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Weird compulsive behavior with CPS while aware. (repost)

Thu, 06/15/2006 - 10:43
Hi. I have had 3-5 Complex Partial Seizures every week for the last four months. I had an abnormal EEG and started Lamictal a month ago. I am pretty aware during the seizures. I have a lot of difficulty moving and speaking. Sometimes I'm completely frozen. I sometimes have these weird compulsive behaviors before, during, or after the seizure. I will say a word or sentence or sound over and over again. Or I will nod a lot, bite the air, rock, figit with my hand...etc. I know this is common for people with CPS, but I've never heard of someone being aware of it happening. I am aware of what I'm doing, but very compelled to do these things around a seizure episode. Sometimes I do this and just feel tired afterwards, without a seizure. I was wondering if anyone else has had an experience like this. I feel uncertain that this is based on something going on in my brain or if is psychological. I've been under a lot of stress and anxiety lately, so I can't discount the possibilty that this compulsive behavior is in my head (figuratively). I just really want to know. Thank you, Reb

Comments

Re: Weird compulsive behavior with CPS while aware. (repost)

Submitted by Cynthia10 on Thu, 2008-09-04 - 00:35
Nice that I ran across this, I was looking for info on people who stay aware during CPS. I stay aware during mine. My neuro diagnosed them as PCS due to the fact that I have a sort of altered level of consciousness at certain points. The best way for me to describe them is that they are like a combination of simple and complex partials. I have the deja vu and "feeling odd", I get a nauseated sort of sensation, and I just feel bad during, sort of an anxiety. All the deja vu and feeling weird usually lasts no longer than 15 seconds for me. Afterward I feel sick, just kind of nauseated and run down. And I can feel a bit confused afterward. Sometimes I won't know exactly what day it is or what I am supposed to do that day (I have been post ictal before and thought I had forgotten to go to work or school for a few days. I would jump up frantically and look at the calender or look at my notebook to see if I had been going or if I was suposed to be there. I would find something familiar and everything came back to me (realize of course I hadn't missed anything). The whole time I knew what was going on and that I was having a seizure. I can account for what happened up to the seizure, during the seizure (I can vividly recall the horrible feelings and the fear), and afterward. Its just the confusion part that is my problem. I don't have any real automatisms, sometimes I look around a bit for no reason, but I attribute that as that I am trying to stop it (somehow during the seizure I think that if I can stop the deja vu it won't progress, so I try to look at "new" things so that it will interupt it even though I know it won't). I know I can stay fairly well in control because I have had them where I used to work. No one around me ever noticed. I was on the phone with a customer taking an order and it happened, I was still able to do the order (very slowly though, the confusion had already set in so I had to have stuff repeated a couple times and though I could still use the computer system, it felt almost new and awkward to me). And other times it happened I was able to quit what I was doing and hide in the bathroom. No one knew about my problem and I didn't want them to know (I know, bad idea), so when it happened I hid, if anyone were to ever ask I'd say "I wasn't feeling well/thought I was going to puke".

Re: Weird compulsive behavior with CPS while aware. (repost)

Submitted by maryanns pond on Thu, 2008-09-04 - 13:56

Hi reb.  I have had temporal lobe epilepsy for 15 years now with a seizure frequency close to yours.  Everything you have been told here is true.  Behaviors for each of us are very different but we all have some that seem to recur mor ofter than others.   What I have learned though is that there are a few to laugh about.  Apparently sometimes when I have a seizure I lose all inhibitions.  I have been known to take all my clothes off during a seizure if my body believes that it is hot.  One of those episodes occurred in church one Sunday.  Fortunately my daughter and I were sitting in the back row of the balcony so only the preacher the choir and the organist saw me.  My daughter rushed to cover me and get me out by the back stairway as quickly as possible.  I have also been seen dumping my food on the table (even in fancy restuarants) and playing in it and smearing it all over the table.  My family and I laugh about these occurances and about the fact that I can get away with behaviors that they can't.  Fortunately in our small town almost everyone knows about my condition and how to handle me during a seizure.  In the local restuarant (small town type)  any waitress or other person who knows me comes to remove all things I might harm myself with out of the way.  They can tell when I am entering or already in a seizure by the glazing over of my eyes. 

I don't mean to belittle the emotional pain, grief, stress and danger that we go through, but sometimes you just have to laugh about it and go on.  I hope you have a family and community as loving as mine are.

