Epilepsy and language comprehension
If I told you my back hurts and wanted to describe how painful it was, I'd use a universal pain scale and tell you it feels like a "4". That's easy enough to understand - it's a nagging pain, it prevents me from doing some activities, and I can't easily ignore it. But for the most part, I can go on about my day. Maybe you have felt the same pain, either in your back or in another part of your body, so you can understand how I feel. If I needed to describe it to a doctor, they would also easily understand.
But if I were to try and describe inter-ictal activity1, I'm at a loss. The fact that I've tried writing about this multiple times is a testament to that. I could barely describe it to my neurologist last year when I was expressing my concerns. I could distil it and say it's "brain fog", and maybe you could understand what that feels like; but that simplifies it too much and doesn't accurately depict what I experience.
So this is my latest attempt.
Confusion
The event that prompted the call to my neurologist last year was the most concerning one. I was told that this wasn't a seizure, but from everything I've read about other people's experiences it sure felt that way. Focal aware, maybe? Focal unaware? I'm not sure of the terms, since I've only otherwise dealt with tonic-clonic seizures and I'm totally unconscious for those. I asked my wife to describe what she saw so that I could give better information when I called the doctor's office. Here's an edited-down version of what she wrote:
You started trying to express that you were tired and wanted to go upstairs but you couldnāt finish the sentence. You would get a few words out like, āI feel likeā¦ā āI think Iāmā¦ā. You mentioned that you couldnāt find the right words to express how you were feeling but you did fully tell me that you couldnāt find the words, just not the right ones to tell me what you were feeling.
You tried a few times before I prompted you. Your face looked very tired and not a lot of energy. You didnāt stare off anywhere. You seemed to be very aware and still moving (like petting [our dog] Bailey) but you couldnāt get the right words out, you were still speaking full sentences just not on the topic of sharing how you were feeling. After a few minutes, we got up and you went into the kitchen, loaded the dish washer, turned it on, turned off the lights and followed me and Bailey upstairs.
Upstairs, I said a few things to you and you answered but it did not seem to register, so I didnāt push it because you seemed to know what you were doing. After about 30 minutes or so, you seem to be fully back and alert.
I vaguely remember this, and at the time I remembered the details like trying to say things and not being able to finish the sentence. This is the most extreme example of what is (apparently) non-seizure activity that I don't understand, and the easiest to explain. I think this is the only time it's happened, and thankfully has not happened since my medication was increased to try to tackle this.
Language comprehension
Harder to explain is when I lose the ability to understand others and even myself. It can happen in any situation, and doesn't affect my general abilities. It could be in the car while I'm driving - I don't lose my ability to focus on the road and other cars, but I lose track of what the passenger beside me might be saying.
The confusion here is related to the above, but is specific to words and phrases. I will hear someone talking but not understand at all what was said. I will ask the person to repeat themselves and it may take multiple attempts before I finally "hear" the words and make sense of them. It's not the same as being unable to understand someone speaking a foreign language. At least in that case, you can make out words. And what I experience isn't exactly tuning things out, either. The words are there, on the periphery. But I can't grasp them.
Often I will avoid asking them to repeat the words, because in my experience people don't like to repeat themselves. So I do my best to carry on and understand the conversation in context. Thankfully this confusion lasts for a few seconds, but can be minutes if I'm unlucky.
On occasion, I won't understand myself. It's an odd feeling: I am aware that I'm speaking, but I don't know what I'm saying. The words mean nothing. The part of my brain that controls speech is on autopilot. Again, I'm aware and able to do everything else around me. The best example that comes to mind is when I was leashing up my dog to go for a walk, and talking to my father-in-law about something. One moment I was aware and engaged in the conversation, and the next I could have been spouting random words for all I knew. Apparently what I said made sense, otherwise I might have been met with a confused "what are you talking about?".
It's disconcerting, but the best I can do is move on. Like the confusion though, this doesn't occur as regularly these days.
Fixation
This is the weirdest experience, and perhaps the hardest to explain. It is also still a common experience, but seems to occur mostly when I'm tired and nearer to the end of the day.
I will fixate on a short sentence, and start hearing it everywhere - most commonly on TV. Here's why it's hard to explain - I can't think of a phrase as an example, just the situation when it occurs.
The best example to use is when there is a baseball game on TV. There is a lot of repetition in the game, which makes it easier for me to hear (or think I hear) a specific combination of words. But it happens in sitcoms, which leads me to believe I'm not really hearing the words. But what makes it more confusing...I will try to think of the words I'm hearing and I completely lose them. I'll hear them a few seconds later - and lose them again. So I can't even say to my wife, "hey it's happening again, I'm hearing xyz phrase over and over again". The best I can do is say "that thing is happening again". (Usually I don't bother because it passes within a few minutes.)
Another example: I was out shopping one day, and kept hearing a phrase in the music playing in the store. For whatever reason, I wanted to text my wife about what I was hearing. Every time I went to unlock my phone, I couldn't remember what that phrase was. I'd lock the phone and put it in my pocket, only to hear the words again. Repeat: unlock the phone, open the messaging app, forget the phrase.
Making sense of it all
Does any of this make sense the way I'm describing it? I've tried describing it even to other people with epilepsy in a Discord channel, and even they don't understand. The concept of "jamais vu" has been suggested but after reading about it I don't think that's the case. It's close, and describes some of what I experience, but I think it falls short of how it feels.
Having written it down, maybe someone else will stumble across this in their Internet searches and tell me they experience the same thing or something similar. That's all I hope for when I talk about epilepsy.
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Brain activity that happen "between" seizures - my medication may prevent a seizure, but I may still have abnormal activity that would normally occur between seizures (as much as "normal" seizure activity can be).↩