The area of seizure monitors/alarms or alert devices is an area of research which is constantly developing and as technology continues to improve, more devices will likely be available to help people with epilepsy. To date there has been no proven evidence to indicate that using a monitor or alert device can guarantee the safety of a person experiencing seizures or prevent SUDEP but it may offer some peace of mind to the carer. No alert device or monitor has been designed to prevent seizures or the possible impact of seizures. Research is continuing in this area to determine the benefits of this technology.
Epilepsy New Zealand have devised some questions which may help you to research safety alert devices on offer:
- Speak to your specialist to see if he/she has any recommendations backed up by medical research.
- Many devices are expensive so before purchasing contact the manufacturer directly and discuss the features of the device to ensure that it is suitable for your needs.
- If you are considering an alerting system, does the device detect your particular seizure type? Different seizure types may be detected by different methods e.g. heart rate, oxygen levels, movement or perspiration.
- What is the purpose of the device you require? For example do you require it for: Organisation and reminders for you, alerting others to your seizure activity, tracking and monitoring seizures for yourself or/and to share with Doctors (is this data secure?) or providing useful information to carers?
- Comfort and ease. Is the device comfortable to wear? Is the person happy to have the device on display?
- Is the device/app suitable for any specific age?
- Does the device need power to charge?
- Does the device/app require wifi?
- What is the capacity and distance it can track, record, alert and store information?
- What else will the device need? g. apps, monitors, smart phone, camera, specific watch, fitbit or Ipad
- How straight forward is the set up and is there a set up and installation cost?
- What happens if the device breaks (insurance, warranty, replacement cover)
- Is there a one off cost/ subscription cost/monitoring cost?
- What is postage cost to NZ?
- Can you get some of the cost covered by WINZ benefit? (view here for more details)
- Is it compatible with NZ power outlets?
Below are a few links to products/devices and/or apps available in New Zealand or Australia. This is not a comprehensive list but just a few of the options available.
The documents linked below provide an overview of monitors, alert devices, apps and other aids which are currently available in 2021. The document provides information and reviews on the devices.
Epilepsy New Zealand’s List of Apps, Devices and Alarms.
Below are documents provided by Epilepsy Foundation Australia:
Epilepsy New Zealand does not warrant or endorse these products, instead we offer introductory information about the potential of these devices. We recommend that you speak to your doctor or specialist about whether a device is something that you might choose to use.
What is a seizure Monitor/Alarm?
A seizure monitor/alarm or alert device can help notify others when a seizure happens. An alarm is then triggered so that assistance can be provided. Seizure alarms/monitors, may be helpful especially for children who have seizures during the night. Whilst they cannot guarantee safety or be accurate in detecting all seizures, they can provide a little peace of mind for some people.
However, learn as much as you can about these devices and speak to your doctor before making a purchase or commencing use of one. This will help you to decide whether a particular device is suitable for your situation and needs.
Some alarms/monitors or alert devices involve ‘wearable technology’ – smart electronic devices that you wear as an accessory (like a watch). Some watch-based seizure alert devices respond to repeated shaking movements, which may indicate the person is having a seizure. This can be useful for detecting tonic-clonic seizures, as well as focal motor seizures (if there is enough movement involved).
HIRE From Epilepsy New Zealand
Epilepsy New Zealand does not endorse any of the products we hire out but we do offer you the opportunity to trial these products.
We hire out the Emfit Seizure Monitor for a period of 1 to 3 months (Depending on demand) If you feel you would like to ‘try before you buy’ please ring 0800 374537 during office hours.. We also hire out Baby Monitors.
Epilepsy New Zealand does not accept any responsibility for set up. You are expected to read all of the documentation and videos recommended for your own personal set up.
View here for more information on EMFIT Tonic Clonic Seizure Monitor
Benefits and Limitations
Some of the benefits of these devices include:
– The devices can notify nearby family or caregivers when a seizure occurs through alarms, phone calls or text alerts, depending on the device.
-These monitors may provide peace of mind to parents who are concerned their child may have a seizure while sleeping without them knowing.
-These products may assist with the role of a care provider supporting a client in a residential home
-Some of these products provide recordings and data that can be shared with your specialist. (SAMI a sleep activity monitor is one such device)
Some of the limitations of these devices include:
– They cannot detect all types of seizures. If your seizures do not involve big repeated movements, then the device will generally not be triggered.
– They may cost several hundred or thousands of dollars, which may not be affordable for some people.
– They have been known to send false alarms or not pick up seizures
– Seizure alert devices may not be practical for people who live alone or who don’t want others to check on them.
– Some of the devices have not been studied in a systematic fashion so may not work well in a “real world.” situation.
– We need more scientific evidence to prove how well seizure alert devices work and if they are helpful in preventing SUDEP