EEG, or electroencephalogram, is a neurophysiological test to measure brain wave activity. The test is painless. Advice we were given was to not use hairspray or gel (not that I have it anyway) so as to not make electrodes hard to fix to the scalp). They said eat and take medication as you normally would. There are regular EEGs without video, as well as ones that simultaneously record what you’re doing when the seizure occurs.
My video EEGs weren’t sleep-deprived ones (where you are instructed to only sleep for a few hours), but I didn’t sleep much the night before either of them, since the appointments were at 10AM both days.
I had to have a Covid-19 PCR test 48 hours before either test.
Back to the video EEGs. A routine one lasts 30 minutes. I have experience of a 30 minute one as well as a four hour one.
A technician prepared me for the test. They put a tight red cap on my head. The cap had holes to let the wires from the electrodes through. The electrodes are glued to the scalp using a special gel-like glue. This was cold but they warned me it would be. I am sensitive to different temperatures because of my Cerebral Palsy, so sudden heat or cold, as well as sudden movement or sound, can startle me.
I had trouble doing the hyperventilation test and could only take a few breaths before my chest felt too tight and I was too dizzy.
The 30 minute test was more uncomfortable positioning-wise as I was in my wheelchair in a darkened room the whole time and my muscles were stiffer at times.
I was tilted back and reclined but still almost fell out of my wheelchair because of the force of the seizure when it came.
There were two tests to stimulate seizures: one was hyperventilation and the other was light stimulation. I felt like my chest was tight during the hyperventilation and I felt dizzy.
The next time I had a video EEG, it was a 4 hour inpatient hospital admission.
There were some misunderstandings about if I was staying the night or not (I wasn’t) and almost being hooked up to the video EEG while I was in my wheelchair instead of in bed, I was glad I was on the bed. It was a very comfortable bed and I was happy the assistants positioned me well.
We got some positioning advice for my feet, which was to use pillows. The bed was a little bent to position my legs and feet, but not so much as to make me uncomfortable. I had left my knee pillow at home and my feet fall inwards involuntarily anyway. I don’t have the feet strength to keep pilllows there, but I was glad the nurse took the time to advise us.
I wasn’t warned about the cold glue-gel the second time, but I felt more relaxed on the bed than I did in my wheelchair. I was hooked up to an electrocardiogram (heart monitor) too during the four-hour test.
I was as relaxed as I could be, given how my disabilities affect me by making my muscles stiff and giving me involuntary movements. I felt a little sleepy.
I did the hyperventilation test for longer than the first time.
The lights weren’t off and when they did the light stimulation test this time, they put the blind down.
After I’d recovered from the seizure, they put my glasses on for a while which was good, too as I explained first thing before the test that I get severe headaches I don’t have them on. They had to kind of balance my glasses in a position so they did not interfere with the position of the ear electrodes. My glasses didn’t fall off.
After both video EEG tests, I felt exhausted both after the test and for a few days afterwards, like as if I had flu and jetlag rolled into one. for 2-3 days afterwards. The gel-glue can be washed out with your usual shampoo.
Every seizure leaves me feeling tired and achy for hours and days.
I hope this blog post helps anyone, whether you have had an EEG or not.