Simple partial seizure - or something more?

[Kgartner]

Hi everyone! It's been a while since I've posted much here because my daughter has been doing so much better! After having multiple tonic-clonic seizures during the summer and fall of 2014, and a very intense 4-day video EEG last November, she started taking Vimpat and hasn't had a tonic-clonic seizure since then. She's been able to go back to regular high school (she was doing online school for most of last year), and back to her intense ballet studies and we are very grateful!

However, she does still have focal seizures. Sometime they are more frequent, sometimes less, but they have never really stopped. Since we increased her Vimpat to 400mg/day in August, she was having them much less frequently, but on Tuesday she had a very strong one.

Most of her focal seizures are fairly mild simple partial seizures which are the same feeling as her seizure aura (which is a kind of jamais vu - an intense feeling that everything is "weird"). They last 15-30 seconds, and she recovers quickly. It's clear to me that these are simple partial seizures.

But every couple of months she has a REALLY intense one - and that's what happened on Tuesday. She felt an aura coming on during Spanish class, and it was so intense and scary that she lay down on the ground in her classroom - it didn't last more than 30-40 seconds, but she said everything looked and sounded "wrong" and she was sure she was about to lose consciousness. After the episode her whole body was trembling ("shaking all over" the nurse said), and she was crying, both for about 15 minutes. During these intense episodes, she doesn't feel like she loses consciousness - she feels like she is about to, but she says that she doesn't lose awareness. So that would mean that technically they are simple partials. But the after-effects are so intense that they seem like they are in a different category - there's the shaking and crying immediately afterwards (which I've observed the other times this has happened), then she's generally quite anxious and agitated for the rest of the day, and then exhausted for another day or two.

I know that the line between a simple partial and complex partial seizure is not always a clear one. In the past, when her aura progresses to a clear complex partial (fixed stare and head turn to the right), it ALWAYS generalizes to a tonic-clonic seizure. Except for one episode during her video EEG (which was unusual circumstances so may have been atypical) I've never seen her have a "classic" complex partial that didn't generalize.

So while the fact that she stays conscious during the episode means it is a simple partial, the intensity and and after-effects make feel that it is more like a complex partial. Or can simple partials be that intense, and have such a profound impact that lasts for days?

Any thoughts would be appreciated. We are seeing her neuro in about 10 days, and I'm really feeling like as long as these types of episodes continue to happen she is not getting adequate seizure control.

Thank you!

 

[Belinda5000]

It can be very common for you to be semi conscious and have focal seizure or even have complex partial-simpartial I have all of them myself.
When I started having focal I didn't think it was a seizure until I talked to my neuro.

 

[Kgartner]

Thanks Belinda! Seizures and epilepsy certainly don't always fit into neat boxes or categories. I've never heard of a mixed complex partial-simple partial - is that what my daughter's episode sounds like to you?

 

[Nakamova]

I think that if she remembers what happened, then it's still considered a simple partial, rather than a complex partial. Simple partials can include vision change or hallucinations as well as feelings of anxiety and dread. Maybe got hit with a triple whammy of these symptoms?

I think seizure symptoms don't always fit comfortably into the established categories. When my dose is a tad low I've occasionally experienced "blips". They are generalized events -- my whole brain gets switched on and off very quickly -- but they are extremely brief (one second, tops) and I know that they've occurred (unlike absences). There doesn't seem to be a clear category for these events...

 

[Kgartner]

Thank you Nakamova! She definitely remembers the episode - in fact, that's one of the worst parts for her because she keeps replaying it in her mind - so I think you're right that it would then be classed as a "simple partial seizure." I have reached out to her neuro to see what he would say about it.

I totally agree that seizure symptoms don't always fit into clear categories. Her seizures have always been a bit atypical: while her doctor thinks she has TLE, her auras do not have some of the more typical features of TLE auras, and they don't show up on EEGs (which led her doctor to misdiagnose them as anxiety for several months); and the fact that her complex partials inevitably and immediately secondarily generalize is also fairly unusual.

