2 day EEG in progress ... finally!

[StaceyCeCe]

Hello everyone!

Well, I am 8 hours into my first day of the 2 day EEG. Whether insurance covers any of this procedure or not, I'm grateful it's finally being done! It was actually scheduled for the 18th of this month but we had it moved up due to the "episode" I had last Friday morning. The family holiday fun we had surrounding the Wii came to a screeching halt! And I was having a lot of fun dancing to the "Michael Jackson Experience", too! For now, my neurologist says absolutely "no video games!". Is it wrong that I'm hoping that rule is lifted at some point?

Anyway, I'm extremely hopeful this procedure finally points us to a diagnosis. I actually did have one of my episodes today while I was wired and recording. I know it may sound weird, but I'm really happy about that! My husband witnessed it, again, and wrote everything down I told I experienced on my daily journal.

I hope everyone is having a great start to this bright and shiny new year!

-Stacey

[epileric]

8 hours of your video EEG done? That's 16.67% already and chances are you'll be asleep for about 33% of it. Can you tell that when I have time to kill I do math in my head?

I had a similar experience when I had a seizure in front of my neurologist on my first visit. He asked me what happens during a seizure & I told him to please wait until this one is over. He didn't need to ask any more questions after that. I'm happy I got that one & I never thought there was anything wrong with me being happy about it. I also think you're lucky to have a seizure while hooked up to the EEG. Someone here once said that being hooked up is like a cure for their seizures since it seems like they never have them to be properly recorded.

As far as wishing they lift the "video games" rule, again I see nothing wrong with wishing they'd lift that rule. No reason we should like being deprived of something but realize that there is good reason to follow the rule. Not only does it lessen the probability of you having a seizure but it can make it much easier to determine other triggers, so remember these things do have good reasons.

[Nakamova]

I hope the EEG does the trick, and gives you and your neurologist something to work with.

[Endless]

Hey, Stacey! GREAT news about your seizure. Crazy that we are cheering for them, but it's really good you had one there where they could record it.

No video games? My neurologist doesn't say that for me. Are they a seizure trigger for you?

[StaceyCeCe]

Well, for now I'm told to not play any. It's never been an issue before. Over the holidays, we did a lot of the dancing games on the Wii. It's a lot of fun! Last Thursday night, however, my husband played the "Resort" games that came with the console. I had never played them before. The one in particular that may have triggered something is the skydiving game. The Wii remote is "you" and you have to link up with other characters as you fall from the sky. Nothing immediately happened when playing the game but when I went to bed, I felt as though my body was "flying" as I fell asleep. When the alarm went off in the morning (6:30am), it took me a full hour to even try to get out of bed. Once I finally did, that's when everything went topsy-turvey and I don't remember what happened. My husband said I went to lay back down on the bed, said "oh no" and proceeded to slowly fall of the side of the bed (?), he said he went to grab me but I was already standing up and crawled back into bed. Apparently, I then went from being in the fetal position to straightening myself out like a board. I have no recollection of any of this. In my head, it was as if I was dreaming and it felt like I was rocking or swaying back and forth. I came to feeling my husband's arms around me, hugging me. I was very groggy and proceeded to sleep until 5pm. That was a full day of sleep preceeded by a full 8.5 hours the night before!

When I spoke to the neurologist's office, the nurse said she spoke to my neurologist who said no driving or video games. I haven't driven in a very long time and have no intentions on it until I get the thumbs up.

So, yea ... no video games for now.

[huskymom]

bummer on the games. I don't play them just because they frustrate me. My hand eye coordination is non existant! Hopefully you will be let back onto the wii soon. I have to agree with you. I would be so happy to have a seizure while having that test. I have not had to have one, but if so, I would be hoping for that to happen. It validates you somehow, ya know?

Let us know how you are doing!

[josieb]

Hi Stacey - Wishing you good luck with everything!

I understand how you feel. Years ago, prior to my brain surgery and everythng else, my husband and I loved playing Playstation. Unfortunately, it turned out that playing the games caused me to have additional seizures. That was over 5 years ago and although I hated to do it, I had to give up playing any of the games at all. I've read up on it and found that some people are affected by the games while others are fine with no reactions. Hang in there and I hope the 2 day EEG results give your doctor what he needs!

[lureswinger]

i have to go in for a 3 day telemetry wired for eeg and on video has anyone else been on this for that long, i wouldnt mind but i dont see what they are going to achieve most of my epilepsy is stress related (eg getting kids up for school and making sure i have everything in the van for my days demo) so just how am i supposed to get stressed laid on my back staring at the ceiling for 3 days, have the hospital got a way of producing the stress i go through on a daily basis at this moment i am under more stress sat here wondering whats gonna happen and i think that is winding me up which in turn is being aimed back at my family (or so im led to believe by the wife) personally i dont feel that bothered other than the prospect of spending 3 days bored to tears laid on my back with nothing to do.

[Endless]

Hi, Lureswinger,

I had a 5-day inpatient video EEG. Yep, it's boring.

Can you think of anything that stresses you out, other than getting the kids out the door on time? Like maybe getting on the phone and getting all your friends' credit card bills straightened out? Or calling a government agency and try to get a mistake fixed? (lol) Is there anybody that drives you nuts? If so, ask them to visit for a few hours. There's got to be something...???

I was really relaxed during my stay. I thought of it as kind of a "spa week," with wires and without showers or the spa.

[lureswinger]

well was considdering asking if i can the wife and kids in the next bed lol
how much more stress could i handle

[lureswinger]

one of the good points about being in this week is i dont have to be at home while the plumbers are here sortin out the shower and with some luck by the time i am home friday the shower will be sorted