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epilepsy monitoring unit - what's it like?

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Posted 8/31/2006 5:56 AM (GMT 0)
confused  HI!

First time here.

In a couple of weeks I have to spend some time (they don't know how much time) in an epilepsy monitoring unit. Although they've explained things to me, I really want to hear from someone who's actually been in one or from some who works at one.

Can anyone help me?

Posted 8/31/2006 5:10 PM (GMT 0)
You just sit in bed and wait for a sz to happen as they wean you off your meds. You can watch tv or read books or do puzzles. If you have a laptop bring that to the hospital to keep you busy.

If your covered by ins. make sure the insurance co knows that they have no i dea how long you
will be in the hospital. Insurance co like to ok hospitla stays or you will be stuck with bill.

Riva
Posted 9/1/2006 5:36 AM (GMT 0)
Thanks for the reply. I've been telling the guys at work that it's a very exclusive, ultra chic spa that not just anybody can get into. Just special people. I'm a little apprehensive about it, but hey what can you do.
Posted 9/3/2006 3:13 PM (GMT 0)

Actually, it's pretty boring.  I've done it 3 times for 2 brain surgeries.  The first time I had one in the second day.  The second time I was there 5 days and had not a single sz.  I had to go back and ended up having a GM on the 5th day.  In my case though they needed a cp to confirm that that my sz focus was in the RTL.  Auras wouldn't suffice.  They didn't really like the GM either but they could tell from the EEG that it started in the RTL and then proceeded to become a GM. 

Take lots of reading material because after a while the TV gets real boring.  Also, they definitely monitor you.  You basically have your own nurse and if you need to get up and go to the bathroom she comes in and stays outside of the bathroom just in case you end up having a sz while you're up.

Christine 

Posted 9/5/2006 2:20 AM (GMT 0)
It was not to bad for me. I was on the 7th floor and was able to look at my window. I read some and looked at my window alot. I was also able to get up and walk around in my room. They also lowered my meds to cause me to have seizures. I had 2 and they were able to find were my seizures were starting. You will be ok.
Posted 9/6/2006 2:27 AM (GMT 0)
Debbie,
I've gone twice for monitoring. The second time I wasn't expecting it, it just happened b/c I'd had about three days of non-stop seizing and they couldn't figure out why. It was soooo incredibly boring b/c I didn't have a chance to bring anything to do. The first time I had advance time to plan. I brought magazines, and brain teaser puzzles, word finds, my cd player, some different small craft projects, etc. I'm usually really hyper, so sitting in bed was really hard, but I'd get up in the morning and start doing stretches and stomache crunches and stuff. I brought some of my own food too, so it kind of felt like I was on vacation, except the whole stuck in bed and the nurse patrol. There's a video camera across from your bed, and a microphone behind your head, but don't feel self-concious when you're talking or singing along to music or anything. The only time they really listen or watch anything is when you or a nurse presses a little button that marks the video feed for when you felt an aura or had a seizure. A lot of times they'll have you do psychological testing too. It doesn't mean they think you're nuts, they're just looking to see if anything's going on in your EEG while your brain's focused on certain things, and to see if stress factors are realated.
Any time you stay in the hospital, it's really scary to think about, but EEG monitoring is painless, and simple. Sometimes your head itches like crazy from the glue they use, but that's about the worst of it. The best part is, it helps the docs figure out what's going on better, so when you leave, you have some answers. Sometimes it will take awhile for them to put together all the info, and they'll send it to your neuro, who will explain it to you. Some stuff you'll know before you leave though.
It's not too bad of an experience - just different.
Posted 9/7/2006 6:54 AM (GMT 0)
Hi, my Name is Margaret & this is just an update on what has been happening since I my operation.
OK, here we go, since my surgery last year( July 28,2005 ) everything has been going well. I am almost weaned off most of my meds (Valporate-finished!, Dilantin nearly finished, 3weeks to go!) & I will be staying on Tegretol for a while longer ( only 2 tablets /day, a bit of difference to the 14 tablets/day I was on!! ) I don't think I could have asked for a better result.
I am back driving & more confident in everything I do. WOW, what a difference!! I just wanted everyone to know that there is hope sometimes. I put up with the side effects etc. for so long but I found the courage ( with a lot of support & encouragement, especially from my hubby )& the right neuro to get something done about it. I know surgery is not the answer for everybody, but if it is possible, please consider it. PLEASE don't wait as long as I did!! Surgery techniques have advanced so much in the last few years my surgery would probably have taken longer to recover from or not been possible at all!! As it was I went into hospital on the Wednesday night for my first surgery the next day (July 21st,2005) when a grid was placed on my brain! I was kept in hospital for a week & my brain was mapped & I had many tests etc. while there. The following Thursday (July 28th, 2005) I was back in surgery to have the grid & a small section of my brain removed. The second part of the second op took part while I was AWAKE!! I had to be awake so I could respond to certain instructions so that they knew they were not working too close to the wrong area ( the site was close to the area used for speech etc.) Everything went well & I was discharged from hospital 5 days after the second operation!! I was home & resting ( the rest lasted for a few days anyway!)in less than the 2-3 weeks that my neuro told me to expect it to take!
If you are contemplating surgery, I say go for it! Just make sure you know what the risks are. PLEASE.
Does your E have a great effect on your life or the life of your family? Think before you act. Weigh up the pros & cons. Drugs are not always the answer, but sometimes the E is worse than the side effects of the drugs! Consider carefully, whichever way you decide to go, PLEASE.

Before my op I went through sooooo many tests, you'll be fine!! It can get very boring at times, TV fills in the time, lots of puzzles, crosswords etc.
all helps, but I guess it depends what you like! Maggie28
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