Feature Article: Seizures can be scary-how you can increase safety and security in epilepsy
Seizures can be scary-how you can increase safety and security in epilepsy
Seizures can be scary, especially for the family of someone with epilepsy (parents, spouses, children) as well as for the person with epilepsy (PWE) who may not be conscious during his/her seizures but hears about them later.
The idea for this article came out of our most recent epilepsy support group meeting when a spouse expressed concern regarding safety and the moderator put together a document with a series of safety items. These were shared with the group members and then it just seemed like a great idea to share this information with our readers as well. And that is how it came to be that our December feature article is on how to stay safe/safer when living with epilepsy.
Over the years, the Northeast Regional Epilepsy Group quarterly newsletter identified ingenious and novel devices that were invented by people from across the globe to ensure greater safety for those living with seizures. Some inventors were parents or someone with a personal connection with epilepsy, some were researchers, doctors, or engineers. In the last few years, each of these items has been featured in a brief article in the Safety with epilepsy section. Below you will find all these articles/items organized into this single piece. Also, keep in mind that in recent years, some of these products have been further perfected, one of them obtained FDA-approval, and so information on some of these products has now been updated.
Seizure-safety in the bedroom
The sleep safe pillow
The Sleep-Safe® pillow was designed by a father whose son had epilepsy. Both parents were very concerned about his safety in case he had a seizure while sleeping. The Sleep Safe® pillow has a micromesh cover and a profiled surface (Thru-Channelling and the AeroMatrix) which allow air to pass between the cover and the surface of the pillow and through the body of the pillow itself. In addition, the micromesh cover is flame retardant.
Lab tests have demonstrated that the air-flow breathability of the Sleep-Safe® pillow is significantly better than other types of commonly used pillows.
Furthermore, the Sleep Safe® pillow is registered as a Class I Medical Device by the Medicines and Healthcare Products Regulatory Agency ('MHRA') which is the UK government agency that is responsible for ensuring that medicines and medical devices work and are acceptably safe. The MHRA is an executive agency of the Department of Health. (the British equivalent of the US FDA).
For more information about the Sleep Safe Pillow, check out this full article: https://www.epilepsygroup.com/notes6-35-15/safety-devices-in-epilepsy-the-sleep-safe-pillow.htm
To purchase: https://www.sleep-safe.co.uk/
Mattress Pad for Seizure Detection:
Emfit:
The Emfit Movement Monitor includes a thin bed sensor that is slipped under the mattress and is attached to a control unit. It can detect even the slightest movements of the person lying in the bed, including micro-movements caused by the heart beating. When faster, continuous movements go past pre-set thresholds, a notification is sent out.
To purchase: https://www.epiusa.net/movement-monitor
Wearable seizure monitors: Seizure detection devices for when the person with epilepsy is out and about
Embrace:
Embrace2 is the only FDA-cleared wrist-worn wearable device for epilepsy and seizure detection. It is designed to detect convulsive seizures and instantly alerts designated caregivers through a text or phone call. The Embrace comes in a wide selection of colors.
Since Embrace is FDA approved, you need to have a doctor's prescription to purchase if you are based in the US. Due to the COVID-19 emergency, purchasers have 120 extra days to provide the company with the prescription. Once you have it, you can upload it anytime on your MyEmbrace portal.
To read the full article: https://www.epilepsygroup.com/notes6-35-172/safety-and-epilepsy-what-is-embrace-and-how-can-it-help.htm
To purchase: https://www.empatica.com/store/embrace2/
Epilert:
EpiLert is a device worn like a bracelet that can detect the limb movements specifically associated with epileptic convulsions. It does this using a mathematical algorithm. It then sends a signal to alert caregivers within 20 seconds of seizure onset.
The device was thought up by Prof. Uri Kramer, Pediatric Neurologist at Tel Aviv, Sourasky, Medical Center who treated children with epilepsy. He recognized the need for an alert device that would free families from having to supervise patients 24 hours a day, including at night.
The movement sensor is worn like a watch and it transmits signals to the Alert unit that is with the caretaker. The device senses the onset of a seizure through the detection of seizure-specific limb movement and alerts the caregiver when the seizure begins. The device also records pertinent information regarding the seizures while it is occurring. Over the years, Epilert has been perfected. For example, it is now waterproof and also collects data on heartbeat, skin temperature, motion, electrodermal activity coupled with machine learning and artificial intelligence (AI). It is equipped for geolocation and there is a mobile application for most of phones using Android or iOS (Apple).
