3-day EEG in progress, and some other random things.

[RunningGirl85]

Well, I started my three-day EEG yesterday. I dunno if it's because I knew this thing was on my head, but I did not sleep well at all! Anyway, super tired today. Did anyone else get bad headaches when they did this? I had an AWFUL headache yesterday. Like, I could hardly function headache. I think that only happened after my grand mal seizures, and then I was mostly passed out, so I don't remember much of them. Today I guess I still have a bit of a headache, but it's nothing to impact me (I was in the store yesterday and was in so much pain). Just curious... I was thinking maybe having these things on my head was impacting it, but it doesn't really make sense...

Anyway, I had an interesting conversation with the EEG tech. I know she's not a doctor, but she's been doing this for over ten years, and her daughter has epilepsy, so she knows a decent bit about the whole process. I asked her about the abnormal EEGs when you feel no seizure activity, and she explained it pretty well, and it kind of explained some other random stuff I've noticed, but thought maybe I was over thinking.

What she said was that even if you feel normal, when the electrical (damn can't remember the name) tries to pass through the synapse, and something is wrong, it basically backfires. Often times you won't show any noticeable symptoms, but you might have a slight twitch somewhere. She used the eye as an example. Nothing you would really pay attention to, but something that's there. I've been getting random little finger twitches/toe twitches/FEELING like I'm getting leg twitches (basically I can't see anything move, but it feels weird). Anywho, it was interesting, because I thought maybe I was imagining these things. Sometimes I still think it's the power of suggestion, but it does make sense...

In other news, I am getting REALLY frustrated. Sometimes I guess it doesn't quite hit me that this is a lifetime problem. I keep thinking "Oh, mine isn't bad, I can drive soon and live like anyone else" (I still think I can do what most people do anyway), but then the driving keeps getting kicked back, I'm still having partials, despite being on the right levels of medication (or I think I am, this is what my neurologist wants to confirm). So now I'm thinking, maybe just because I'm not losing consciousness doesn't mean that maybe I have it as good as I thought. I guess because I went over two years without anything after my first seizure. Anyway, trying to get a ride back from the airport, which is an hour away, after I visit my boyfriend. I'm getting SO frustrated because everyone here is going on leave, so I can't find anyone. I'd have to pay 120 dollars for a taxi BOTH ways if I can't get a ride And then I've realized, damn, if I can't drive, like... EVER, there goes the way of life I was used to. I'm getting used to not driving now, but what happens when I leave this place where everyone knows my situation, and I can hardly drive places I need to get?

That's another thing, I have started doing some volunteering type work at the clinic across the street (not really volunteering, but an actual job) so I'm not just sitting around all day in transition. This is my first time trying to work since all of this happened. I was struggling SO hard to pay attention and take everything in. I suppose it's probably medication, or maybe the fact that the epilepsy got so much worse after that seizure that got me out of AFghanistan. I don't know, but now I'm thinking... how can I function when I can't even focus? GAH.

Okay, done now

 

[Nakamova]

Congrats for volunteering -- don't worry so much about how well you're doing, and give yourself time to get up to speed.

I hope the 3-day EEG yields some helpful info. I know I often sleep poorly and get "stress headaches" in anticipation of things that carry emotional weight, even if it's something positive. I hope you feel better soon.

Have you tried Craigslist for a ride-share? Hope you are able work something out.

 

[xxspellsxx]

I'm having the ambulatory Eeg right now too ! Get the silly thing off tomorrow. My head is itchy, but no head aches thank goodness! Be interesting to see what this shows, I anything! I have had no seizures only a few moments of twitch in and staring.
Hope your doing OK!

 

[RunningGirl85]

I'm having the ambulatory Eeg right now too ! Get the silly thing off tomorrow. My head is itchy, but no head aches thank goodness! Be interesting to see what this shows, I anything! I have had no seizures only a few moments of twitch in and staring.
Hope your doing OK!

OMG, my head itches SOOO bad today - thank goodness I get this thing off tomorrow! I also have had ZERO seizures (which is weird) that I'm aware of, though I have been having some dizziness here and there. On the other hand, yeah... light twitchiness. I guess I wasn't imagining things... When I saw my psychiatrist today she noticed that my cheek near my mouth was twitching. I didn't even realize it... Though other things I thought maybe I was just paying too much attention. Not the mouth. I'm hoping this one shows something... I'd hate for my neurologist to be like "oh, so those spells you were getting WERE just anxiety" (I knew they weren't). Though if it comes back normal, I may get cleared to drive. So it's kind of a catch 22.

 

[xxspellsxx]

It's a weird one isn't it I didn't have a seizure, well nt a tonic clonoc but had a few partial ones. I don't get my results till mid January so we shall see getting the glue out is interesting! I look like I have a server case of dandruff!

