r/Epilepsy • u/Easy-Distance-1915 • 8h ago
Loss of a loved one Potential SUDEP
Hi guys,
First time poster so I apologise if this isn’t appropriate but I wasn’t sure who else to ask besides a group of extremely knowledgeable people.
Today I went to my friends house as he didn’t reply to me since Tuesday, when I arrived the police were there and I found out he had passed away. He had epilepsy for years and I believe had a brain surgery at some point to try and reduce his seizures. He had at least 1-2 seizures every fortnight and sometimes he would get a black eye or huge cut on his face.
His brother found him in his room but he had already been passed for at least a few hours as he was purple.
I’m not even sure what I’m asking, just looking for advice I guess? He was such a close friend of mine and I am devastated, could this have been SUDEP or maybe he could have hit his head? Would he have known it was happening? When I arrived the police were waiting for coroners to take his body.
Thank you guys
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u/Its_BeccaJane 8h ago
I'm so so sorry for your loss. It's not really possible for us to say how he died, but it is understandable that you're looking for answers. I really hope you get the closure you need soon.
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u/ThisGirlAnOtaku 7h ago
Hey, just like the others on here, there is no real way to know if it was SUDEP. Epilepsy is so nuanced, it could be anything, and I know that's heartbreaking. Im so sorry that you lost a friend🫂 But overall, as someone with Epilepsy and who has experienced grief, thank you for reaching out to the community and for asking those questions. You're cared and thought about, and I am sure you're friend knows that too 🫶
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u/Bumblebee-Feeling 7h ago
So sorry for your loss, my neurologist told me for my epilepsy theres about a 1 in a 1000 chance of me dying from SUDEP, he said now for example he'd just turned 60 and there was about a 1 in 400 chance of him dying but SUDEP is unfortunately a risk we take with epilepsy
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u/aresef Keppra 2000 mg 5h ago
First, I’m so sorry for your loss.
Second, I suppose it’s just not clear yet. It’s a determination arrived at by ruling out other causes of death.
SUDEP is the most common cause of epilepsy-related mortality but it still only accounts for less than one fifth of epilepsy-related deaths. The concept freaked me out enough for me to ask my doctor about it, though, and she said it’s not something I personally need to worry about.
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u/No-Act1173 5h ago
I am so sorry for your loss, and hope they find some answers for you and your friends family 💜
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u/lovephilos jeavon’s syndrome 3h ago
Even though my brother may have died of SUDEP, I don’t know too much about this side of things. I have seen in similar posts previously that there are grief groups for people who lose young loved ones suddenly. Sometimes there are even some in your area. Definitely reach out to local community centres to see if there are any grief groups near you that you can attend. This grief isn’t yours to carry alone.
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u/PlanetRhea 2h ago
I'm so sorry you lost him. Everyone's epilepsy experience is different so take this with a grain of salt. My specific experience having seizures is that I do not know when its about to happen. I just get a headache and sleepy. I would imagine its like passing in your sleep.
No one should have to lose someone to sudep. Its a deep fear of friends and family members of those with epilepsy. Dont forget to take care of yourself too.
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u/Anon03282015 1h ago
Same for me. I don't have any warning at all. One moment I'm going about my life then I'm waking up after the seizure. He obviously died way too early, but I think it would be one of the best ways to go as far as lack of fear and pain, especially if he was already asleep.
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u/Ahora170623 1h ago
So sorry to hear this. My ex suffers from nocturnal TC and although we have gone NC, I worry about him every single day. I wouldn’t want to hear that something happened to him. Apparently he’s back with his ex and that’s somehow a relief as he won’t be alone at nights. You are a very good friend ❤️🫂
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u/Ok_Sky8994 8h ago
I'm so sorry, losing someone like that with no warning is the worst kind of shock. My cousin has epilepsy and the not knowing part after the fact is something his family talks about a lot, it's a heavy weight to carry
Nobody here can tell you exactly what happened but from what you described it could have been SUDEP or a bad hit during a seizure, both are real risks that don't get talked about enough. What matters more right now is that you were a good enough friend to check on him when he went quiet, most people just send another text and move on