UPDATE + Mandy's Official Brain Surgery Date

Hello, my Epilepsy Family.

I'd like to start out by apologizing for not being on the blog. A lot has happened since my last post, and I am sorry to say that I may or may not be posting for a while. It truly depends on my seizure status. But I will do my best to stick around for all of you. I know many of you (especially the girls) were excited for the upcoming articles. I'm also sorry for lack of updates on Twitter and the Facebook pages.

I wanted to post today so I could share my seizure update with all of you. My Epilepsy is going through a lot of changes and it is all happening so fast. I am experiencing some very interesting seizures that not many people have. Therefore, I thought "Maybe some people are having my seizures, and don't know what they are. I'd better get on the blog!".

The first change is that the auras or visual hallucinations are coming from different areas of the brain as of lately. When I first experienced these, they came from (in my point of view) the upper right hand side of my vision. (Think of your vision being split into four sections. Two on top, two on bottom.) Now the images are being seen almost in the very middle of those four sections. This happened out of nowhere, to be honest. Scared the living crap out of me because I have been so immune to seeing images in that upper right hand corner, and I am not immune to having them anywhere else.

The next change is that my seizures are totally different in a million ways. The biggest is that I am having literally TONS of Complex partial seizures. They aren't my normal screaming and staring, though. They are now talking (as I mentioned briefly a while back in a few posts) and singing. Yes, I said it. Singing.

When I say I am singing, don't think of Somebody That I Used to Know by Gotye or an angelic opera song. It is similar to the talking in the way that I am rambling on in some sort of gibberish. Not english, not spanish. Just gibberish. However, there is a melody to the gibberish and it is repetitive. Actually a bit creepy. I can remember these seizures, as usual. But I forget the five minute chunk of time directly before the seizure starts and I honestly don't really regain that memory. And if I do regain it, it isn't for about a day or two.

The other biggest change is that the seizures happen mainly at night as of lately, and rarely (maybe one or two in this past month) in the morning. This scares me quite a bit because I think of SUDEP, which is more common in people who have seizures in their sleep and uncontrolled seizures.  According to my last EEG study, I had almost 90% of seizures in my sleep. Right now, I would put that at 99%.

It's odd because I can see the seizure aura starting in my dream. I'll be having some awesome dream about eating frozen yogurt with my darling, Rafael and BOOM - I see an aura of colorful lights and the Bing search bar. (I hallucinate mostly things from television, or my computer. Webpages are the most common.) I actually freak out in my dream, as if I am having a seizure in the dream. And then I wake myself up (I know when I am dreaming) to find that the seizure is really happening in real life. After that, they continue through the night and I sometimes get so scared that I end up just crawling into bed with my sister Jessica and staying awake until morning.

I have greatly limited computer usage lately. (Which I am sure is obvious.) So you think I'd hallucinate something different than the Bing search bar, or my Facebook home page. But I guess not. I honestly don't even watch television or movies that often. Once or twice a week at the most. That is, unless Rafael is in town visiting. Then I watch movies about three times.

My doctor warned me of these changes, though. Not necessarily all of the changes. He didn't tell me I'd be singing in a foreign gibberish, or that I would have tons of seizures in my sleep... and he definitely didn't warn me that I would be converting to Bing search bar. (However, I do like Bing a lot.) But he told me that I had a lot of scar tissue. He said that the medication would eventually stop working altogether. And he said I didn't have much time. That is why he is insisting on surgery.

I agreed, as I mentioned already many times. Surgery wasn't expected for another year, but Dr. Szabo wanted to get it done as quickly as possible due to how many seizures I am having. Now I am only about a month and a half away. The official surgery date, for those whom are so curious, is February 21st. February 21st will be the brain mapping date. Then, February 28th will be the official "brain surgery" or removal of brain tissue. Altogether it will be a two week hospital stay.

I can honestly say that I am scared out of my mind. I find myself crying almost everyday now. When my doctor said it would be a tricky surgery ("complex" was his actual word) something hit me, and it hit me hard. The thought of death runs through my mind, along with all the risks. My darling, Rafael said it best, though. He said "You need to get better. There's no turning back." And he's right.

The way my seizures are right now makes me extremely at risk for SUDEP or death from a seizure itself. Although the surgery most likely will not rid me of seizures, it will get rid of Tonic Clonic seizures and hopefully lessen the others. (I hope it gets rid of this singing crap because it is SO annoying. The hugging ones can go too!) But most importantly, it will make the medication more likely to work and bring me some success. So I can finally have a real life where I am not tortured day and night.

I am a worrier, though. So even though I know this surgery is for the better, I am still full of fear. I can't seem to stop myself from crying every day and night. I'm crying even right now. I feel pathetic, folks. So pathetic. I am scared of more. Scared of more seizures and the insane pain that follows. Scared of not waking up from the surgery. Scared of coming out of surgery with a drooping eye or having a stroke.

You would think that I, EpilepsyBlogger, would be a little more brave. But I'm not. I'm just like everyone else. Part of me wishes I had a best friend who was going through the same thing at the same time. Someone who I could cry WITH, and not cry to. It just feels like whining, even right now as I type on my own blog. It seems like everyone around me is just a rock, lacking emotion when I need it most. I almost wouldn't mind seeing my sister, father, or even my boyfriend just cry. Just to know I am not the only one crying here.

I'm so tired of this fight. I'm tired of being nauseated, having headaches, and being overly medicated. I'm scared of the seizures that are to come. And usually, when you're tired, you'd sleep. But even sleep is something to be scared of. I guess that's why I need this surgery.

So, saying that, maybe there's some things we have to get through on our own. No more leaning on friends, or running to family. We just have to bite our lips, close our eyes, and go through with it for ourselves. Whether it's being brave for surgery, or simply closing our eyes to shut out the frightening feeling before the Tonic clonic hits. We just have to try and be brave, and cry if we need to.

Until next time, I love you all. This may or may not be my last post for a while, so I hope that somehow I have touched your lives in a positive way and I pray that you all continue to be strong and carry on through your struggles. The same way that I have to be strong and carry on right now. If you ever feel scared, hopeless, or just plain tired, please know that Mandy is too. None of you are alone.

Love,
Mandy Krzywonski
EpilepsyBlogger