Knowing what you are doing during a seizure

[valeriedl]

I had two seizures yesterday, one in the morning which was a simple partial and the other in the evening which I think would be considered a complex partial. During the complex partial I knew almost everything that I was doing during the seizure. I don't know if I was awake when I started having it or if I wasn't but here's the story....

I was sleeping on the couch. I got up off the couch but thought I was getting out of bed. I looked at the clock and saw it said 4:30. I thought it was 4:30am but it was actually 4:30pm. I asked my husband if we were going out for breakfast. He told me that we'd already ate breakfast, I'd made it for us that morning. I don't remember any of this conversation.

I went into the bedroom and picked out an outfit to wear. It was an actual outfit too, not just some random clothes that I'd pulled out of the closet. I sort of remember doing this. I thought I'd made the bed too but it was already made because I did it that morning.

I came back out of the bedroom and asked my husband about going out and started arguing with him about it because I still thought it was in the morning. Really don't remember much about this.

I went into the kitchen and was going to start to do some of the things that I normally do when I first get up and I realized it was light outside. I couldn't figure out why it was light outside if it was 4:30am, it should have been dark. I was starting to come too a little more but asked my husband why I'd been in bed at 4:30 in the evening. He said I'd been on the couch. I didn't believe him until I felt the couch and it was still warm from where I'd been laying.

It took me a little while longer before I was back to 100% but it was just so weird that I remember doing so much of this. I have had several seizures where I'll get up and do things, I don't remember doing them though. I'll even talk to my husband about stuff but not knowing I'm doing it. He said once I had a seizure where I thought my dad was in the house and I was going to cook him lunch. I couldn't find my dad any were in the house and my husband told me that I'd already eaten lunch and my dad wasn't in the house. He said I was arguing with him like crazy about this until I came out of the seizure. I don't remember anything about that seizure though.

I had a TC once where I was completely aware of everything that was going on. I knew everything that everyone was saying to me and asking me. I was trying to answer but I couldn't do anything but lay there and shake.

Has anyone else had seizures where they know what's going on during them?

 

[BIGMAN131307]

It's a scary thought knowing you're having a seizure and can't do anything, but wait it out.

When I'd have a my typical CPS it would only last for about five minutes, but the effects would linger for a few hours. Often I would get this sudden chill, that would bring on a nausea feeling. Thinking I was going to get sick I'd head for a bathroom. During this time my consciousness would be impaired. I wouldn't be able to see or hear anything during that time. 80-90% of the time I'd never get to a bathroom, because my CPS would have passed. I'd then go back to whatever I was doing before. The times when I didn't get the nausea feelings I'd pick at my clothes, wander around blindlessly, etc.

Has anyone else had seizures where they know what's going on during them?

Yes but that was only when I was still on Lyrica. During my night seizures, I'd actually see and hear what was happening to me. Not directly, but by what others would be telling me. Although those seizures started as bad dreams, I'd wake up shaking. IMHO those seizures were scarier than having the RTLS.

 

[fluff4brains]

My experiences probably don't count as my epilepsy is due to a brain tumour, but I have Simple Focal Seizures. Whilst I get facial tics/spasms and loss of speech, I am fully 'present' and just get on with whatever I'm doing (crossing roads, ordering tea). In fact, being active seems to help shorten and lessen the seizure. I just need to manage the dribble, avoid trying to talk, and get it over with. This is with 750mg Keppra twice a day.

I've also been fully conscious through a period of status epilepticus where the ambulance driver was looking at me with abject pity and horror whilst I was trying to type out 'I'm fine, I'm not dead yet' on my iPhone. One side was locked up, I was having difficulty breathing, face spasming away like I was being fed 240 volts. Everyone assuming I was 'away with the fairies', but no. Dudes, I was fully awake, conscious, listening to everything.

 

[Belinda5000]

when I have my simple patials, I know what's going on.I hear what's going on and can see what's going on around mebut can't do anything.I hate those kind of seizures.:twocents:

 

[skyfire322]

I do have a recollection of everything that had happened during a seizure for the most part. Others are just bits and pieces; such as voices, or sights. Some of them I don't want to remember either.

 

[Cint]

I had two seizures yesterday, one in the morning which was a simple partial and the other in the evening which I think would be considered a complex partial. During the complex partial I knew almost everything that I was doing during the seizure.

