Epilepsy Talk
Top-Rated Seizure Monitors | July 17, 2012
Peace of mind. A good night’s sleep. Safety and assurance.
Although these seizure monitors can’t make any guarantees, they can go a long way towards detecting danger. And maybe even saving a life.
Here are the most prominent models:
Medpage Epileptic Nocturnal Convulsive Seizure Monitors
The Medpage range of seizure monitors are designed to detect Tonic-Clonic seizures, which they do very successfully with the majority of patients. Partial or absence seizures would not be detected where only facial or occasional limb twitching occurs. It is not recommended to attempt to use a monitor to detect those seizure types.
A sensor is placed between the bed base and the mattress. When a seizure begins, the muscular convulsions are detected by the bed sensor(s). All models feature an adjustable delay control, used to allow a certain amount of movement before an alarm is generated. The bed sensor sensitivity level can be adjusted to compensate for patient weight, type of bed base and mattress type. All Medpage models feature an anti-tamper alarm to warn if switched off by patient.
MP2 Nocturnal Epileptic Convulsive Seizure Monitor (UK only, but shipping quotes available.) http://www.medpage-ltd.com/page24.html
The MP2 incorporates a bed sensor for convulsive seizure detection and is equipped with a microphone for the detection of aural sounds.
Three simple controls provide bed sensor and microphone sensitivity and movement alarm delay. The sensor is positioned under the patient’s mattress. Should seizure activity begin, the sensor detects the abnormal movement. When the movement has continued beyond the delay setting, an alarm output is generated. The MP2 is equipped with a transmitter that sends an identification signal to a radio pager, desktop alarm receiver and or a telephone auto dialer.
MP5 Convulsive Seizure Detector Single Sensor Alarm (US, UK, Europe, Australia) http://www.medpage-ltd.com/page25.html
The MP5 is used for people above 56 lbs. (for monitoring 1 person) and is supplied with two radio pagers.
A sensor is placed between the bed base and the mattress. When a seizure begins, the muscular convulsions are detected by the bed sensor(s). All models feature an adjustable delay control, used to allow a certain amount of movement before an alarm is generated. The bed sensor sensitivity level can be adjusted to compensate for patient weight, type of bed base and mattress type. All Medpage models feature anti-tamper alarms to warn if switched off by patient.
The MP5 is the most popular seizure monitor with over 6,000 monitors in use worldwide.
Movement Monitor (US, Canada) http://www.emfit.com/en/care/products_care/movement-monitor/
The Emfit Movement Monitor consists of two main components; a flexible and durable bed sensor (L-4060SL) which is placed under the mattress, and a bed-side monitor (D-2090-2G) with sophisticated embedded software. The Movement Monitor detects when a person has continuous quick-paced movements over a pre-set period of time and then triggers a notification. The system also notices light movements, thus making it equally suitable for small children.
The control unit can be placed next to the bed, or on the wall, using the included fastening bracket. It is operated with 2 standard AA size 1.5 V batteries. An optional, medical grade AC adapter is also available.
Aremco (US, UK) http://www.disabilityworld.com/co/company.php?ID=3460
Aremco are leaders in the field of providing monitoring systems for detection of symptoms which may be associated with epileptic seizures.
The system provides a multifunction monitor with sensor systems including a movement sensor plate, microphone and moisture sensors. The system can detect seizure related movements, breathing movements associated with respiration, respiration rate, transient sounds, excess moisture or fluids, and bed occupancy. Audible alarms can be set for all of these parameters.
UMP Battery-Operated Infrared Bed / Chair Monitor http://www.stanleyhealthcare.com/solutions/resident-safety/fall-management/ump/monitors
The UMP Infrared Bed Monitor alerts the caregiver when an individual attempts to leave the bed.
The monitor uses infrared technology to discreetly monitor any movement from a bed. There are no cumbersome pads or cushions. The device works by emitting a harmless infrared signal that alerts the caregiver, either by triggering an audible alarm or by sending an electronic signal to a remote location through a call system.
