Here are some information sites we recommend for finding out more about epilepsy and epilepsy research. If you know of a good one we’ve not listed, please tell us about it.
Please note: if you would like information about/support for non-epileptic attack disorder (NEAD), you can visit NEAD Support.
For all aspects of epilepsy and seizures
Aid Training & Operations Ltd: An employer’s guide to epilepsy in the workplace.
eMedicine Clinical Knowledge base: Extensive technical information about human medical issues, including epilepsy, primarily designed for medical professionals.
Epilepsy Action’s information pages: Excellent information about epilepsy, seizures, and treatment, including information on living with epilepsy in the UK (eg, driving and disability regulations).
EpilepsyDiagnosis.org: An online manual with the latest information about diagnosis of the epilepsies. Developed by the International League Against Epilepsy in partnership with eResearch, University of Melbourne, Australia
Epilepsy Society’s information pages: More information about epilepsy, seizures, treatment and including information on living with epilepsy in the UK (eg, driving and disability regulations).
Healthline: A diagram highlighting the ways in which epilepsy can affect different parts of the body, with jump links to more information.
Patient: A trusted online source of health information (UK-based).
www.epilepsy.com: Comprehensive, very readable information about all aspects of seizures, diagnosis, treatment and living with epilepsy. The site is US-based, so some information about medications, legal and cost issues may not be correct for residents of the UK.
Seizure types list from Epilepsy Ontario:Comprehensive list of seizure types with descriptions from Epilepsy Ontario
Epilepsy Action, 0808 800 5050: Confidential advice and information from trained staff, on diagnosis, medication, driving, pregnancy and other issues related to living with epilepsy.
Epilepsy Society, 01494 601400: For people with epilepsy, their families, friends, carers, employers, GPs, nurses, healthcare professionals, schools, students…
Brain and Spine Foundation, 0808 808 1000: A service run by neuroscience nurses and other health professionals, covering all brain and spine conditions, from fairly common to the very rare.
Epilepsy Scotland, 0808 800 2200: A confidential freephone number for anyone looking for advice or information about epilepsy.
Treatments for epilepsy
Electronic Medicines Compendium: Searchable database of official technical information about all medications available in the UK, including side effects and possible interactions with other medicines. Type the name of the medication into the search box.
Vagus Nerve Stimulator: Information site provided by Cyberonics who make the VNS implant.
Surgery information summary page: From InteliHealth, reviewed by Harvard Medical School.
Ketogenic diet resources: Matthew’s Friends – for parents of children on the ketogenic diet: information, advice, recipes, support and contacts.
Daisy Garland: A charity that funds ketogenic dieticians in hospitals around the UK and gives grants for night time breathing/SATs monitors for use in the home thereby helping to reduce the risk of SUDEP.
Seizure alert bracelets
MedicAlert: A charity that provides medical identification jewellery for people with medical conditions and allergies.
Resources for young people
YouthHealthTalk.org: In this multimedia website, launched by YouthHealthTalk.org, young people with epilepsy communicate their experiences through written information, videos and audio clips. It aims to help young people who have epilepsy to understand it better and feel more at ease.
Epilepsy and pregnancy
UK Epilepsy and Pregnancy Register: For pregnant women with epilepsy, a potential concern may be whether their anti-epileptic treatment will cause harm to their unborn child. There is a major study in the UK investigating which epilepsy treatments show the lowest risk to a baby’s health.
Organisation for anti-convulsant syndrome: A charity that raises awareness about the risks to unborn children when women take anti-epileptic drugs during pregnancy. It also provides an avenue of support for people who have been affected.
Sudep Action: Information and support for people who have lost a loved one due to epilepsy.
The science of the brain
Neuroscience for kids (and adults!): Excellent, very readable site explaining how the brain works.
Treatment regulations in the UK
Newer anti-epileptic drugs in adults – guidelines: National Institute for Clinical Excellence official guidance for the NHS in England and Wales; includes a patients’ guide.
Newer anti-epileptic drugs in children – guidelines: National Institute for Clinical Excellence official guidelines for the NHS in England and Wales; includes a patients’ guide.
Diagnosis and treatment of adults and children with epilepsy – guidelines: National Institute for Clinical Excellence official guidelines for the NHS in England and Wales; includes a patients’ guide.
Scottish Intercollegiate Guidelines Network: Diagnosis and treatment of epilepsy in adults – official guidelines for treatment in the NHS in Scotland.
The Directgov directory: Comprehensive UK government website with links to information on all aspects of public services including health services, driving regulations and benefits.
The latest research into epilepsy
MedScape: Up-to-date medical information and the newest research – free registration required.
The PubMed database: Global database of all medical research published in listed journals.
External website links are provided for convenience and for information only; they do not constitute an endorsement by Epilepsy Research UK.
Further links provided by supporters
http://www.cdc.gov/ncbddd/disabilityandsafety/child-safety.html: Information from the CDC in the US about how to keep children who have disabilities safe.