Usually during a CP seizure, the person is awake but "nobody's home". In other words, the person has a blank stare on their face and isn't really aware of what is going on around them. What you described sounds more like all simple partials.

http://www.epilepsy.com/learn/types-seizures/complex-partial-seizures
What is a complex partial seizure?

These seizures usually start in a small area of the temporal lobe or frontal lobe of the brain. They quickly involve other areas of the brain that affect alertness and awareness. So even though the person's eyes are open and they may make movements that seem to have a purpose, in reality "nobody's home." If the symptoms are subtle, other people may think the person is just daydreaming.
~Some people can have seizures of this kind without realizing anything has happened. The seizure can wipe out memories of events just before or after it.
~Some of these seizures (usually ones beginning in the temporal lobe) start with a simple partial seizure.
~Then the person loses awareness and stares blankly.
~Most people move their mouth, pick at the air or their clothing, or perform other purposeless actions. These movements are called "automatisms" (aw-TOM-ah-TIZ-ums).

I had a TC once where I was completely aware of everything that was going on. I knew everything that everyone was saying to me and asking me. I was trying to answer but I couldn't do anything but lay there and shake.

Has anyone else had seizures where they know what's going on during them?

A TC seizure is also known as a "grand mal" seizure. I've had quite a few of those, too, and never have I been conscious or fully aware of what was said to me. Most of the TCs I had in public, 911 was called because of them, that's how the public reacts to those.
Maybe what you're describing is a "Tonic" seizure, where the body suddenly stiffens. You remain conscious and understand what is going on around you.

http://www.epilepsy.com/learn/types-seizures/tonic-seizures
What is a tonic seizure?
Muscle "tone" is the muscle's normal tension at rest. In a "tonic" seizure, the tone is greatly increased and the body, arms, or legs make sudden stiffening movements. Consciousness is usually preserved. Tonic seizures most often occur during sleep and usually involve all or most of the brain, affecting both sides of the body. If the person is standing when the seizure starts, he or she often will fall. These seizures usually last less than 20 seconds.

 

[valeriedl]

Thanks Cint.

During a complex partial I do blank out and there's 'nobody home'. I have done all of the things that you said in your post. I don't even know I've had one almost all the time unless there was someone there to see me have it. I actually loaded the dishwasher once during a complex partial and didn't know it until later in the day when I went to put more dishes in it. I saw that all the dishes I'd put in during the seizure were put in the dishwasher all over the place, that's the only way I knew I had it.

My husband has said several times I've had conversations (if you call them that) with him during a complex partial. It's just me thinking something is happening that isn't, after I've had the seizure I don't remember anything about it. It was just weird that this last one I remember a good bit of what happened during the seizure, which I believe was a complex partial.

The other one very well could have been a 'Tonic' seizure. I knew absolutely everything that was going on around me and what people were saying but I couldn't do anything, not even move. It was about the scariest thing in the world. 911 was called and by the time they got there I was out of the seizure and able to move and answer everything that I was being asked. The paramedic asked what my social security number was and I gave it to him. He couldn't believe that I did that.

 

[skyfire322]

...911 was called and by the time they got there I was out of the seizure and able to move and answer everything that I was being asked. The paramedic asked what my social security number was and I gave it to him. He couldn't believe that I did that.

Most of the EMT's know me pretty well here because work calls even if I have the smallest of seizures. If I do have one that only lasts a minute or so, by the time they get there, I'm back to my normal self answering all their questions as well in a coherent manner.

Most of the time they just say "We can give you a ride home in the ambulance, or you can go to the nurses office for awhile to rest." :roflmao:

 

[Carpentergirl]

Hi Everyone...I'm new here. I have both...Sometimes I am aware am sometimes i'm not aware of what's going on around me...I feel sorry for my family because sometimes they get Linda Blair from the Excorcist...and sometimes they just get a plain quiet seizure,and then a snore...lol..I just wanted to say hello, and that I am thankful to find some people like me to talk to..I Just had a few episodes on Sunday....trying to shake that insecure feeling you get afterwards...mine always lasts a good week or two...and nothing ever looks the same to me for quite some time....that's harder for me than the actual seizure itself...the insecure feeling I get afterward...

 

[Belinda5000]

It's a scary thought knowing you're having a seizure and can't do anything, but wait it out.

