96 hr eeg what to expect ??

[lovemyladybug]

hey everybody havent been on in a while , not been feeling too good ( not E related .... much ) i saw a new neurologist today and shes going to be scheduling a 96 hr veeg , i've had mannnny eeg's over the years but this is a first for me and i was wondering what to expect , anybody whos had one let me know what i can expect .... thanks guys !

 

[ohighocutie]

Recently went thru Video EEG

I read you post and thought I may be able to provide a little insight. I just recently (last 2 weeks) went thru my first video EEG. It was scary because I was recently diagnosed with Epilepsy and only experienced my first seizure in March sometime. I had two brain surgeries August 2010 and had what I thought was a "common, basic procedure" and the end results have been completely life changing =(

I had my video EEG at University Hospital in Cleveland, Ohio and I don't think I could have had it at a better place. The staff was amazing which made an already stressful situation a lot more comfortable. The placement of the electrodes on the head is no big deal. At first it is a little uncmfortable but I quickly became use to it. It wasn't until I needed to have the electrodes placed in the base of my brain that things became a little out of control. I am not even going to lie... it is beyond painful and scary! But it is completely necessary for the doctor to gather much needed information for what is going on.

I think that the worst part of the entire situation for myself was watching the video of my 2 minute and 40+second seizure and seeing what happens to myself and what my family and friends are subjected to seeing and having to deal with. It is more painful to watch that than to have the needles put thru my jaw and placed into the base of my brain.

I am truly not trying to scare you but I am an honest person and wish I could find the answers that I am looking for as well. I hope this has helped you... if you have any questions please feel free to ask I will answer the best I can.

- Michelle

 

[lovemyladybug]

thanks michelle , but i dont think this type really applies to me , i will only have them on my scalp , i was just wondering what the whole "process " was like , what they have u do during the monitoring are you able to leave the room , are you in a regular hospital room , etc .... sorry you had to go through that , i've had E for a little over 10 yrs now and your right it is scary to watch a seizure , best of luck

 

[ohighocutie]

Yes when I went in for my procedure I was told that I'd only have the electrodes attached to my head as well. I had no idea that needles were going to be put into my jaw. I think this was because they didn't want to scare me or cause much more stress before admission. The room... I mean it's a hospital room. It wasn't anything like being in a hotel room or anything. My boyfriend was given a cot to sleep on and was permitted to be in the room over night with me. I was hooked up to a lot of monitors and machines. When I have my seizures I lose ALL memory for a couple hours before and several after so I was really confused after I had a couple while in there. The staff make it easier to cope with and to get back on track. I had an iv and was hooked up to oxygen when the seizures began. Blood was drawn and I was slowly winged off my seizure meds... that's when the REALLY bad one happened. I've have E for 10 months and I am terrified of what is going to happen to me in the up coming years.

 

[Ann T.]

Hi, lovemyladybug: I had video EEG monitoring 4 years ago. I'm sure some or more of what I have to say has changed, due to technology & advancement in procedures. Overall, it's not too bad, but the EEG wiring was icky, both being placed on my scalp and being taken off my scalp. Also, if you are being sleep deprived, if you naturally nod off, get ready for the nurses @ the nurses' station to wake you up by calling to you via intercom (I woke up, but I was quite cranky.), which only caused me to wonder where those voices were coming from...oh, and you'll be in a hospital room.

I was on 24 hr seizure watch since I was tapered off my meds completely, which meant that if I had to go to the restroom, I had to wait for the nurses to take me to the room restroom. I got busted for having to wait 30 minutes (and there's NO way I was going to wait, because when Nature calls, one MUST answer!) for the nurses to walk me 12 to 15 ft to the bathroom. So, if at all possible, have someone with you who can alert the nurses as to when & how urgently you need to use the bathroom. Do NOT have a family member walk you anywhere while hooked up, unless you really want to catch the wrath of the nurses...

