Complex Partial Status Epilepticus CPSE

[menjomogo]

I honestly don't get why it's called SE on you - yours look like partials to me - you're still conscious. My Complex Partials had me walking like a zombie (before they were in vogue) and hitting things, knocking things over, moaning like a zombie (again). Everyone is different..yours seem simpler than mine. Then again, I could just be more complex :P than you :P (j/k, silly)

[menjomogo]

Status epilepticus is a life-threatening condition in which the brain is in a state of persistent seizure. Traditionally it is defined as one continuous unremitting seizure lasting longer than 30 minutes,[1] or recurrent seizures without regaining consciousness between seizures for greater than 30 minutes (or shorter with medical intervention).

[menjomogo]

That's not status epilepticus, pardon my pedantics. I've got TLE and a lesion on right top side of brain.

Status epilepticus is when a seizure continues over 2, 3 minutes with out stopping or interruptions. That situation required immediate medical attention.  Your seizure - so quick, I'm jealous! Was just fine.

[andrewjohnsmith]

@menjomogo You're right- it doesn't technically show status epilepticus. I called it that because it's my condition - I had no idea that 27,000 people would watch this and analyze it. The seizures didn't end after this video, I had many more and took my medicine. In fact, on two occasions I've had seizures for 5+ hours straight, that developed into convulsive seizures and serious injury. I wouldn't say I'm "lucky", although surviving both of those... See my other vids for S.E. Thanks.

[Niceboy3377]

@andrewjohnsmith wat does it feel during it

[jodifu6274]

@menjomogo There are many types of SE, and not all of them manifest the same way.

[MOBETTER4YA]

Thanks for sharing:)

[Charlesmillz]

i to have temporal lobe epilepsy and take zonisimide the side affects are pretty bad but overcome the negative affects .. Like i get acid reflux and very bad heartburn/chest pains assoiciated with the medicine

[andrewjohnsmith]

@Charlesmillz i'd ask your doctor about lamictal (generic is lamotrigine)... it worked so much better for me, without the side effects. i still have seizures, but they're more predictable now.

[bluesbaby123]

I had a right temporal lobe resection, it did not leave me seizure free. I have been on lamotrigine for the last 2 years. I have fewer seizures,but the stuff is quite dangerous if you miss a dose...I found out the hard way. I hope everything will be wonderful for you, and some day there will be a cure.

[fusionelements]

does it hurt?

[andrewjohnsmith]

@fusionelements i don't think so. granted, my memory goes out so maybe it does and i just forget. i had a bad one yesterday and my legs are still aching so maybe i tensed them up for a long time? but unless it develops into a convulsive seizure (only has twice ever) it doesn't really hurt exactly.

[route1valerie]

This video on complex partial seizure makes me want to know whether I should have brain surgery or so. What do you think I should do, because my complex partial seizures are getting worse. I'm tired of my seizures. Thank you very much.

Cordially,

Valerie Klaassen

[andrewjohnsmith]

@route1valerie if they're getting worse and worse, then you should at least consider it... i've never had to have surgery, luckily. but i've heard it can help people a lot.

[switch3453]

It's amazing how sudden and quick it lasts. I was recently diagnosed as having CP seizures.  It's kind of embarrassing :\

[SFNativeGal]

Thank you so much for explaining what it feels like. My daughter is 24 and non-verbal from birth (1p36 deletion syndrome) She has complex partials all the time. I had no idea what it feels like and the loss of memory or time in space.

[kp018boy]

Does your vision blur when you go into your spell?  Also are you aware of it when you do go into it?

[andrewjohnsmith]

@kp018boy Tough to say if my vision blurs. Because as soon as I have one, my short term memory goes out. After the episode, I usually can't remember anything.

I'm pretty good at realizing I'm having one. Sometimes I'll feel my head shake a little, and that tips me off. Most times I'll wake up next to my girlfriend and she can notice my eye twitching immediately - then she'll get me to take my meds.

