Hi rexpac

I have been given diagnosis of mild partial complex seizure disorder, with a single event of grand mal seizure (related to life threatening medical emergency on the grand mal decades ago). It was actually a neuropsychologist who identified it, and neurologists along the way since who confirmed the diagnosis.

All of my EEG's are consistently normal.

I'm not familiar with nocturnal seizures.

What has been most effective for me in terms of managing them has been Keppra-XR. To my knowledge, at my current dose of Keppra, I am not experiencing these events for a few years now. I've not been tried on the med your wife is on.

All I have to go on regarding how my partial seizures exhibit is feedback given to me from those who have directly observed them. Not very helpful to you given I have lived alone for over a decade until the past year.

I have noticed that these below things do seem to contribute to bringing them on for me:

repetitive beats/measures in certain types of music, especially in the bass tones

flashing lights, especially strobe lights which are more "penetrating"

overdoing it, such as in situations that require a lot of focus and concentration to "attend" to the task, that would include extended conversations.

fatigue

feeling unwell, such as coming down with an infection - that sort of thing

pain flares, lots of "brain drain" for me with those (c-spine issues), ties in with fatigue as well

just a few which come to mind at the moment. It's been a while since I had any, so going on swiss cheese memory

Now in terms of my sensation of one coming on, I have about a 30 minute window with mine. Initial things I recognize that a partial seizure event might be coming on is things start getting really loud. Head feels weird. I call those head sensations "fuzzy headaches". They don't hurt so technically aren't headaches, but I've never quite known what else to call them

Within that 30 minute window, I have to step away from the situation into a quiet environment and that helps.

If I miss the mark on my 30 minute window, my hearing becomes so sensitive that while everything is sounding louder and louder at the same time I can hear even someone tapping a pen on their desk far across the room as though it was happening right next to my ear.

I've been told, when I was experiencing these events frequently, that I have said things (which when repeated back to me after the event is completely different from my cognitive memory of what I said - it's happened too many times over 29 years post TBI for it to be less than candid feedback)

I've also had these partial seizure events where I only had memory of the events preceding the event and only awareness after the event that something had happened as had a memory blank of a few minutes unaccounted for. According to those who observed these, I was verbalizing and such and they had not a clue that anything was "off".

I've also encountered during these events a loss in ability to speak for a few minutes. The weird part about my particular partial complex seizures is I have some awareness of it happening at the time, yet am somewhat disconnected from the external environment at the same time.

Now, my personal situation diagnosis is MILD partial complex seizure disorder. From what I gather from your post concerning your wife, it sounds like her neuro is not ascribing "mild" to her diagnosis. So hopefully others with more experience along the lines of what is happening to your wife can add more insight.

I will add this though. I did for a time have a service animal, specifically a cat. Best decision I ever made. Cats are particularly sensitive in picking up signals of an oncoming seizure event, as well as even migraine events. Low maintenance animals too.

I had times when Tigger woke me up in the middle of the night when I was having an apnea event. He knew a couple hours before I did of an oncoming migraine. He "told" me by his behavior.

I first got Tigger before I was put on Keppra for seizures. I can't count how may times Tiggs would get in my face just before one of those was coming on, long before my 30 minute window.

That is one option, if you have no cat allergies in the home, you may want to consider.

Dogs are also wonderful service animals as an option. Most folks, when they hear service animal, tend to relate only to "seeing eye dogs".

Cats and dogs BOTH are excellent service animals for individuals with seizure disorders. They are costly to purchase already trained, or to pay for one to be trained. I trained Tigger myself, after all he was my "assistive device" so he needed to learn me and my needs, only I could teach him that.

sidebar: tigger passed away a couple of years ago, but I hope to be able to have the means soon to have another service animal