Hi StrongerThanEpilepsy
I’ve had 2 VEEGs, the 1st which was done in 2010 was part of pre surgery testing. The 2nd which was in July last year was because I’d been having funny feelings for a little while & my neuro wanted to try to capture some on footage to give him a better idea of what sort of seizures they were.
The hospital where I had my VEEGs prefer if the patient could have a ‘carer’ with them, someone who knows your seizures & could alert the nurses you are having a seizure when you can’t.
For my 1st VEEG I had my Mum with me & we were in the VEEG monitoring unit for 5 days.
With my 2nd VEEG as it was only for monitoring to help the neurologist get a better idea of what happens when I have a funny feeling & I don’t lose awareness during a funny feeling I was able to go in for the monitoring by myself. I was meant to be in for 5 days but my brain was being stubborn & still hadn’t performed by day 5 performed so I ended up being in for 8 days.
1) What activities did you do while in the hospital? Were you allowed to stand if you wanted to or did you have to chill in bed all week? I'm thinking of taking some art supplies such as paint but I don't wanna overdo it knowing me haha. And I don't think a hot glue gun would be allowed in a hospital?
With the 1st VEEG we took some games, card games, plenty of magazines & puzzle books. My Mum took her kindle which us kids got her for her 60th birthday (a few months before my VEEG) & we hired the tv in our room.
With the 2nd VEEG I had my mobile phone & laptop, took some dvds for my laptop & had a dongle so I could use the internet while in the hospital. I also took puzzle books.
You will probably find that with any devices eg computer, tablet, phone you won’t be able to use them while plugged in as it reacts with the readings. I found I was just switching between the phone & the laptop so using phone was laptop was charging & visa versa. There was a power point near where I was so I could easily recharge my devices.
2) Were you really watched the ENTIRE time, including the bathroom?
All except for when I used the bathroom which was connected to the room you were in. I had to stay in view of the camera at all times. There was even a basin in your room for you to brush your teeth. It wasn’t in camera shot but it was in view of the nurses station.
I had to have sponge baths, when I was ready for a bath I just let a nurse know & they would bring me some water towels etc, pull a screen around in my room & close my door for privacy. They had a monitor in their station so they would cover the monitor while you were having your sponge bath. Once I was finished I would just pull the screen across again so the nurses knew.
3) Did you invite any friends over?
I live in a country town which is 4 hour drive each way from the hospital I go to for my epilepsy so it was hard for my friends or my parents to come see me.
I had a friend who also has epilepsy & lived not far from where I was having the VEEG come see me both times.
The 2nd VEEG I had a couple of other friends who were at the hospitals epilepsy clinic for their own epilepsy at the same time I was in for my monitoring so they came to see me in between their appts.
4) If a seizure happens, did a nurse come in to assist, or did they intervene it with medication?
With my VEEGs the wiring was hiding in what looked like a bum bag (think Americans call it fanny pack) which you wore around your waste. I had 2 buttons to press, 1 was connected to the wiring in the bum bag. If I felt something happen or did have a seizure I pressed the button & it book marked the footage to help the techs get a better idea of where to look as otherwise they had hours of footage to go through. The other was the buzzer for the nurses if I needed anything.
With my 1st VEEG the epiologists wanted to trigger a complex partial which is my main seizure so instead of taking me of my meds (risking me having a tonic clonic) they only reduced the meds by a large amount. I only ended up having a couple of simple partials which they still picked up on the VEEG & was still enough info along with their other information to decide I could have surgery.
With the 2nd VEEG they slowly took me of my meds over 3 days. I didn’t end up having anything happen until the 5th day & when I did it was a tonic clonic. I had no recollection of the seizure just remembered waking up & the nurse coming in explaining what happened. That was the only Tonic Clonic I had & after that I ended up having quite a few funny feelings over 3 days. When I felt a funny feeling come I’d let the nurse know & theyd stay with me until I thought I was OK.
After I thought I was OK the nurse would ask me the regular questions they ask during a seizure to test me eg ‘where are you’ what day is it?’ ‘Who is the prime minister?’
At the end of the VEEG when I saw the neurologist he told me they got enough good footage to confirm that I was having seizures & they were focal seizures. Once they confirmed the seizures I was put back on my meds & able to go home the next day.
5) Were you allowed blankets? I saw somewhere (I believe on here) that someone wasn't allowed any blankets.
Where I had my VEEGs you don’t get a bed but a big comfy recliner which reclines out to like a single bed. I used to have it half reclined but could have it as a bed if I chose. I wasn’t aloud any coverings eg blankets or sheets as they didn’t want anything covering your body which could hide seizure activity.
My 2nd VEEG was done in July which is the middle of winter here in Australia so I had a winter dressing gown on during the night in case I got cold. Each monitoring room had their own heater/ air con so you could have it on your preferred temperature so it was actually nice in my room.
When I had my 1st VEEG my Mum had a chair to sit on which folded out to a single bed.
Good luck with your VEEG, I don't know if you have a liason person eg epilepsy nurse but if you do they may also be able to give you some guidelines on what to expect.