Smart Watches:
NEW! Apple Seizalarm — A user-friendly iPhone and Apple Watch app which allow those with epilepsy and other seizure disorders to alert emergency contacts automatically when seizure-like motion is detected or manually if they need immediate help or think they might need help soon. Detects seizure-like motion, requests immediate help, seizure monitoring control, GPS location tracking, and event log tracking. http://seizalarm.com/
Embrace — Created to track your activity, stress and overall body balance, enabling people who live with Epilepsy to get an alert when an unusual event happens such as a convulsive seizure, warning them and their loved ones. https://www.empatica.com/product-embrace
The SmartWatch — A motion detecting and alerting wristwatch that can detect seizures and alert caregivers within seven to 10 seconds. http://www.smart-monitor.com/
For details and pricing information, please call 1-888-334-5045.
Epilepsy Detector Application — An accelerometer based mobile phone application that uses advanced signal processing to detect epileptic seizures. It runs on most mobile phones that support SMS messaging, movement detection and GPS position location. http://www.epdetect.com/
SAMi — A night vision monitor used to monitor and record abnormal sleep movements. Runs on an iOS device such as an iPhone or iPod Touch. http://www.samialert.com/
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Tags: absence, adults, Apple SeizAlarm, Aremco, breathing, children, convulsive, delayed control, Emfit, Epilepsy, infants, infrared technology, jerking, Medpage, microphone, microprocessor, moisture, moisure sensors, monitors, MP5, nocturnal seizures, quick-paced movements, radio pagers, seizure, sensors, shaking, software, sounds, ST2, tonic-clonic, top rated, transmitter, UMP
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We must be on the same brain waves. Last few weeks, i’ve been thinking about monitors that will alert people of oncoming seizures. I was thinking that the heart rate goes up before a seizure. I’m not sure about this, but if it does, then i think that could be used as a warning device too. I’ve been meaning to buying a heart rate monitor to see if this is actually true.
My aura’s are not as good as before and sometimes i get false auras. I’m lucky though i do get auras, in time for me to get to my emergency pill, before it’s to late. Once my hand starts to flail, it would be incredible difficult to get the meds out. Especially living alone.
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Comment by Zolt — July 17, 2012 @ 4:32 PM
Well then, I guess an aura is your friend. Otherwise, it wouldn’t be easy (or even possible?) to get your meds.
The good news is that recent articles have discussed the possibility of delivering an antiepileptic drug quickly by nasal spray.
So you’d have something quick, once you felt an aura. Or even during cluster seizures.
Klonopin, Valium, Ativan, and Midazolam nasal sprays are still under study.
(Ask your neuro about them, because they’re relatively new.)
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Comment by Phylis Feiner Johnson — July 17, 2012 @ 5:13 PM
I’ve read about the nasal sprays here on your column i think. It would be quick and convenient, but i would rather put the pill under my tongue, there just seems something nasty about nasal sprays. 🙂 Right now my epill is Ativan and so far, it’s stopped my seizures. I’ve had 7 so far this yr, once a month on average.
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Comment by Zolt — July 17, 2012 @ 5:47 PM
Goodmorning once again Phylis 😉. I used to pride myself on just going out whenever to the nature parks 😃. However after my “MAJOR CONCUSSION” I was constantly told my glucose and sodium levels were TOO LOW!! And at times now still can be. So aside from purchasing a golden retriever (their supposed to be the best for seizure detection) which I’m still waiting for I found the even just thinking of going out now has become a sad dream. My husband and I have though of the seizure watches for not only myself (an epileptic), but for him (a diabetic) as well. They ONLY CATCH WAS “AFFORDABILITY”!!!!! The watches and phones TO US is a DREAM IN JUST THE THOUGHT!!!!! I just wish here in Alberta, Canada there was a was to be able to afford those watches!! If there was we’d have one (AT ALL TIMES) and I would be LOST TO NATURE!!!!!!! 😘
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Comment by Kathy S.B — March 24, 2019 @ 1:49 PM
I think the Golden Retriever will be a much more effective “seizure detector” than any watch can be!
Is he/she going to come trained, or will you be training him/her yourself?
Good luck! I’m very happy for you.
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Comment by Phylis Feiner Johnson — March 24, 2019 @ 2:13 PM
These are great for those that have movement or aura. I wish I had an aura at times. These items sound great!
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Comment by Toni Robison — July 17, 2012 @ 4:52 PM
Mmmmmmm…you’d love my aura. Salivating (like a bloodhound) with a disgusting metallic taste in my mouth.
At least I know it’s time to hit the floor!
