Late onset epilepsy and night fits and alarm systems.

[Imdunfer]

OH, 72, has now had two major seizures 18 months apart, both at night. Feeling a little sorry for myself as I had booked a holiday away by myself this week to recover from 4 relentless years of him being ill with one thing after another and finally being well. Then on Saturday night, bang, another tonic clonic fit out of nowhere.

It's obvious that sleep is a trigger, he doesn't get any big fits during the day, just absences. I believe that night only fits are a known thing.

So now I'm trapped. I can't leave him alone at night in case he fits. I would never forgive myself if he hurt himself or died and I wasn't able to call emergency services.

Does anyone have any experience of the long range alarm systems which Bluetooth to a phone that calls your phone in the case of a tonic clonic fit? They seem to cost over £1000 and I'd like to know they work before buying one.

I’ve no experience of them I’m afraid. What have the doctors said?? Has he had any tests?
Do you have any one who could come and stay with him for a few days? I would do it for my mum and dad.

My Dd is epileptic so know how you feel about leaving them alone.

He's an epileptic with frontal lobe epilepsy and a lump in the right prefrontal cortex which isn't growing which is in too dangerous a place to do a biopsy on.

He is controlled by antispasmodics well most of the time but we can expect one of these night fits every year to 18 months.

We have no family, either of us. Well he has a sister but far away who can't leave her own husband for not dissimilar reasons.

I'm sorry to hear that, I hope she is one of the lucky ones who grows out of it. I had three paramedics on Saturday night all tell me I could go on my holiday!

I couldn't. I just couldn't. 48 years together and they think I could swan away on a holiday on my own a day later leaving him a) to deal with the physical aftermath alone b) to struggle through updating an NHS neurologist and finding out what to do now alone c) to potentially have another fit alone and hit his head, choke, have a stroke from the blood pressure, or die of something else. It's unthinkable.

It does sound hard if he isn’t 100% reliably controlled by medication. But if they said expect such a seizure every year to 18 months and he’s just had one, does that mean he’s safe for a while? I understand if it’s not a risk you want to take. I am well controlled on medication and my husband does go away, leaving me with the children, without concern. But if there’s any risk of seizure then we would not want me to stay alone either.

There shouldn't be another for a while but sadly that doesn't mean there's any guarantee that there won't.

I'm sorry you live with this disease as well.

I have epilepsy which my meds do not fully control and live alone.

My daughter has a monitor that she wears on her wrist it looks like a watch, by a company called Embrace. If she were to have seizure it notifies us and the carers in her supported living accommodation.

I'm sorry about that, you're at quite a risk if you get tonic clonic fits alone.

Excellent, thank you i'll look that up. It sounds exactly what I need.