Question for anyone who has had a video observation eeg, or spent time in a clinic fo

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Zara-Newman

Zara-Newman

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As some of you know my seizures have been very bad lately - I have been laying in bed since 10 trying to sleep and I wondered if anyone else had the same issues as me.

I was put into an epilepsy clinic for them to watch my seizures, in the hopes of them understanding them better, with doctors and scans and such.

My normal seizures would be once a week for a grand mal, with myoclonic jerks every other day, occasional absences, but not so common.

I was there around a month and a half, I had NO seizure activity.

Then as soon as I left I dropped and my body went crazy.

The same happens when they do video exams, and even eegs, I ALWAYS have seizures the day after the device is removed.


My body just doesn't seem to want to help itself, has anyone else experienced this?


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I probably won't reply to any posts because I am trying my hardest to sleep, but I wanted to type it while I had it in my head.

I know due to different time zones different people will be up to give an opinion (hopefully)

Goodnight xxx

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Hello Zara,
I'm supposed to be going in for video eeg within the month. Hopefully, I can give you some thoughts after.
Good Luck.
M
 
Thankyou - it is a really strange, and annoying thing.

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KarenB whose son has seizures was saying that she always found the best way to at least temporarily cure his seizures was to take him in for an EEG.

I was in the hospital recently for seven nights for a VEEG. The first five were pure boredom and an itchy scalp. The seizures finally came on the last two nights with a vengeance.
 
Yeah, I feel that strapping those things to me or putting me in a place where I am being observed immediately cures me.

It is annoying because it makes the doctors think you are eggagerating the problem.

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Since my seizures are only nocturnal, I had gone for 30 years with nothing but "normal" EEGs even though I definitely have seizures.

I just don't have seizures during "office hours". Once they tried to get me to have one as a "command performance" by giving me a sedative to make me sleep. My poor brain was so drugged out and confused at that point that nothing happened.

When I stared researching about P.N.E.S., I started thinking that maybe that was what I had. The last two nights of my VEEG showed that that wasn't the case though.
 
When I had my 1st video EEG, I sat there for a week and a half frustrated and bored. The first week, I took my meds, but had no seizures. Then they took me off of them for a couple of days hoping i'd seize, but nothing happened. I was put back on them again, and a day or 2 later I finally seized.

The doctors were confused as all heck, and I had to remind them that there is no rhyme (there is a reason) to when I have seizures, and like many others, they happen when they happen.
 
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My doctors always suggest I am eggagerating how many I have.
I mean when I say I have one grand mal a week with a few petite mal thrown in each couple of days.

Then when they are watching NOTHING!
We managed to get some on film once because they said they wanted to see one of them (because they aren't "normal")
But apparently they aren't allowed to watch them, unless they have recorded them themselves.

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Zara-Newman said:
As some of you know my seizures have been very bad lately - I have been laying in bed since 10 trying to sleep and I wondered if anyone else had the same issues as me.

Then as soon as I left I dropped and my body went crazy.

The same happens when they do video exams, and even eegs, I ALWAYS have seizures the day after the device is removed.

My body just doesn't seem to want to help itself, has anyone else experienced this?
Click to expand...

Hi Zara-Newman,

I have problems sleeping at night too. I just lay in bed around 10, finally I get up and I am up all night. I have insomnia. At 3 am I watch the news on TV, it's called the "Insomniac News." or the news for insomniacs. ABC News.

I have never had a video exam so I cannot help you there. I have had lots of EEG's. Sometimes, I sleep through them. That's when something shows up.

If I am not having a seizure during the EEG, then I was not having seizures during that time.

I hope you get better. :cheers:
 
This just happened to my daughter. 4 days on the monitor, and nothing. But they changed her meds daily. Hoping we're coming under control, and that part of her brain isn't being "stubborn". Epilepsy sucks.


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