Hey i think i'm getting somewhere...

[Loopy Lou]

I was talking to my nurse the other day (all you UK people - i think everyone should have one - she's a godsend!) about how things are going with the keppra and stuff, and i realised that for a couple of months, i've had no mystery bruises, chewed up cheeks/tongue or insane needs to snooze during the day! Also, the feeling of being unsteady on my feet has reduced a lot. I was getting REALLY sick of falling over/wobbling and being called a drunk fft:

Well, these last two days haven't been good, but apart from that, it's improved a lot.

I don't know how i lived with this for so long before getting a diagnosis, and never thought about there being something wrong until i had the TCs when awake. I still getting the occasional simple partial and complex, but nothing more than that.

The nurse got onto the neuro for me, and said that he's suggesting that i try to get off the Lamictal entirely and solely be on the Keppra.

I'm sooooo glad i didn't get the kepprage - i'm a fiery enough person as it is :banana:

So yeah - still not perfect, but so much better

 

[Endless]

Loopy Lou,

This is such great news! I'm so glad things are better.

I use mystery bruises as a measure of seizure control, too. Whether it's just the luck of the draw or the meds are working, I haven't had a mystery bruise in many months.

I tried to explain this to my doc, who said, "that doesn't mean anything. my wife gets bruises all the time and she doesn't know where she got them." He doesn't get it. There are occasional little bruises, and then there's a hip or leg covered in them, or a really BIG deep one that couldn't have possibly happened without you knowing.

For complex partials I insist on a piece of objective evidence to make sure they happened, like a witness, I come to somewhere completely different, something is broken in a big way and I don't remember breaking it, etc. Other indicators may have other alternative explanations, like that weird after-seizure feeling, losing my place in a book, or not hearing the phone ring or mising someone at the door. Still, sometimes I wonder if something has happened that I've missed.

What method or indicators do you use to know when you've had a seizure with altered conciousness? I'd love to increase my certainty.

 

[Loopy Lou]

When someone shouts "get out of the road you idiot!" is normally a good one

Had an absence whilst watching the rugby. One second they're in a scrum, and the next thing is that the players are re-arranged all round the field, someone's scored a penalty, and the time clock has gone forward by about a minute. Oh yeah, and playing playstation one second and then realising that all my characters are dead and it's on the "game over" screen the next.

Damn, you never realise what can happen in a whole minute. I've read the same page in a book about 3-4 times before i realised that i hadn't advanced at all.

Probably most of the time i don't even notice. Simple partials (i think that these ones are simples) are stuff like smacking my lips, involuntary throwing stuff that happens to be in my hand etc. I know i'm doing it, but can't prevent it.

Then there's the usual stuff like wandering around having not realised i've even left my seat, looking for something but not knowing what. Mostly stuff that's passed off as me being "dopey".

 

[Endless]

Simple partials I actually try to ignore.

I'm having a little trouble telling if my mind just wandered, or if I really had a complex partial again. Like when I was playing backgammon online, was getting impatient for the other person to take their turn, then realized it was really my turn and the other person had completely left the backgammon e-room. No telling how long they'd been gone (a nanosecond?), and if I really went anyplace mentally, either.

Yeah, I've done that thing with reading, too. TV also.

One of my favorites is when I leave one room with something in my hand, walk what I think is directly into another room, and when I get there that thing isn't in my hand. Or anywhere else that I can find for that matter. And I don't exactly remember walking there. My mom says to me, "oh honey, I misplace things all the time." Uh, no, mom. This isn't that.

 

[Loopy Lou]

One of my favorites is when I leave one room with something in my hand, walk what I think is directly into another room, and when I get there that thing isn't in my hand. Or anywhere else that I can find for that matter. And I don't exactly remember walking there. My mom says to me, "oh honey, I misplace things all the time." Uh, no, mom. This isn't that.

Lol i do that! My boss said to me the other day "oh i do stuff like that all the time!"

I said that the difference is that when someone says to her "what the hell are you doing" she'll stop, go "oh silly me, i have no idea" whereas i'd just carry on blundering around haha.

Of course, there's also just me being confused sometimes, in which case i do reply to the person.

 

[Endless]

Wow, you can talk to your boss about stuff like this? You are a lucky person!

 

[Loopy Lou]

Nah, not really. Actually, we rarely see eye to eye, she's very stubborn, obstinate and unfeeling, and has no concept of the range of human emotions lol.

She thinks i'm being "stupid" purposefully :roflmao:

 

[Bernard]

That's great to hear. Are you maintaining a diary/journal to keep track of these things?

 

[Meetz1064]

Cool beans! I'm glad you're making progress! The whole idea of being on just ONE med is such a WONDERFUL THING..........WOOOOOOHOOOOOOOO!!!!!!:woot::woot::banana::banana:

 

[Loopy Lou]

Bernard - i'm a little ashamed to say that i've always been really rubbish at keeping a log of things. I do keep trying, so i have some stuff on record, but it's pretty sporadic at best. If i'm not at work i'm either sleeping or at the gym *dies*

Meetz - yeah i'm pretty happy about that. I'm currently on 1000mg keppra and 300 lamictal, but in the next month that will go to 125 lamictal and 1500 keppra, and then i'm not entirely sure after that. I only asked about the first month and wrote it in my diary when i'm supposed to change my doses.

You should see my diary - it's full of work stuff, shifts and stuff, and even really stupid stuff that i've put in there to remind myself of, for example it's my bday next week! When someone asked me how old i will be, i couldn't remember if i was going to be 23, 24 or 25! I'll be 24 lol - must have had a bit of a "brain fart" when they were asking me :banana: