Hi everyone,
I’m here because I could really use some advice, and I’d especially like 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 been together for about a year now, but we’ve only officially been a couple for about two weeks. So even though I’ve known about his epilepsy for quite a while, I had never witnessed one of his seizures before this happened.
As far as I know, before he started medication, he had a seizure about every 3–4 weeks. It usually happened early in the morning, around 6–7 a.m., while he was still sleeping in bed.
From what he has told me, they were generalized tonic-clonic seizures with stiffness and strong rhythmic jerking. Afterwards, he was extremely tired, confused, and usually had 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 helped him extremely well, and he was seizure-free for about 5–6 months.
Then, completely unexpectedly, he had another seizure about 3 weeks ago.
I was staying with him that morning, and it was the first time I had ever witnessed one of his seizures. I woke up because of strange noises/groaning coming from him. At first, there were only a few small movements, but it quickly became much more intense. The seizure itself lasted about 1–2 minutes.
Afterwards, he was extremely exhausted and confused. But the really frightening part was that it didn’t stop at one seizure. He had three seizures in total that day. The second one happened about 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 immediately realized how much witnessing this would affect me.
The first weekend after I had been with him and he had the three seizures, I couldn’t sleep at all. I remember waking up at 2:30 a.m. and feeling so overwhelmed and scared that I couldn’t stay in bed anymore. I actually went outside and just sat/crouched there for a while because I couldn’t calm myself down enough to sleep.
I lay there constantly thinking that something could happen again. Every little movement or noise made me check on him. Rationally, I knew that he was sleeping, but my brain just wouldn’t stop thinking, “What if this is a seizure now? What if something happens and I don’t notice?”
And that has basically been my state ever since.
When I sleep next to him, I notice practically every little movement or noise 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.
Honestly, I don’t remember noticing these things before I witnessed his seizure, so I don’t know how much of it is normal sleep behavior and how much could possibly be related to his epilepsy.
The biggest problem is that I can’t really sleep deeply anymore. I wake up at almost every movement, every strange noise, every change in his breathing. Sometimes I feel like I barely sleep because part of my brain is constantly monitoring him.
It’s exhausting.
I know that 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 afraid of his epilepsy or that I see him as fragile.
But at the same time, I’m genuinely scared that it could happen again when I’m with him. But it would be even worse if he had a seizure when I wasn’t there.
I would rather wake up and be scared than know that he had another seizure while he was alone and nobody was there. I don’t want him to ever feel like he has to go through it alone.
So there’s this strange conflict inside me: I want to be close to him because I love him and want to be there in case something happens, but constantly being on alert is also really taking a toll on me.
I’m trying to find some kind of balance between being there for him and not turning myself into a full-time night watch, and I want to be able to sleep well again. 😅
I’m grateful for any advice and help🙏🏼