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Epilepsy Action
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Embrace watch

Hi all how meny people in the UK have got the new embrace watch for epilepsy? Mine is due to come today and I'm really looking forward to getting it but I do have a question for UK users I don't have any caregivers and my friends don't have a clue about what to do plus they are in the 60+ group so I don't want to drag them down to me and risk hurting them in any way I believe my petti mals are back if my friends can help with those I would appreciate it more than if they tried to deal with my grand mals the watch is supposed to monitor those and if I can figure out how to set up with my doctor I don't mind a nurse or social worker being my embrace contact but is anyone else in this situation where they need to be monitored by the embrace watch but have no caregivers to be contacted in an emergency and what did you have to do to sort the problem out

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I haven't got one but would be really interested in your experiences.

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So far it's really good mine has a fabric band so I take it off when doing things like the dishes and having a shower but because of the need for the mobile phone it's helping me to remember to always have my smart phone on me as I'm wearing it on my left wrist I have found the left hand pocket of your jacket is best as I did have it in my right hand pocket and I got told no Bluetooth found so I'm remembering I'm also thinking about getting one of those portable charger batteries to keep in my bag and maybe order a spare charger dock and USB cable from embrace for if I'm out and can't get home to do the charging. I do feel like my confidence is growing even though I have yet to add someone as the caregiver I know that my fits are monitored and at least I can show the doctor and be 100% sure

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Fantastic. After years of only sleep seizures I have had at least 1 definite awake seizure. I refuse to give up and stay inside with fear so something like this might make me feel safer and at least the seizures would be monitored...thank you for taking time posting.

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You can also get the mate app and when it is fully settled mine is still getting used to me so I'm getting a few hiccups you can monitor your daily routine like sleep and rest also if you do walking eg today I had about 7-8 hours sleep but I tossed and turned I got up around 3am and walked my dog for about 1hr and 2 minutes ( as I took my watch off to have a shower and do some dishes so this wasn't counted) now at 8:25am I am informing you about what embrace recorded me doing since I went to bed last night. Hope that helps you our better as you see I'm still working it out

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that is a good shout as my seizures have always been triggered by poor sleep and stress

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Mine are flashing lights but I've also been told that poor sleep and stress doesn't help so I have set up my embrace to monitor for fits mainly but also sleep and stress so that way I'm covered and I'm going to suggest to my doctor if he sees it useful about printing up the logs that I can print up every so often so he can get a better read on how my epilepsy is doing and is sleep a problem ( haven't found a stress log yet) so he can advise me better its just a thought

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Hi, I have one, but it’s the original model, so I don’t think will be exactly the same as yours.

I find it really useful, but mostly because my husband is my caregiver and he will have a message sent to him if it is triggered. Mine does not detect my smaller seizures, only tonic clonic, not sure if yours is able to detect the other seizures you mentioned. I also have a fair few false alarms but I’ve got to understand the things that are likely to trigger it and avoid it happening most of the time - pushing my son’s buggy over bumpy ground, stirring something rapidly when I’m cooking, for example. It’s really easy to mark things like this as “false alarms” on your app so they don’t stay recorded.

I have never had seizures when I’m asleep, so I don’t wear my watch at night and charge it while I’m asleep, but it actually charges up really quickly (an hour or 2 maybe?) and stays charged all day (16 hrs or so).

Hope you continue to find it helpful for you.

All the best, Amy

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Mine only does the grand mal fit's aswell just like your version I think the only real difference is that mine takes less time to charge and last upto 48hrs other than that I don't really think there's much difference in the two versions at the moment because I don't have anyone I can put in as a caregiver I've set up a default to my home phone until I can see if my doctor can give any help with the caregiver side but I'm not too worried about that side of the watch it's just having the reassuring fact that I'm no longer guessing did I or didn't I have a fit as the watch will record them and I can let my doctor know and show him on the app all the information even if it's because of poor sleep which can be a factor so it's helping with the peace of mind and not needing to worry about what ifs and being able to live how I want so even without a caregiver at the moment I feel so much better in knowing that I'm better looked after because doubt is gone

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