional head protection, check here for more information. If you decide to order, use the code EEE to get $10 off your new helmet.
Dietary changes can be beneficial to seizure control since some things such as caffeine and alcohol can be seizure triggers.
For some people, the ketogenic diet, a high fat, low carbohydrate diet developed in the 1920s, has been successful in maintaining seizures. For more information on the ketogenic diet, go to The Charlie Foundation.
The ketogenic diet is primarily used with children whereas a Modified Atkins Diet can be used for adults.