[KenFromBeara]

@andrewjohnsmith i kind of have the same thing. short term blackout though. the one problem i have is knowing what i am going to say but my mouth will not structure the words. this only lasts a few minutes. the blackout itself only lasts a few seconds

[BrazilianGirlDoll]

Yes, the parcial crisis with secondary generalization (parcial complex) is the most common type of epileptic crisis in the adult...and you were under stress/sleep deprived, that's the usual. Yeah your focus is in the temporal lobe and/or hippocampus.

[crazy7house]

As long as I'm on Klonopin I'm ok, but take that away I go into fits with this!

[amara00]

I had a brain injury in the Army. I suffer from the same type of seizures. In most cases you will not realize you are having a seizure. People will state, "Are you tired", "Are you Ok?" "Man, you look like you are about to pass out !", "Stop rolling your eyes !", "What are you starring at?" " You really are day dreaming", "Wake Up!". They will say these things to us whom have these seizures.

[oliveca79]

OMG, thats the same crap I've been going through for over 20 years. I could never explain it to my relatives because it is so subtle on the outside. However, feeling it is indescribable! Thanks for posting!

[andrewjohnsmith]

Glad to help :)

[Serellyn]

I've had epileptic attacks too when I was a kid, I always fell down and had a full attack.

It started when I was a baby, and lasted until I was around 7-8 years old. I had to take 3 pills every day, it was called... "Depacine" I think, I'm not sure.

Anyway, good luck mate

[naeni13]

i also take lamectial it makes me sleepy but it works i have epelipsy and i haven't had a siezure since july-25th,2005

[relevantspud]

Same here, I take Lamictal (600mg a day)and havn't had one since July 17, 2006. I don't have any noticable side effects from it either.

[andrewjohnsmith]

Yeah, I still have the occasional seizure, but only if I party too hard. Lamictal seems to be working really well for me, too.

[zhuriyuk2]

I also find that in order to help keep myself as aware as possible during my seizure days, I have to watch tv, or a movie, or be on the computer. it helps my focus. It's been like this since I was a little preschooler.

[andrewjohnsmith]

Do you take something to snap out of your seizure? I take Diazepam (liquid) and it zaps me right back to functioning.

[DrFuckingPepper]

@zhuriyuk2

I agree. I find that I have to do the same thing to keep my seizures at bay, or else I kind of haze out and day-dream my way into one.

[zhuriyuk2]

I hate my seizures. They are very similar to yours, except combined staring and blinking ALL DAY LONG (status epilepticus), and sometimes for two days. Awareness is vague, nonexistant at times. I get thoroughly exhausted, and it all scares my kids. I have to take both Depakote 500mg and Lamicatal 25mg to try to control it. But still it happens approx. once a month. I made a song and a vid about how it feels, called "Blinkin' Shame". It's on my channel. I wish people wouldn't be so afraid.

[uberzwitter]

Sorry, I just ready one of your comments...

Well, still doesnt apply to the video.

[andrewjohnsmith]

I think it does in that SE is only defined by its potential. This seizure was a part of a larger sequence of them.

[uberzwitter]

Im confused by the status part. This isn't a long sz, so adding status to it is misleading.

[andrewjohnsmith]

I'm going to upload one in the next few days that is status, at least a sequence of rapid szs over the course of a minute and a half. Let me know what you think.

[erinoliver72]

I have a question.

Every since I was really little and I saw someone have a seizure, I've been terrified that I'm going to see another. Can you explain to me what causes a seizure so I don't have to be so scared anymore?

[zhuriyuk2]

Often there isn't a "cause" unless someone is spiking a sudden tempurature or has had an injury to the head. People with Epilepsy such as myself just have them unexpectedly. And in order to not be so scared, you must educate yourself on them and what to do if you ever see one. Don't freak out, stay calm, even if your heart is thumping a mile a second. Stay focused, keep person safe, and let seizure take it's course. Most important, EDUCATE YOURSELF!! Don't be afraid of us. we can't help it

[erinoliver72]

I don't understand. It didn't look like a seizure at all, although I'm not doubting that it was one. It was just nothing like I've ever seen. I see grand mal seizures a lot..i'm unfortunate. They scare me badly. I've never seen a subtle one before. I just don't understand. You look fully conscious..I just don't get it.

[andrewjohnsmith]

Yes, it is very different from a convulsive seizure.

