Simple Partial Seizure

[Kgartner]

Hello everyone! I posted this on a different website's Forum as well, so I apologize in advance if anyone reads this twice! However, there seems to be a lot more people in this group so I thought I would try my question here as well.

We were introduced to the world of epilepsy and seizures 3 weeks ago when my 15-year old daughter had 3 tonic-clonic seizures within 3 hours of one another. Two ambulance rides later we found ourselves at CHOP for a night, and were discharged the next day with a diagnosis of epilepsy and a prescription for 1500 mg Keppra. She was given a diagnosis of complex partial seizures based on my description of her 3rd seizure (which is the only one I witnessed from the beginning). I am so far happy with the care we are getting there, and I like her neurologist.

Ever since then I have tried to walk the fine line between trying to remain calm & hopeful and freaking out about every little thing. We have a follow-up with her neurologist on Wednesday, and I am trying to get myself sorted out about a couple of "episodes" that have happened in the past few weeks.

The one yesterday afternoon was the clearest to me - she was doing homework in the living room and called to me. I found her on the floor, kneeling in front of the chair and she said she had gotten really dizzy. She wouldn't (or couldn't?) answer my questions about how she had gotten to the floor, or exactly what had happened. For the next several hours she was upset and anxious, and said she couldn't think or concentrate on her homework. After 2-3 hours she was back to her normal self.

This is not the first time this has happened (without the falling to the floor part). One evening last week, after a night where she really had insufficient sleep, she also complained of being dizzy and disoriented, followed by several hours of difficulty thinking/concentrating.

This gets a bit complicated for me because she suffered from some major anxiety issues last year, as well as migraines. She is also not a "talker" - she has never liked to discuss her emotions or really let us know what's going on with her (she's an accomplished and dedicated dancer, and prefers to express herself non-verbally through dance or art). However, I have seen her have a panic attack, and I have seen her having major anxiety issues, and it doesn't look like that.

I am hoping that she is willing and able to describe what is going on to her doctor so that he can give us some clue about what is going on. But I guess I would also like to hear from the experienced parents here - does that sound like a seizure to you?

I'm not sure why I'm second-guessing myself so much. In general I am not a worrier, but this is all so new to me. Thank you!

 

[N Sperlo]

Hi, Kgartner

First off, welcome. Secondly, that sounds like a complex partial. I am controlled by Keppra and Vimpat, but when I was having simple partials, I could very rarely remember them and never could remember everything. Dizzy is one word I always liked to use to explain how things were, but we lack words to describe, often what we feel. It is hard to communicate as well even when having a simple partial (or aura). Once I had attempted to communicate with my wife and I was able to talk, but nothing made sense.

They can cause anxiety and concentration problems. I never get headaches, but many people do. Honestly, it sounds like this is whats happening. As the Keppra kicks in, it should hopefully start getting better. You should record what and when these happen for the doctor. If she tells you something, such as how she feels, she may not remember it later. Write it down.

I was 16 when I was diagnosed. I hadn't had a T/C until I was 26.

Try not to stress too much, and good luck.

 

[Kgartner]

Thank you for your response! I really wish I could get into her head and directly get a sense of what is going on there! Otherwise I feel like I'm just guessing.

She also had another episode that I have already discussed with her doctor that is a suspected complex partial seizure: she was watching TV with me, and suddenly stopped and stared at me and made a smacking sound with her mouth for about 25-30 seconds. She was non-responsive while she was doing that, and then was disoriented and non-responsive for about another minute, before going back to the show as if nothing had happened. The confusing thing is that she remembers the incident, and says that she was aware the whole time - but can't explain why she was doing what she was doing, or even tell me conclusively if she would have been able to stop what she was doing. She has tried to convince me that it was not a seizure ("sometimes I just do stuff like that"), but every conversation about that incident is more like she is describing a dream than talking about something she experienced in normal state of consciousness. In some ways it's a classic c-p seizure, but in other ways it doesn't fit (because lack of awareness is part of the definition of a c-p).

One person I talked to whose daughter also has epilepsy said that she thinks my daughter's altered "awareness" is just part of the seizure. And that may have been what happened again yesterday when she felt "dizzy" (perhaps that's her word for that state of consciousness), but I didn't see that one happen, just the aftermath. And of course I'm concerned because all of this has happened while she was on her full dose of Keppra - she didn't titre up at all because her last t-c seizure was in the ambulance on the way to the hospital, so they gave her an IV dose then and there.

I guess I'm afraid that I'm starting to see seizure activity everywhere, even when it's not happening, because I'm not sure how to tell if it's happening or not. And I'm afraid that the doctor is going to think I'm nuts - or worse, think my daughter is nuts!

I hope this makes some sort of sense. Does what I'm describing fit anyone's experience?

 

[jyearta]

I have simple paritals, I will tell you how I feel maybe this will help you understand what she is saying.

my start out with déjà uv (everything, people, conservation, etc seems like it has happened before, I get anixety when this happens cause I know what coming.

I will know where I'm at, and everything happening around me like people talking, but I can not response.

I will sack my lips several times, swallow hard for several times and have lobster claw movement with my hands.

My seizures were worse stating in my teens hormones play a role in trigging seizures.