I don't know why I'm so hung up on finding the "right" way to categorize it anyway, except that in my mind a simple partial isn't as "serious" as a complex partial - as though there's some kind of seizure hierarchy. That is certainly not an accurate or helpful way to think about things! Whatever is going on in her brain, it's clear that it's quite serious and impacts her tremendously. She is only really back to her usual self today, 2 1/2 days after the seizure. I think I need to focus more on the EFFECTS of the seizure on her life, and less on trying to figure out the "type" of seizure.

 

[toro]

There were times I would go through the exact same thing. A few times I ended up hiding under my desk and went home early due to the severity of the following anxiety.

I would not pay much attention to the language. The fact is a lot of neurology is still pretty uncharted territory (honest neurologists will tell you that) and these categories are very arbitrary.

Some general seizures barely fazed me. Some partials left me feeling like I finished a week long bender.

 

[Kgartner]

There were times I would go through the exact same thing. A few times I ended up hiding under my desk and went home early due to the severity of the following anxiety.

I would not pay much attention to the language. The fact is a lot of neurology is still pretty uncharted territory (honest neurologists will tell you that) and these categories are very arbitrary.

Some general seizures barely fazed me. Some partials left me feeling like I finished a week long bender.

Thank you toro! Just to hear that you have had the experience of a partial seizure knocking you out for a while is incredibly helpful to me as we try to figure out what to do for Annika next. I will work hard to "not pay much attention to the language" although as someone who tries to get control of things by figuring them out that is extremely hard for me to do!

This week has been quite discouraging since we had really hoped that the Vimpat increase would make some difference. At this point I don't really think anything will eliminate her partial seizures.

 

[Matthew74]

I think Nakamova is right. In a lot of the material written for laymen, the categories are overly simplified. My understanding is that a complex partial "affects" consciousness, not that you become unconscious.

In the EMU I had a couple. I thought I "remembered" the whole thing, but according to the staff I didn't. THEY SAID they asked me to remember a word. I don't remember them asking. I may have been too distracted to notice they were talking to me. Anyhow, my "forgetting" the word was grounds for diagnosing me with complex partials. I was conscious the whole time.

I was also unaware that I shake noticeably in a seizure, even though I'm conscious.

I knew at least some of them were complex partials however, because I start to loose awareness of what is going on around me. I know when I'm going to generalize because I totally loose contact with my senses.

 

[Kgartner]

Thank you for your input Matthew74! I can't tell you how much it means to me to hear from each of you, and for you to share your experiences with me. Annika also always knows when it is going to generalize, but she can't put that sensation into words.

I wasn't with Annika the last 2 times she has had one of these very intense focal seizures, and so it is very hard for me to judge how close to the line of "unconsciousness" she was, or the degree to which her consciousness was impaired. Based on times when I have observed these episodes, I would say there is at least some impairment of her awareness, but it may be completely due to her being distracted by the intensity of the experience. And even though she claims to remember the entire episode, there's no way for me to know if that is actually the case. So again - I think it is right on the line.

Hopefully I can communicate to her neuro the seriousness of these episodes, even if they don't fit into neat categories.

 

[valeriedl]

It can be very common for you to be semi conscious and have focal seizure or even have complex partial-simpartial I have all of them myself.

I had a seizure like this last week. I got very confused about things when I got up in the morning. I was ok when I first got up but then I didn't know what time I got up for school, I'm 39 and haven't been in school for years. I would start to do things that I'd do to get ready, like get in the shower, but that just didn't seem right so I'd stop and start doing something else. There were big gaps of not knowing what I was doing and knowing what I was doing.

When my husband got home from work, which I don't remember, I started asking him questions about me getting ready for school. I remember some of the conversation, not all, and he realized I was having a seizure. He put me back in bed, don't remember that, and I fell back asleep.

I'm not sure how long the whole seizure lasted because I was home alone during much of it. It was really weird because I'm not sure if I've ever had a seizure like that before.