Getting ready for the EMU

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amor87

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So I'm a newbie here and hoping this is the right spot to post this. So the doc is talking brain surgery with me and in a week I'll be going in to do my week long monitoring to see if they can find my seizure focus.

I'm just wondering what anyone's experience with the epilepsy monitoring units has been? Especially rebound time after having multiple seizures(partials and grand mals) in a week. I know with just one grand mal I can be out for a good couple of days and then my brain is all fuzzy for a good week afterwards.

I've asked off for three days after the testing to recover, I'm just hoping that'll be enough! Anyways, hearing about anyone's experiences in the EMU would be awesome! :D

~Ashley
 
Hi Ashley,
Welcome to CWE.

Has the monitoring unit given you any information on what to expect.
It all depends on the epitiologist as to how they deal with your medication while you're in the monitoring unit. Some people have been completely weaned of their meds to help bring on a seizure, other people may only have their meds reduced & not be taken of them completely.

I had brain surgery on my left temporal on 10 March 2011 but I had my pre surgery tests in 2010. Because I live 3 -4 hours drive from the hospital where I had the surgery they tried to arrange that all my pre surgery tests were close together so I didn't have to make to many trips. I had my 1st set of tests in September 2010 which was PET scan, SPECT scan & MRI.

In November 2010 I spent 5 days in the monitoring unit where I had the Video EEG. I mainly take auras & complex partials, the epitiologists wanted to try to bring on a complex partial so they decided not to completely take me of my meds but instead just reduce my meds to a much lower level which they did over a couple of days.
When I 1st went in for the VEEG I was on high doseages of 3 AEDs, Tegretol, Keppra & Neurontin. I hated being on the Neurontin as it gave me the worse side effects so my epitiologist took me straight of the Neurontin.
Fatigue is one of my seizure triggers so during the VEEG I sleep deprived myself, only sleeping a couple of hours each night. Even though my meds had been reduced & I sleep deprived I only managed to take a couple of auras.

When I finished the VEEG the epitologist changed my doseages, he kept me of the Neurontin, lowered the Keppra & kept me on the same dosage of Tegretol.

My brain waited until the day after I came out of hospital before it decided to have a complex partial :pfft:. It took me a couple of days to catch up on the sleep I lost & to get back to semi normal. I had to stay in the city for a couple of days because the epitiologist wanted me to have a fMRI but when I did go home I stayed at my parents place for a little while so my body could adjust to being back on the meds.

When you have a VEEG you won't be able to put anything over your head so be sure to take plenty of buttoned down tops & PJs with button down tops.

It can get boring so be sure to take plenty of things to keep you entertained eg - books, games, crafts. When I had my VEEG my Mum was with me, we hired the TV for the week but also took games, puzzle books & my Mum had her kindle. I found the nights & real early mornings were boring & dragged when I was sleep depriving. The days were actually busy because I had people coming in to see me most days, whether it be students, drs, specialists. I met my neuropsycholgist while I was in for the VEEG & had my neuropsych assessment/memory test (with another neuropsych).

Good luck with the monitoring, be sure to let us know how it went.
 
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hi ashley!
i was there 17 days (first day was my birthday, go figure), and it took a good 10 days and no meds for anything to happen. didn't have much for partials, but once the grand mals started look out. i had one which they said was great but they wanted to try for one more - then i had two more and they were confident as hell.
recovery when i got home, considering the length of the stay, was, well, emotional. i always am after a g.m. anyway, but put all that together with the neuro testing, talking to the surgeon, meetings with neuropsych ologist/iatrist, then ramping back up on the meds... it was a good 10 days before i got back in the swing of things.
for one week there i'd say you were smart to take three days. and ya know what if those days are gone and you need more, take them :) it's not something to rush that's for sure.
keep us posted!
 
Hi Ashley,

My surgery was quite a few years ago. At the time I was just having complex partials. Because I was having 2-3 a week it didn't take long for me They started working me off the meds and I was having seizure in a matter of days and not weeks like my friend qtown. If I remember I was there 5 days. I just remember when I was getting to leave they tried to sell me the video of my seizures for 20 dollars Needless to say I didn't buy it. Every one is different as far as recovery so any time you could take would probably be best to assure you have recovered. And please keep us posted. We will be here to answer your questions through the process.
 
Thanks everyone

I'm on my first day at the EMU now. I had a seizure before they even had me hooked up to the EEG! So now I'm back on a little more medication to try and slow down the grand mals I'm having! Splitting headache at the moment but looking forward to more answers later this week! Thanks again for everyone's support! :)

Ashley
 
Good luck with it! I hope you the whole thing goes well.
 
Hi Ashley.
I'm right where you were at the beginning of this year. My admittance is supposed to be in Feb 2014. You're a veteran by now. How was it? Was it scary? I keep reading that it's incredibly boring and there is barely anything you can do without 'help'. I hope it was helpful for you!
 
Hello! This is the same Ashley just a diff user name! My experience was pretty eventful. I "popped" quickly and had a seizure before they even had me hooked up to the monitoring device. I ended up having so much activity they had to put me back on a little medication so I didn't lose brain function permanently. I would just say know going in what you are and are not willing to do. My docs tried changing my meds half way through and it made me feel ten times worse. Fortunately, my fiancé helped back me up because they blamed my side effects on my seizures and not the meds. They ended up releasing me after 3 days, I had more seizures at home as my body readjusted to being back on the medication.

