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I went on vacation with some friends last week. One of them told me the story of his neighbor, Patrick. Patrick had died of “Sudden Unexpected Death In Epilepsy” (SUDEP) a couple of weeks earlier. It is a horrible story and, out of respect for the family, I don’t wish to go into much detail. Suffice to say, I contacted the family and they are private people who are dealing with unimaginable tragedy.

The point is, during the course of that conversation with my friends, our talks turned to the subject of death and epilepsy. My friends, none of whom are epileptic, really don’t understand the relationship seizure patients have with death.

Those of us who have to deal with the fact that we might have a seizure today, know that death is a very real possibility every time we have a seizure. Sure, it’s rare — but not so rare that you don’t know it’s there.

“Sudden Unexpected Death In Epilepsy” is the leading cause of death among epileptics (1). It is not car accidents, drowning or operating heavy machinery, which people who don’t fall down tend to think that it is. The odd thing about SUDEP is that it is almost a “we give up” diagnosis. When a seizure patient dies and no other cause of death can be found, what you are left with is SUDEP. The person is epileptic so that “must” be the cause of death (2). The heart must have stopped, the person must have stopped breathing . . . to tell you the truth, we don’t really know, really. But “epilepsy” must be the cause.

A couple weeks before I left on my trip I received an email from another friend about a Marine who died from SUDEP in St. Cloud, Minnesota (3). At the time I didn’t think much about it. It happens. But when the subject came up again while I was on vacation, it seemed like quite a coincidence; two cases brought to my attention in such a short span of time.

Not that epileptics are dropping like flies. Only one in one thousand epileptics dies each year from SUDEP — although, in cases where the person experiences frequent seizures that number rises to one in one-in-fifty (ibid). And SUDEP is the No. One cause of death for people with poorly controlled seizures.

It’s bad enough that we have to constantly worry about dropping on the floor. But we also have to live with the fact that death is a legitimate possible outcome to every seizure. It’s not a pleasant fact, but it’s there. And believe me: it FEELS like you are dying. Every time. I always think that I am dying when I have a seizure. That fact that I know I actually might doesn’t help — not that I am thinking clearly enough to make that connection at the time.

Maybe, if people knew the whole story, they would stop saying how funny it is when they “dance like an epileptic.” Maybe if they knew that when we have a seizure we might never get back up, they would stop making jokes about falling down.

1 – http://www.epilepsyfoundation.org/aboutepilepsy/healthrisks/sudep/index.cfm
2 – http://www.epilepsyfoundation.org/aboutepilepsy/healthrisks/sudep/SUDEP-FAQ.cfm
3 – http://www.sctimes.com/article/20140207/LIFE/302070050/Mom-friends-spread-word-after-St-Cloud-Marine-victim-sudden-unexpected-death-epilepsy

One comment to I THINK I’M DYING

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