Whether you’ve been a caregiver for years or if your duties as a caregiver are just beginning, it’s comforting to know that there are epilepsy resources to help you navigate your loved ones’ journey.
Many resources exist to connect you with others who are experiencing something similar. There are also support services that can help when you may be feeling a little lost. No matter your situation, there are people and places you can turn to when you need a helping hand.
Epilepsy & Seizures 24/7 Helpline
The Epilepsy Foundation offers a 24/7 Epilepsy & Seizures Helpline with trained information specialists available to answer your questions, provide support, and direct you to local or national resources. There are several convenient ways for you to reach the Helpline when you have a question. You can call 1-800-332-1000 to speak with someone in English, or you can call 1-866-748-8008 to speak to someone in Spanish. We answer calls 24 hours a day, 7 days a week.
If you do not want to make a phone call, you can fill out our Helpline online form and a trained specialist will answer your questions within one business day. Please keep in mind that our specialists are not medical professionals. If you have an urgent medical question, it is always best to contact a physician or visit the hospital in the event of an emergency.
Finding Support Groups
The epilepsy community is an incredibly supportive network. When someone you love is facing the challenges of epilepsy, it is normal to feel overwhelmed. You are never alone.
Find your local Epilepsy Foundation to connect with in-person or virtual support groups for caregivers. Support groups are also available if your loved one is interested in speaking with other people with epilepsy in a group setting. The Epilepsy Foundation lists in-person and virtual support events on our website as they become available.
Parents of children with epilepsy often take on a caregiver role. As a result, many parents helping parents support groups are a key part of the Epilepsy Foundation's programs.
Some parent groups have a structured program of formal meetings with outside speakers. Others are informal get-togethers for parents to meet others, share experiences and grow together. Whatever the design, the goal is the same: to help parents help their children with seizures and maintain a loving family environment for all its members.
For many people living with epilepsy, regular visits to their neurologist are enough for treatment of their seizures. However, if your loved one has trouble controlling their seizures, an epilepsy center can provide special care that other doctors may not be able to provide. Epilepsy centers have experts in the diagnosis, evaluation, and treatment of epilepsy.
An evaluation at a specialized epilepsy center typically begins with video EEG monitoring to record seizures. This testing can confirm the diagnosis, type of seizures, and where the seizures start in the brain. Answers to these questions help give people a more accurate outlook of what they can expect, understand what medications may work best, and consider which non-drug treatments such as dietary therapy, devices, or surgery may be appropriate. Many other tests may be done to look for causes of the epilepsy, the impact on a person’s cognition or thinking and their general health.
The sooner you begin your search for an epilepsy specialist, the sooner you and your loved one can work toward better seizure management strategies.
Seizure First Aid Certification
As a caregiver, you should always be prepared in case your loved one has a seizure. If you are new to seizures and epilepsy, seizure recognition and first aid training is essential.
The Epilepsy Foundation offers in-person and on-demand Seizure Recognition and First Aid Certification. The training provides information to increase the knowledge, skills, and confidence in recognizing seizures and safely administering seizure first aid. The first aid procedures in the course reflect the standard of knowledge and current best practices. Participants who complete the course will receive a two-year certification. The course lasts about 90 minutes.
We know that the caregivers in the epilepsy community do their best every day to support those living with seizures. In addition to using our website as a resource, our social media channels also provide regular information about seizures and epilepsy. Follow our accounts on social media for regular updates and to stay connected with other members of the community.