New Aussie here ... who's had video monitoring?

[AlliOz]

Hi, I'm a 44yo woman in Melbourne. I was diagnosed in 2002 after a couple of nocturnal seizures, then a grand mal. Since, I've had many absences where I just zone out/deja vu. They're irritating and embarrassing but I can handle them and I've always held a licence. But a month ago, driving my 10yo girl home from school, I blacked out at the wheel and ended up on a nature strip. I must have been with it somehow bc I turned off the engine and braked, but I was very confused. My licence is now suspended for 12 months. My neuro doubled my Epilim from 200 morning and night (which I handled well) to 400 am and pm (which gives me headaches, makes me tired and I'm putting on weight). He has booked me into Monash video monitoring unit next month to try and work out what's going on. I'm scared about having a major seizure there that will end up with me brain damaged. Also anxious about the whole experience, which sounds awful - light on 24/7, no blanket, no leaving the room etc. Does anybody have experience of this?
Thanks in advance ... and sorry if this is too long or not using right terms. I'll get the hang of it ...

 

[Silat]

Video monitoring is more boring than anything else... :?
For me, I took a bunch of puzzle books to solve and a stack of books to read.

They want you to have a seizure in there. They'll be waiting on stand-by to stop it with medication if it's really bad, but otherwise they want to see and catch one both on video and on an EEG.

It sounds a lot scarier than it actually is though... the description sounds horrifying, but in all actuality it's way more boring than it is anything else.

How long is yours for? Did they say?

 

[Dagmar]

Silat, do you get a headache from all of those wires? I had an ambulatory EEG years ago, will get a Video EEG and was curious about it.

 

[Silat]

I didn't. They were annoying and constantly in the way, but it didn't give me a headache or anything.
Getting the goop out of my hair was a pain though.

 

[CQ:)]

Hi Allioz,

Welcome to CWE.

It sounds a lot scarier than it actually is though... the description sounds horrifying, but in all actuality it's way more boring than it is anything else.

:agree: with Silat. Video EEGs are not as scary as they sound & more boring then anything.

I had a Video EEG in November 2010 at Austin Health in Melbourne which went for a week. The seizures I mainly take are auras (simple partial seizures) & complex partial seizures. When I had my Video EEG the epitiologists slowly lowered my medications instead of taking me completely of the meds as they wanted to try to bring on a complex partial & not a tonic clonic.

My Mum stayed in the hospital with me when I had my VEEG because she knows my seizures the best & was able to press the button to alert the nurses if I couldn't.

My Mum & I did take plenty of things to occupy us, games, puzzle books, books & we hired the TV in the room for the week.
I found the days were not so bad because I had different specialists coming in most days to see me. I sleep deprived myself to try to bring on a seizure so I found the nights & real early mornings dragged the most.

You won't be able to have a blanket so it is best to have plenty of warm clothes to wear especially in the nights when it's cold. When I had my Video EEG in November the days were warm but the nights were still cool.

There are a few people on here who have Video EEGs so I'm sure they'll be able to help more.

 

[CQ:)]

Getting the goop out of my hair was a pain though.

I hate the glue stuff they put on your hair during an EEG, for me getting the glue out of my hair is the worse part of any EEG lmao

 

[wiggles1]

I've had video monitoring by a Neurologist in the RAH in South Australia, the Neurologist told me my seizures are very violent. My Epilim dose is 500 in the morning and 500 at night, I am also on other drugs but seizures do not cease, My husband says the seizures are violent and aggressive. I believe if I was given less epilepsy drugs and given some anxiety drugs the seizures would either reduce or cease, When I am stressed/worried/anxious I dont have seizures. (I believe they happen when I relax as they often happen when I go out for a meal with friends, doing something relaxing at home etc) seems relaxing causes the seizures in me and as long as I'm stressed I won't seizure out

 

[pineki]

I'm suppose to go for a video eeg in a week, the neurophysiologist said it is more a holiday than anything else. I am also quite worried about getting a seizure when off the medication. But if you think of it, I get a seizure every 4 days about, without any assistance. Atleast in hospital, they will give me valium. Whoop! I guess we have to see the humor in it, relax, and wish for a cure.

 

[Dagmar]

I just hope they won't act as if I wasted their time if I don't get a seizure. Would that sound typical? I have terrible complex about doctors being dismissive towards me (which doesn't happen so often, since they sense I'm the opposite of a hypochondriac, but still) Allioz, I hope you don't mind my joining in, and adding questions to your post...

 

[wiggles1]

Dagmar,... when I was in hospital they said if I didn't have a seizure, they would induce one. What they did was they took me off my medication to bring a seizure on. Then after they got the seizure(s) recorded that they wanted I stayed in hospital till my medication was ok again. it was all within 7 days