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Comment by Phylis Feiner Johnson — July 17, 2012 @ 5:16 PM
[…] https://epilepsytalk.com/2012/07/17/top-rated-seizure-monitors/ Share this:TwitterFacebookLinkedInLike this:LikeBe the first to like this. […]
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Pingback by Top-Rated Seizure Monitors « epilepsyconnection — August 1, 2012 @ 11:28 AM
Where do you get the Aremco monitor? I don’t see anywhere to order from on the link listed above. My 4yo son had two big long lasting seizures where his breathing was compromised and neither were convulsive. We are worried about him having one at night and need some way to monitor him so he can go back to his room. He is on Keppra. The Emfit does not seem like would do us any good for his case.
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Comment by Michelle Y Dyszelski — December 4, 2012 @ 2:33 PM
You can try emailing them at aremco@ontel.com. That’s your best bet, because they’re a British company.
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Comment by Phylis Feiner Johnson — December 4, 2012 @ 4:20 PM
Any reccommendations for seizure wrist monitors? My sister lives alone & has frequent grand mals. Thanks,
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Comment by Miriam — February 7, 2013 @ 10:58 PM
Yes! There’s a brand new seizure sensing monitor that’s a WRISTWATCH.
It’s called a SmartWatch and has a GPS plus a sensor to detect the motions that occur during a grand mal seizures.
It then records the time, duration and location of the occurrences and sends that information via Bluetooth to the accompanying app on your Android smartphone.
The app tracks and stores the info and automatically calls your designated caretakers to alert them of the seizure.
The watch also has physical buttons on the side that allow users to cancel a false alert or manually send one out with a single press.
For details and pricing information, please call 1-888-334-5045.
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Comment by Phylis Feiner Johnson — February 8, 2013 @ 10:25 AM
Well still waiting for my puppy which may take a bit of time unfortunately. The watches however (in the meantime) would still be good because then they could be used while still out and about due to the gps locater even if I do or when I do get my puppy. I actually paid for the puppy myself and if need be will train myself as well. It almost seems to me as though it’s “second nature” to our animals anyways. I JUST WANT TO GO AND GET OUT WITHOUT BEING AFRAID FOR MYSELF OR A BURDEN ON MY HUSBAND AND CHILDREN!!!!!!! Lol I WANT TO GO WHENEVER WHEREVER AND HOWEVER LONG I WANT!!!!! 😘🦅🦅🦅🦅🦅🙏🏼❤️❤️
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Comment by Kathy S.B — March 24, 2019 @ 2:37 PM
I can certainly understand.
But, since the watches are out of reach financially, I still think you can consider yourself fortunate to have a future with this new puppy.
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Comment by Phylis Feiner Johnson — March 24, 2019 @ 4:00 PM
Goodmorning Phylis 😊. You are VERY RIGHT!! I guess now that it’s spring I’m stating to have “spring fever” and I just want to go out. Lol I’m not a big spender, but I do simply love nature and being outside of possible and it’s the waiting that’s killing me!!!!! I’ve been waiting for almost 2.5 years now and I’m thinking “maybe I’ll just go with my little chihuahua 😘. Thank you and please have a very good day today 😊
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Comment by Kathy S.B — March 25, 2019 @ 1:42 PM
[…] in case you didn't have time, here's a page rating seizure alarms, they go under the matress…. Top-Rated Seizure Monitors | Epilepsy Talk and here's a page to order the North American one: Emfit Ltd – Emfit Movement Monitor / USA and […]
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Pingback by Carver update - Page 5 — April 14, 2013 @ 11:15 PM
Hello. I have been looking at these apps. Call Up and Bitfit flex- health bracelet that monitor sleep n fitness n daily patterns . Was wondering if these would be beneficial to people with epilepsy? Help.monitor their health for themselves and doctors. I had suggested to Up if it could adopt to a person with a seizure disorder. Like add a alarm to there restbands.
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Comment by Vanessa — August 19, 2013 @ 3:42 AM
Funny you should ask. I read the info about the SmartWatch on epilepsy.com (where it’s actully being endorsed and advertised) and I have to believe it’s the real deal.
Take a look at these links and see what you think.
New! SmartWatch — a seizure sensing wristwatch.
http://www.epilepsygroup.com/newsletter_notes.php?idseccion=6&idsubseccion=35&idnota=33
http://www.engadget.com/2012/04/04/hands-on-with-smart-monitors-smartwatch-the-seizure-sensing-wr/
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Comment by Phylis Feiner Johnson — August 19, 2013 @ 9:14 AM
I have my 9 year old daughter who is suffering from epilepsy. The information you have shared here is extremely useful for people like me. Thanks for sharing.
