@A MyEpilepsyTeam Member Happy to hear your doctor canceled the VEEG order and even happier you have been seizure free!

@A MyEpilepsyTeam Member I think it’s great you got a copy of the video from your VEEG.

It really is something to watch a video of yourself having a seizure as you described. My doctor thought I was crazy for requesting a video and it took me a while to convince him but having that video made it possible for my daughter to learn ahead of time what it would look like should I have a seizure when she was with me…which she did experience about 4 years later when she was 9yo. She knew what was happening and get help right away.

Some happened for me that I did not expect when I saw myself on that video……I came to understand that even though I may be having the seizure those in my life are impacted too. I am not implying that we are to blame but rather that epilepsy is not something that has been kind enough to only impact us individually…it effects those around us to. Seeing my own video helped me to have compassion for what family and/or friends around me have experienced when I’ve had a seizure.

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Good question! The two times I did VEEG, they wanted me to taper with their supervision. The second time around, I ended up have a tonic clonic episode, so in my case it was probably the best not tapering off earlier.

Honestly, I would confer with your doctor and ask them, if there is a chance of a tonic clonic once you taper off. Doctors do VEEG for surgery and or confirm diagnosis and before the VEEG they just have a theory based on available information.

For example, the hospital believed that I had a certain form of epilepsy, but during the veeg, I had a focal aware seizure where my jaw felt locked and I felt like I was choking. Never ever happened before till that day. Recently, I had a seizure with a strange metallic taste and never happened before since I was first diagnosed 27 years ago.

However, I do get where you are coming from. It would feel terrible to go do testing and have no seizures. I'm having those concerns myself because there is a strong possibility that I have to get tested again but as an SEEG.

@A MyEpilepsyTeam Member, thanks!! Just trying to stay in today, but I have hope that as time goes on, epilepsy will just be a 'thing' in my life instead of in my face 24/7. It takes a lot of energy to have all my attention focused on ME.

I finally got it how much my seizures impacted others when my husband videoed one of my seizures at home a few months ago. He caught just the last 10seconds on his phone, but it was a real eye opener for me even tho he and friends had described to me over the years. I thot I would just sit there with some dainty staring. Not!! Very useful to be able to show neurologist, and it speeded up diagnosis too.

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@A MyEpilepsyTeam Member , I asked for a a recording from one of my past impatient EEG. They gave me the recording of my largest seizure. When I got home, I decided to watch it.

It was of my large seizure after I was down to nothing for and after they took the last step by eating or drinking something that would trigger my seizure.

In the video the eizure was so big there were 5 or 6 hospital staff in my room. I was convulsiing , to where it looked like I was about to roll over the bed arm gates, which were both up.during the seizure.

Watching myself seizures was a little strange, since I’ve never seen myself seizure. I felt I was watching a body double of myself. This person isn’t me.

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@A MyEpilepsyTeam Member, ugh!! Sounds like watching creepy movie in slow motion, waiting for monster to jump out. I'm glad they got the necessary info tho. I saw my neuro today, he's withdrawing orders for vEEG since increased Vimpat seems to be working. 28 days seizure free today!! So, no vEEG looming over my head for now. I'm very relieved about that!! Thanks for taking time to write back.

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