Ongoing Neuro Episodes At Night

[mkoven]

I've posted on here before about what I thought might be seizures occurring at night between being awake and nodding off.

I don't know what they are, and am happy for them not to be seizures, but whatever they are, I'm still having them regularly, worse before my period.

Usually they are like this in sequence-- strange painful tingling in my legs, throbbing rush to my head , rising sensation in my stomach. Freuqnetly there is a brief flash of light in one of my eyes, even if it's closed. I generally feel a little floaty. And then something will jerk-- an arm, a leg, sometimes both legs. And the cycle usually continues on a given night- so I'll have the jerking, start nodding off again, and then it all repeats. Often, the flash of light then turns into these white shapes that slowly expand, forming in my eyes (behind closed eyes).

This whole thing usually wakes me up, as being awke interrupts it. I'll get the occasional limb jerk while wide awake, but not this whole creepy sequence. At night the only thing to get it to stop is to give up and get up or take some klonopin. I"m less stressed about it than I was initially, as it hasn't progressed to feeling paralyzed and with protracted, uncontrolled leg movement, since that time way back when. for the most part, the limb jerking is hard and fast and then stops. But I'd really like to know what it is, what's causing it, and then how to prevent it!

My regular eeg and 24hour eeg were normal, though I was told that doesn't necessarily exclude something seizure-like. My ans doc is sending me to her favorite neurologist to brainstorm what these are. She said she's heard other people with ans problems report similar things. Anyone here recognize these? I"m very tired, as I spent the second part of the night battling this.

[sandymbme]

I don't know what it could be, but I have had similar experiences. I have had some abnorml eeg results, but since they improved after starting neurontin the general consensus of my docs seems to be that they can consider the problem soved. Sorry I can't shed any light but at least you are not alone!

[mkoven]

Thanks! Did they ever give a name to what it was?

(BTW, I don't tolerate neurontin. I'm on a low-dose of keppra for migraines-- which I hate. I don't think it helps migraines or these other weird symptoms. All it does is make my mood feel flat-- and I have no particular need for mood flattening. but till I get a further work up of these symptoms, my migraine doctor doesn't want me to come off the rest of the keppra.)

[mkoven]

After a google search, I came across "sensory sleep starts." Maybe this is what I'm having? Instead of just a regular hypnic jerk, my jerking is preceded by strange tingling, flashes of light, etc.

If that's what it is, it's annoying, but I can deal.

I'm seeing a neuro for a further workup on these on 6/3.