Epilepsy Resources

Epilepsy Resources

The following lists contain links to third party web sites. We are not responsible for the content or privacy policies of these external sites. While we try to only list sites here that we feel contain useful information, a listing here should not be construed as an endorsement for any commercial products or services they may provide.

General Epilepsy Resources

• American Epilepsy Society - Industry organization for health care professionals and researchers in the epilepsy field. Does not cater to patients.
• Epilepsy Action - UK epilepsy organization offering an email "help line".
• Epilepsy Foundation - American charitable organization dedicated to the welfare of people with epilepsy. Has driver license law database by state and other good information.
• Epilepsy.com - Information repository sponsored by The Epilepsy Project. There is lots of information here about seizures and treatments.
• National Society for Epilepsy (NSE) - UK organization with a lot of epilepsy information.

Neurofeedback Resources

• EEG Neurofeedback - One of our forum threads where we list a bunch of research that has been published about neurofeedback.
• Neurofeedback on the Brain - Dr. Karen Shue's blog about neurofeedback and brain functioning.
• Neurofeedback resources - Dr. White has compiled a list of useful sites for researching EEG neurofeedback as a treatment for normalizing brain activity.
• New Approaches to Seizures - There are several pages of interest here including Raising Seizure Thresholds and the The Andrews/Reiter Epilepsy Research Program pages
• Neurofeedback Research - Gives an overview of scientific research on neurofeedback.
• Neurofeedback FAQ - Brian Thiel answers basic questions about neurofeedback.
• Zengar Institute - Home of the Neurocare Pro, the EEG Neurotherapy that helped Stacy stay seizure free for 4 years.
  • NueroCARE Pro practitioners directory
• OchsLabs - Home of the LENS (or Low Energy Neurofeedback System)
• EEG Info - Dedicated to neurofeedback; includes searchable directory of trained EEG neurofeedback professionals.
• EEG Spectrum International - Dedicated to neurofeedback; includes browseable list of trained EEG neurofeedback professionals by geographic area.
• Association for Applied Psychophysiology and Biofeedback (AAPB) - Dedicated to advancing the development, dissemination and utilization of knowledge about applied psychophysiology and biofeedback to improve health and the quality of life through research, education and practice. Includes a "Disorders" section detailing the efficacy of neurofeedback for treating different problems and a searchable "Provider Directory" where you can find practitioners in your area.
• International Society for Neurofeedback and Research (ISNR) - A non-profit professional association that promotes excellence in practice, education and research for neurofeedback.

Recommended Books

• Prescription for Nutritional Healing - Very good book with advice on vitamins and supplements for specific conditions (including epilepsy).
• Epilepsy - A New Approach: What medicine can do, what you can do for yourself - Want to be proactive about managing your seizures? This book can help.
• Women with Epilepsy: A Handbook of Health and Treatment Issues - Reviews issues related to hormones, fertility, pregnancy, menopause and menstruation.
• The Healing Power of Neurofeedback: The Revolutionary LENS Technique for Restoring Optimal Brain Function - Informative and easy to read, this book gives you insight into the world of classical EEG neurofeedback and Ochs' LENS system.

Check out our Amazon.com store for more epilepsy books and videos.

Epilepsy Forums

• BrainTalk Epilepsy Forum
• Coping With Epilepsy Forum
• Epilepsy Foundation eCommunities Forums
• NSE(UK) Epilepsy Forum
• VNS Message Board - Not strictly about epilepsy, but more about VNS Therapy which is touted as an alternative or adjunctive therapy for epilepsy.

Epilepsy Non-Profit Organizations and Charities

• The Brian Othmer Foundation - Supports neurofeedback research and programs to make neurofeedback available to under-served populations.
• Citizens United for Research in Epilepsy (CURE) - A non-profit organization whose mission is raising funds for research and increasing awareness of epilepsy.
• The Epilepsy Therapy Development Project - A non-profit organization whose mission is to advance new treatments for people living with epilepsy.
• For A Better Life with Epilepsy (FABLE) - A UK non-profit organization whose mission is raising public awareness of Epilepsy through education and publicity.
• Parents Against Childhood Epilepsy (PACE) - A non-profit organization whose mission is to support advances in medical research of epilepsy.
• Raising Awareness, Involvement and Support for Epilepsy (RAISE) - A non-profit organization whose mission is exposing the darker side of epilepsy.
• The Charlie Foundation - A non-profit organization established in 1994 in order to raise awareness about the ketogenic diet as a treatment for childhood epilepsy.
• Matthew's Friends - A non-profit organization established to to aid and support parents in managing the Ketogenic diet.
• Alliance for Epilepsy Research (AER) - grass roots non-profit organization formed to encourage and support innovative epilepsy research and to increase public awareness of epilepsy and epilepsy's impact.
• Finding A Cure for Epilepsy and Seizures (FACES) - Non-profit organization which is part of the NYU Medical Center and its Comprehensive Epilepsy Center.
• Chores for Charity - Empowers teenagers and young adults to turn part-time, summer, babysitting or even odd jobs into a volunteer activity. They show how people can donate a small amount of the money they earn to a charity of their choice and count the "unpaid" time as "volunteer time", which may qualify for community service credit at their school. Originally founded by a teenager who raised funds for FACES.
• LGS Foundation - An organization dedicated to raising awareness about Lennox-Gastaut Syndrome, a severe and debilitating form of childhood onset epilepsy.
• The American Epilepsy Outreach Foundation (AEOF) - An organization dedicated to raising the public’s awareness of Epilepsy through advocacy and education, as well as providing support for children with Epilepsy and their families.

Related Resources

• The AED Pregnancy Registry - Dedicated to determining the safety of anticonvulsant medications that can be taken by women during pregnancy to treat disorders such as epilepsy, mood disorder, and chronic pain. The primary goal is to determine the frequency of major malformations, such as heart defects, spina bifida and cleft lip, in the infants exposed during pregnancy to anticonvulsant drugs.
• American Sleep Apnea Association (ASAA) - Have nocturnal seizures? Lack of oxygen from sleep apnea might be playing a part. Learn more about it here.
• Epilepsy Research Program, Inc. - Andrews/Reiter research and treatment program in Santa Rosa, CA uses a range of wellness, stress reduction, biofeedback and psychological methods tailored to each individual's needs to treat epilepsy.
• MedlinePlus - A database of drugs, supplements, and herbal information from the U.S. National Library of Medicine and the National Institutes of Health. Learn all about the AEDs you are taking here.
• MedWatch - Lists safety information on drugs and other medical products regulated by the U.S. Food and Drug Administration. The site has an online form for the voluntary reporting of serious adverse events, potential and actual medical product errors, and product quality problems associated with the use of FDA-regulated drugs, biologics, devices, and dietary supplements. You can report any side effects for the drugs/treatments you use here.
• PubMed - PubMed is a service of the U.S. National Library of Medicine that includes citations from MEDLINE and other life science journals for biomedical articles back to the 1950s. PubMed includes links to full text articles and other related resources. You can research medical studies here.

Other

• Accessibility Online - Australia's leading disability information website. Includes an extensive coverage of news, products and support services for over 200 specialized topics, including aged care and rehabilitation.
• Health Directories - A list of miscellaneous health directories.