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?

Married... with Epilepsy: Tyler & Stephanie - Part Two

By: Stephanie 

(Click here to read part one, by Tyler!) 

Introduce yourself and tell us about you and your spouse.

My name is Stephanie and I am a 4th grade teacher. I recently graduated from a Christian College in Florida. I have lived in Florida most of my life. After marrying my wonderful husband, Tyler, we moved about 45 minutes away from our college because of his job. 

Tyler and I enjoy simple things like going to the movies and watching tons of them at home and playing with our two dogs. We also love going out to eat and traveling when we get the chance. We are hoping to go to Comic-Con this year and the Macy’s Thanksgiving Day Parade next year. One day we hope to travel to Australia.

How the VNS Has Changed My Life as a Person with Epilepsy

When I started this blog, about a year and a half ago, my intentions were to tell others all about the VNS device. After a month or so, the VNS started to blend in to my daily life as if it weren't even there; leading me to totally forgetting to write about it.

Duality - Finally Finished!

I know it's been a great while since many of you have heard from me. For your enjoyment, I have tons of health updates! [both good and bad.]

So, I recently met with my doctor, just last week actually, and I have a lot of news to share. My first bit of news is that I have managed to come down on one of my medications (Felbatol) from 3,600 mg a day to only 1,800 mg a day without any severe seizure increase. However, I have been having a spike of the smaller simple-partial seizures. We can't pinpoint an apparent cause for these seizures, but we do have an idea.

Before all this Epilepsy was diagnosed, my doctors had discovered a small pituitary gland tumor. It was decided to be "benign" since it wasn't growing. Unfortunately, both my family practitioner and my Epileptologist have a hunch that it may be growing a little bit. It is pretty serious, in a sense, but not deadly (at least in most cases). The surgery is quite simple thanks to modern technology, and it can be removed in less than 3 hours through my nostrils!

The hunch started when my menstrual cycle became extremely irregular about two months ago. I have been bleeding pretty much every other day with no rhyme or reason to it. I was bleeding what can be equal to about 1/2 a cup (think "baking a cake")of blood per hour. This is pretty serious. I had to get back on birth control pills, which didn't help whatsoever. It usually helps a lot, so that's when I knew something serious was going on.

Then, my armpits started to hurt very bad. They skin under my arms is even turning a brown/purple/red color, which is quite out of the ordinary for myself. I have very pale and almost porcelain skin underneath the makeup and the tan, so this isn't something you would expect. Apparently, the pituitary tumor (if it is growing or not) can be affecting my hormones in a way that would cause all of these issues.

Also, remember the acne problem? Well, it's still there! Even after changing medications. This is also a common symptom of a hormone imbalance and is very prominent among women with growing pituitary tumors.

So my Epileptologist has me scheduled for an MRI on the 22nd, and tons of blood tests before hand due to my kidneys and liver that seem to be having some acute issues.

My VNS implant has been turned up to a 2.5 level out of a targeted 3, and it is so uncomfortable I could complain about it all day. But it is definitely helping with the Grand Mal seizures, so that's all I care about!

All in all, I want to say I'm doing a lot better, but I'm not sure what to think of all this. On the bright side, one of my paintings is done and she's called Duality. This painting is dedicated to rape victims everywhere, and I hope you like it. She'll be going to a competition this Saturday, the 19th so pray that I come out with some recognition!



God bless you all and I wish you the best of health!

- Mandy Krzywonski

Day #42 - This Boring Life of Mine

My totally awesome strawberry cupcakes (yes, it's hard to believe, but I managed to make these look pretty).

