Advice managing family member's epilepsy

[slaytuesday]

Name changed for this as it's sensitive and outing.

I'm looking for advice from anyone with adult family members who have epilepsy and how you manage their seizures, especially the moments afterwards.

Adult family member has epilepsy, it has been under control for many years without any attacks, but they had to change meds recently. New meds are not as good and are under review until next week when we see the specialist. In the last six months they have had two mini seizures and one big one. They know the attack is coming by a burning smell, so they have time to tell me and then lie down on the floor before it starts.

They recently had an attack which was a surprise as they had been feeling stable for a few weeks and finally thought the new meds dosage was just right. Just before it they had eaten two slices of a spicy frozen pizza before and we're wondering if that set it off. They say it felt like a proper attack and not an allergic reaction. It was the first time they had eaten frozen pizza in years, but they eat fresh ones often, with same ingredients, I also had slices of the same pizza. The attack was very short but quite intense, they didn't lose consciousness than goodness.

The reason for writing though (apart from wondering about the pizza) is the time after the seizure, they seem to go into a sort of fight or flight mode, can't stay still, try non stop to vomit & spit. Their eyes are wild, they try to open every window. Once tried to bite my arm as I was too close to them. I'm not sure if they can actually see during this time though. When they recover they have no recollection of it and look exhausted and bewildered. It's heartbreaking.

I try my hardest to keep the person safe but it's hard, I am the only other person living in the house too. This 'post attack super energetic period' doesn't last long, but for me, it's the hardest part of the attack to manage. Is this common after what used to be called a Grand Mal seizure?

Are there any online courses I can do to learn how to support them and me?

Thanks.

Well it’s nothing like how my Dd behaves after her seizures. After a full tonic clonic she is the opposite. Practically asleep, unable to move much or speak. Can take her 10 mins at least to recover enough to get off the floor.
The pizza thing is weird why have you made that link?
Epilepsy is shit. I hope they get their meds sorted.

Its not my experience of the post seizure phase, which is usually a big sleep, but it is possible this isn't the post seizure and is actually a different type of seizure. If it happens again can you try and film it to show the specialist? Epilepsy is so variable though, there's many different types of seizures and I should imagine the recovery is different as well. It's often harder on those watching than the patient as they don't remember a thing. If you are struggling and not sure you can wait til the appointment, are they under the epilepsy nurses? We can call them any time we have a question so might be worth trying them in between appointments

Thanks for replying

This happens after they've stopped shaking and foaming, so around 10 mins after, they look awake and manage to get off the floor, but they don't speak at all. Made the pizza link as it started as soon as they'd stopped eating it. They said the attack felt so out of the blue, usually when one's coming they have had a few weird moments in the days leading up to it. There's probably no connection but I though it was worth mentioning.
I think I'm going to have to film it if I can manage it, as I've been wondering if it's a different type of seizure. They are under a neurologist rather than an epilepsy nurse ( we're not in UK).
less than a year after only one attack in 20 years on the old meds. And the side effects of it are awful. They've had to up their dose after the most recent episode too, so working is getting harder for them, they do a Science based job that requires a very clear precise mind, which of course is an added stress.

Postictal mania or psychosis is a thing apparently. Look it up.
Not sure it really sounds the same as what you’re seeing.

I am in no way comparing my dog to your relative so I apologise.

However our dog has epilepsy and is very manic after, he's blind, confused, runs in circles, crashes about, all very distressing. Once his sight and hearing comes back he starts to calm with pacing, eating, drinking, finally starts to settle around an hour after. This is all normal for him post tonic clonic seizure.

Again I apologise for it being my dog, but there's probably similarities in how the brain recovers.

Sending best wishes.