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Comment by Chris Tyler — October 31, 2013 @ 5:24 AM
Any time we can help, we’re here!
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Comment by Phylis Feiner Johnson — October 31, 2013 @ 9:11 AM
Those uplifting feelings also worked to become simple strategy to comprehend different people have a similar passion exactly like my very own to learn significantly more in terms of the issue. I am certain you will find a whole lot more agreeable examples at the start for people that begin reading your website. %KW%
Abigail https://twitter.com/puntoGT
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Comment by Abigail — December 15, 2013 @ 10:23 PM
Thanks Abigail. I thought your article about freedom was very compelling. (Once I translated it!)
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Comment by Phylis Feiner Johnson — December 16, 2013 @ 9:39 AM
My girl is 6 and has had seizures that started not long after her 3mnt jobs. She has devays syndrome. She had a seasure in her sleep and drowned in her dribble so she how has to learn to walk,talk etc again. What system do you think would help with her? Thanks Andrew.
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Comment by andrew — September 17, 2014 @ 7:55 PM
Andrew, I think you have to work in tandem with a neurologist and cognitive therapst.
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Comment by Phylis Feiner Johnson — September 17, 2014 @ 8:22 PM
I Have been suffering from the problem of epilepsy from when a was a child,until i met a great Dr Ebato who helped me out i got is contact from the testimony of others, now am fully well.all thanks to him.any one with such problem can also contact him on +2349038504409 or ebato1232@gmail.com
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Comment by John — October 11, 2014 @ 10:08 AM
John, that’s really important (and helpful) information. Would you mind posting it again in
2014-2015 Comprehensive List of GOOD Neurologists
…Epileptologists…Neurosurgeons…and Pediatric Doctors
https://epilepsytalk.com/2014/08/06/2014-2015-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors-3/
I’m sure it will be helpful in the updated list!
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Comment by Phylis Feiner Johnson — October 11, 2014 @ 12:00 PM
I just ordered 2 Empatica Embrace’s watches – One for me and one for my wife. This will alert her should my I have a seizure and I not respond to her. It also notifies both of us when my stress level exceeds the norm, among other things. I think the name of the collection I bought was the ’empathy’ collection which is their second run of these watches which will be out October 2015. https://www.empatica.com/product-embrace
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Comment by Mike Ivey — February 4, 2015 @ 10:28 PM
The Embrace watches sound so exciting. I’ve been following their development and they seem amazing. (Not to mention extremely attractive.)
Once they launch, I fear they’ll be eating the Smart Watch’s lunch!
Tell me how you and your wife like yours after you get them…
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Comment by Phylis Feiner Johnson — February 5, 2015 @ 9:13 AM
This is a really good summary, thanks!
I ordered an Embrace for our Son, but because I’m not sure when it will actually arrive, I developed my own version using a Pebble smart watch – it looks for the shaking associated with a tonic-clonic seizure and runs on low cost hardware (you need a Pebble watch and a cheap android device, so ~£120 in total, as the software is all free).
If anyone would like to test it and provide feedback that would be great, because Benjamin hasn’t had a tonic-clonic seizure since we have been using it so it is not proven yet.
More details at http://openseizuredetector.org.uk if you are interested.
(I also have a ‘Similar Projects’ page which lists a few other seizure detector projects that you don’t have here).
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Comment by Graham Jones — April 30, 2015 @ 1:51 PM
Graham, my husband has a Pebble Watch which is terrific (looking), but he does not have epilepsy.
I agree that the Embrase Watch that we’re all waiting for will be the ticket.
Have you tried the Smart Watch? http://smart-monitor.com/
Any and all seizure detector / monitor additions and suggestions of yours would be greatly appreciated by all. Including me, for sure!
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Comment by Phylis Feiner Johnson — April 30, 2015 @ 4:10 PM
Hi, I haven’t tried the smart watch. I don’t think it was available when I started looking into seizure detectors, and I thought (incorrectly I think) you had to take out a subscription to their service.
Do you have any trouble with false alarms with it? I had a lot of trouble working out how to filter out the ‘normal’ odd movements of an autistic boy from something that looks like a seizure, but think I have for it about right with the OpenSeizureDetector pebble watch detector.
You might be interested in http://neutun.com which is another pebble based detector (but I think it gives more false alarms, although I may be biased!)
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Comment by jones139 — May 1, 2015 @ 3:33 PM
I’ve never heard of it, but that doesn’t mean anything. However, when I tried to get into the website, I couldn’t. All they offered was to sign up, which led to a gmail.
Frustrating. Perhaps that’s why they’re under the radar. Hmmmm.
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Comment by Phylis Feiner Johnson — May 1, 2015 @ 6:42 PM
Hi,
No, I haven’t tried the Smart Watch – I don’t think it was available when I started experimenting with seizure detection, and I thought (incorrectly it seems) that it required a subscription, and I was quite keen on developing something that was free and open for anyone to use and customise.
How is Smart Watch at distinguishing seizures from false alarms? I had quite a challenge setting up the OpenSeizureDetector pebble system (http://www.openseizuredetector.org.uk/?page_id=415) to distinguish between the ‘normal’ odd movements of an autistic boy from a seizure – I think I have mostly got it – he can make it alarm with some of his ‘sorting’ behaviours but not too often.
There is another pebble based system you might like to look at, http://neutun.com, although they don’t have alarm notifications working yet, and I think it is more prone to false alarms than mine (but I am probably biased!).
I have also had a go at using a Microsoft Kinect sensor to detect movement and check for breathing without needing anything in contact with the person being monitored (http://www.openseizuredetector.org.uk/?page_id=425), but this system is not as easy to install and set up as the pebble watch one (http://www.openseizuredetector.org.uk/?page_id=415)
Graham.
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Comment by Graham Jones — May 1, 2015 @ 4:00 PM
Well, I think they all suffer from false alarms, sometimes. Even the new Embrase with all the science behind it, probably will have the same problem.
But wow! I’d be willing to try the Pebble watch any day.
If it performs as wonderful as it looks. Now for one more question: why don’t they have the publicity that the Smart Watch has and the Embrase also.
Is it available in the States…could that be it? Because it sure looks like a winner.
And it would be fun one day to write an article about “smart” watches. Although I have to have info about the neutun.
And of course, the Embrase has yet to become available. Even though there are specs aplenty!
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Comment by Phylis Feiner Johnson — May 1, 2015 @ 6:56 PM
Hi,
Availability
The two Pebble watch systems I mentioned should be available anywhere – they use a basic Pebble watch, which are certainly widely available in the UK at the moment (see http://getpebble.com). They connect to a mobile phone using a special Pebble application that you install as part of the initial set up.
Then the seizure alarms are software applications that run on them.
The Neutun one is available here: https://apps.getpebble.com/applications/550f0e6ae0b81d859100001c.
And the OpenSeizureDetector one here:
https://apps.getpebble.com/applications/54d28a43e4d94c043f000008. It also needs an App to run on an Android phone to raise alarms (either bleeps or SMS text messages – https://play.google.com/store/apps/details?id=uk.org.openseizuredetector.
Publicity
“why don’t they have the publicity that the Smart Watch has and the Embrase also”.
I can’t speak for Neutun.com – I think they are trying on the publicity front – you will find a few youtube videos about it etc.
The easy answer for OpenSeizureDetector.org.uk is that it is just me (with a few other people testing it), and I am an engineer, so I have been more interested in getting something to work than publicity – it is really a project for us to use at home, but I am happy enough with it now that I think it is worth other people that may find it useful trying it – I’d really appreciate any feedback on what it does and does not detect if anyone tries it out. My installation instructions may also need improving, so any comments on those would be great too! (http://www.openseizuredetector.org.uk/?page_id=415#Installation_Instructions).
Cheers!
Graham.
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Comment by Graham Jones — May 2, 2015 @ 3:06 AM
Ahhh. You’re an engineer! Well, that explains it.
I found the materials a little confounding, difficult for me to understand. But maybe that’s me.
It sounds like a terrific product. And with more easier-to-understand descriptions, is a winner.
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Comment by Phylis Feiner Johnson — May 2, 2015 @ 10:36 AM
Thanks – your comments are really useful- writing accurate, but accessible documentation for an end user is not a skill I pretend to poses! I’ll have a look at simplifying the end-user facing pages to make it easier to understand.
Graham.
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Comment by Graham Jones — May 2, 2015 @ 3:55 PM
It looks like a super product. Now if there’s some user friendly words you can use to describe it, you’ve really got something.
Try reading my column on the Smart Watch. That may give you some ideas. And maybe once I understand it, I can write an article about it like the Smart Watch.
Or position it as an addition to the seizure monitors article…
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Comment by Phylis Feiner Johnson — May 2, 2015 @ 4:11 PM
Hi Phylis,
I am wondering if any of these devices track the length of the seizure? I was told that very long seizures have a higher risk of neurological damage.
Thanks for your time.
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Comment by Alex — April 5, 2016 @ 12:51 AM
You might want to consider a Smart Watch:
The SmartWatch — A New Type of Seizure Monitor
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Comment by Phylis Feiner Johnson — April 5, 2016 @ 10:59 AM
I have a grandson that has seizures it there any where we can get a free monitor please let me know my email is meemawdonna@gmail.com
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Comment by Donna bryant — May 5, 2016 @ 11:19 AM
I’m sorry Donna. As many monitors as there are out there, I don’t know of any free ones. 😦
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Comment by Phylis Feiner Johnson — May 5, 2016 @ 11:26 AM
My adult son who is wounded worrier veteran is disabled from severe TBI, he recently had a tonic -conic seizures after none for 3 1/2 years, is this smart watch the best thing for catching these episodes? or maybe there is something else that is similar / better? appreciate the info and feedback
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Comment by Mark Duquette (@riverboy1) — March 1, 2017 @ 6:41 PM
Mark, the best watch is the new Embrace watch. It monitors seizures, sleep and physical activity.
Here’s the link:
https://www.empatica.com/product-embrace
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Comment by Phylis Feiner Johnson — March 1, 2017 @ 6:52 PM
Thank you Phylis, it looks very good, I appreciate your reference.
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Comment by Mark Duquette (@riverboy1) — March 3, 2017 @ 3:03 PM
I’m glad I could help! 🙂
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Comment by Phylis Feiner Johnson — March 3, 2017 @ 3:42 PM
I am walking the dog then suddenly running and don’t know where I am! This would be great! I would love this!
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Comment by red2robi — April 8, 2017 @ 11:24 AM
Red, you might find this interesting:
Embrace — A Seizure Smartwatch With Style
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Comment by Phylis Feiner Johnson — April 8, 2017 @ 1:47 PM
My son has non epileptic seizures at night. We have the embrace bracelet and it doesn’t pick up these types of seizures. What would you recommend? Thanks in advance
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Comment by carol wilson — May 8, 2017 @ 6:55 PM
You might try the SmartWatch.
The SmartWatch — A New Type of Seizure Monitor!
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Comment by Phylis Feiner Johnson — May 8, 2017 @ 9:25 PM
My arms fly up in air would any of these products work? To record or remember that happened or warm someone.
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Comment by red2robi — April 9, 2018 @ 11:25 AM
I think the Smart Watch MIGHT. Because it is a motion detecting and alerting wristwatch that can detect seizures and alert caregivers within seven to 10 seconds. http://www.smart-monitor.com/
The SmartWatch — A New Type of Seizure Monitor!
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Comment by Phylis Feiner Johnson — April 9, 2018 @ 11:41 AM
Most seizure detectors detect convulsive seizures so need repetitive movement for a while.
Are you describing more of a myclonic ‘jerk’ type of seizure rather than something repetitive?
I do not know of a seizure detector that I am confident would work ‘out of the box’, but there are two options I can think of:
– ‘Brio’ works by heart rate changes rather than motion, so it might work for you – you would have to talk to the manufacturer to see what they think.
– OpenSeizureDetector has a simple fall detection algorithm coded into it – I think I could modify that to detect the motion you are describing….but there may be a lot of false alarms, I’m not sure. Let me know if you want to look at this option and I’ll give it some more thought and experiment a bit (graham@openseizuredetector.org.uk).
(my list of seizure detectors is here – you might want to get in touch with the suppliers of them to see if they think it would work for you – http://openseizuredetector.org.uk/static/Similar_Projects.html).
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Comment by jones139 — April 9, 2018 @ 4:30 PM
Thank you for your help and wisdom!