Thanks for all the feedback via e-mail, BlogCatalog, Facebook, Twitter, and right here on Blogger, of course. I apologize for not being able to get back to everyone as fast as I would like to. Apart from all the anxiety attacks I've mentioned, I came down with a virus or "cold," if that's what you call it - and it was horrible. I couldn't even walk I was so sick! Thankfully, it progressed fast and left just as fast. I still have a horrible dry, hacking cough that hasn't gone away. I owe it all to hot tea, steamy showers, sleeping in, and and the dozens of medications I took (which probably wasn't too good but I was in desperate need!).
I'm pretty positive I either picked it up from one of Sullivan's (my boyfriend) friends or someone at work...though, I'm honestly not sure who that would be and how that would happen. I'm a total germaphobe at work. Last time I went in to work I must have seen a hundred people stocking up on cold medicine and Vicks because their children had strep throat! Can you believe that? It's pretty much summer right now and kids are contracting winter viruses! My immune system must suck more than I thought because my boyfriend hasn't come down with anything yet.
The anxiety itself has quieted down for the last two days. I didn't talk to my boyfriend much because he worked, so I think it cleared up the sort of grudge we had between us. I guess I would call it more of a frustration because we didn't exactly want to be holding a grudge. I've had some time alone to rest my mind and spend time with my two dogs since I've been sick and couldn't leave the house at all. I wont doubt it if the attacks come back, but I'm positive they couldn't be any worse than the ones I was having previously.
A little update on my seizures - I have not yet had a big seizure a.k.a. "grand mal" seizure. As I mentioned before, I'm back up to 75% of my prior dosage, rather than being at about 1/3. I started to notice too many auras and visual seizures, and to be completely honest with you, I was scared out of my mind at the thought of another grand mal. Now that I'm back up on my meds, I rarely have to use my magnet but maybe once a day. I also test the VNS every once in a while because I've gotten so used to it that I seriously can't even tell if it's really on! This is probably a good thing but it bothers me. I'm the kind of person who always ends up with broken electronics.
Take my cell phone for example. I bought a Palm Pre Plus for my birthday on April 21st. I had to get a replacement two days later because the hardware was defective. Here I am on the 15th of June and the third phone that I just turned on 4 days ago is messed up as well. I treat these phones like newborn children. I would rather have a crappy Samsung flip phone. You can drop those things off the 13th floor of a building and I guarantee you'll at least still be able to use it. I still have one somewhere in this house and I might just re-activate it soon.
Yes, I've realized that this blog doesn't have more than a small paragraph about Epilepsy...but hey, it's my life :). Gotta love it. Plus, I'm bored out of my mind. The twins are running around the house half naked because they were doing god-knows-what with water. I'll probably have to go clean something up, but why not stall a little? It's summer.
At the moment I'm actually checking out Texas Tech University. I'm starting online classes soon and I'm trying to figure out which ones I'm taking. That way, I can catch up on what I've missed and start on extra classes on campus next year that can go toward college. I'm going to take some business classes because my dream is to own a bakery! I thought about the whole "chef" thing, like owning an actual restaurant...but eh. Who doesn't own a restaurant anymore? If you live in San Antonio, you know what I'm talking about. I have at least 7 friends that I can name whose parents own a restaurant, whether it be a successful one or not. But who knows. I could do it if I wanted to. Maybe a restaurant/bakery? I'm just freaking out because I'm trying to figure out my career options so I'm going to stop blogging now before I seriously go on and on and on and on and bore you to death.
I hope you all have a blessed day and sorry for this horribly boring life of mine!

- Mandy Krzywonski

Day #8 - VNS Device Activation

Today is day #8 of my VNS Therapy experience. About an hour and a half ago my VNS device was activated for the first time. It was really interesting (at least I thought so). I sat in a chair next to my doctor's partner as she pulled out the communicative device or as she called it, "the wand" which communicates directly to the implant. When the orange light started to flicker on the wand, I knew that the device was connected. She programmed the device for about 5 minutes, and then activated it. She set me for stimulation lasting for 60 seconds with 12 seconds in between. Unlike what I have heard from others, I barely noticed that the VNS was on unless I tried very hard to sense it ticklling in my throat. I agreed that it was okay to take the stimulation up to a higher dose. This time I could definitely feel the device working. It feels like a slight tickle along with some tightness to the throat. It is not too bothersome to me...yet. I think that over time I can learn to ignore this sensation. I noticed that when I talk my voice crackles or breaks up VERY slightly. A person would not notice unless they were specifically looking for this characteristic. My doctor said that I reacted very well to this therapy compared to some other people.

When I tested out the VNS stimulation using the magnet, I had some difficulty. It's hard to use, but my doctor said over time it will become easy. You have to give a slow stroke over the machine. Depending on the model, you may either have to move the magnet directly over your chest from right to left. In my case, I have model 103. So I swipe the magnet from the top of my chest slowly to the bottom. I'm sure I will get the hang of it because I have seizures daily.

I am thankful that today went well! Some people strongly dislike this treatment, but it's working out great for me so far. I will be blogging constantly to let you all know how it's going. To recap the current side effects there is: a feeling of tickling, tingling, or tightness of the throat during stimulation. But for me this is very light and unbothersome. It's hard to sing, so if you are in choir be sure to tape the magnet over the VNS implant. Doing so will stop stimulation, letting you use your voice as normal. So far this is all. I will also be decreasing my medication dosages a bit, so let's see if this VNS does any magic for me.

Day #7 - VNS Surgery Recovery ( & All the Delicious Details of the Days Leading Up to)

Photo called "Hope is Burning" by Amanda Krzywonski (me).


If you have read my first blog, you know three things. You know about my difficult struggle with Epilepsy. You know about my choice to try VNS Therapy. And lastly, you know how much of a horrible blogger/writer I am.

Today is day number siete or seven of my VNS implant surgery recovery. Isn't that a mouthful to say? I am blogging about this because I know there are tons of other curious people who are contemplating this form of treatment for their Epilepsy.

