[Research] Anyone have a smartwatch with a seizure detection app? Tell me whether it works!

dawn9100

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Hi All,

I'm trying desperately to regain some independence. My son moved home last year when I got divorced, and I'm tired of depending on him so deeply. I want to let the poor kid have his own life!

He's not comfortable with the idea of moving back into his own place, until we have a solid working plan.

So one of the things I've been looking at is a good smartwatch with a good seizure detection program.

All of the apps I see online, SeizAlarm, the Embrace Watch, the Smart Watch from Smart Monitor.... they all seem to have fairly mixed reviews, and none of the reviews seem to be recent. The most recent one I found was from 10/2016.

It seems like one of the big problems with this technology is movement. I guess, people who tend to move less during their seizures may not trigger notifications to their caretakers each time a seizure comes. My son tells me this is not a problem for me, there has historically always been A LOT of movement with my seizures.

So, knowing that I really tend to flail around - does anyone have any suggestions for a watch/app/phone combination that they really feel will do the trick?


Thanks,
Dawn
 

Loopy Lou

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Hmm i don't know if this is the sort of thing you're looking for, but for me it works on the same kind of premise.

I got a fitbit in january with the hopes of getting a bit fitter, but then i realised it tracks sleep and heart rate. If i'm pretty sure i had a seizure the night before, i just cross reference the heart rate overnight with periods of extreme unrest on the sleep monitor. If they match up for short periods of time, it was most likely a seizure.

Of course there's nothing i can really do about it since i live on my own, but it's good to know for recording purposes. I've been toying with the idea of giving my log in details to my mum so she can check up on me if she hasn't heard from me in a while, but have decided against it so far.
 

dawn9100

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Well I decided to go ahead and buy the Apple 3 watch, and I’ve downloaded both EpiWatch and SeizAlarm. I will try to post updates regularly. So far I’m using SeizAlarm and we are still playing with the sensitivity, but so far, we’re just getting a lot of false alarms.

I just downloaded EpiWatch today and plan to start playing with it over the next few days. I’ll keep you all posted!


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Nakamova

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Thanks Dawn, definitely let us know how it goes!
 

dawn9100

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Update number 1:

SeizeAlarm is the first app I tested. I tried VERY hard to get it to work, but EVERYTHING set it off, even washing my face and hair. I played with the sensitivity settings a lot, but I can tell you; the app claims to take both movements and heart rate into account, but my emergency contact would get a notification when my heart rate was perfectly normal (below 100) when my settings indicated the app should alert when my hears rate was over 130.

In addition, for some reason that app is a SERIOUS battery drain! When I was running it, I had to charge my app about every 4 hours. Since I’ve removed the app, my watch only needs to charge about every 34 hours.

I will be checking out some others... but in the meantime, if you own an Apple watch, I highly recommend you sign up to participate the John’s Hopkins research study (EpiWatch). If you don’t have regular auras it won’t help you much in the immediate future, but it does collect details about your seizures and send it anonymously to Johns Hopkins in order to further their research. Even if you don’t have an aura EVERY time, you can enter the details afterwards and that will help them get closer to both detection and prediction.

I’ll keep you posted as I try others!
Dawn

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dawn9100

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Update number 1:

SeizeAlarm is the first app I tested. I tried VERY hard to get it to work, but EVERYTHING set it off, even washing my face and hair. I played with the sensitivity settings a lot, but I can tell you; the app claims to take both movements and heart rate into account, but my emergency contact would get a notification when my heart rate was perfectly normal (below 100) when my settings indicated the app should alert when my hears rate was over 130.

In addition, for some reason that app is a SERIOUS battery drain! When I was running it, I had to charge my app about every 4 hours. Since I’ve removed the app, my watch only needs to charge about every 34 hours.

I will be checking out some others... but in the meantime, if you own an Apple watch, I highly recommend you sign up to participate the John’s Hopkins research study (EpiWatch). If you don’t have regular auras it won’t help you much in the immediate future, but it does collect details about your seizures and send it anonymously to Johns Hopkins in order to further their research. Even if you don’t have an aura EVERY time, you can enter the details afterwards and that will help them get closer to both detection and prediction.

I’ll keep you posted as I try others!
Dawn

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Well I just had a seizure on 4/28, and none of these apps detected it. A few years ago I spent a week in an epileptic unit at the Mayo Clinic, so I even called them to find out exactly how much my heart-rate increased during the recorded seizure... but no luck.


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Nakamova

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That's a shame, I guess they're still getting the bugs out. :(
 
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