There are numerous devices and tools available today which may be useful for some people with epilepsy to help them stay safe while they are still experiencing seizures. It is great to see that there are new alert monitors on the market and more being researched and developed. Hopefully this interest will mean that one day we will have evidence of a monitoring system that is proved as a reliable intervention for SUDEP.
In the meantime, these monitors can offer some peace of mind. We know from some of our bereaved families, that should they have known about the risk of SUDEP, they would have sought advice on such devices. In doing so they would have felt they had done all they could to protect their loved one, as it may have made a difference. Instead some are left feeling guilty for ‘not doing enough’.
However, there is a danger that people with epilepsy and their Doctors, faced with a bewildering range of devices may have difficulty in coming to a balanced interpretation of the marketing. People with epilepsy must discuss with their Doctors the pros and cons of each device. It is important to ask for the evidence on reliability and also evidence on false alarms which can be disruptive for the family. Given the current research on such devices, it is likely that some deaths will still occur and people should be made aware of this possibility when discussing such devices.
The best way to prevent SUDEP is to stop seizures occurring in the first place, and this is something which should be discussed between the person with epilepsy and their Doctor. There are things you can work together on to monitor and reduce your risks – see our current leaflets and our SUDEP and Seizure Safety Check List and EpSMon pages for more information which may help.
Professor Stephen Brown (Epileptologist & Professor of Developmental Neuropsychiatry (retired), SUDEP Action Chair of Trustees) has previously outlined current thinking on safety devices and you can read the article here.
A 2016 literature review looks at the current evidence available for seizure detection devices. You can read the article 'Safe and Sound? A systematic literature review of seizure detection methods for personal use.' here.
The article has been recognized in Seizure (the official journal of Epilepsy Action), in which it is published, as the Editors Choice. It was awarded this by Dr Mark Reuber, the Editor in-Chief because of its ‘medical or social importance for people with epilepsy and researchers in the fields related to epilepsy.’ You can also read the editors comments here.
Another useful source of objective information can be found in the latest Cochrane Review on SUDEP interventions.
For further information on specific forms of safety devices, please follow the links below:
- EpSMon - the Free, Award winning app for people with epilepsy
- The SUDEP & Seizure Safety Checklist, a free award winning tool for Health Professionals
- Medical ID cards or Jewellery
- Alarms & monitors
- Seizure alert dogs, Anti-suffocation pillows and protective headgear
Here are some questions you may find useful to ask your doctor or epilepsy specialist about these safety devices: