I think the mystery episodes Emily is having are slowly becoming a little more clear, although the “why” is less clear at the moment. Em’s EEG is scheduled for Monday and that should (hopefully, fingers crossed) give us some clarity. In the meantime, we are taking notes, gathering information, getting them on video, and doing our own research. It is very possible that we will know nothing after the EEG and she will need further tests, but, I am hopeful the information we are gathering will be useful for the doctor and get us closer to answers.
She has had more than twenty of these episodes since the 9th of February. Now they have evolved into two distinct types – in one, she goes limp and can’t talk or move for a couple minutes. As soon as she can move, she starts having trouble breathing. Sometimes that is minor, sometimes it is scary and lasts a (relatively) long time. For the most part, she is conscious during these but there are times that she is less “there” and even forgets to breathe. Even though this doesn’t perfectly fit with any specific type of seizure, I am more and more convinced this is some type of seizure, particularly since she has added myoclonic jerks as part of the episodes. And there have been several times where her head drops or falls to the side, depending on how she is sitting/laying, during the episode.
The new type, which she has started having, seems to clearly fit under the umbrella of simple partial seizures – at least from what I am reading. In the middle of a conversation, she suddenly complains of being exhausted, then her vision changes – she says there is a ball of light between her eyes and the room around her is distorted and rather scary. She says she has a sense of anxiety (maybe more like doom) and paranoia during this. She has several myoclonic jerks and either her leg, hand, or thumb twitches repeatedly. After a couple minutes (or less) her vision returns to normal and she is exhausted and groggy. Once she lays down for a few minutes, she is totally back to normal and is laughing, talking and generally herself again – anxiety is gone and she carries on. She is totally aware and conscious during these episodes and is able to respond, although she is distressed while they are happening so far. From what I have read, this sounds exactly like a sensory seizure to me, aka focal seizures.
We, of course, are now wondering if this really is all new or if she has been doing some of this all along. If I had to bet money, I would say it is definitely related to the concussion but it is possible that some of this has been around for awhile and it was so subtle that we didn’t see it. I have never actually seen her have an absence (petite mal) seizure but she thinks she might be. And she could be right.
I have learned a whole bunch about seizures in the last few days – it is all very interesting, although I would really rather not have one more thing to learn about, to be honest. The most interesting thing I learned is that there is a category of autonomic seizures which fall under the umbrella of simple partial seizures. This could explain why her heart rate is bouncing around like crazy during these episodes – it goes from 125 to 85 in the space of a few seconds. (I don’t even know when the last time her HR was that low. It is typically 100 at rest, so 85 seems crazy low for her.) And her oxygen level bounces between 99 and 89 during the go-limp-and-can’t-move-episodes .
In particular, this is interesting in light of one episode (which may be a third distinct type or may just be an anomaly) she had the other night. She overheated (doing absolutely nothing) and felt awful. She had to have an ice pack to cool off (which led to her CRPS pain worsening but whatever) and her right hand was trembling like crazy. Then her thumb twitched for about 30 straight seconds. She had a couple myoclonic jerks then was fine. Back to being normal and said she was hungry. So, is that Dysautonomia or an autonomic seizure? It isn’t anything we have seen before in 5 years of dealing with dysautonomia, that I am sure of. Hopefully we can figure it out soon.
The why is the key here, I think. Is it from the head injury? Is it epilepsy? Is it from CCI? Is it from Dysautonomia? Is it something else entirely? Who knows at this point. But, I am feeling more and more sure that we are dealing with some (probably several) type of seizures and I am hopeful that, once we pin labels down, we can actually treat these.
We are not going to be surprised if she ends up with a big seizure. I hate to even think about that possibility but I am trying to being realistic as I watch the situation evolve and the myoclonic jerks increase. Some of what she is doing can be an aura for a complex seizure so we are just prepared (as prepared as we possibly can be) if it happens and really, really, REALLY hoping it doesn’t. Our goal is to keep her as safe as possible and protect her brain from further injury. She is getting sick and tired of being hovered over but there are some precautions that are just sensible until we get a handle on this. She is very grumpy over the fact that she has to be sleep deprived for her EEG and I am not looking forward to that whole process but we have to find out what is going on so we can get her back on track.
The good news is, her memory has slowly improved and speech therapy is going well. Both therapists she has seen come highly recommended by her dad and she loves them both. And they love her. She is enjoying the therapy and it seems to be helping, even though she is definitely going through some ups and downs that are challenging. It would be nice if her progress could be straight forward, but, that doesn’t seem to be in the cards right now.
With luck, we will know more Monday. Either way, I will post an update when I know more. 🙂