Insomnia and My Other Health Problems

Hello all,

I've got work at 9:00am tomorrow... But I can't sleep, which isn't unusual. Insomnia is common with Epilepsy, and extremely common with a girl named Mandy Krzywonski. I figured I would write a quick blog to just let everyone in on how my health is right now. I get a lot of e-mails and tweets from you all, wondering how I'm doing, and it's hard to tell you all so quickly in a 160 character tweet or an e-mail from my cell phone. So what better way to do it than on Blogger?


As far as seizures... Well, they're seizures. They're unexpected. They're terrible. They don't care what time of day or night that they want to pop into your life. They don't care if you work in the morning, or if you're getting ready to go on a date with your boyfriend. And the most certainly don't care if you don't want them around.

Aside from the 10-100 small seizures I have a day, the tonic clonic seizures have started to come back. I have had one, full-on tonic clonic. It was very short for a tonic clonic seizure, thank God. But as I mentioned, I am simply just awaiting the longer more severe seizures that lie ahead. I know they're coming, and I'm preparing myself as best as I can.

The larger seizures seem to happen, as usual, most often in the shower or right after a shower. I honestly have no idea what it is about my bathroom that makes me have these seizures. I've gone from wondering if it's the temperature of the water (heat sensitivity) to the lights in the restroom. I've adjusted both, and neither seem to be the problem. I don't listen to the radio in the bathroom, so I know that isn't it either. I just have no idea... and I don't even shower at the same times of day! So it makes absolutely no sense, whatsoever.

I did have one seizure, which seemed to be what I like to call an "undeveloped seizure". I was walking into my mother's room, a little stressed from some personal issues. Suddenly I laid myself on her floor, face down, as a seizure crept into my body. It should have been a tonic clonic, but with the use of my many different breathing techniques, and my great ability to somehow concentrate through the madness of it all, I was able to stop it from fully developing.

What's funny is that during my seizure I started to go through this memory of my sister, who was age 7 or so at the time, telling me a story about her best friend Olivia's horse. It was so odd, because on no other occasion would I have remember that one memory until that seizure struck. So in a weird way, it was a bit of a pleasure to remember those simpler times. It was also remarkably fascinating to see how the brain holds so much memory, and can pull it out at any given time.

All I remember, aside from that, is a tingling feeling in my nose and that awful, AWFUL taste/smell of windex and copper. Just like a penny was in my mouth. I'm so glad that almost everyone reading has Epilepsy, because when I tell people who don't have Epilepsy about these things... Well, they look at me like I'm out of my mind. But this is real, and it's what I go through almost everyday.

Aside from the seizures, other things are happening. Something is very wrong with my VNS. It isn't that the implant is necessarily broken, but it will not react to the magnet. So when I try to swipe the magnet to activate it, it wont work. This is not good, because if I need to use it during a seizure, I cannot do so. It makes my mother so upset that we paid so much money for what seems like nothing.

I can also tell that some sort of damage is happening to my vagus nerve from the coil that is inserted into it, in which is connected to the VNS implant. (See below). I am having very severe breathing problems, such as humming loudly in my sleep and waking up because I can't breathe. My father could hear me from the upstairs today, humming non-stop for hours. There's nothing we can do about it, either, which is even worse. I tried using a mouth guard (the kind you use during sleep), and it did nothing for me.

My throat clenches up and spasms, and as it does this, it hurts extremely in the area where the vagus nerve is. You would have to have a VNS to understand just where that area is, but I can tell you that it is painful and really inhibits my ability to speak for long periods of time without having to clear my throat in an obnoxious manner.

The very last complaint is the affect that the VNS has on my exercise and singing. At first I thought it was asthma - afterall, I do live in San Antonio, Texas where the cedar trees take pride in making people miserable with allergies. However, after taking allergy pills and using an inhaler, I've realized that the pain is not coming from anywhere but the vagus nerve. As I jog, I feel it clench up and I make this awful wheezing sound that can be heard from blocks away. Similar to what happened during the 5k Run/Walk for Epilepsy event. If you read my article about that, I mentioned that this happened. I blamed it on the cold weather at the time, but now I know what the real issue was.

Singing, of course, is something that is affected no matter what. Your voice in general is affected by the VNS. But it has come to the point where singing is something I cannot do at all without being in great pain. This fact alone lets me know that something is severely wrong. Especially since a month and a half ago I could still sing like a superstar in the shower. Well, when I wasn't having a seizure, at least.

I recently went through a bit of what I want to call a "cold". I think it may have been a sinus infection, but my general practitioner is sure as can be that it was just allergies. I totally disagree with him considering all my side effects. I bruised in small spots the sizes of quarters ALL OVER my body. Underneath each one of my beautifully, red painted fingernails and toenails is black, bruised skin. Did I nub them on anything? Nope. They are just bruised. I have three bruises on my right knee, one on my shoulder, two on my left arm, one on my right arm, and a tiny, dime-sized bruise on my left cheek. Sounds like the lowering of my immune system to me.

I've had anemia since I was just a young girl, but it was mostly able to be controlled with iron pills and correct nutrition. But believe you me, when I come down with a cold, it doesn't matter what vitamins I take or what I eat - I just bruise as if I fell down a flight of stairs. It's awful.

So I'm not doing amazing, folks. I'm not. I'm not afraid to admit that, either. I'm also not afraid to admit that it upsets me. Although having 10-100 little seizures a day seemed like something you may be upset about... It didn't upset me. The fact that it was my only problem made it okay. Tossing in the problems with my VNS, anemia, a cold, and tonic clonic seizures is what has me upset. Hm. It's 3:00am. There's the insomnia again, as well.

Before I upset myself, I'm going to have to take some Melatonin pills and try to catch some sleep before work becomes 100% miserable. I hope you have at least enjoyed peeking into my life, although it wasn't good news. I do have some good news though...

Corey Glover liked my interview with Eric Miller, founder of the Candlelight Concert for Epilepsy Awareness! If you haven't read the interview yet, please click the link because it is an amazing Epilepsy love story! I think it's just so cool to have a celebrity posting MY blog post on their Facebook page! It's so awesome! You can learn more about him HERE, and be sure to find him on Facebook and "Like" his page for supporting Epilepsy and my blog!

 

Click HERE to "Like" my NEW page on Facebook! Get a live feed of beautiful Epilepsy love stories right off of your Facebook page, cell phone, or Facebook app! Who doesn't love these stories?

~ Mandy Krzywonski
EpilepsyBlogger