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Comment by Phylis Feiner Johnson — April 9, 2018 @ 5:11 PM
I read through your monitor systems, and was wondering if there is a monitor for absent seizures? Is there, or did I miss something? Thanks so much…
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Comment by Jill — June 16, 2018 @ 1:30 PM
Seizures with only shallow movements such as absence seizures and many types of partial seizures are not detected by any devices I know of. 😦
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Comment by Phylis Feiner Johnson — June 16, 2018 @ 3:21 PM
I have not heard of one for absence seizures – they will be very difficult to detect – most measure movement. At least one (brio) is based on heart rate so there might be a chance of that detecting them (but I’d be doubtful).
I am working on an ‘odd behaviour’ detector that I am hoping might detect smaller seizures such as absences, but at the moment it is very specifically trained to my son’s behaviour so won’t be much use to anyone else I’m afraid. Graham
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Comment by jones139 — June 16, 2018 @ 5:37 PM
Thanks Graham for your help and your input.
As you know, I couldn’t find anything, no matter how hard I searched.
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Comment by Phylis Feiner Johnson — June 16, 2018 @ 5:39 PM
So I am reading about monitors to warn a person of an oncoming seizure, Why isn’t having an AURA enough that we have to have another device/s to know a seizure is attacking our brain ? A VNS is suppose to stop all seizures, and I’m guessing these monitors do not stop seizures ? So why doesn’t everyone have a VNS if they are to work to stop all seizure activity. My neurologist though tells me a VNS can create MORE seizure activity with some people, and I heard that 45 years ago too, when I was 13 & was told to me a VNS can maybe work for me then in 1973. MAYBE ? THAT WORD “””MAYBE”””” has been used with too many other words said from all neurologists in over the past 60 years. It time we start hearing words like ”WILL STOP SEIZURES or STOP ALL SEIZURE ACTIVITY.” I am tired of living on years 6 DECADES of ”’maybes”.
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Comment by C D — June 16, 2018 @ 4:20 PM
Food for thought:
Vagus Nerve Stimulation…Is it for YOU?
https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%E2%80%A6is-it-for-you/
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Comment by Phylis Feiner Johnson — June 16, 2018 @ 4:47 PM
My son get’s febrile seizures. He is only 22 months, and this could go on until he is 6. I don’t have another great place to look for help, so your website has been great. He is too young for a watch, he would pull it off. And any device that would be attached to his being would be thrown across the room by morning. I need something that could detect seizure activity. So far, all of the ones that I have witnessed have had enough audible activity to wake me up, but I am concerned that it may not always be the case. Is there anything that anyone can recommend?
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Comment by Laura Gagnon — July 31, 2018 @ 10:38 AM
The best I can suggest is SAMi — A night vision monitor used to monitor and record abnormal sleep movements.
It runs on an iOS device such as an iPhone or iPod Touch.
http://www.samialert.com/
I hope this helps.
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Comment by Phylis Feiner Johnson — July 31, 2018 @ 10:53 AM
I have seen those, but we are an Android household and literally have no apple products. I suppose we would have to purchase an ipad with this if that were the case? Thanks so much for your response.
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Comment by Laura Gagnon — July 31, 2018 @ 10:56 AM
I’m sorry Laura, I don’t know any monitors that work with android phones in the same manner.
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Comment by Phylis Feiner Johnson — July 31, 2018 @ 10:59 AM
I did check out their website. They sell a package with an ipod option and another with an ipad option. We will seriously look into this. Thank you so much.
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Comment by Laura Gagnon — July 31, 2018 @ 11:00 AM
iPads are great. I have one and love it.
There are a lot of neat apps for it and I think it will expand your device capabilities.
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Comment by Phylis Feiner Johnson — July 31, 2018 @ 12:20 PM
I also have a message into the company via facebook, they say on their site for ages 4+, not sure if it will work for his currently small size. Thanks again.
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Comment by Laura Gagnon — July 31, 2018 @ 1:06 PM
What are the legal ramifications for his remote monitoring? Has there been research done as to the patient being motored without their knowledge? I am
Epileptic I have a vns unit and after two years of research and I am now convinced that this technology maybe has been masterminded by criminal activity or by a person I would certainly NOT want monitoring me! I’m simply posing a question if this has been researched it is certainly not out of the question in this wireless world especially when an epileptic has an implant!!!!
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Comment by Sherri Acosta — August 24, 2018 @ 6:28 AM
All of these devices have been researched, although I do not know to what extent.
Certainly, the VNS has been researched exhaustively.
