Callie's First Video EEG!

Hello y'all!

I'm joyously writing today for two reasons: 
  1. Today is Purple Day, a dedicated day where people worldwide spread awareness about epilepsy. Of course, we can spread epilepsy awareness everyday, but it is good that we have a dedicated day for that too.
  2. As you can read about in previous Seizure The Day entries, I recently had my first Video EEG! My husband Jake interviewed me so we could share my experience.  Below is my second Seizure The Day video, Callie's First Video EEG!





Well, as you can see I am very hopeful and excited about what's to come with my epilepsy journey.

I'm sure you have more questions about Video EEGs and epilepsy in general.   Please feel free to contact me here.  If I don't know the answer, I know some great resources and we will find out together!

Now let's get out there and spread some epilepsy awareness!

Seizure The Day!
Callie

P.S.  Below is a transcript of this video. My husband, Jake Sharon, watched the video, and typed up all my words.  
 
Hi. I’m Callie Sharon, writer of seizuretheday.org, epilepsy advocate, and passionate about crushing stigmas associated with epilepsy and lover of horses and all things North Carolina.


WHY WERE YOU IN THE HOSPITAL?

I was recently in the hospital for a video EEG. Basically what that entails is the doctors and nurses attaching lots of electrodes to your head so they can figure out where your seizures are coming from in the brain. What is contributing to those seizures? Sleep deprivation, lights, all kinds of stuff.



HOW LONG WERE YOU THERE?

I think I was scheduled to be there for four nights. I ended up for at least one extra, maybe two extra, because they couldn’t get me to have a seizure fast enough.




THEY WERE TRYING TO CAUSE SEIZURES?!!

Yes. What they do is they wean you off of your medication in an effort for you to have seizures. So they take you off that medication and get those brain waves kind of going funky so they can see you have those seizures. There are video cameras (it’s a video EEG). So there are video cameras there in the room with you so they can view the seizures and have that footage to watch as you have seizures. So they have both the video footage as well as the measurement of your brain waves from all the electrodes. And it kind of looks like if you’ve ever seen a lie detector test. That’s kind of what that looks like.




WHAT DID YOU DO ALL WEEK?

I did a lot of TV watching and sleeping. Friends came up and visited. Played some Scrabble. Played some I don’t know, make each other laugh games. I don’t know. Goofy games. But I had some great friends who came up and sat and talked and played and just encouraged. Had a really good time.




WERE YOU SCARED?

It wasn’t necessarily scared. It was more of like and excited nervousness. My mom was here from North Carolina. I had all kinds of co-workers and friends that were here just encouraging me, praying for me, supporting me. My husband, he was there. I’m just kidding. He was very supportive and being very sweet. 

I was a little bit nervous about actually coming off all my medication and having a bunch of electrodes attached and oh my gosh -just being real- what if I’m on the toilet and I have a seizure? Just real stuff!




WHAT IF YOU DID HAVE A SEIZURE ON THE TOILET?

There are lovely nurses that would have been insanely helpful and first responders. They were fantastic. It’s interesting because the first seizure that I did have was on Thursday morning and I got up to use the restroom and I had been off my medication. They called me “ripe.” They were like “Oh, she’s totally ‘ripe’ to have a seizure.” So I was very much on high alert, like big-time watch.

So, the nurses, as I went to the restroom, they were like “We’re just going to stand right here. You can just hold our hand.” So they were facing the other way. I’m using the restroom. My mom is in the room- like, not in the restroom, but- I had my own bathroom in the room and everything. So I’ touching the nurse’s hand while I’m using the bathroom. I’m like “Oh my gosh, I’m a grown woman.”

But whatever. You know it was like all barriers aside. This is what’s happening. This is their life. This is what they do. But I was like “Whatever. We’re getting answers. This is what’s happening.”




DID YOU GET SOME ANSWERS?

Yeah, I was really, really encouraged by everything that the doctor had to say. Basically his conclusion was that I have Primary Generalized Epilepsy. They had thought because of the way my seizures have changed over the years, that I may have developed a different kind also and it was affecting multiple areas of my brain. So the big conclusion is that it’s just the one kind. So that’s two thumbs up on that.

I can’t be treated through surgery. But my doctor does feel with proper medication, I can be treated and be seizure free with medication. So that’s a huge, huge encouragement. He feels very good about that. I’m super encouraged about that. And I know that Jake and my mom were both very encouraged.




ANY FINAL THOUGHTS?

Stay hopeful everyone! You too can be seizure free. And if you cant be seizure free, no worries.; you can still be joyful. Seizure The Day!