And since you may be tapered completely off your medication, you may have to spend LOTS of time in bed. There's a good chance you will be hooked up to an IV just in case / IF you should have a super-long seizure, the staff will need to give you an emergency AED via IV. My suggestions: Bring board games, books to read, puzzles, movies on DVD, video games (cell phone or DS) to ease boredom. And I'm sure they will allow you to have visitors, friends as well as family, of course.

A few more things: I found it FASCINATING watching myself eat & how the brain sends signals to jaw muscles (you'll see the spikes in any muscle activity on the constant EEG recording done on the machine in the room) to chew & eyeball muscles to to look around. Your neurologist and his/her fellow partners will visit you everyday "in clinic" (as they call it) & will do various regular exam activities such as "close your left (or right) eye & watch my fingers: how many fingers am I holding up; check your reflexes, etc...the only aspects of the video EEG I hated was not being able to get out of bed when me, myself & I wanted to; I couldn't walk around to exercise, & I couldn't shower alone---a nurse or physician assistant has to stay right outside the bathroom door. They will also do regular BP & pulse recordings during the morning, day, & @ night. Just try not to get cranky & remember that they're just doing their job.

I hope all goes super well during your video EEG, lovemyladybug! If you have any other questions, just let me know. Take care!

*PS: For your sanity & privacy sake, I hope A LOT has changed with regard to the video EEG monitoring procedure & policies from when I last had mine in 2007.

 

[momof3boys]

I had my first video EEG 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 video EEG. 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!

 

[lovemyladybug]

thanks for the responses , sounds like it's basically going to be a crappy four days ! I cant believe they stand in the bathroom ( or right outside ) while your in there , talk about uncomfortable .... my two biggest concerns are if i'll have a private room , and wondering if i'll be able to go to a smoking area or not ( and yes i know i should quit )

 

[Ann T.]

lovemyladybug--yes, you will most likely be assigned a private room. I had 1 for mine. The smoking area I'm not so sure about. Make sure to ask before being admitted or it'll make your days more stressful.

 

[momof3boys]

Before I was admited, they told me I wouldnt be able to leave my room the entire time Im there. If I did smoke, I had to talk with my dr about getting on the patch while I was there. They wouldnt allow smoking in the hospital, and since I couldnt leave my room, I wasnt able to go outside. But I dont smoke anyways, so that wasnt something I was concerned about.

If I were you, I would run it by your dr who ordered the VEEG and ask them. My dr's nurse told me all of this information, so Im sure they can give you more information about what to expect.

Oh yeah, I forgot to add too... I was also hooked up to a IV too. They do that just incase you go into seizures that wont quit, and they can give you medication to stop seizures quickly. On my fourth day, I had my worse seizure the entire time I was there, and blacked out. When I came to, the nurse was giving me ativan in my IV. So yeah, they will more than likely give you a IV to be on the safe side.

 

[Wally]

Many hospitals are nonsmoking campuses these days.

 

[momof3boys]

I totally agree with Wally! Yeah, after being in different hospitals for different procedures, all hospitals these days have signs posted where they say no smoking is allowed.

 

[lovemyladybug]

Many hospitals are nonsmoking campuses these days.

yeah the two in my town are but theres a little area just "off" their property where the nurses , patients etc are allowed to smoke , even though they have signs up saying it's a smoke free facility so thats why i was asking , im going to need more than a patch if they want to be able to deal with me , lol

 

[lovemyladybug]

Before I was admited, they told me I wouldnt be able to leave my room the entire time Im there. If I did smoke, I had to talk with my dr about getting on the patch while I was there. They wouldnt allow smoking in the hospital, and since I couldnt leave my room, I wasnt able to go outside. But I dont smoke anyways, so that wasnt something I was concerned about.

If I were you, I would run it by your dr who ordered the VEEG and ask them. My dr's nurse told me all of this information, so Im sure they can give you more information about what to expect.