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Comment by Phylis Feiner Johnson — August 24, 2018 @ 8:57 AM
the VNS- doctors tried to talk me into having one but I did not go along with their idea. I do not recall talking to anyone who has had one tell me that it solved the problem thoroughly- It appears as though doctors don’t really know if the VNS is successful and are using we epileptics as their Guinea pigs. I decided to not risk making conditions worse than they already are. Yes, the VNS has been ‘researched exhaustively’ – and they are still wasting time on something unsuccessful
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Comment by Karen — December 24, 2018 @ 12:43 PM
You might be interested in this group on Facebook: Friends Who Value VNS Therapy for Epilepsy https://www.facebook.com/groups/970964256285833/
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Comment by Phylis Feiner Johnson — December 24, 2018 @ 12:58 PM
I was wondering if you know of any seizure monitoring device (ie: watch) that would allow the family member to activate it remotely to allow video or auditory connection to the person having the seizure. Also if that same device could allow the user or a remote family member to have it unlock a digital door lock to the home to allow a caregiver/medical team access.
thanks
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Comment by Jennifer Ball — January 25, 2019 @ 1:31 PM
I think the signals have to come from the person having the seizure.
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Comment by Phylis Feiner Johnson — January 25, 2019 @ 1:57 PM
I read these thoughts & realities of the monitor devices, watches & VNS all to think of what could be the problem with ALL of us to start with. IF as I wonder that the BLOOD SUGAR / GLUCOSE levels are lower than normal in a human brain, that will cause all glutamate levels to be higher than normal & where glucose in the brain is lower than normal of those areas that glucose has taken over, the I ask,,, Shouldn’t we all have a monitor to detect our blood glucose DAILY & especially when those times of the day a seizure is normally ready to happen, in those times when we are expecting a seizure to have happen ? I say we all need a special monitor or device that will test at any time of the day our BBB Blood Brain Barrier of GLUCOSE & even GLUTAMATE in our blood and a drink that will elevate & raise glucose in the blood if GLUTAMATE is higher than normal, that is when glucose at the same time is lower than normal in the BBB, Blood Brain Barrier. Once after I had a GRAND MAL seizure & right after I came out of it my mother took my blood reading of my sugar & it was 47, which normal is suppose to be between 80 to 100. So that being the case it seems to me when GRAND MALS happen to me my sugar glucose will be lowered from the seizure event, & HIGHER amounts of GLUTAMATE flooding the brain at that time, from lack of GLUCOSE in my brain & BBB. So if GLUCOSE levels are to be normal for us all, Who then would need monitors, watches, or a VNS device, as more glutamate levels would be normal too if our glucose is normally an average BBB level 24/7 365 days a year ? makes sense to me if LOW BLOOD GLUCOSE triggers seizures of any type, especially GRAND MALS.
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Comment by C D — March 23, 2019 @ 3:10 PM
WOW! What a great concept!
Are you able to come close to the desired Blood Brain Barriers or Glucose levels?
I know you eat incredibly healthy, but what about the rest of us?
Because even with your incredible discipline, you still have seizures.
Do you think you could banish them for good with some special kind of regimen?
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Comment by Phylis Feiner Johnson — March 23, 2019 @ 4:33 PM
any new devices to add to this list? Just wondering whats the latest on the market as of sept 019
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Comment by bneill — September 17, 2019 @ 3:00 PM
I’m sorry to say, not that I know of. 😦
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Comment by Phylis Feiner Johnson — September 17, 2019 @ 3:02 PM
I need the home monitoring because I live alone now. I also need a seizure dog again. Technology I definitely need more of in regards to my seizure disorder.
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Comment by DEBORAH BREELAND — September 16, 2020 @ 9:01 PM
RE: Seizure Alert Dogs. For a treasure trove of questions and answers go to: Service Dog Central http://www.servicedogcentral.org/content/node/149
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Comment by Phylis Feiner Johnson — September 17, 2020 @ 8:55 AM
Reblogged this on Disablities & Mental Health Issues.
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Comment by Kenneth — March 9, 2022 @ 11:39 AM
Thank you very much for all of the information you provide for so many Phyllis! Auras (simple partial seizures) are becoming much more common for me, so I use auras themselves as the best warning to me and to others around me who know of my seizures before a stronger one (complex partial) is to happen.
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Comment by Mike Baumgartner — April 15, 2022 @ 3:59 PM
That was the one thing I found useful about auras!
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Comment by Phylis Feiner Johnson — April 15, 2022 @ 4:52 PM