WEGO National Health Blog Month
Day #2 Nov. 2 - Write about the weirdest thing about your health.
Visual auras. Visual auras are just... weird. Why? Because they are absolutely beautiful. Yes, I said beautiful. No misprint or spelling error. I won't lie and say auras are not scary, because when you have one you know that a seizure is on its way. Therefore, auras are warning signs. However, not everyone has the pleasure of having any warnings at all.Auras scream "Get somewhere safe NOW!" or "You're about to lose a chunk of your tongue!" Nonetheless, the beauty of them tends to sidetrack me from time to time. My Tonic Clonic auras are by far the most amazing. How odd and unfortunate is that? I believe it is my artistic mind that gives me this opinion, but it takes me weeks and sometimes months after the pain of a seizure to admit any of what I am writing at this moment to myself.
The visual auras that come before smaller seizures are pretty boring and annoying because I can hardly see through them, and to me they are unnecessary since I don't have anything to really worry about. I am not about to go unconscious, and I am not about to chew off my cheek tissue - so why the warning? Who knows... The picture above is what the smaller seizure auras look like as far as colors go. You can't see past them where the colors are, and they are just "stuck" there in your vision. My visual auras occur on the upper right hand area of my vision, but due to my scar tissue they seem to be moving toward the center of my vision.
The difference about my visual auras and the visual aura you see in the picture above is that mine also has a bunch of scattered text. I can never quite tell what it says, but it is memories of my old MySpace page. So I see bulletins and text with the MySpace logo. Other times I see pieces of a book or article I read earlier that day.
The color is also difference because it is split up into tiny shapes. There isn't just a big wad of color. Some days it is thousands of tiny rainbow squares, and sometimes circles. But truly, it really does vary. I remember for a year of my life it looked like shattered glass full of rainbow colors. I wish I could explain but it is so complicated. When the auras stop, the color breaks up like sand.
I also taste a taste and smell things while I see these visual auras. It tastes like copper (Am I the only one who put pennies in my mouth as a child?) and Windex. (Haven't we all accidentally gotten some of this in our mouth while we slaved and cleaned the windows for our mums?) The smell is pretty gross, because it smells like rubbing alcohol which I hate. And the smell is accompanied by a tingling feeling in my sinus area.
These smaller visual auras help me remember to relax. They seem to come without seizures a lot too, yet they show seizure activity, so my doctor also calls them "discharge seizures". When I have had a stressful day, done a lot of work, or I have not gotten enough rest, these auras are the first to let me know. I can easily tell them apart from the Tonic Clonic seizures, so I do not scream or anything. I usually just sit down on the ground and call for my sisters, brother, parents or boyfriend to come help me in case I fall. But I do not really panic.
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| Fingers painted with dark purple nail polish and violet ribbons for Epilepsy Awareness Month, along with a homemade Epilepsy bracelet! |
NOTE: I do have a type of discharge seizure where the aura is in between the ones I just talked about, and the Tonic Clonic auras that I am about to describe. I get very confused and I have an odd type of seizure that involves me literally speaking backwards and mumbling. I will also yell for someone to help me and then I just hug them. These don't turn into Tonic Clonic seizures, but they do wear me out and make me feel very sick and tired afterward.
Tonic Clonic auras start with the same taste and smell and tingling that I described above. But they also involve this feeling that is similar to having a bloody nose. It's this feeling that your sinuses and nostrils are just leaking. Due to this my family oftens freaks out when I have the sniffles, as I find myself sniffling before a seizure. This makes having the flu a million times more fun!
This lasts for a good 5-10 seconds, and then comes the colors and the dizziness. So at this point I know that I have a good few seconds to scream as loud as I can to get the attention of my parents, and to get down on the ground and lay down somewhere where I cannot hurt myself. I used to have more like 20 seconds, but over time the seizures have started to come more quickly. The colors are more intense and solid, and sort of "twirl" instead of break apart like sand. It's similar to looking at a fan on the cieling that is on a low setting - you can see the blades moving slowly in a circular revolving motion. Now imagine that full of rainbow colors - It is just crazy to see, but beautiful when you really think about it. (That is after I get over the fear of having just had a Tonic Clonic a few days or weeks ago...)
