seizures upon falling asleep- not normal for me, but happen sometimes

[appsandsuch]

In advance; sorry I write so much before I get to the point! I tend to over-tell stories when it comes to medical stuff, as I'm afraid of leaving out important details, but you seem like a forgiving bunch

So I had a good streak going of no true seizures for a little over a month, which is great, considering that previously they were happening ever couple of days, multiple times within those days, with a TON of anxiety issues that have all but disappeared. I've had some mild activity...hard to describe...not really auras, just feeling off, but a solid month plus of no seizures.

About a month ago, I had a rough experience with Zonegran: when I increased it to 150 mg per day from 100, I had 4 major seizures in two days with no warning whatsoever, which I'm positive was the drug, as I ALWAYS have warnings. As soon as I decreased the medicine, the problems went away. That was the last time I had major issues. About 2 1/2 weeks ago, I started out on Vimpat. I'm still on too low of a dose for it to be doing much (75 mg/day) but I think, in my head (pardon the expression,) I've already convinced myself it's doing/will be shortly doing wonders. At the very least, I've felt no side effects from it.

I was just thinking yesterday about how I was feeling so much better in recent weeks, especially in the past few days, and how it's been so long without problems. I even ran 8 miles without feeling odd (sometimes when I'm running, I start feeling a little funny,) so my boyfriend and I went grocery shopping last night at Stop n' Shop. When my threshold is low, larger stores like this can set me off because of their lights, but I usually have no problem when I'm feeling normal.

However, after 10-15 minutes in the store, I had an aura. I should have left immediately, but I wanted to finish shopping and thought my threshold was high enough that I'd be okay. About two minutes later, I had a simple partial- mine are usually pretty scary- I get locked in my head, can't see straight, its a broken record set on super fast, and my head moves all the way to the right side until it can't look over any more. (It's the being stuck in my head part that I mind...not being able to get out, to communicate.) Anyway, in retrospect, it was probably SLIGHTLY less severe that it normally is...not sure if that's because i knew my boyfriend was there to protect me, or if the medication is helping.

Recovery time was less than it has been in recent seizures, though i did take a small amount of Ativan about 30 minutes afterwards to help with that, in case there were more coming.

So here comes the reason I'm posting all this. When I was having a ton of seizures, sometimes I'd have problems where, on affected days, I'd also have them right as I was falling asleep. I could control these easily as long as I woke up. It's been proven through EEGs that I do have small seizures when I close my eyes, fall asleep, etc., but that they're usually so small that I barely notice them. So I suspect they always are happening, I just can't feel them. Was it that last night these seizures at night were more severe because of my earlier seizure? It's incredibly troubling because I was exhausted and just wanted to go to sleep. I'm sure I don't have to tell you all, it's a scary feeling- relaxing completely and going into seizure. Makes you never want to completely relax!

Is that common? Has anyone else experienced this falling asleep seizure when it's not something that's a regular part of your seizure catalogue? During times like this, I have to camp out on the couch, watching tv to distract my mind, and just sort of fall asleep watching television, otherwise, I sit awake in bed, freaking out.

Also if you've had experiences with Vimpat, or with fluorescent lighting, feel free to share those here, I'm anxious to read about them.

Thanks for reading!
Sarah

 

[Nakamova]

I think the time when you are tapering on or off meds can be extremely unpredictable seizure-wise. The meds all work in different ways, and even small sub-therapeutic doses can affect the body. Even at the tiniest doses they are potent because they have to cross the blood-brain barrier. So my guess is that a combination of going on/off the Zonegran and increasing the Vimpat has thrown things out of balance. Even if you're feeling great, you might want to ease up on things like 8-mile runs until you get a handle on the meds are affecting you. Keeping a journal can help too, so you have a sense of what may be triggering things.

A lot of people here have issues with fluorescent lighting. There are tinted glasses that you can get that are supposed to help -- maybe you could give them a try.

 

[matchu]

I have this problem as well. When I was having them frequently it was always when I was falling asleep, I would start jerking, almost out of bed! I have kicked the dog a few times. poor little mojo

 

[Billyboyboo]

This has happened to me, I bit down on the end of my tongue while drifting off to sleep. I woke up fast, sometimes I tremor in my sleep, I chill...

Billy. :twocents:

 

[Billyboyboo]

Also I just caught you're tapering off a med, I was tapering my Klonopin down, and yes I had a few seizures, more like long Auras.

Billy.

 

[Abynorml]

Hi folks haven't been here in forever, Ive had an ok year, never had any conclusive evidence of if i truly have a seizure disorder, currently looking for a new neurologist, anyways its weird but I think winter effects me some how, I notice this time of year I get a lot of the twitchy shakey myoclonic like jerks while trying to drift off to sleep, along with really vivid visual images, and one night after having 3 beers, I woke up in a wet bed, which was really embarassing as I was staying at a motel, maybe I was just to relaxed or drunk, though I do know its possible I had an episode in my sleep. So Im curious does the seasons effects any of you? Its also possible its just stress from my job of 5 years winding down, my car getting rear-ended, and the holidays, I know my tremors have been worse lately too, and i havent been taking my primidone for them everynight because Im afraid it will interact badly with the cold medicine Im taking this week for a chest cold. Wow now that I think of it theres all kinds of things that are probably effecting my life right now.

 

[Nakamova]

Hey Abynorml, welcome back.

As you say, there are a bunch o' winter stressors that could be exacerbating seizures -- infections/colds, emotional stress (family issues, memories), physical stress (dealing with cold, snow shoveling), less sunlight (affects Vitamin D/calcium intake and mood), and fatigue from dealing with all of the preceding stuff.

If you keep a seizure journal that can sometimes help to figure out what triggers the seizures or makes them worse. You might want to try something like the Delta Sleep System, which is a set of CDs you listen to while falling asleep. They work by relaxing you and eliciting the "good" delta brainwaves. That might cut down on the myoclonics.

 

[tam bam]

Hi Abynormal,

Yes, the cold can effect you. I suspect the cold effects me as well. I had a bad bout yesterday. There was a cold snap and I had some really bad seizures for no apparent reason that I can find other than that. I have been noticing a pattern in my journal around cold snaps as well. I am pretty sure they are related. I get really bad abdominal seizures with the cold snap ones. It stinks. Ruined New Years Day for me. Oh well. At least today is better. :woot:

tam bam