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!
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!