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What if you spend a week in video EEG monitoring and can't record a seizure?
Wed, 01/28/2009 - 23:59Comments
spend a week in video EEG monitoring and can't record a seizure?
Submitted by srchtt3 on Tue, 2009-04-14 - 11:51
I don't know how many regular EEGs I've had but I've had two vEEGs. So far my average is running 50/50 on both regular and video EEGs! But even then I don't ever have a grand mal! Ugh.. Got some answers on the last vEEG, I'm constantly having irregular activitity randomly and then huge spikes here and there. Then inbetween that, significant slowing of brain waves.. hmm... And I wonder why I have bad days. haha... For me the video was very upsetting the second time. But I was pulled off my meds. I was quite a ways from my family so I couldn't see anyone and that upset me the most, they are my security net, I missed my kids, and I was mainly extremely emotional I think because of the withdrawls and the seizures, I was irritable, ranting.. Not very nice on the phone to my husband because he wouldn't come get me. And basicly I just wanted to rip those thingys off my head! .. I can laugh now, but it stunk at the time...
livable though, and not painful. Although you may have raw areas on your scalp!
I don't know how many regular EEGs I've had but I've had two vEEGs. So far my average is running 50/50 on both regular and video EEGs! But even then I don't ever have a grand mal! Ugh.. Got some answers on the last vEEG, I'm constantly having irregular activitity randomly and then huge spikes here and there. Then inbetween that, significant slowing of brain waves.. hmm... And I wonder why I have bad days. haha... For me the video was very upsetting the second time. But I was pulled off my meds. I was quite a ways from my family so I couldn't see anyone and that upset me the most, they are my security net, I missed my kids, and I was mainly extremely emotional I think because of the withdrawls and the seizures, I was irritable, ranting.. Not very nice on the phone to my husband because he wouldn't come get me. And basicly I just wanted to rip those thingys off my head! .. I can laugh now, but it stunk at the time...
livable though, and not painful. Although you may have raw areas on your scalp!
Video/EEG Long Term Monitoring, no seizures?
Submitted by capecodmom on Thu, 2009-08-06 - 21:45
Hi, Jenn here, I spent six days inpatient for video/eeg LTM. I was getting very frustrated because I wanted so badly to have an 'event' and none were happening. I kept telling them that I was not likely to have one if I am not up and moving around. For anyone wondering what it is like, it is very restrictive. Wires everywhere, of course, hooked up to the eeg on one side, heart monitor on the other. You can unhook briefly to go to the bathroom but that is it, and the machine alerts very loudly until you hook back up. Of course you can't even get out of bed to go to the bathroom unless there is a nurse in the room with you. So bring plenty of books, movies, anything you can do lying down. Come to think of it, you don't have quite as much down time as you might think as the first 3 or 4 days you meet with an army of nuerologists, epileptologist, neuropsychiatrists, psychologists, etc. Get ready to tell your story over and over and over. Also I spent many, many hours doing the psyche testing. This is to test your memory, problem solving skills, comprehension, fine motor skills, intelligence, and finally personality profile. It's actually pretty fascinating the mind/body connection in all of this.
Anyways, my doctors had the lab people rig up a battery pack so that I could at least walk out in the corridor for a while. Sure enough I had an 'event', I pushed my 'event button on my way down to the floor. They got me back to my room and hooked back to my room monitors via wheelchair. The doctors went to read the eeg only to find out that the battery failed and my 'event' was not recorded! Do these things only happen to me? Sometimes it feels like it. Since they did get me back to my room asap, they were able to get readings immediately following my seizure which was helpful.
If you don't have a seizure during your stay the next best thing is doing the ambulatory eeg at home. Good Luck.
Hi, Jenn here, I spent six days inpatient for video/eeg LTM. I was getting very frustrated because I wanted so badly to have an 'event' and none were happening. I kept telling them that I was not likely to have one if I am not up and moving around. For anyone wondering what it is like, it is very restrictive. Wires everywhere, of course, hooked up to the eeg on one side, heart monitor on the other. You can unhook briefly to go to the bathroom but that is it, and the machine alerts very loudly until you hook back up. Of course you can't even get out of bed to go to the bathroom unless there is a nurse in the room with you. So bring plenty of books, movies, anything you can do lying down. Come to think of it, you don't have quite as much down time as you might think as the first 3 or 4 days you meet with an army of nuerologists, epileptologist, neuropsychiatrists, psychologists, etc. Get ready to tell your story over and over and over. Also I spent many, many hours doing the psyche testing. This is to test your memory, problem solving skills, comprehension, fine motor skills, intelligence, and finally personality profile. It's actually pretty fascinating the mind/body connection in all of this.
Anyways, my doctors had the lab people rig up a battery pack so that I could at least walk out in the corridor for a while. Sure enough I had an 'event', I pushed my 'event button on my way down to the floor. They got me back to my room and hooked back to my room monitors via wheelchair. The doctors went to read the eeg only to find out that the battery failed and my 'event' was not recorded! Do these things only happen to me? Sometimes it feels like it. Since they did get me back to my room asap, they were able to get readings immediately following my seizure which was helpful.
If you don't have a seizure during your stay the next best thing is doing the ambulatory eeg at home. Good Luck.
Re: What if you spend a week in video EEG monitoring and can't r
Submitted by Lisa in Missouri on Thu, 2010-12-16 - 02:33
Just to have it posted for anyone looking, we had a tremendous experience taking my son for the VEEG week-long testing at the Cleveland Clinic. Couldn't have been more impressed with the level of monitoring, care and understanding. Really a super experience. We flew there from Kansas City, and it was well worth the cost of the plane tickets.