Different parts of the brain perform different functions. Limbs are controlled in a different region that facial gestures, hearing and memory. So a seizure in one part of the brain can cause grand mals, whereas if the action took place in a different area (mine are), then the effects are not the same, which is why it just looks like twitching.

The danger with my seizures is that, if untreated (i have "status") they grow into grand mals.

[DrFuckingPepper]

@erinoliver72

Sometimes you get twitching. Sometimes you go blank. Sometimes you get a Dejavu sensation. Sometimes your speech gets slurred or you can't understand others properly.

There are many, MANY types.

[andrewjohnsmith]

@DrFuckingPepper yep, exactly

[Lynnieburd]

so what,..you have like partial seizures or something? i don't get it..you're awake during it or what? is it more like a tic? my brother has like severe grand mals...it looks so violent and he turns blue and makes noises and it's SO SO scary...what kind is this just like a staring fit? he used to have those as a kid, or drop seizures.

[andrewjohnsmith]

Yes, they're partial seizures. But it's status epilepticus, which means that I'm in a constant state of seizure until I take valium. Twice I've had a 6 hour seizure.

It is a sort of tic.. in the sense that my seizures occur in the facial muscles section of my brain. It's not as violent as a grand mal at first, but it can progress to one.

[Lynnieburd]

wow,..are you serious? so you have a seizure giong on constantly in a certain area of brain if you don't take the pikks..how come? is it because of brain damage from like an accident or something? does it feel strange? you're totally aware thought right? it's not like a staring spell? My brother used to have staring spells or drop seizures as a kid..

now he just has grand mals.sometimes i get a twitch in my face like suddenly i'll get one in my lip or something is that what it feels like? like?

[andrewjohnsmith]

No accident, it's a mystery why I developed them. Stress probably. My memory disappears when I'm having one, so it's hard to say what it feels like. I'm definitely not aware for that brief period of time, within the seizure (it's like 30 seconds of awareness, 10seconds of none) the twitch in your face is neurological. Something is making it move - with me it's a seizure. Seizures can cause a million different effects (embarassing ones sometimes), just based on where in the brain they occur.

[mannyman58]

What is your current drug regimen? And actually it's spelled Lamictal...may just be a typo though. How long have you been on the meds and have you had any adverse side effects?

[andrewjohnsmith]

200 mg of Lamictal... my neuro said I could drop to 100 mg if I wanted, but 200 mg has worked well. As far as side effects, it's tough to tell. My mood is definitely more stabilized - Zonegran made me angrier. And I eat more, since Zonegran suppressed my appetite. I can't really think of anything negative, which is nice.

[frogspore]

I've got temporal lobe epilepsy and finally have good control with Lactimil and Zonegran. Took me and my neurologist nearly 2 years to get the combination right. I had to go through valproate and trileptal titrations which both sucked. Trileptal was the worst.

I've had auras that have lasted days with deja and jaime vu. The jaime vu really sucks. There's a real creative side to this type of epilepsy, but it's gone with the meds. Can't say I miss it.

[complexpartial74]

Just like my seizures. I also have generalized tonic-clonic seizures. But not so often.

[complexpartial74]

Actually it´s been 2,5 years since i had any symptoms. But i had more partial seizures than GTK´s.

[chappu19]

OH this anit an absence seisure i catch myself twitching like that though and zoning in and out acouple times a day but its better the the grand-mal seizures ive had which i only expierence 1 every 1-2 months still worrys me though...

[chappu19]

I have epilepsy and i was trying to explain to my family that ive been having absence seisure like this one. its very embaressing and confusing when your having a conversation with a person and have no memory of what they or even what you wanted to say. makes me feel like a dumbass when really im just having a 10 second seisure.

[andrewjohnsmith]

jeez.. Well get it checked out, because they can do some tests, hook some wires up to your head and figure out what's going on. It's so underdiagnosed, but can cause some real problems. However, the twitches may be able to be controlled with drugs, and restore your memory.  Good luck.

[yintibbies]

3 of my 6 children have PCS and it'll be nice to show caregivers what a pcs can look like (only one of mine has motor involvement, the other two have dilating pupils and glassy staring spells with conciousness and partial responsiveness). My 2 year old is waking up just as she's falling asleep and then 1.5 hrs later acting like she's in pain. Neuro is setting her up for a sleep study. Ever had that happen to you?