Mary Ann

Hi reb.  I have had temporal lobe epilepsy for 15 years now with a seizure frequency close to yours.  Everything you have been told here is true.  Behaviors for each of us are very different but we all have some that seem to recur mor ofter than others.   What I have learned though is that there are a few to laugh about.  Apparently sometimes when I have a seizure I lose all inhibitions.  I have been known to take all my clothes off during a seizure if my body believes that it is hot.  One of those episodes occurred in church one Sunday.  Fortunately my daughter and I were sitting in the back row of the balcony so only the preacher the choir and the organist saw me.  My daughter rushed to cover me and get me out by the back stairway as quickly as possible.  I have also been seen dumping my food on the table (even in fancy restuarants) and playing in it and smearing it all over the table.  My family and I laugh about these occurances and about the fact that I can get away with behaviors that they can't.  Fortunately in our small town almost everyone knows about my condition and how to handle me during a seizure.  In the local restuarant (small town type)  any waitress or other person who knows me comes to remove all things I might harm myself with out of the way.  They can tell when I am entering or already in a seizure by the glazing over of my eyes. 

I don't mean to belittle the emotional pain, grief, stress and danger that we go through, but sometimes you just have to laugh about it and go on.  I hope you have a family and community as loving as mine are.

Mary Ann

Re: Weird compulsive behavior with CPS while aware. (repost)

Submitted by gretchen1 on Thu, 2006-06-15 - 11:19
Hello Rebpow - I'm sorry no one responded to your question before. I'll give it a try. I don't have the ability to diagnose if what you are describing is a CP seizure or some kind of obsessive/compulsive disorder. I'll tell you what I do know, but please also know, this is not complete information. You need to look up the characteristics of complex partial seizures. I'd also suggest you find good defintions for OCD or obsessive/compulsive disorder. A family member of mine has OCD. She has her own unique characteristic for her compulsions. One is to bite her finger. She's done this to the same finger for so many years she's had to have surgery to remove scar tissue just so she can bend it. But the nature of OCD is, the compulsion is very strong to do whatever behavior. This is a neurological disorder that is treated with neurological medicines. Unfortunately for her, they don't seem to work well. It sounds to me if you are having strong or undeniable abilities to do repetitive behaviors and if you are having a complex partial you might be manifesting that seizure with automatisms but I wonder, I just don't know, how many people have accurate memories of what they do during a CP. Much of what you describe I have seen in another epileptic in my family. If he's seated he's gets that 1000 yard stare, rubs the tops of his thighs repetitively and smacks his mouth repetitively too. He'll make occasional throat sounds, not intelligible but he doesn't remember any of this. Another family member's CP's she swears she is conscious and remembers vividly what she is experiencing, which is the same everytime and is positive she is talking. I've been with her. She's staring ahead, moving her head a little but it's more randomappearing eye movemeent than head movement but even little of that. What she absolutely knows she's feeling is impossible for one, for another I'm there, I know for instance the furniture she's sitting on is not hopping up and down. She doesn't talk. She too makes throat sounds but hers are more numerous, louder, but also unintelligible at least to me. To her? She doesn't feel like she's had a seizure she feels like she entered a, what she describes, partial dream state. She does not do automatisms. She is inaccurate on what transpired during her CP although it is so real for her it's very frightening for her to experience a CP. For myself? I just happened to ask my husband about this the other night. I've been having several nocturnal CPs every week, pleasant for the rest of my family because I either get up and walk around calling for my mother with one word "mama" repetitively but slurry, or I sit up in bed and they hear me have a one sided conversation. These "conversations are always about crazy things and I'll repeat whole sentences over and over. I'm not trying to be funny but the one remembered is me sitting up in bed staring at the wall and saying in a flat voice, they're throwing mudballs at our screens. I doubt I've said the word "mudballs" in my entire life. The conversation is short, nonsensical, and sometimes I remember the tail end of all of these. Like I'm waking up and caught between a dream and the real world. Can't get out of one and can't get into the other. I don't think that lasts long. That's what I asked my husband. He said if I'm talking I'll hesitate, pause for awhile, ask him was I dreaming or did you hear that or did that happen and go back to sleep. If I'm walking of course he has to get up to make sure I'm safe if I wake him up. He can't "wake me up" but he can body block me like a wall and I change directions. When the sz ends I don't remember calling for my mother but I have had the feeling of grieving for her,if I think back later, I think. I'm not sure when I remember grieving for her. She died 8 years ago. This is definitely only 3 person's experiences. There is much more information. But I hope it helped some. Gretchen

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