What are these episodes??

[masterjen]

As many as 4 or 5 times per night I am wakened by my body doing what feels like every muscle in my body suddenly stiffening or going into a spasm. My arms usually come up above my head (not in the air but still on the bed). If I wake up enough I can tell that I am even holding my jaw tight. The muscles are so tight that I hear that vibration in my ears that one gets when they consciously squeeze their jaw muscles tight. They wake me up out of sleep, but I think they only last a matter of seconds. About half the time I feel like I need to urinate immediately after (which I guess makes sense if the muscles have been so tensed up) but because I fall asleep so quickly after the stiffening I seldom do get up to the bathroom (and no accidents, thankfully).
Up until a month ago I was on tegretol, keppra and vimpat for nocturnal seizures (frontal lobe motor), and I had these "stiffening" events about once per week, but after a VEEG admission was told to try vimpat monotherapy. The vimpat alone keeps the more typical nocturnal seizures down to once or twice per week but these "stiffening" ones are much more frequent now so presumably either the tegretol or keppra was controlling them and the vimpat is not. I also have been taking high absorbency 300 mg magnesium for a few years.
I have a consult in a few weeks, but at this point would like to know if anyone else has had these stiffening events, what has controlled them and what they may be. When I looked it up I came up with infantile spasms . . . don't think so lol.

 

[N Sperlo]

Masterjen,

I had a lot of movement issues in my sleep before Vimpat. Punching, kicking, and yes, some stiffening. Some nights, I would be in a complete V before my wife tried to wake me up.

My doc assumed that since I had some of these while hooked up for an EEG and they did not register that they were likely (in his words) an aura.

May be similar?

 

[masterjen]

Good thought - hadn't considered them to be an aura. Auras that I've known to be auras have typically involved intense tingling only.

 

[kirsten]

What position does your body take when it happens? There's a very distinctive position that happens with tonic seizures, which I get. It feels exactly as though about 100 volts is going through my whole body, and my back arches off the bed from the bottom of my spine to the top of my head.

 

[masterjen]

- Kirsten - They typically happen in the second half of the night, at which point I am generally sleeping on my left side. When the stiffening attack happens it's like my back (and neck) muscles retract and pull me over onto my back and at the same time my legs stiffen out often with my thighs and knees slightly off the bed while my arms generally stiffen and "stretch" up above my head on the bed. The odd time my arms have just stiffened down by my side. If I am already on my back I have felt more of my body weight on my shoulders than the rest of my torso. And what you say about it feeling like a sudden jolt is exactly the case with me. I have no warning whatsoever; the onset is so sudden.
Is this something like what you have with your tonic seizures, Kirsten? Have you ever had these during the day or only at night? Mine are nocturnal, but in the early stages of tapering back onto the vimpat (I was off all med. for a 2 week VEEG) I had two in the day - freaked me out, as I hadn't had that before. I read your profile, but not sure how current it is: any medication you've since found that controls - or reduces - them? Any specific triggers you have noticed? Do you also have (other) frontal lobe seizures, or temporal only as your profile states? Anything you feel comfortable sharing would be helpful.

 

[kirsten]

Yes, that's the same thing that happens to me. I usually find myself on my back when it happens and I'm a side sleeper so it may be that I'm also being pulled over onto my back. I've had some on my side but not too often. My arms are always straight down my side--they don't pull up but you'll see that pulling the arms up that way is a classic part of tonics. Here is a pic of the tonic position. Excuse the silly pics--it's the least scary looking picture I could find. They show positions for the tonic phase and the clonic phase.
http://dxline.info/diseases/generalized-tonic-clonic-seizure

I'm never conscious at any point during a tonic clonic and nobody's ever explained what happens other than that I stand up first and shout out. There is never a warning for these tonics for me either, and they are very sudden and powerful. I said 100 volts because I've had a 220 volt shock before and I know exactly what it feels like. So this is about half of that.

None of my anticonvulsants have controlled the tonics. I didn't know to specify them to my doctors because I used to think they were myoclonics before, so that could be the reason. My seizures do generalise--I believe they have to to have a tonic clonic, right? I'm not too well versed about these things. I've not had anyone specify the frontal lobe with me before, only the temporal and occipital. I suspect, though, that I may have a new seizure focus on top of the one I had before because I had very bad encephalopathy in 2012 and never got back to my old self again. I think the tonics (without the clonics) only started after that. I haven't had an ambulatory EEG since '12, so I don't know.

As far as when I have my seizures, I'm really odd. I will go nocturnal with the tonic clonics sometimes and then suddenly have them during the day. I always have partials and absences during the day and always have done. The tonics do happen during the day but far more often at night, although not necessarily after I'm asleep. I haven't picked up anything that makes them better or worse but I haven't kept a diary and am not too good on the memory. I'm currently on 300mg phenytoin, titrating from 1200mg neurontin, and on 600mg epilim. I had low phenytoin levels but it seems to me (without having a doctor's opinion) that the neurontin has improved the phenytoin levels which seems to have given me a respite from the tonics for a couple of weeks. We'll see how that pans out.