For anyone who's ever had an EEG before, most should know that you are usually asked to have very little sleep before the test. This is so that you can possibly sleep during the test, but also because lack of sleep is a seizure trigger for many people. I got roughly 4 hours of sleep last night.
My mom took me to the appointment this morning, and on my way in I had a feeling that one was coming. I don't know what it was... it wasn't a full aura, but I just had a feeling.
I got into the test, and they had me just lay there for a bit with the wires connected. Then we started the breathing part. They have you breathe quickly and heavily through your mouth for 3 minutes. Then we stopped again for a while.
That's when it happened.
About 10 seconds after I stopped the heavy breathing, I felt an actual aura. I started getting "that feeling" in my head, which is literally indescribable but only ever means 1 thing: I was starting into a seizure. My heart started beating quickly, I could feel it beating in my chest, my breathing sped up again, and finally I felt some twitching in my right knee.
This went on for a while. I tried to get to sleep, but every time I got close to sleeping it felt like the seizure peaked up again. I could feel my right leg tensing up, and still the occasional twitch in the right knee. My right arm and leg both felt weak, even though I was laying down I could feel the weakness. My head twitched a bit, I think because I was trying to contain the other twitching as much as possible. This continued for about 30 minutes or so, when she finally started the blinking lights. I didn't tell her that I had started into a seizure, I kinda kept that to myself.
She put the light in front of me, told me to keep my eyes closed, and started the blinking lights part of the test. At this point, I was still in the seizure... and let me tell you: the blinking lights test while in a seizure was weird! It was like I could see shapes in the light as it blinked, and the slow blinking really threw my head for a loop. I don't even know how to describe it, but it definitely made me tweak out a bit.
Amazingly, the seizure stopped either during or shortly after the blinking lights test. Then about 2-3 minutes after the blinking lights, she stopped the test. I told her "I think we got one!" So she talked to me a bit about when it happened, and how long it lasted, and she told me that a doctor would look at it today and send it to my doctor tomorrow.
Now, those of you who don't have epilepsy, or don't know a lot about epilepsy, are probably thinking "How is this a good thing!?" My answer: It's not a good thing, it's a GREAT thing! The point of an EEG is to capture abnormal brain activity. I have had epilepsy since birth over 28 years ago, and have NEVER caught any abnormal activity during an EEG. I'm 90% sure that we got some this time! I just hope that the data is useful to my doctor...
My doctor told me that an appointment wasn't necessary after the EEG, but I think this time it is. I want to see the EEG, I want to talk to him about what he saw, I want to see if he can identify when the seizure started and stopped, and if he can't I want to tell him where to look.
This is probably the only time you will ever see me be glad that I had a seizure, but I am genuinely excited to see these results!
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