Edgy feelings, auras, and seizures...

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jemsister

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I have been wondering this for a while. I have simple partial seizures that develop into complex partials, and my seizures generally last around 30 seconds. Me and my doctor sometimes call the simple partial seizures auras just because it's quicker.

But here's my question. There are days where I wake up and I just feel off. I feel really on edge, but it's hard to describe. Kind of buzzed in the head, and crawly in the shoulders, and it comes in tiny little bursts, but over and over again, in a way where it feels almost constant. But it's super faint. It's only just strong enough for me to be able to feel that it's there. For me, this is an indication that a bad day might be coming. A bad day is when I have clusters of simple partial seizures all day long--20 seizures in a day sometimes. Thankfully, this is not common, but on days like this I usually just go to bed.

But when I get that edgy feeling, I know I am on the brink, and it will take very little to push me over the cliff. I will almost certainly have at least one or two seizures on a day where I wake up like that, but I will feel like that most or all of the day.

So my question is, is that edgy feeling also seizure activity? At what point does a feeling go from just a feeling to a seizure?

I was feeling this way yesterday, mildly so, but my meds and personal caution were enough to keep things at bay. But I had a seizure on Wednesday, and Hubby says I had a seizure Wednesday night, and then with how I felt yesterday... anyway, it doesn't seem to bode well to me, especially since this is happening *after* adding the Vimpat a week ago, on top of the other three I'm taking.
 
Yes, Hubby sometimes wakes up. He says lately a couple times a week he wakes up to me seizing, but there are times when I wake up exhausted and I just know I have been seizing at night, even though he hasn't witnessed it. I have partial seizures and mostly get really tense and rigid rather than moving around, so they are not always disruptive unless I talk (I talk sometimes). He says when he wakes up to it, I am half sitting up in bed and holding my arms out really rigid, gritting my teeth, like my whole body is clenched up. The other night when I had one, he said I was also saying, "I'm having... I'm having..." I guess I was trying to tell him I was having a seizure? =P I usually have no memory of it, but sometimes they will wake me up. But like I said, I can always tell because I wake up just exhausted, even though I have supposedly been sleeping all night.

I just realized, above when I said "seizures at night" in my OP, what I meant was in the middle of the night while asleep.
 
I get this feeling all the time! Im so glad Im not the only one :) does it feel kind of tingly down your neck and on the back of you head? The only thing i find helps is sleeping :-\
 
I don't know if this makes sense, but you know the sound that a TV or speaker makes when you turn it on? That faint sort of buzzy sound? That's what it feels like. I don't hear the sound, but I feel it in my head and neck. Does that make sense? It doesn't feel tingly in a nerve way, but more in a state of being way.
 
Yeah i know exactly what you mean :) do you find anything that makes it worse? like for me it's not getting enough sleep or standing under a flickery light... i don't know why the light does :L
 
I felt that way a lot when I was on dilantin. It turned out that it was the dilantin that was causing the feeling when my dosage was too high. But I still get that feeling sometimes now that I'm on keppra, but only when I'm really tired.
 
I find that not getting enough sleep for several night in a row will usually do it, but sometimes it seems random. Other times it's constant, usually when my dose is too low. I have always had this symptom, regardless of medication. There were a couple times, though, where my meds were too high and I found that the feeling was more constant, and things were more volatile in general.
 
Hi,

I have atypical absence seizures (about 1-4 a day), and I have this buzz or anxiety happening to me a lot lately, like I'm going to have a bad seizure, or cluster of them. I have a stressful job and I probably get less sleep than I should (6-7 hours a night), so that could definitely bring those on for me. Like you just said, my meds could very well be too high (currently taking trileptal and onfi). I hope you find a way to control it, because I'm still dealing with it, and it's quite frustrating going all day expecting a seizure to happen all the time.
 
Sorry to hear you're dealing with it too. Not a fun feeling. I've been having it more and more lately, and more breakthroughs. I'm on four AEDs, but they are all pretty low dose (Trileptal 300 mgs/am, 150 mgs/afternoon, 300 mgs/pm; Lamictal 200 mgs 2x/day; Dilantin 200 mgs am/100 mgs pm; Vimpat 150 mgs 2x/day and increasing). I'm hoping once they sort out all these doses things will level out for me. I'm ultimately supposed to only be taking 2, but it all depends on how successful the remaining drugs are.

I hope they are able to get things squared away for you! Clusters are horrible. =( Are you talking to your doc about it?
 
Wow you're on a lot of meds! I've been in contact with my neurologist's nurses about the symptoms and they are weaning me down to about 15 mg of onfi in the morning and evening. For some reason Trileptal has helped control them to a certain extent, but it's always frustrating to not be completely controlled. I recently heard about SUDEP and it freaked me about so that could also be causing my similar symptoms
 
The four meds have been a temporary fix to get me off of Trileptal. It's the one pill that has worked pretty well for me, but I can't take it anymore because it's siphoning sodium out of my body. So first they added one, then two, and now a third, just to successfully remove the Tri. After we finally get that gone, then we'll assess what to do with the other three meds (the current plan is to keep the Vimpat and Lamictal, and drop the Dilantin). It's all been pretty up in the air lately. But anyway, yeah, hence the low doses of each--they've only started adding Vimpat two weeks ago, and I've only been on Dilantin for a month. Three months on Lamictal. I think I might be struggling to kick Trileptal because I was on it for so long--almost a decade--so my body is freaking out, saying, "Aaah, what's happening?" LOL!

I hope the medication adjustments are helpful. It's a pain when they start messing around with that stuff. Do they think they will increase the Trileptal?

Stress does seem to push one closer to the edge of the seizure threshold. I always think of it as a cliff. The stress pushes you closer to the edge, and then add one more factor and off you go. Although on bad cluster days, it feels more like the ground just opens up beneath you altogether.
 
You should check with your doctor. A lot of those symptoms could be indicative of an anxiety disorder rather than aura and anxiety can trigger a seizure.

When you have one of these days, you create a cycle of anxiety and seizures. The anxiety triggers a seizure, which makes you more anxious and more likely to seize again. The cycle continues and that's how you get 20/day. Perhaps that could explain one of those bad days.
 
Well, I do get anxiety, and this is definitely different. It's the feeling I get right before an SP, only the SP doesn't happen. I do need to have my anxiety addressed though. It's mostly social anxiety that I deal with. I am very shy, so I can get stressed and have stomachaches when I'm in social situations with people I don't know. Usually when I get the edgy days, I get them from sun up to sun down--it starts before I even get out of bed most times.
 
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