[andrewjohnsmith]

Hi, I'm glad that in some way, this may help with the caregivers. I'm sorry to hear about your children, I'm lucky, as my seizures are never painful. As for sleep study, I had one when I was first in a hospital, but they found nothing of interest. Mine happen when I wake up incredibly stressed. Hopefully your children just have a juvenile form - apparently as children's brains grow, they change, and can "grow out of" epilepsy. Thanks for the kind words :)

[xlawspawsx]

dont understand =S

[andrewjohnsmith]

it's a nonconvulsive seizure video. i took it of myself. if you look from :13 - :19 my head subtly shakes, and it's clear i lose some of my faculties, such as speaking and vision processing. not all seizures are flopping around on the ground, and this type of seizure has been underdiagnosed for years.

[MySeizures]

Andy, Thanks for your caring response. I'm sorry if I sound very bitter because I'm. Thanks to Epilepsy, ten years of seizures have thought me a lot of lessons I never thought possible. I'm fortunate enough NOT to be one of those debilitated bed-ridden patients who are hoping to be resured and cured by the self serving Non-profit agencies, greedy doctors, mafia insurance and corrupt health care corporations. Seizure or no seizure, I would rather stay on my own. Thank You.

Gerrie

[MySeizures]

Ask your Senator,

Just like Alcoholics Anonymous, why isn't the Epilepsy Foundation available any where in USA, except designate areas? Who finances the EFA? Besides dispensing redudant self-serving brochures, how, what, where and when did the EFA helped any victim of Epilepsy since it ever came to happen around? I wonder, if the EFA have any idea that victims of seizures are losing every thing they have ever earned for persistent seizures? WHERE'S THE HELP?

[andrewjohnsmith]

The EFA is supported by Big Pharma. Most people don't know this but the big question is "Does it compromise what they do?" Personally, however, I found a little bit of relief in their forums, where everyone seems to be nice. I know what you're saying about changing lifestyles. I have to avoid stress like the plague.

[MySeizures]

Andy, I've no problem with EFA forums, and in most cases participants are victims of epilepsy chit-chatting among themselves, seeking company & advice. Alcoholics & drug addicts go to Alcoholics Anonymous for help. Besides chit-chatting on EFA forums, where does VICTIMS OF EPILEPSY go for "HELP". EFA is NOT Alcoholics Anonymous & it's nothing more than broadcasting corporation, therefore, Where do Epilepts go for help or are they on thier own? NEED DEFINTE ANSWERS & NOT EFA's BROCHURS.

[andrewjohnsmith]

I'd recommend speaking with your neurologist, as each epilepsy case and personal situation are different. I'm sure your seizures have an impact on your life completely unlike my experience. They can tailor make a solution for each of us. If the EFA gave blanket explanations/advice for everyone, there would no doubt be some who wouldn't be satisfied and possibly affected by the general information. Also, the EFA is currently fighting for the neurologists' right to prescribe brand name drugs.

[ahaili]

that's interesting. my cousin's are like this sort of, but longer and weirder. thank you for posting this so people can see what this is like. i hope you can get some relief from this.

[andrewjohnsmith]

longer and weirder? mine usually do go longer, around 30 mins, and i've even had one go on all day and change to convulsions

[luxcretia2]

OMG.how often do you have seizures?this sounds as if you had status all the time?

[andrewjohnsmith]

it happens about every 3 months, so it's not too bad.. plus it only happens when i wake up from sleep, either a nap or in the morning. every seizure i have is status though. i'm planning on recording the next one, it's been 2 months so i'm expecting haha

[andrewjohnsmith]

i came right back but then went right back into it. unfortunately, i only took video of 30 seconds, but if you can imagine this looping over and over (for 15 mins or so) until i managed to take some liquid diazepam, then you get the idea. hopefully the next time it occurs i or someone else will manage to take a longer video.

[sandofarms]

Did you have an absence seizure or a CPSE?

You seem to have came right back.

[2006DNSmith]

This is interesting. I think many people are unaware of the fact that not all seizures look the same.