Oh yeah, I forgot to add too... I was also hooked up to a IV too. They do that just incase you go into seizures that wont quit, and they can give you medication to stop seizures quickly. On my fourth day, I had my worse seizure the entire time I was there, and blacked out. When I came to, the nurse was giving me ativan in my IV. So yeah, they will more than likely give you a IV to be on the safe side.

trust me i have a ton of ???'s for my doctor but sje didnt have time to get into detail at my last appointment , and she wont be back in her office until monday afternoon , thats why i was asking so much , just being impatient

 

[momof3boys]

The thing about VEEG's is that you need to be hooked up to their machines at all times. The only thing Ive heard people tell me different than what I experienced, was them being able to have a cord that was about 10 foot long, so they can walk around the room, etc. But they also video record everything. They need you to be recorded at all times for them see what the seizures look like on video. I highly doubt they will unhook you, and take the chance of you having a seizure not being monitered through machines or video, so you can go outside to smoke. I remember after my first appointment with my neurologist, when he told me about wanting me to get a VEEG, there was a man in the next room to me bitching out the other dr about how he cant do the VEEG because he wont be able to smoke, and he will go crazy! The dr just kept telling him that he can prescribe him the patch while he there and it will help. I dont know if the guy ever went through with it. But the drs need for you to be hooked up at all times during the VEEG. Ive never heard of nurses or drs unhooking a patient during a VEEG to let them leave their room for any reason. Besides certain tests, like MRI's etc. Maybe others who have had VEEG's will give their intake on how their VEEG was.

 

[lovemyladybug]

lovemyladybug--yes, you will most likely be assigned a private room. I had 1 for mine. The smoking area I'm not so sure about. Make sure to ask before being admitted or it'll make your days more stressful.

hey another question maybe you will know maybe not forgive me because this is gross but here goes , when i have a tonic clonic instead of loosing bladder control ( though that sometimes happens too ) i tend to " get nauseas with a gross result " figured that would be a less icky way to say it , many times i've had my hair covered in it , if that happens will they unhook me to clean it off or just leave it on me for four days ?

 

[Wally]

Maybe you are worrying about this too much. I know that I tend to work myself up quite a bit over a MRI. So much so, that my body resists any drugs that they give me to chill me out. The folks that work in the hospitals are pretty damn good at their jobs. Try to relax and trust that they will help you get through this unpleasant test. Trust that the information that they will gain will help improve your life and will be worth the minor sacrifices.

Now somebody remember to tell me the same thing when I'm getting all freaked out over a silly little MRI........

 

[momof3boys]

hey another question maybe you will know maybe not forgive me because this is gross but here goes , when i have a tonic clonic instead of loosing bladder control ( though that sometimes happens too ) i tend to " get nauseas with a gross result " figured that would be a less icky way to say it , many times i've had my hair covered in it , if that happens will they unhook me to clean it off or just leave it on me for four days ?

They will clean you up. They wont let you sit there with puke all over you for days. They will more than likely have you get unhooked and take you to your bathroom area to get cleaned up. A nurse will help you, or if you have a family member staying with you, ( I had my mom there with me the entire time) you can request to have them help you, if you and your relative feel more comfortable with that. They just want you hooked up to the machines as much as possible. But needing to use the restroom or even getting cleaned up due to an accident happening, they will let you get unhooked for that. Dont worry about it. I know its easier said than done. I had alot of questions before I had my VEEG done. I prepared myself for the worst, and after it was all over, it wasnt that bad at all.

 

[MsFrancFloyd]

Late reply, but handy.

I just finished up with a 96 hour EEG, I took a TON of photos, spoke with the techs, and explained it all in detail as I progressed. :comp: I hope it will help someone in the forum, perhaps let them know what to expect. :e:

:brain:

Apparently, I cannot attach a link? Im on FB, Francie Skylar Floyd, and the folder is public. So, I guess that is the easiest way to go from here to get you all to see the experience journaled with photos.

 

[Nakamova]

Hi MsFrancFloyd -- welcome! As a protection against spammers/trolls, new CWE members can't post links. After a certain number of posts the power to do so kicks in.