Forgetting and clustering!

[RunningGirl85]

I guess this is a mostly positive post, but just something I've thought about. Are there some days/weeks that you forget you have epilepsy? Like, you forget what it feels like (besides the whole restrictions thing) ? Most of my partial seizures cluster in a day or two, but the rest of the week I feel absolutely nothing out of the ordinary. It's good and bad. Good, because, well... I'm not having seizures, bad because sometimes it's even more frustrating that I can't drive and have to take my pills when I feel fine.

And then there's the clustering thing... Is that normal? My neurologist does NOT like to hear I'm still having 3-5 partial seizures a week. To me that is pretty normal and not a big deal, as I am still perfectly conscious. I try to explain that they are usually short, and they are usually in a day or two. Sometimes I don't even know how many I have, or how many are actually partial seizures and how many are just mind-games (but not epileptic ones, lol). Last night was a good example. All week I felt fine - no real activity, maybe a deja vu spell here and there, but they are so short I don't really think about them. Last night was one after the other. I felt okay, just weird. There were a couple of times I was worried, and I did start to get my "fuzzy head" as I can best explain it. Like I'm not 100% there. Or maybe that's not a good way of describing it. My senses are just different (even now they kinda are, but my head feels normal, lol). I wanted to take a hot bath but decided I shouldn't. Today I feel perfectly normal (for now... I usually don't experience anything first thing in the morning).

ANYWAY, just curious how many other people experience this stuff? I guess maybe episodes like last night probably weren't good for me, but then the next day I'm okay. I've also noticed an increase when I watch scary/suspenseful movies (maybe the suspense)?

 

[Dignan]

I used to get auras that wouldn't always lead to a fully generalized seizure. I would go to sleep and wake up feeling fine. Still, the doc didn't like that because those are still partial seizures.

My aura was just an extreme feeling of light headedness, where I couldn't keep up in a conversation. The only thing that helped was going to sleep. And, like you, I never had a ton of full seizures (7 in the past 20 years).

That said 3 - 5 a week sounds like alot, so my guess is your doc will likely want to see that dealt with, most likely with more meds or by switching to a different drug. Hopefully, the doc is worth a damn and will help you identify anything that may be causing this rise in auras or if any specific triggers can be identified.

Good luck.

 

[arnie]

Wow, RunningGirl, what you are describing is almost exactly what I experience. I've tried to describe it to my family by saying I think I have a continuum of seizures. On the one end are the ones they see, where I get pale or flushed, smack my lips, swallow, kind of zone out for a few seconds, and which I always mark down on the calendar to keep track of them. Then there are the ones that just make me feel a little funny, maybe I gasp, or swallow, or have a really small odd feeling. Those I may or may not write down. then there are the times when I have a very clear memory flashback, which I don't really count as a sz, but it might be. I asked my neuro about that and he said that if I had a sensitive enough monitor that I wore all the time there would be lots of little abnormal discharges throughout the day, some so small I don't even notice them.
My szs also come in clusters. There are days and weeks when I will have a lot, and then maybe a week or two where I have none to write down.
As for being aware of my epilepsy, yes, I think there is always a small awareness of it in the back of my mind. It doesn't really interfere with anything unless I've had a series of szs and am really wiped out from them. I also have to be careful not to do things like try to fish pieces of popcorn out of my teeth with my tongue, cuz my wife thinks I'm having a sz when I do that!
As for getting them more under control, I have pretty much decided that I will have 200-300 partial szs per year and that is about as good of control as I am going to get. Meds have too many possible and actual side-effects. I'm on Lamictal and Trileptal now. Cheers! Take care of yourself!

 

[RunningGirl85]

My aura was just an extreme feeling of light headedness, where I couldn't keep up in a conversation. The only thing that helped was going to sleep. And, like you, I never had a ton of full seizures (7 in the past 20 years).


Good luck.

I get that too... it's what I got before my two T/C seizures (well, four I guess - I just found out that I had two the day I had my last one - I ran into the person who saw me have the). Usually it builds up for awhile. I don't sleep, but I have to lie down until the feeling passes, but if it's gone that far, it usually takes awhile.

 

[RunningGirl85]

Wow, RunningGirl, what you are describing is almost exactly what I experience. I've tried to describe it to my family by saying I think I have a continuum of seizures. On the one end are the ones they see, where I get pale or flushed, smack my lips, swallow, kind of zone out for a few seconds, and which I always mark down on the calendar to keep track of them. Then there are the ones that just make me feel a little funny, maybe I gasp, or swallow, or have a really small odd feeling. Those I may or may not write down. then there are the times when I have a very clear memory flashback, which I don't really count as a sz, but it might be. I asked my neuro about that and he said that if I had a sensitive enough monitor that I wore all the time there would be lots of little abnormal discharges throughout the day, some so small I don't even notice them.
My szs also come in clusters. There are days and weeks when I will have a lot, and then maybe a week or two where I have none to write down.
As for being aware of my epilepsy, yes, I think there is always a small awareness of it in the back of my mind. It doesn't really interfere with anything unless I've had a series of szs and am really wiped out from them. I also have to be careful not to do things like try to fish pieces of popcorn out of my teeth with my tongue, cuz my wife thinks I'm having a sz when I do that!As for getting them more under control, I have pretty much decided that I will have 200-300 partial szs per year and that is about as good of control as I am going to get. Meds have too many possible and actual side-effects. I'm on Lamictal and Trileptal now. Cheers! Take care of yourself!

Yeah, mine are just mostly the odd feelings, and some of them are so short I don't write them down. Sometimes I even think I'm imagining things if I go back to feeling normal so quickly. I did explain that to my neurologist to try to ease his mind, but it didn't really work, lol. Those don't worry me much, it's the ones that leave me feeling a bit nauseous with the disassociation/almost hallucination feelings. And yeah, vivid flashbacks are pretty common for me. If some of it is anxiety (he thinks it might be - and maybe he's right), I just switched medications for that, so we'll see what happens with that. And my video EEG coming up in a couple of weeks. I can't decide if I want the results to come back good so I can drive, or I want them to come back abnormal because I'm still having partials to get it taken care of... but at this point I don't mind the side effects of my medications, and I don't mind the partials, so I'd rather just not change things up.