Anyone here have problems with myoclonus at night? I generally can sleep just fine, but there are nights when it's an absolute nightmare (ha! sorry about the pun....) trying to fall asleep. It can take up to an hour, where I jerk back awake numerous times; some nights are worse than others, such that the jerking is followed by tachycardia. On those nights, I overall feel very "neurologically vulnerable", with higher startle sensitivity (to noise or dh's movement). It's sometimes before my period (which is when my seizures used to occur; in fact, I went in for a sleep study before my period so that this would happen, and it DID, like FIVE times at least before I fell asleep, but they didn't even mention it since it happened before I fell asleep. The only comment was that it took me an abnormally long time to fall asleep); it happened after I at birthday cake (I'm very sensitive to sugar and am on a low-carb diet, but the kids made it so I ate it.....); it happened after I drank a movi prep for a colonoscopy, and after one of the jerks, I tried talking and couldn't for several seconds (which freaked me out!). I do NOT have jerking episodes all the time, nor do I confuse these evenings with minor jerks when I do have minor jerks (which I assume are the kind everyone has).
Why do I ask? Because NewNeuro, the JERK, says my jerks are no big deal, everyone has them, just I have "more significant jerks". What the heck does that mean? He says they are NOT seizures, not anything to be concerned about. Note that I am having these jerks while on 3000mg of keppra and 150mg of lyrica. If they are not seizures, then the AEDs don't matter; if they are seizures of some kind of hyperactivity of my brain due to physiological reasons (which *I* think, since they seem to be associated with events like before my period, stress, or sugar, and not random), then I think it's reasonable to be concerned about going off all AEDs.
I also have nocturnal wakings during these nights that I suspect are related to whatever neurological vulnerability is there.....(don't know what that is). In the past, I used to wake up numerous times during the night (I wonder if it's a certain time in the sleep cycle every time, would make sense), heart racing then body shaking. I haven't worked this past year, *incredibly low* stress level, and I haven't been having the nocturnal shaking episodes; simply wake up and have trouble falling back asleep (maybe brain is "active" but due to lack of stress, not "triggering"?). When I had the sleep study a few months ago where I kept jerking before falling asleep, they noted that I woke up numerous times during the night, as well. If you extend this a bit, it may be logical to wonder if my seizures weren't caused by the same unknown mechanism. On depakote, my nocturnal grand mal seizures happened before my period, numerous times a night (dh would wake me up after one; I'd fall back asleep and an hour later repeat, etc). Back up a month more, before I was on any AED, and I had status epilepticus in the middle of the night before my period.
Sorry if this is too rambling to make sense. I guess I'm wondering what other neuros have to say about myoclonus in others here. Is it a concern? I am POSITIVE that my jerks are not normal. You ask my dh and he would say the same thing. There's jerks, and then there's JERKS. Any advice, btdt, and input would be appreciated!!!