Kojewnikoff Syndrome- anyone else have this?

[Krista2882]

Well, I learned something new from one of the polls in the Back Fence forum. There's a thing called Kojewnikoff Syndrome (AKA Epilepsia Partialis Continua), and I think I have it.

from emedicine.medscape.com:
Epilepsia partialis continua can be considered the status epilepticus equivalent of simple partial motor seizures. It manifests itself as focal motor clonic seizures without jacksonian march, seizures remain localized to the part of the body in which they originate, and motor activity is often persistent, lasting for at least 60 minutes and often for hours, days, weeks, or even longer. Consciousness usually is preserved, but postictal weakness is frequently evident.

My simple partial seizures can last for hours at a time (or days- which hasn't happened in a few years; since before Lamictal was added as my 3rd med). My doctor never said anything about the long-lasting seizures, but I've mentioned it on message boards and people have said it's not possible to have a seizure for that long. Well, I do! And now I know that it's a possibility and it has a name. My doctor must know about this and that this is what I have, because he's never tried to tell me that this is impossible. But why didn't he tell me that these are not typical seizures and that there's a name for it? Doctors need to start telling their patients the details. Seriously. I even went for a second opinion (on my neuro's suggestion, actually. I appreciated that) at Yale and I had Video EEG for 4 days at Yale New Haven hospital, and the doctor who was assigned to me there and who I had follow-up appointments with never said anything about that particular trait of my seizures, either. And I know they knew I was having these very long seizures, because I would feel one coming on, press the button, tell the person I was having a seizure, and then about 20 minutes later I'd her him say, "Are you still having a seizure?" And I'd say "yes", and then another 15 minutes would go by and he'd ask me again. I'm assuming he was watching my EEG and seeing my brain going crazy for 45 minutes straight.

It's kind of scary to think that whenever I get my seizures, I'm basically in the simple partial version of Status Epilepticus. Eek.

Anyone else have seizures like this?

 

[momof3boys]

That doesnt sound good at all! When i went in for my VEEG in march of this year, i was having simple partial seizures, but mine only lasted 1-3 minutes each. I couldnt imagine going for 45 minutes having a seizure! I cant believe any doctor wouldnt at least sit down with you and tell you about the seizures you are having. Have you thought about getting a second opinion? Sounds like something I would do! Hang in there!

 

[Krista2882]

Yeah, my Video EEG and follow-up appointments with the neurologist at Yale was my second opinion, and they never said anything about it either. She just told me that they saw my seizures coming from my frontal lobe. And that they didn't catch all of them on the EEG because they're sometimes too deep within the brain.
My seizures are annoying but at this point not too bad. They're mostly controlled so I usually have one or two days a month when I get minor ones. They always last for a while, though, but not as long as they used to be. Although this past week I've had them every day and a few of those days they were lasting for hours at a time. Anyway, it's mostly just a shaking and slight jerking on the right side of my body, but most often now just in my right leg. So they're not too terrible- just annoying when they last so long. It was pretty miserable when they weren't controlled yet, though.