Seizure alarms

[EpilepsyInst]

Hello ERUK Community! Have any of you ever used a seizure alarm? If so, what were/are your experiences with it? Did you fund it yourself or did you get it from a charity? We welcome all your comments, positive and negative!

[Tazzy2]

Never knew was such a thing

[kittycat671]

I did no about them, but finding it impossible for a charity to have one...

[EpilepsyInst Partner Epilepsy Research UK]

Hello Tazzy2! Seizure alarms exist, but they're usually for tonic clonic seizures or seizures during which a person falls down. They're by no means perfect, but they can be of great help and reassurance to some. There are a number of companies that make them, but there are also charities that offer them, e.g. the Muir Maxwell Trust (there is a lot of demand for these though. There are other aids too, such as safety pillows, for if someone has seizures at night. You can find more information here: epilepsyresearch.org.uk/sei.... This has been adapted from material on the Epilepsy Society website. All the best, ERUK_RI

[EpilepsyInst Partner Epilepsy Research UK]

Kittycat671, have you been in touch with the Muir Maxwell Trust at all? All the best ERUK_RI

[Jonnyk]

We're on the waiting list for one, for my daughter. She had another seizure this morning (always early in the morning) I would feel a little more at ease with her having one.

[EpilepsyInst Partner Epilepsy Research UK]

Hello JonnyK, is this the Muir Maxwell Trust waiting list? How long have you been waiting (if you don't mind my asking?). All the best, ERUK_RI

[Jonnyk]

I can't remember exactly but over 8 months, they have a facebook page and we're asking if anyone in Scotland needed one so I'm not sure if it's a regional waiting list?

[EpilepsyInst Partner Epilepsy Research UK]

Thank you JonnyK, that's helpful. I'm not quite sure how it works in terms of regions etc, but I intend to find out. All the best, ERUK_RI

[Hidden]

I haven't used a seizure alarm, but I've heard wonderful things about seizure dogs being able to predict seizures up to 2 hours in advance.

[lesleyw100]

We used to have a seizure alarm for my daughter as she has severe drop attacks. This was organised by our local council and could be either a wristband push button, neck pendant push button (which I didn't use as I thought might be dangerous in a fall) or a sensor worn round the waist on a belt. I think they are mostly used for the elderly, but it was useful for my daughter to give her a bit of independence in the house so she didn't have someone following her around all the time.

I think you can also get bed alarms to detect seizure movement.

My daughter paid a small amount for the alarm via the council. She gets direct payments to employ a support assistant and they put us on to them.

We did buy our own sensor alarm which cost about £160, while she was at an epilepsy centre. Strangely staff there did not know much about them.

It's always been a struggle to get epilepsy help and information - always had to Google things myself first.

Not good enough really in this day and age.

[AmyBadd]

I have one of these on order. Have to wait till October but it looks a lot more practical for someone like me who is independant and has few seizures. Also, the scientific studies seem to suggest it is better at predicting seizures than other things out there at the moment. Once I have it I know that it will give my husband more peace of mind for the two hours a day I am usually in the house alone. At the moment all I can do is wear a medical ID bracelet in case something happens when I am out and about.

indiegogo.com/projects/embr...

[Hidden]

Regret, they would not be available in South Africa. If so, one wouldn't be able to afford the price as they would have to be imported, like everything else!

[Dino_rgjta]

I've never used or use an electronic alarm, or otherwise, preventing me from an epileptic seizure. My alarms are still possible "aura" that may arise.