Do you care for someone who has seizures?

[Riley Blue]

My O/H's seizures have increasing in frequency, duration and intensity since December; sometimes daily and though each one may last no more than 20 seconds, she may have up to 40 over three hours with short gaps between.

I cope as best I can and have cushions at the ready around the house though I try to get her to a safe place (on the sofa or on the bed) given enough warning, which isn't often.

Thankfully she hasn't hurt herself badly (though she did once punch herself on her forehead causing a bruise that lasted almost a week). This is all rather new to me, is there anything further I can do to protect her?

[OIC]

Is this a new condition?

Is the cause known?

Sounds like she may need a medication review with an epilepsy specialist team to gain better control of her fitting frequency.

That's the place to ask about home management.

GP may be helpful.

[GaRog]

Our daughter was having up to 15 seizures a day, lasting up to 4-5 minutes a time. During a seizure all you can do really is keep the head safe. Our daughter used to convulse quite a lot so her legs would be kicking and arms flailing, we were told not to try to hold her down or stop her. Just put a cushion, jacket or whatever under her head to stop it banging on the floor.
There isn't a great deal you can do about pre-empting a seizure coming on. We would sometimes see her go vacant prior to a seizure so would stand next to her to catch her.
Our golden retriever would sense them coming on and would bark at her before one started. She wondered what he was barking at initially, the next thing she was on the floor coming round. The dog would lay around her head and look after her.
Do you know the cause of the seizures?

[Riley Blue]

Thanks but I'm not after advice about diagnosis, that's all in hand and has been for a long while.

This is a change in seizure frequency etc. that has caught us both by surprise as she was seizure free for over 10 years.

I'm hoping for practical tips (if any) to help cope with them.

[sherman]

I have epilepsy.
Back in 2020 I had to hand back my driving licence due to having a few fits over a short period of time.
I got a phone apppointment my GP and then got sent for an MRI within a week or so.
I had a follow up with my consultant and it was decided to change my medication due to the fact that for 30+ years I had been taking Carbamazipine and my body was building up a resistance to it so it was no longer effective.
I was changed to Eppilum and touch wood I have been fine since.
Being male and not looking to have children Eppilum works fine for me.
The OPs partner may not want to use Eppilum due tk its know side effects.

I got my licence back after 18 months. I was able to apply after a year fit free but the DVLA during covid were useless and I had to get my MP involved to get my licence back.

Edited by sherman on Tuesday 14th April 19:05

[moorx]

I presume you will have seen the info on the Epilepsy Action website:

https://www.epilepsy.org.uk/info/first-aid

https://www.epilepsy.org.uk/info/seizures/tonic-cl...

And the Epilepsy Association website:

https://epilepsysociety.org.uk/about-epilepsy/firs...

And the NHS website:

https://www.nhs.uk/symptoms/what-to-do-if-someone-...

I don't care for someone with epilepsy, but do have it myself, and these are the sources of advice I would direct someone to.

I have bashed my head badly during a seizure when I unfortunately fell the other side of a door and my OH couldn't get to me to help. I made quite a gouge in the plaster on the wall too, so must have kicked it or something, I don't know. Just shows the forces involved. I ended up with two black eyes from that one! I have also bitten my tongue really badly on various occasions.

All the best to you and your OH. I'm sure it is really scary for people to witness a seizure, especially if it's a loved one.

[Badda]

I know you don’t want to discuss the diagnosis, 40 seizures in 3 hours with no real recovery in between is status and needs stopping.

Are these focal seizures or full bilateral, tonic-clonic types? Would help for advice.

[Riley Blue]

Thank you the links, a couple of which I had already read but they're all helpful.

I don't really want to widen the discussion but I am aware of the seriousness of that number of seizures in so short a time - suffice to say we're now instantly recognised by many of the staff in the local hospital's ED.

It's a tough time for both of us and I simply want to give her the best quality of life that I can.

[Badda]

Sorry to hear this.
To answer your initial question, do you have rescue buccal meds you are able to administer? Other than this, I’m struggling to think of any way of managing a patient in status at home.

[Riley Blue]

Badda said:

Sorry to hear this.
To answer your initial question, do you have rescue buccal meds you are able to administer? Other than this, I m struggling to think of any way of managing a patient in status at home.

We don't have rescue meds. so I will investigate. Thankfully the prolonged seizures only happened twice; more recent episodes have been much shorter i.e. minutes rather than hours. Again, my thanks.

[sherman]

Riley Blue said:

Badda said:

Sorry to hear this.
To answer your initial question, do you have rescue buccal meds you are able to administer? Other than this, I m struggling to think of any way of managing a patient in status at home.

We don't have rescue meds. so I will investigate. Thankfully the prolonged seizures only happened twice; more recent episodes have been much shorter i.e. minutes rather than hours. Again, my thanks.

Doctor should be able to prescribe diazepam or similar.
I used to keep some on my rrpeat prescription when I was younger.
It will knock your other half out cold but at least they wont be fitting.