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Feedback for veeg, seizure monitoring!! Please share your experience!!!

Sat, 11/15/2008 - 12:03

Hello,

I am a patient volunteering at my hospital on a team striving to improve the safety in the seizure monitoring unit.  Our work is published at the AES annual meeting.  The information gathered helps hospitals all over the world make the VEEG monitoring unit a safer, more informational experience for everyone involved! Please share with me your experience in the hospital, and the things you would have liked to see done differently, or the things you would have like more information about.

 Thank you for your time

Comments

Re: Feedback for veeg, seizure monitoring!!

Submitted by seakats on Tue, 2008-12-09 - 16:20

Well, the VEEG wasn't my dream vacation, but it was tolerable.  lol Let's start with the Not So Pleasant category.  The hospital staff made sure I had my meds (other than AEDs) but they gave them to me at odd times.  For instance, I have a thyroid med that I have to take in the morning 1 hr before breakfast in the morning or the med doesn't work right.  I had to remind them of this 3/5 days I was there.  Also, I had the sleep deprivation plan because this is one of my triggers.  The nursing staff couldn't figure out how much sleep I should get.  So one night I had 2 hours of sleep.  The next I had 5.  The next I had 4.  Ugh.  Those are the only issues I had with staff or hospital problems.  Other than that, as Br0 has stated, wireless internet would be fabulous.  I have a lot of my seizures just sitting at my computer typing.  The familiarity with my own computer would be less stressful and more helpful to the entire process. 

The Pleasant Category would be huge if I started typing everything out.  The staff was awesome, my doctor was informative, and everyone was very pleasant.  I was there for five days but the sitting in a hospital bed with leads attached everywhere, a box on my chest, ekgs on my chest and getting up to use the bathroom only under supervision was very difficult for me.  I didn't seize at all.  I blame it on the fact that I wasn't in my normal routine and doing normal things.  I felt so much anxiety about not seizing that I can't believe I didn't seize.  Now I find out that a lot of other people have the same reaction to the VEEG and don't have a seizure either.  I think patients need to be told from the beginning that it might happen to them. It made me feel like a fraud even though I consistently had seizures at home.  Then you see other people go home after they've had seizures and you feel depressed.  It's awful!  Even though I didn't seize there was enough evidence in the EEG and my previous neuro's findings to conclude simple and complex partial seizures.  I wished I could have a conclusive diagnosis though....

For now, that's all I can remember of the experience.  Hope this helps!

 

 

Well, the VEEG wasn't my dream vacation, but it was tolerable.  lol Let's start with the Not So Pleasant category.  The hospital staff made sure I had my meds (other than AEDs) but they gave them to me at odd times.  For instance, I have a thyroid med that I have to take in the morning 1 hr before breakfast in the morning or the med doesn't work right.  I had to remind them of this 3/5 days I was there.  Also, I had the sleep deprivation plan because this is one of my triggers.  The nursing staff couldn't figure out how much sleep I should get.  So one night I had 2 hours of sleep.  The next I had 5.  The next I had 4.  Ugh.  Those are the only issues I had with staff or hospital problems.  Other than that, as Br0 has stated, wireless internet would be fabulous.  I have a lot of my seizures just sitting at my computer typing.  The familiarity with my own computer would be less stressful and more helpful to the entire process. 

The Pleasant Category would be huge if I started typing everything out.  The staff was awesome, my doctor was informative, and everyone was very pleasant.  I was there for five days but the sitting in a hospital bed with leads attached everywhere, a box on my chest, ekgs on my chest and getting up to use the bathroom only under supervision was very difficult for me.  I didn't seize at all.  I blame it on the fact that I wasn't in my normal routine and doing normal things.  I felt so much anxiety about not seizing that I can't believe I didn't seize.  Now I find out that a lot of other people have the same reaction to the VEEG and don't have a seizure either.  I think patients need to be told from the beginning that it might happen to them. It made me feel like a fraud even though I consistently had seizures at home.  Then you see other people go home after they've had seizures and you feel depressed.  It's awful!  Even though I didn't seize there was enough evidence in the EEG and my previous neuro's findings to conclude simple and complex partial seizures.  I wished I could have a conclusive diagnosis though....

For now, that's all I can remember of the experience.  Hope this helps!

 

 

Re: Feedback for veeg, seizure monitoring!!

Submitted by Mama-Mia on Mon, 2008-12-15 - 14:26

I was in the unit three and a half years ago now.  Thank you for sharing your story with me, you helped refresh alot of things that were running through my head also.  I was in there for 2 weeks before I had a seizure, and the whole time I felt like they must have thought I was making the whole thing up.  I was so stressed out!!  I am currently working on convincing them how important it is to have a connection to the internet. 

 

Best of luck to you in the future,

I was in the unit three and a half years ago now.  Thank you for sharing your story with me, you helped refresh alot of things that were running through my head also.  I was in there for 2 weeks before I had a seizure, and the whole time I felt like they must have thought I was making the whole thing up.  I was so stressed out!!  I am currently working on convincing them how important it is to have a connection to the internet. 

 

Best of luck to you in the future,

Good for you for asking on

Submitted by fishy on Tue, 2008-12-09 - 17:06

Good for you for asking on this sight! I for one, really appreciate it. I had a 6 day VEEG a few months ago. The staff was fabulous and very and caring. I have to agree it is a VERY difficult time.  I felt very lonely even though I had some of my family with me. The hardest part was after they went home and the sleep deprivation began...every other night I had to stay awake until 2 am. At 2 I was then allowed a 3 hour "nap". So that part of it was almost pathetic for me. I really missed my husband and daughter that late. I was near tears most late nights.

Here are a few things I feel could be greatly improved: The glue that is used really needs to do less damage on hair after the electrodes are removed! I had to wash my hair a whole lot bedfore all the glue was out. Of course, it caused a lot of breakage. One more issue...it wasn't until the 3rd night that I knew I could ask for a sleep aide on the nights I could actually sleep. That is huge because after staying awake so long, it is actually difficult to fall asleep right away.

That was my experience and I am so blessed to have had such nice people taking care of me!

Good for you for asking on this sight! I for one, really appreciate it. I had a 6 day VEEG a few months ago. The staff was fabulous and very and caring. I have to agree it is a VERY difficult time.  I felt very lonely even though I had some of my family with me. The hardest part was after they went home and the sleep deprivation began...every other night I had to stay awake until 2 am. At 2 I was then allowed a 3 hour "nap". So that part of it was almost pathetic for me. I really missed my husband and daughter that late. I was near tears most late nights.

Here are a few things I feel could be greatly improved: The glue that is used really needs to do less damage on hair after the electrodes are removed! I had to wash my hair a whole lot bedfore all the glue was out. Of course, it caused a lot of breakage. One more issue...it wasn't until the 3rd night that I knew I could ask for a sleep aide on the nights I could actually sleep. That is huge because after staying awake so long, it is actually difficult to fall asleep right away.

That was my experience and I am so blessed to have had such nice people taking care of me!

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