I had one grand mal and "seizure activity" every night. I wasn't myself for a good month afterwards. I ended up having to seek out eastern medicine to fight off the brain fog and depression that were termed "post ictal" side effects. All in all they didn't find my focus, but I atleast found accupuncture and reiki(I'm now a practitioner) that helps manage my epilepsy along with my medication. I can proudly say that I'm going on over a year seizure free and I give credit to my own reiki treatments combined with my medication!

Best of luck to you!
 
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Nice. My mom practices reiki as well. Table's in the closet. Thank you for your response. I don't have internet where I live so I don't get on very often. I want you to know how much I appreciate it, though. Jeeze- an entire month?? Do you work? I don't want to have to miss a bunch of work due to re-adjusting. So were you not eligible for surgery, or did you refuse it? Or was that even a consideration for you?
 
I only took off a week from work, I was able to coordinate with our spring break and then take a week off after that. However, I don't remember a good 2 weeks when I was back at work afterwards. That's what I meant by the month until I was back feeling like myself.

The testing ruled out surgery for me. They couldn't find my focus. I hope your testing will give you the answers you are looking for!
 
Hi Ashley, I'm so happy to hear about your year seizure free!!!!! Sorry it was preceeded by that horrible stuff, though.

Sunflower, I hope you have an easier time but also end up seizure free!
 
amorrison said:
I only took off a week from work, I was able to coordinate with our spring break and then take a week off after that. However, I don't remember a good 2 weeks when I was back at work afterwards. That's what I meant by the month until I was back feeling like myself.

The testing ruled out surgery for me. They couldn't find my focus. I hope your testing will give you the answers you are looking for!
Click to expand...

fab ashley on a year seizure-free, that is so nice to hear.

and i'm with you on the unit, big time, had a few partials and three grand mals after 12 days (was there for 17). majority of the following month after was tough, from feeling loopy to exhaustion to being scared of another sz while my med doseage ramped back up (was off everything for the last 14 days of stay). i am very fortunate they did find what they needed and i will not be in that position again. well, with highest hopes anyway.
HUGS and best of continuing luck on the reiki!!
 
So is it scary waiting for the seizures to happen? I mean, seizures are one of my least favorite parts of my life and I'm going to be hoping for them? It just scares me to think about how they actually want to create those events in my brain. I understand why and I understand that safety is not a concern in the facility, but it still freaks me out to think about my brain being over-exercised that way.
 
for myself no, wasn't scared at all. just like anything else, what we went for (and took time off work, rearranged schedules, opened up the door for my future) feels like a great waste if nothing happens. i totally get why you aren't looking forward to having a seizure, however, it's like 'storm before the calm.'
if you choose to up seizures now (in a safe place) in the hopes of not going through them in the future, it's worth it. at the very least to find out what's going on up there. that's everything for us with E.
 
I had a four day video EEG with about 25-30 leads glued on and a tether about ten feet long so I could move around the room. My wife was allowed to stay with me, so this wasn't a big problem. But, when they told me they'd be coming into the restroom (in my room) with me on the tether, I told them that was the limit and that I could hold it for three days if need be! They relented and said it would be alright but that I couldn't latch the door. Oh well, compromise is part of life, I guess. They totally withdrew my meds which threw me for a loop because they hadn't really said anything about actually provoking seizures. The worst part is the waiting. Who the Hell wants to lay around hoping for something they hate and that harms them?

My seizures are monster Gran Mal ones which usually leave me feeling 'ruined' for the next couple of days or so. Well, I produced three beauties for them. Of course, as you all know, you have to rely on others' info about them since you aren't 'there'. The hospital, University of Colorado Hospital, is a teaching and research one, and Linda said that during the final, and worst, seizure, there were so many people in the room that she had to leave! They gave me intravenous Atavan and I'm told I slept for 12 hours like a baby. I'm usually lucky to get 5. It took about four showers worth of shampooing to get that crappy glue off my scalp and out of my (Rapidly thinning) hair.

The next day the Dr. came in and informed me that I had Epilepsy. I resisted a temptation to say, "No sh-t, Sherlock.", since I had been having Gran Mal seizures for about 25 years at that point. In fairness, there are other illnesses and reactions that can also cause seizures. She told me that my Focus was in a relatively inoperable spot.

But, I wasn't there to treat Epilepsy, but rather to have two brain electrodes implanted in my Thalamus to treat the symptoms of bad hand tremors brought on by Depekote. That is another, even longer story. Hard to believe, eh? DBS surgery is fantastic! I would definitely look into it for tremors if they interfere with your daily life. I'm an artist and professional model maker among other things, and after ten years of being able to do nothing but look at my materials and supplies, I got my life back with a few simple (right) surgeries. I'm grateful beyond words.

There's ALWAYS hope. Always. Never give in or up. Wade through all the indignities and diagnoses and keep your head held high. The best thing to do is to live your life as normally and as fully as possible. You'll be alright.
 
hey motorbill, i'm SO with you on that one. i wouldn't take anyone in the bathroom with me either, went whenever i felt like, both in the seizure unit and after brain surg.
got in shit from nurses a few times, but just kept reiterating that after everything i've gone through, if i want to bloody pee alone i will, esp. as my boyfriend was usually in the room. alot of my bathroom visits post-op were to continuously throw up, well nurses i'm already on the floor for that so don't worry too much. i needed one tiny sliver of independance after 20 years with E, losing my license 7 times, having three parts of my brain taken out, so if i can go pee or throw up all by myself i'll feel like i'm atleast 10 years old. thank you!
 
ahhhh good for you! i can only imagine. at 65 that would be 30 years seizure-free for me, WOW. best of luck for the future :)
 
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