The "fan" starts out tiny, like a quarter, and grows until it takes up all of my vision. As it grows, I see all sorts of things embedded in the colors. I can't always make out what it is, but I have seen many math equations and websites as I mentioned before. The most interesting part is what comes next. I see this one image, and that is a picture (that we actually have printed in an old photo album) of my old house in Colorado Springs, Colorado in the fall. I see it in front of me as if I am looking at it printed on a wall. Absolutely the weirdest thing I have ever experienced... Well, except for what comes next. (I know, "Oh, brother...")
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| No way?! That's ME!!! |
After that image fades, all of my thoughts or anything that others around me say to me turns into (literally) text. The text moves across my vision left to right, just as if I am reading it off of the pages of a book!
So if I am thinking: "I am going to fall!"
I see: "I am going to fall!"
OR
If my father is holding me saying: "Everything is going to be okay, sweetie. It's alright."
I see: "Everything is going to be okay, sweetie. It's alright."
Now tell me, how "normal" does that sound to you? It's weird, right? I have only met one other person in my entire life who sees these things before a seizure. It just amazes me and makes me wonder how our brains are truly built. What does each section do, and what happens when that section has a seizure? Doesn't it just blow your entire mind to even try to understand? I know it blows mind...
After this has happened, the world goes black. I have severe Tonic Clonic seizures that last 5 to 20 minutes, and are often recurrant up to four times in one night without my regaining conscious. This is also known as Status Epilepticus - "a life-threatening condition in which the brain is in a state of persistent seizure. Definitions vary, but traditionally it is defined as one continuous, unremitting seizure lasting longer than 5 minutes, or recurrent seizures without regaining consciousness between seizures for greater than 5 minutes."
I don't know what I really look like during a severe Tonic Clonic seizure, but my parents have done their share of crying and explaining it to me. I jerk around, my eyes roll back, and blood drips out of my mouth due to the biting of my cheek and tongue. My lips turn blue and I have almost died at least 6 times I can personally remember. It isn't very funny at all, which is why I hate Tonic Clonic seizures. You never know how bad a seizure is going to be. Thank God for the visual auras. I like to call them "God's little warning signs" because I am often in the shower before one comes. I'd easily die there in the shower alone without my visual auras. So in a way, these weird things are truly blessings.
So... Do you want my auras? Too bad. Go get your own!
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| And please, please, please... Don't forget the toes!!! My hands were just so shaky from the medication that it's truly a miracle these toes and fingers came out okay! |
ALSO - check out the fan pages for tons of cool stuff this month!!! This includes giveaways, cool facts to share with friends, fun Facebook gear to show your advocacy and/or support for others, and much, much more!!! And PLEASE - don't forget to send your awareness month photos to MandyKrzywonski@EpilepsyBlogger.org so you can be on the blog!!!
(EVERYTHING EPILEPSY!)
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grandmas, grandpas, nieces, nephews, step-fathers, step-mothers,
daughters, sons, step-daughters, step-sons, friends, best friends,
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(Hopeful words, videos, music, and more to brighten up your day!)
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God bless,
Mandy Krzywonski
(EpilepsyBlogger)
Your strength and awesomeness is amazing to me my friend! Since my kids can't tell me as much about what they experience with their seizures and auras, and doubly so because Logan has had his share of Status Epilepticus issues as well, I find your frank discussion about how it feels so important. {{hugs}}
ReplyDeleteps - you can have those auras, I really don't want them, no matter how beautiful they are :P
This is super interesting, thanks for sharing!
ReplyDeleteYou might find this interesting (or not...) but when I studied digitial image processing, there was a whole section on auras and how certain auras correspond to mathematical functions, allowing the same patterns of colours, dots or lights to be produced on a computer according to some algorithm.
I have never encountered "word" or "image" auras before - that's so weird, you're right! I'm somehow glad that it's beautiful as well as scary/a warning. Finding beauty in things makes life so much better.
This is a wonderful, awful description. Thank you for sharing it!
ReplyDelete