<waves hand> me! Nine years ago, I started having neurological problems. Long story short, my second trip to the ER in a month was via ambulance, unconscious and seizing. I'd started seizing in the middle of the night and continued to do so the entire way to the hospital and in the ER. So Grand Mal Status Epilepticus. After four days of testing (which was on top of 6 days of testing in the hospital the month before), they STILL didn't know the cause of my neurological problems but sent me home on AEDs for the seizures. I continued to have Grand mal seizures as they worked out the meds, but still, no explanation. The sleep deprived EEG hadn't shown anything. So thinking I'd be proactive, I made an appt to see a seizure expert. He scheduled a two night VEEG at the hospital. Relaxation, no kids, no stress......no seizure activity. He said I didn't have seizures

I went back to my normal neuro, who laughed and dismissed the guy's conclusion; she'd been at the hospital when I'd been seizing and had seen me!

Like I said, it's been 9 years now (heading into November.....I always get scared when November rolls around!), and I still don't know the cause. What I THINK is that I probably have a neurological vulnerability that is not picked up via EEG normally, but becomes destabilized when conditions are right.....hormonally, for me (right before my period; progesterone/estrogen imbalance) combined with stress and time (high stress and nighttime seem to lower my threshold).

I had a horrible night last night, and kept waking up with my heart racing and gasping for breath (it's right before my period; these "spells" used to progress to a kind of autonomic seizure, so I guess I should appreciate that it's "just" my heart racing, but still....). Really, for me, labels matter less right now than whether someone can help me, but it's so important to be taken seriously! Hopefully your husband's doctor is helping him!!!!