 

[CQ:)]

RunningGirl,
I am guessing you must almost be at the end of your EEG. I hope you were able to get some sort of results.
I've never had an ambulatory EEG so I was wondering when you have an ambulatory EEG do you have your medications reduced or do things to try to trigger a seizure (EG - sleep deprive)?

Well, I started my three-day EEG yesterday. I dunno if it's because I knew this thing was on my head, but I did not sleep well at all!

When I had my Video EEG I was in a recliner chair the whole time & I could push it out to the recline position when I wanted to sleep.
I was sleep depriving myself to try to bring on a complex seizure so only really got a couple hours sleep each night.
It was hard to sleep with the electrodes on my head & the techs asked me to try not to press the part of my head on the pillow where the electrodes were as it interfered with the EEG.
When I did fall asleep during the night I was woken up when the nurses were doing their midnight rounds.
Also my Mum who was in with me was sleeping on a bed next to my chair & she snores :roflmao:.

OMG, my head itches SOOO bad today - thank goodness I get this thing off tomorrow!

I know what you mean, the itchiness is really annoying lol.

 

[CQ:)]

It's a weird one isn't it I didn't have a seizure, well not a tonic clonic but had a few partial ones. I don't get my results till mid January so we shall see

Spells,
I hope the partial seizures will still come up in the results.
When I had my Video EEG we were hoping to try to trigger a complex partial but the best I could manage was a couple of auras in the middle of the night. When I let the techs & drs know about the auras I was able to tell them a rough time line. I think the EEG machine did pick up something at the times & when they looked back at the Video they saw what I did.

getting the glue out is interesting! I look like I have a server case of dandruff!

I hate getting that glue out of my hair after an EEG. When the EEG is over all you want to do is jump in the shower & try to get as much of the glue out as you can. From memory I think it took me a couple of days to get all teh glue out after my Video EEG.

 

[RunningGirl85]

RunningGirl,
I am guessing you must almost be at the end of your EEG. I hope you were able to get some sort of results.
I've never had an ambulatory EEG so I was wondering when you have an ambulatory EEG do you have your medications reduced or do things to try to trigger a seizure (EG - sleep deprive)?


When I had my Video EEG I was in a recliner chair the whole time & I could push it out to the recline position when I wanted to sleep.
I was sleep depriving myself to try to bring on a complex seizure so only really got a couple hours sleep each night.
It was hard to sleep with the electrodes on my head & the techs asked me to try not to press the part of my head on the pillow where the electrodes were as it interfered with the EEG.
:roflmao:.


I know what you mean, the itchiness is really annoying lol.

Uh oh. I slept on my side (there were electrodes on both sides). Mostly my left side, which is where my seizures take place onder: I actually don't think I was perfect about recording things (I forgot when I ate an ice cream sandwich and a couple of cheetos, and forgot during a couple of restroom breaks). I can't wait to NOT be recording almost EVERYTHING except drinking water and walking around.

I take this thing off in an hour! Woohooooo. Except... I'm not sure if I've had any of my normal partials. Actually, I KNOW I haven't had my usual ones, despite the fact I've broken down crying like three times, and was angry enough to walk into one of the offices here and pull someone out, and tell him what was on my mind (it's also that time of month, hahahahha). I've been dizzy though :/ And the first day this was on my headache was soooo bad. Last night, I had another crying spell. I have had a bit of a rash on my chest for awhile, though it doesn't itch, and it's not raised or anything, and last night I noticed it looked like it had grown a bit, and I'm like "OMG, maybe I have skin cancer?!?" I'm actually 90% sure it's probably from the Lamictal, which is why I hadn't checked it out sooner, but then last night I freaked, and then I started crying (again), and I had the weird feeling in my nose... not QUITE the smell, but like being punched in the nose, and sort of a smell. I've had it before, but it's been awhile. Here's to hoping it was seizure activity. Even though it's different than normal...

As for what I had to do, think it just depends on what they are looking for. In my case, the neurologist wanted to make sure my medications are working since I said I'm still having partial seizures, and he's thinking it might be anxiety (I know the difference, but yeah), so he's checking before he changes things up. I went about my daily life, and basically just avoided whatever might interfere. I am, however, sleep deprived, because this is one of those weeks where my sleep was awful. I woke up SOOO many times (I think I was supposed to record when I woke up too, but I only did it when I woke up and actually GOT up to use the restroom - I kinda figured they'd know from my brain waves). I think that might be why I've felt dizzy since yesterday. Who knows.

Anyway - guess I'll find out in January!

 

[xxspellsxx]

hope it came off ok! and you have had a good old scratch of your head