5-day Continuous Video EEG--No seizures

[bentwanderer]

Just completed a 5-day Continuous Video EEG. Off meds for 5-1/2 days, sleep deprivation with an average of only 3 hrs of sleep x 3 days. And still I had no obvious seizure activity.

I had my first seizure in August, 2013; had a 30-minute EEG a few days later and was definitively diagnosed as having bilateral complex partial temporal lobe epilepsy. Was put on Keppra. Over the basically two years since the first EEG the Keppra was increased to 750 mg 2x/day and Lamictal was added about a month ago at 50 mg 2x/day.

So, my question to the group is: have any of you had a multi-day continuous video EEG with basically negative results and what conclusions/recommendations came out of that testing for you?

The epileptologist team of 3+ will meet to review the electrographic data in early May and then I see my epileptologist in late May.

Back on my meds, but ramping up from a very low dose of both. Had a dramatic, over-dose kind of reaction to going back on full strength meds after the continuous EEG testing was completed.

Susan

 

[masterjen]

Something very similar happened to me during my VEEG - sleep deprivation, no medication, etc. and the EEG portion was entirely normal. Based on the video portion, however, the previously suspected diagnosis of frontal lobe seizures was supported and the epileptology team decided that the seizure focus was likely too deep to be picked up by surface electrodes.
I have also heard that it is possible for EEGs to sometimes be normal and sometimes abnormal. Most of the time the reason for this is unknown, but something as simple as the electrodes being place in slightly different locations between one time and another can be the reason. The fact that you had confirmed abnormal activity in 2013 may simply mean that the doctors will want to do another standard or VEEG in the near future.

 

[bentwanderer]

Masterjen, during your video EEG were you aware, or did staff make you aware that behaviorally there was something going on that would support your frontal lobe epilepsy?

 

[bentwanderer]

Just read the threads that I think Masterjen linked to my post. So, let me add one thing that DID happen BIG time as I was getting ready to leave the hospital.

I had started a taper of my seizure meds the day before I was admitted for the video eeg. By the time I was admitted I was off all meds. I was told to restart my sz meds at full strength the evening of the 4th day in prep for discharge mid-morning of the 5th day and to resume my pre-hospitalization schedule of my meds. Did so.

Morning of the 5th day I was untethered from the electodes and the video monitor, was allowed to go take a shower and by the time I was back in my room I was so dizzy, weak, shakey, etc. had to go back to bed. My 10:00 d/c was postponed till mid-afternoon.Tried to get up again at noon to see if I had recovered a bit. Had not. Back in bed basically so depleteted I could barely move any muscle.

I have had many of these experiences over the past 2 years since being diagnosed (but not nearly as severe/profound and assumed they were part of a post-ictal response to a simple partial or absence sz.

The good thing is the nursing staff and the neuro resident saw the dramatic change in my behavior from the first 4 days to the morning of the 5th.

But, since I had this BIGGER than usual episode after taking a full strength dose of my meds, I am now thinking it was a medication response, not a post-ictal response.

Can anyone help me tease out whether what I experienced in the hospital at the point of discharge was a medication response or a post-ictal response?

The neurology resident that had been following me during the video eeg gave me the "blessing" to titrate back up to my pre-hospital doseage according to how I'm feeling.

Will see my epileptologist in mid-late May.

 

[masterjen]

Masterjen, during your video EEG were you aware, or did staff make you aware that behaviorally there was something going on that would support your frontal lobe epilepsy?

Apparently I had seizures in my sleep, some I was not aware of at all and others I was vaguely aware of.

 

[kyrissa]

I had an intracranial EEG back in 2006. It took me extra days to finally have some. I'm going in for placement of electrodes and another intracranial tomorrow. Nervous that it will happen again.