When I'd have a my typical CPS it would only last for about five minutes, but the effects would linger for a few hours. Often I would get this sudden chill, that would bring on a nausea feeling. Thinking I was going to get sick I'd head for a bathroom. During this time my consciousness would be impaired. I wouldn't be able to see or hear anything during that time. 80-90% of the time I'd never get to a bathroom, because my CPS would have passed. I'd then go back to whatever I was doing before. The times when I didn't get the nausea feelings I'd pick at my clothes, wander around blindlessly, etc.


Yes but that was only when I was still on Lyrica. During my night seizures, I'd actually see and hear what was happening to me. Not directly, but by what others would be telling me. Although those seizures started as bad dreams, I'd wake up shaking. IMHO those seizures were scarier than having the RTLS.

I can't do anything while I seize, and I hear people say I know you hear me.
I have simple partials,tonic clonics,generalized sz's and never know what might hit me.

 

[Rachellabella1995]

I have focal seizures (frontal lobe) where my head turns or jerks to one side (normally my right side), followed by raising my arm (the same side as my head). I end up lying there staring at my hand. My head and arm will both be twitching and although I'm fully aware of it happening I can't stop it.

 

[BIGMAN131307]

I can't do anything while I seize, and I hear people say I know you hear me.
I have simple partials,tonic clonics,generalized sz's and never know what might hit me.

During my CPS when I wandered, somehow I knew where I was and how to get there.

Ex. When I had CPS in school, Id have to go up and downstairs to get to the bathroom.
Somehow I knew to grab the railings. There was a time when I had a CPS at home and had a near miss. Instead of going to the bathroom, I went out my front door. But something in my mind made me grab on to the door knob. If not, then 3-4 feet more I'd would have fell downstairs. After my CPS passed, I went back inside.

 

[valeriedl]

During my CPS when I wandered, somehow I knew where I was and how to get there.

Ex. When I had CPS in school, Id have to go up and downstairs to get to the bathroom.
Somehow I knew to grab the railings. There was a time when I had a CPS at home and had a near miss. Instead of going to the bathroom, I went out my front door. But something in my mind made me grab on to the door knob. If not, then 3-4 feet more I'd would have fell downstairs. After my CPS passed, I went back inside.

I've had several partial complex seizures where I know what I'm doing. I'm totally blacked out when I've done them though and don't realize what ever it was that I'd done until after I come out of the seizure.

I had another seizure where I was in and out of it, knowing what I was doing at times, again Christmas eve in the evening. During the seizure I thought it was Christmas morning so I got in the shower to get ready for the day. I started to come to when I was about half way through the shower and realized when it actually was. These things are just so weird to have!

 

[LovelyGoldfish]

I have focal seizures (frontal lobe) where my head turns or jerks to one side (normally my right side), followed by raising my arm (the same side as my head). I end up lying there staring at my hand. My head and arm will both be twitching and although I'm fully aware of it happening I can't stop it.

I have something very similar happen as simple partials. My head will jerk to the right and my right arm will jerk or tremor, except the jerking only lasts for an instant so fortunately I don't have to sit and "watch" it happen so much. I vaguely recall that before I was medicated my arm would raise, too. (But to be honest, I can't remember all that much from the months before I started treatment...)

I totally appreciate your post, because I have an appointment with my neurologist (even though I've just seen her) and I was sitting here right now trying to remember why I had made the appointment in the first place! And then I saw your post and I was like "oh yeah... head/arm jerking."

 

[AlohaBird]

My sleep seizures have often included sleep walking during the coming out of it but not altogether lucid phase. I have woken up in some strange places. I am kind of aware that this is happening but it's like I am watching someone else, not really me.

 

[marika853]

In 2006, when I first started having seizures they were nocturnal. I'll never forget waking up one night with EMTs in our bedroom. My husband had called them. I remember some of the things I did. Going to kitchen to prepare food, going to dress for work. All during the night. But when "I came to" I thought that I had dreamt these things and not that they actually happened.
Then I started having auras during the day but was fully conscious of my actions. Never have had a grand mal. That's when we went to the dr and he told me I had epilepsy.
In 2008 my husband died and that's when I really had some bad seizures. Luckily, my sister-in-law was staying with me but she didn't speak English. My sons ended up driving 60 miles to my home on Christmas Eve to take me to ER.
Today I live alone but take my meds religiously and have not had any problems.
M