Can someone tell me about video EEGs?

[jragonfly]

I just went to a epileptologist the other day, and he wants to do a 3 day video-monitoring EEG in the hospital. (My seizures seem to be in a very small localized part of the brain, since nothing was detected on an MRI or the regular 1/2 hour EEG.)

Naturally I am freaking out a little because I hate hospitals, and at the thought of having to be in there for 3 days and 3 nights. This is mostly because
1) I am very photosensitive, especially around fluorescent lights and hospitals are full of them,
2) I have a very specific diet and am terrified and disturbed by hospital food, 3) I can't sleep unless I am in complete darkness, even the smallest light coming through a crack or from a machine will wake me, and
4) I assume I will have to share a room with someone and I am a very private person, I get uncomfortable without personal space.

Can anyone tell me of their experience having the video EEG done? Maybe it will make me feel a bit better about the whole thing.

Also, does anyone know if hospitals will let you bring in your own food from home? I figure they wouldn't have a problem with the dry goods, but how about refrigerated stuff?

Thanks

 

[epileric]

I had a VEEG and I did hate that I had to sleep with the lights on so that I could be videod. I got around that by sleeping on my back & folding up a hand towel to put over my eyes.

I was very scared of the seizures but they deliberately brought on a seizure so that they could record it on the EEG & the video.

Just remember that all the things that add up to possibly triggering a seizure will mean you will have one sooner to get out of there sooner.

I'm in Canada so I have no clue if the hospital will let you bring your own food. I would check with the hospital itself since that rule might vary from one hospital to another

 

[momof3boys]

I had my first VEEG done in March of this year. I was admited on March 7th and was released March 11th. I spent 4 days and 4 nights in the hospital. It wasnt that bad. I was able to bring my lap top, so I can communicate with friends and family. They did have a phone in the room for me to use. But I did bring my cell phone too. I had a private room. The hospital I had mine done at, only had private rooms for people getting a VEEG. As far as foods, I didnt bring a whole lot with me. They let me get whatever I wanted off of their menu, anytime of the day, or night. My mom did stay with me while I was there. She was able to get something off the menu, but had to pay for it. It wasnt that bad as far as prices go. They did have good food though! I brought alot of things to keep me busy! Magazines, lap top, and some crossword puzzles. They had a tv and dvd player in the room. Once I got admited, they hooked me up, I was able to bring my own pjs. They told me to make sure I brought clothes that would button up in the front to easily take off and change. Once youre hooked up, you cant get unhooked til youre released. The one thing I didnt like, was that if you wanted to get out of bed, a nurse had to be in the room at all times. Even using the restroom they had to stand by the door with it partially opened. That wasnt the greatest part about it, but I convinced the nurses to let my mom be in the bathroom with me instead of them! I just cant go to the bathroom with a stranger staring at me!

Once I was admited, my dr took me completely off all medications. My first day was ok. I didnt start having seizures til my second day, and from then, It is kind of a blur at how the time went. I recall on my third or fourth day, thinking I was in a different room. It was weird. Once I started having seizures, my body felt worn out and tired. So if I had to stay up, which I did the second night, til at least 3 am, I was mostly watching tv and at times checking my emails. As for the night time, they did have cameras that had night vision on it, and I didnt have to leave a light on, but the light in the bathroom was on all the time, I had the door cracked open alittle bit just for my comfort reasons. At times they would leave the door open, or during the night when they would check on you, they may close it, or leave it open, depending on the nurse you get.

For the most part, It wasnt a totally bad experience. Heck If It wasnt for me doing it, I would still be on two seizure medications and not 1 that I am now on!

 

[CQ:)]

Hi Jrangonfly

I had my Video EEG November last year & spent 5 days in hospital. My video EEG wasn't too bad & was part of the testing to see if I was a candidate for surgery. I am from Australia so I'm sure it's a little different to America.

At the hospital I was in there were 3 Video EEG room & each patient in for Video EEG had their own room. The room I was in was an end room so we had our own bathroom but the other 2 rooms had to share a bathroom.

I know some people have said they were taken completely of their meds during their Video EEG. In my case the epitiologists only wanted me to have my regular seizures (partials) & not a tonic clonic so they gradually reduced my meds until I was on a very low doseage. One of the main triggers of my seizures is caused by being overtired so I sleep deprived myself only sleeping about 2 - 3 hours each night.


I had my Mum (as my carer) in the room with me for the 5 days & she got 2 breaks a day - 1 in the morning to have a shower & then in the afternoon to have a break. The lights being on all the time didn't bother me but they bothered my Mum a little lol.

We hired the tv for the week so we had something to watch & also took plenty of magazines, games & Mum had a kindle to read aswell. I also had a phone in my room, it didn't cost to receive calls but if you wanted to ring out you had to get a phone card. I had my mobile phone with me so I was texting family & friends with updates.

The hospital food we had was actually nice, both Mum & I got a menu with 3 different chooses. As Eric suggested maybe contact the hospital before you go in for your EEG to find out about taking your own food.

Nearly every day I was in for the monitoring I had visitors - epitiologists, neuropsychs, psychiatrists come in to chat to me & also had a couple of students come in to chat to me. I didn't mind as it made the days go quicker & the most boring part was during the middle of the night when I was keeping myself awake.

Good luck with your Video EEG.

 

[jragonfly]

OK thanks guys, that does help. At least it looks like I will get my own room, the only times I've ever been in the hospital I've had to share. At least that way I can insist on turning out the lights without bothering someone else.

I get nervous over food because I have a sensitivity to gluten, and it's miserable if I eat even a little it irritates my stomach/intestines. I also have some strange food allergies. I mean I'm sure they would be as accommodating as much as possible but I just feel safer with things I buy or make because I know exactly whats in it.

That whole bathroom thing is rather disturbing though. I hope that's not the case for me. I assume that's a precautionary measure for people who have generalized or complex seizures, since they could have one in the bathroom and hurt themselves. Since I don't lose consciousness I'm hoping nurses won't be so strict!

 

[momof3boys]

OK thanks guys, that does help. At least it looks like I will get my own room, the only times I've ever been in the hospital I've had to share. At least that way I can insist on turning out the lights without bothering someone else.

I get nervous over food because I have a sensitivity to gluten, and it's miserable if I eat even a little it irritates my stomach/intestines. I also have some strange food allergies. I mean I'm sure they would be as accommodating as much as possible but I just feel safer with things I buy or make because I know exactly whats in it.

That whole bathroom thing is rather disturbing though. I hope that's not the case for me. I assume that's a precautionary measure for people who have generalized or complex seizures, since they could have one in the bathroom and hurt themselves. Since I don't lose consciousness I'm hoping nurses won't be so strict!

I complained about the bathroom thing the third day I was there. Since they gave me the wrong medication, (metformin, instead of Glucophage) I was having really bad issues with my stomach. I kept telling the nurse I had to use the restroom to see if would help at all... but everytime they would come in to unhook me, they would be right behind me wanting to be in the bathroom with me! All my seizures, I was consious through out them (simple partial seizures), and I still had problems with the nurses wanting to come on in. I finally convinced them to let my mom in with me. They told me its the policy for anyone with any kind of epilepsy or seizures. That was the part I hated about the stay.