Does no one find it annoying when sites change layouts and whatnot? It could be just me but whatever.
So, dude, I had another seizure. I’m torn because once again, I was smoking a joint! Why does this keep happening???? This seizure was way different from all of the other ones. First of all, it was early evening; the sun was still up! That’s never happened before. I’m usually already in bed when I have a seizure. Both of my kids witnessed it this time but *cute alert* JJ thought Kasper was hurting me when all he was doing was trying to keep me laying still so he hit him on the head with a toy. What else was different…oh! I knew it was coming. Like I felt it rippling up from the back of my head and through my arms. My vision got wavy and not the good, hippie kind of wavy. It felt like light was hitting me in the back of the head. I had enough time to turn to Kasper and tell him something was wrong, that I was about to have a seizure and that was all I remember from that one moment. The next thing I knew I was worried about falling out of the chair (I was not sitting in one), Kasper said I kept saying
I can not sit down; I can not sit down
He said I was just standing there in the kitchen like one of those statue people who move a fraction of an inch every other second. Then I was thinking he was going to call 9-11 and they were going to see we were smoking and take our kids but Kasper said I never mentioned it. There’s really no need to call 9-11 unless the seizure lasts several minutes or the confusion afterwards lasts for a prolonged time. But, man, I tell you what, something about this seizure was different. I was conscious the whole time! Like the whole time! Is that even normal or right? I’ve always associated seizures with massive convulsions, blackouts and foaming at the mouth. It wasn’t until post-stroke that I realize there are many different kinds of seizures. Kasper said I was responding, which I recall, but he said it was different. He said my language was technical, like I used complete and proper English like some sort of robot. He would ask me if I could see him and my response was:
I can; but I cannot. I cannot.
How weird, right? And I remember him asking the questions, telling me to breathe and I remember trying to follow his directions; trying to breathe myself out of it or something. It was just so incredibly bizarre. I remember the yelling I was doing, asking for it to stop, calling out for help and hearing Kasper telling me he was there for me, to breathe, to control myself but:
I cannot; I cannot.
It was so white. And it felt like something was pulling my left side outward and I felt my left face drawing out and down. Everything felt so tight. And I had the weirdest sight. Skas asked me after what it looks like to have a seizure and I told him people look like puzzle pieces which sounds stupid but now that I think about it, it still makes sense to say it that way. Like you can pick the people up and rearrange them as well as chunks of scenery. Kasper seemed to get it; he asked if it was like seeing shadows of people when there are none. And it totally is! I thought of this cartoon called Flapjack where everything, the scenery and the people move at different time frames, different directions. It’s crazy. It’s like everything is separate. I don’t know the loyalty or whatever of my followers but I once wrote about a nightmare I had and how it was a symptom of cerebral AVM but how was I or anyone to know that? I was going to add a link to that post but I can’t find it. It’s possible I wrote it but never published it. Anyways. Ever since my stroke and discovering AVM is like, a thing that can be pretty scary and it’s super rare, I started wondering what dots I could make and what lines I could draw. So randomly, I started to Google little things from my past like hallucinations, dreams and just overall strange experiences and even “birthmarks.” I just wanted to find out what signs have I missed throughout my life? Are there things that I could have noticed that could have altered the outcome of my stroke ? Are there things that I could note that someone might read on a blog one day that could light up a bulb in their head and begin some new research or something? Anything? So I was looking up this dream that turns out is in fact a symptom of AVM and it’s been named after a famous story. AIWS, Alice In Wonderland Syndrome. I’d post the Wiki link but it’s been recently edited so there’s new info there that I have yet to read. It’s basically where you see things incorrectly. People appear bigger than average or you feel like you are getting smaller and everything is growing around you. It’s frightening to experience, to say the least. I found out a lot more about AVMs through this type of non-organized research; more than I found on any basic medical site that defined AVMs. There are so many different facets to neurological disorders it can get really confusing really easy. I mean, it’s your brain. It controls everything. What I was hoping to do was to Google the differences in this seizure from all the rest and blog about my findings as I went but I’m discovering that I have yet to fully recover from the seizure and I am quite tired already just from writing this and reading a bit here and there.
I was thinking of what I know of the brain already. It’s broken down into sections and strips and each area seems to represent a function or set of abilities more than it does actually control any of those things. I guess it’s because every brain is literally different from the next so how could anyone definitively say that yes, the frontal lobe definitely controls emotions in all people or that it is the only part of the brain that does? You can’t say that because it’s not true; it’s just not true. And it’s not because it’s not true for everyone but it’s not true because every part of the brain is SO closely connected that it makes one wonder:
Can it truly be separated or broken down into sections?
Personally, I think the answer is no but I also agree with my totally non-professional or science-backed theory of representative parts of the brain. But, whatever, I’m just a person that’s confused all the time. You look at forums, discussion boards and groups formed by survivors and there is a definite pattern but with differences that appear subtle until you take a closer look. I can go down a list of associated symptoms/disorders of right hemisphere bleeds and check off more that don’t apply to me than those that do. I believe this is because the brain, you look at it, and it’s twisted up, overlapping layers. It’s not an onion where one layer lays smoothly over the other. It’s like ground beef. When you buy the package fresh it looks like you can pull the strings apart but the second you touch it, the meat mashes into itself because..I don’t know, it’s all a part of itself? It sounds so stupid. These are the questions I have, that keep me up at night. So I started my search today with the obvious. The occipital lobe. It’s known to help control our vision and our balance. I’m so afraid of my neck hiding something. I have constant neck pain and aches. My migraines feel like they are rooted in my neck but they feel like they start in my eyes. From what I learned in my survivor groups, anything “living” inside the occipital lobe is pretty much inoperable so that is a real fear for me. The thing is, I can’t afford to see a doctor because of paranoia!
When I look up occipital lobe seizures, there’s mentioning of bright lights and I only see white. I have no triggers but I am prone to instant headaches anytime I see flashing lights no matter the color or pattern or speed of the flash. It makes me dizzy but that’s about it.
How common is it to know that a seizure is coming right before it happens? The rush that warned me was the very same as I experience after I fall asleep, the thing that jerks me awake that I say feels like some sort of panic attack. It’s all so confusing. I just want to know what is going on inside my head! And all of my doctors and neuros say that it’s nothing to do with the stroke or the removal of the AVM. How is this possible? After every seizure I’ve ever had, that part of skull that had been removed and put back ( I think it’s called a bone flap?) it feels like my brain is trying to push it back out of my skull. It’s so nauseating it makes me sick and I vomit for hours after seizing (which is a sign of occipital lobe seizures but it’s also an effect of every major seizure!). I’m so confused. I take my meds, I’m getting more sleep, eating a steadier diet and even getting exercise and yet this still happens. I don’t want more meds and I don’t think I’ll ever fully quit smoking pot until I find evidence it is somehow directly related. I have so many questions but I’ll nap now instead because my head is just throbbing. Whenever I look up my seizure symptoms, I’ll try to post what I find.