For more information on Epilert, you can read this full article https://www.epilepsygroup.com/notes6-35-2/a-seizure-detection-device-that-may-help-prevent-sudep-.htm
To purchase: https://epilert.io/
Smart Monitor (Watch):
The Smart Watch is worn on the wrist of the patient. It detects abnormal motion: Inspyre™ continuously monitors the wearer and detects repetitive shaking motions such as might occur during a seizure. When that happens, the wearer's device (iPhone or Android phone) sends text and phone call alerts to the designated family member or other carer.
There are different plans (Bronze, Silver, Gold) that include different features including geolocation, heart rate monitoring, medication reminders, etc.
For more information, you can read the full article here: https://www.epilepsygroup.com/notes6-35-33/safety-in-epilepsy-potential-seizure-detection-device.htm
To purchase: https://smart-monitor.com/order-now/
The Brain Sentinel:
The Brain Sentinel is worn on your biceps; it is lightweight, non-invasive and continuously monitors your surface electromyography (sEMG) signals which reflect the activity in the motor cortices of your brain. It can detect tonic-clonic muscle activity that is indicative of a generalized tonic clonic (GTC) seizure. Once recorded, the data are sent to and stored securely by Brain Sentinel where hours of data are analyzed. At the end of a monitoring period, the patient's doctor receives a full report. The Brain Sentinel has undergone extensive testing with epilepsy and psychogenic non-epileptic seizures.
To read the full article: https://www.epilepsygroup.com/notes6-35-203/the-brain-sentinel-detecting-seizures-anywhere-and-anyt.htm
To purchase: https://speacsystem.com/
Helmets:
Protectacap:
Plum's® ProtectaCap® is the innovative protective headgear engineered for superior impact absorption and head protection but designed to be amazingly comfortable, lightweight [only a few ounces] and completely custom-fitting with full head coverage that does not slide around. These helmets offer superior safety, fit snuggly, and are incredibly lightweight which makes them tolerable to even babies and toddlers. They are available in many different colors and sizes.
To read the full article: https://www.epilepsygroup.com/notes6-35-234/staying-safe-with-seizures-plums-protectacap.htm
To purchase: https://www.plumenterprises.com/
The Hövding helmet
This particular helmet was originally designed for bicycles but was later also marketed for epilepsy wearers. It is not FDA-approved or MHRA approved for this purpose but some have found it useful and especially because it is worn around the neck and only activates if needed, it is less bulky than an actual helmet. It acts like a car's airbag for the head. It can also be programed to contact designated "In case of emergency" contacts and can be adjusted to different head sizes. On the company's website you can see a brief film that shows how the helmet works.
To read the full article: https://www.epilepsygroup.com/notes6-35-77/safety-for-epilepsy-helmet.htm
To purchase: https://hovding.com/?_ga=2.135478833.1257205830.1605984660-1216118413.1605984660
Seatbelt for epilepsy:
For anyone who ever wondered what might happen if in a motor vehicle accident and the driver is unconscious and unable to inform emergency medical responders that a child or adult in the car has epilepsy: the Help Belt is designed for this type of emergency. It fits over the person's seatbelt and clearly states "Individual with Epilepsy--Open in case of emergency." Inside the emergency personnel will find medical information and emergency contacts. The Help Belt has been sold all over the world and has received very positive reviews.
To read the full article: https://www.epilepsygroup.com/newsletter_notes.php?idseccion=6&idsubseccion=35&idnota=197
To Purchase: https://www.helpbelts.com/product-page/epilepsy-medical-alert-help-belts
Seizure dogs:
4 Paws trains seizure assistance dogs to work with children. Most agencies will not work with children, especially very young children. 4 Paws has no minimum age requirement.
There are two types of dogs trained to help with seizure disorders: Seizure Response Dogs and Seizure Alert Dogs. 4 Paws trains their dogs as seizure alert dogs and therefore they refer to them as Seizure Assistance Dogs.
To read the full article: https://www.epilepsygroup.com/notes6-35-112/safety-in-epilepsy-4paws-for-ability.htm
To read more about 4 Paws and how to obtain a seizure alert dog: https://4pawsforability.org/seizure-assistance-dog/
Medication reminders and organizers:
In epilepsy, as with many medical conditions, the number of medications that are often prescribed for different times in a day can become highly confusing. If you then throw into this mix, difficulties with memory and attention, it can become completely overwhelming. With this in mind, a multitude of medication reminders and organizers have been produced and are available.
To read the full article: https://www.epilepsygroup.com/notes6-35-39/safety-in-epilepsy-medication-reminder-alarm.htm
To purchase (this is just one of many companies that offer these types of products): https://www.epill.com/
We hope that you may find the information about these products, devices and even seizure assistance dogs useful. Perhaps you may decide to look further into some of these products as they may fit your situation or help increase your personal safety.