Trying to find some sort of alarm to make aware having a epileptic seizure, have JME, my last aura did not show on heart rate?

[Adlon57]

I have had JME for nearly 50 years, I have worn out various SOS cards and bracelets over the years, still have SOS card at present, but last episode I was actually at my GP, but my aura did not show on my heart rate he called an ambulance. I am in the process of changing my medication, I have found 'auras' over the years can be "changed", different symptoms for seizures usually affected by particular medication, which can be dangerous for myself and people concerned. Is there some sort of electrical watch or bracelet which I could wear all the time which could warn myself or people nearby that I am going to have a JME seizure? I have had over 400 seizures over the years but I do NOT want to put everybody into an absolute panic, some sort of 'quiet alarm' essentially for myself, my auras 'usually' start about 20-30 seconds before the main event, occasionally I'm able to reach a bed or soft place and 'sleep' it out, and mostly my seizures happen within 2 hours of waking up in the morning?

[EpilepsyAction1 Partner Epilepsy Action]

There are alarms to tell someone you are having a seizure. There is not yet an alarm to tell someone you are going to have a seizure: epilepsy.org.uk/info/daily-...

Different alarms have different levels of effectiveness depending on your seizure types.

It may be useful to contact the manufacturers of the smart watches we have information about. They should be able to give you more specific information.

The SOS card sounds like a good way of trying to inform people of what you need. You would also be welcome to one of Epilepsy Action’s awareness cards: shop.epilepsy.org.uk/cat/id...

I hope this helps.

Regards

Cherry

Epilepsy Action Helpline Team

[Adlon57 in reply to EpilepsyAction1]

Having epilepsy for so many years it was my last episode, actually in my GP's waiting room, I was telling him I was going to have a seizure, I am on new medication so was unsure of my new 'aura' he had measured my heart rate, the aura seemingly was a 'long one' strange, but no change in my heart rate, I did have a seizure, in fact I had two, ended up in hospital, but no change in heart rate?? I have had SOS bracelets/cards for years, but with change of doctors and medication over the years worn out with tippex marks sometimes forget to get new ones! I think I will start making ones off my computer, wallet size? It is surprising that even when I had an aura there was no 'electrical' signal being emitted from at least one part of my body? Thanks anyway Cherry.

[AmyBadd]

Hi, I have an “Epilepsy watch” called an Embrace by Empatica. There are three things it measures, the main one being the vibrations in your wrist, so it detects quickly if you are having a seizure, but can’t predict it before it starts. It also has false alarms occasionally, such as when I am pushing my sons pushchair over bumpy pavements or in a car or bus on a bumpy road.

It works by pairing with your phone via Bluetooth. It sends a message to your phone which then sends a message to and calls one or more people you have it set up to contact (for me it is my husband). If I have a false alarm, I just text him.

There is a cost for the watch (£100ish?) plus a subscription for the app (about £10 a month) but if you have severe circumstances I think you can also contact them and see if you can get a discount.

Amy

[AmyBadd in reply to AmyBadd]

Oh and I also wear a medical alert bracelet next to my watch with mine and my husbands details on.

[Adlon57]

Thanks Amy!

[Hidden]

Sorry for intruding on your post Adlon57 but

Hi Amybadd

Is there a chance we could see a picture of your medical alert bracelet as the ones advertised by health unlocked look more like charity bracelets.

[Adlon57 in reply to Hidden]

The ones I had were metal SOS bracelets with paper details enclosed, but due to years of changes in medication, doctors, address, etc use of tippex just plain wore out, I use a small credit card size card which I can print out and put in my wallet, suitably red/emergency epilepsy looking with all my medical details on it, but only an after detail measure not a warning for future events! from Adlon57

[Adlon57]

The ones I had were metal SOS bracelets with paper details enclosed, but due to years of changes in medication, doctors, address, etc use of tippex just plain wore out, I use a small credit card size card which I can print out and put in my wallet, suitably red/emergency epilepsy looking with all my medical details on it, but only an after detail measure not a warning for future events! from Adlon57

[Hidden in reply to Adlon57]

I found the card ones ok for information but only if someone looks in my wallet. The last time I had a seizure in public people actually thought I was drunk and just left me there.