u/Embarrassed-Debt3421

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I’m (21w) trying to understand what happened with my boyfriend’s seizure and whether staying awake after taking his morning medication could have made a difference.

He (22m)has sleep-related epilepsy, so his seizures have always happened during sleep shortly before he wakes up in the morning (Around 6-7am) He takes 500mg Levetiracetam twice a day, at 7am and 7pm.

He started taking keppra mid March of 2026 and was seizure free for about 6 Months.

And about 5 weeks ago he had a cluster of 3 tonic-clonic seizures in one day. All of the seizures where really bad.. with stiffening, jerking and tongue biting. After the third one he got his rescue medication. He doesn’t remember any of the seizures.

After that he was seizure-free again for around 5 weeks.

Yesterday he woke up around 7am, taking his morning dose. I remember because i always wake up because of the alarm. Anyways, we both where really tired and since we didn't need to work, we decided to go back to sleep for another few hours.

Then at exactly 8:57 I woke up because I thought he was talking to me. I got up, looked at him, and realized that nothing sensible was coming out of his mouth. He talked as if he'd invented a new language... that lasted for about 5-10 seconds, and then he quieted down, slowly touched his chest, and I knew immediately what was going to happen next. I got up, got dressed, and when I came back, he let out a loud scream and had a grand mal seizure. The seizure ended at exactly 9 am.

Afterwards he was extremely confused. For example, he had one sock on his foot and was holding the other one in his hand, but when I asked him what he was looking for, he said “the other sock” even though he was literally holding it. He was also extremely exhausted afterwards and slept for a long time.

So now I’m wondering about the timing.

If he had stayed awake after taking his 7am medication instead of going back to sleep, could that possibly have prevented the seizure, because he only has the seizures while he's asleep or would it have made no difference and he would have had the seizure while awake?

I'm just trying to understand what's happening and how I can support him better, as I know how stressful the whole thing is.

I am grateful for any help!!

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Hi everyone,

I'm here because I could really use some advice and would especially love to hear from people who have epilepsy themselves or have a partner with epilepsy.

My boyfriend (m22) has had epilepsy for a few years. We've actually been seeing each other for about a year, but we've only officially been in a relationship for around two weeks now. So even though I've known about his epilepsy for quite a while, I had never actually witnessed one of his seizures before this happened.

From what I know, before he started medication, he was having roughly one seizure every 3–4 weeks. They usually happened early in the morning, around 6–7 am, while he was still asleep in bed.

From what he has told me, they were generalized tonic-clonic seizures with stiffening and strong rhythmic jerking. Afterwards he would be extremely tired, confused and usually have a headache, and he never remembers the actual seizure.

Since around mid-March, he has been taking levetiracetam, 500 mg in the morning and 500 mg in the evening. It worked extremely well for him and he was seizure-free for around 5–6 months.

Then, completely unexpectedly, he had another seizure about 3 weeks ago.

I was with him that morning and it was the first time I had ever witnessed one of his seizures. I woke up because of some strange noises/groaning coming from him. At first there were only some small movements, but it quickly became much more intense. The seizure itself lasted around 1–2 minutes.

Afterwards he was extremely exhausted and confused. But the really scary part was that it didn't stop with one seizure. He had three seizures in total that day. The second one happened around 6 hours after the first. After the third seizure, the rescue medication (buccal midazolam) was given, and his father took him to the doctor afterwards.

Honestly, I don't think I realized immediately how much witnessing this would affect me.

The first weekend I stayed with him after the three seizures, I basically couldn't sleep at all. I remember waking up around 2:30 am and being so overwhelmed and anxious that I couldn't lay in bed anymore. I actually went outside and just sat/huddled there for a while because I couldn't calm myself down enough to sleep.

I was lying there constantly thinking that something could happen again. Every little movement or sound made me check on him. I knew rationally that he was sleeping, but my brain just wouldn't stop thinking, "What if this is a seizure? What if something happens and I don't notice?"

And that's basically where I've been ever since.

When I sleep next to him, I notice basically every little movement or sound he makes. Sometimes he groans quite loudly in his sleep, and sometimes his breathing suddenly becomes louder or faster, without him actually having a seizure.

I honestly don't remember noticing these things before I witnessed his seizure, so I don't know how much of this is normal sleep behavior and how much might potentially be related to his epilepsy.

The biggest problem is that I can't really get into deep sleep anymore. I wake up at almost every movement, every strange sound, every change in his breathing. Sometimes I feel like I'm barely sleeping at all because part of my brain is constantly monitoring him.

It's exhausting.

I know this isn't healthy for me in the long run, and I really don't want to become someone who constantly watches him while he sleeps. I also don't want him to feel like I'm scared of his epilepsy or that I see him as fragile.

But at the same time, I'm genuinely scared that it could happen again while I'm with him. but it would be even worse, if he's having a seizure when i'm not with him.

I would rather wake up and be scared than know that he had another seizure while he was alone and had nobody there. I don't want him to ever feel like he has to deal with this by himself.

So there is this weird conflict in me: I want to stay close to him because I love him and want to be there if something happens, but being constantly on alert is also really taking me out.

I'm trying to find some kind of balance between being there for him and not turning myself into a full-time night watchman and i wanna sleep good again. 😅

I'm grateful for every advice and help🙏🏼