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!!!

Hi Friedbrain,

I'm sorry to hear that you are having these wicked sz. and jerks. I had the myoclonic sz. for awhile each day when I woke up or when I went to bed the sz. started but then my Epi put me on vimpat 200 mg. a day and the sz. stopped. I can't help but wonder if a lot of your sz. aren't related to hormonal changes it was wicked for me each month but things got better after I went through my change. Start taking Vitamin B12 1000 mcg. once a day and it's up to you but I would get a 2nd opinion and be sure to see an Epileptologist at an Epilepsy Center instead of seeing a neuro. You should ask them to do a VEEG (video e.e.g.) on you and then the Dr. will be able to see what is really going on. You may be also having what is called audio sz. and that's where certain sounds can trigger sz. for a person. Take note if you hear a high or low pitch sound before any sz. happens, Also if you aren't allergic to peanuts get some natural progesterone cream and put it on your skin this will help reduce your sz. during your monthly cycle. I had to put it on 5 days before my period and it reduced my sz. a lot. I wish you the best of luck and May God Bless You!

Sue