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Epilepsy - Seizure tracking with smart watch

  • 17-09-2023 9:41am
    #1
    MarkR
    Moderators, Regional Midwest Moderators Posts: 11,183 Mod ✭✭✭✭


    My son who is 17 has recently had some seizures. Pretty short, but they're full seizures. He has ASD, communication, and intellectual disabilities, so he can't always tell us what's going on.

    I've seen online that some of the more recent smartwatches when a particular app is installed, can be used to identify seizure events. Has anyone used something like this, and what did they think of it?



Comments

  • #2
    banie01
    Registered Users, Registered Users 2 Posts: 17,294 ✭✭✭✭banie01


    Hi Mark, I am sorry your young lad has had seizures. If it is of any comfort to you/him I had epilepsy, tonic/clonic & absence type seizures develop when I was in my early teens. I eventually got on top of it via medication and I've been seizure free now since before my 21st birthday, nearly 23yrs now.

    As a teen, I hated the impact it had on me. Honestly found it very rough and even almost freakish at times. Always being worried about having a seizure and the aftermath of one in particular, did make me restrict a lot of what I did. If I could give 17yo me advice on what to do? It would be to engage with the Doc's, take the meds and try to keep note of anything that I felt was a trigger. If nothing else, it gives back a sense of agency and control. Rather than epilepsy calling the shots, try to find ways to manage it.

    On your question regarding Smartwatch seizure detection. A bloody brilliant idea IMO and one that really could be a life saving game changer. I had a look around XDA and a few medical sites and there are some options available.

    Samsung Galaxy watch can use the Inspyre app. Apple has SeizeAlarm.

    https://seizalarm.com/


    1 app I've seen on Google Play store is OpenSeizureDetector. I know nothing about it's accuracy but it might be a good start. This does work with Garmin and a lot of other smartwatches.

    https://play.google.com/store/apps/details?id=uk.org.openseizuredetector
    https://www.openseizuredetector.org.uk/


    Epilepsy Foundation have an article on options too (that you have no doubt read already)

    https://www.epilepsy.com/make-difference/research-and-new-therapies/digital-tools/new-therapies-pipeline/update-smartwatch

    Really do hope some of the above is of some use. I also hope that he never has a seizure again. Really do hope he/ye get on top of it.



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