On May 5th (seven days ago) I went in for the device implantation surgery. I will not be sugar-coating anything, whatsoever, in my blogs so I will go right out and say that the surgery was the WORST experience that I have gone through in my life. I have had many horrible things done in hospitals, believe me. Now I don't mean to scare you off, because it very well could have been the anesthetics. When I got out of surgery my voice was very hoarse, and almost gone completely. This bothered me a lot at first but toward the end of the day it got better. The worst of the after-effects was that I literally could not sit, stand, eat or even drink - without vomiting. The nausea was the worst of its kind. I resorted to this by sleeping for an entire two days. I recommend that you do not try to eat at all for the rest of that day and only sip small amounts of water or ice chips afterward. And PLEASE, listen to me if you are seriously considering this surgery. Eat only soup
and a few crackers for a few days afterward. This means no pizza, pot roast, cupcakes, cookies, etc. You will have difficulty urinating and
having a bowel movement. I recommended eat fruits when you are ready, and Fiber Choice tablets are great.You must try to go to the
bathroom or you will feel very bloated or "stuffed" in the abdomen to the point where it might be unbearable. After you have gotten over
these things (about 3 days) you really only need to rest. You can shower after 2 or 3 days depending on your scars. Don't turn your neck
too far, lift or tilt your head back, or extend your left arms too far. It will hurt and you can damage your vagus nerve. Today is day seven
for me. I can eat again and go to the bathroom perfectly! :) I am not sure if I should have, but I went out for a walk and did about 30
minutes of cardio. I am struggling with my weight due to my medications. I am currently taking Vimpat, Trileptal, and Seroquel. I have
literally gained 6 lbs since the surgery. I am not sure how that is possible but it happened. My advice from a friend is to carefully start lifting
5 lb weights around the 4th day to burn calories and help your arms and the muscles surrounding. STOP immediately if you feel too much
pain and wait a while. I am generally feeling good today except for some exhaustion from the medication and a slight pain in my neck. I can
feel where the lead is connected to my vagus nerve and its tugging very hard when I move my neck in any way. So I'm trying hard to be
careful. I'm worried that this pain isn't normal considering I couldn't feel anything under the incision until now... but I will get back to you on
that. Tomorrow I am going to get my device turned on around noon, and you can count on me to blog about how it feels and the side
effects that are most noticeable.
I feel a little stupid for worrying about fashion when it comes to the VNS magnet that you have to wear on your wrist to activate and alter
the VNS settings... but I am. You will notice that in the "goodie box" that you receive after surgery, they give you two magnets. One
magnet comes with a horribly ugly black strap that is basically a double wrap around black piece of fabric with velcro on the other side. The
other magnet has a clip on piece so you can keep it on your belt or pretty much wherever. I thought the clip-on piece was quite nice, but I
had to do something about that ugly black strap. I found a GREAT site for some high-quality watch straps. Some are waterproof as well
which is great. I purchased a floral designed strap. These straps also use velcro but I have found them to be much tougher. A lot of athletes
hikers, and tons of famous sportsmen use them simply because they are invincible. They just don't fall off. The band is called "THE BAND".
Go figure. It's made by Chums. Check it out!

I'll get back to you all tomorrow about how I'm feeling after my VNS gets activated! Sweet dreams :)

Intro: My Life as an Epileptic Teenager

I am new to Blogger, so for my first blog I will be writing a bit about myself. My name is Amanda, but you can call me Mandy. I am 17 years old and I live in San Antonio, Texas. One of the main issues in my life today would be my life struggle with Epilepsy. I do as much as I can to alert others about Epilepsy and what it is. There are many misconceptions about this condition or disease. I have struggled with Epilepsy for the past (almost) 5 years, but I am refusing to let Epilepsy rule my life... which can be a bad thing sometimes. For instance, when I decide "Heck with it, I'm going to the amusement park today even though I'm having seizure symptoms!". Like I said, I'm always trying to live life as a normal teenager.

I am a confusing case, because my doctors have never been able to pin-point the exact area on my brain that caused this whole mess. I had my first seizure in 7th grade; I was in the back of a friend's car on our way to her basketball game. We'll just call my friend Suzy... Anyway, Suzy and her father basically knocked on our door at home, and left me there. Not waiting to see if I was okay. Just in a rush to get to some stupid YMCA game. How sweet? I know. After that day, many other problems arose. Hormonal issues, migraines (some of the worst you could ever imagine), nausea spells, etc. I would love to tell you all of my problems but that would take up a whole screen :). Eventually I started having random seizures. At first I was experiencing colorful "auras". "These are only migranes," as described by one of my most unhelpful neurologists, "nothing to worry about". We weren't getting the answers we were looking for but me and my family grasped to any information on my health that we could. He put me on a great big cocktail of medications, but nothing worked. Numerous MRI's and other tests were done but nothing showed up except for a red herring... A small pituitary tumor that turned out to be something completely harmless. We were handed to doctor after doctor, even out of city. Each one, washing their hands of me and passing me on. I lost weight, gained weight, developed rashes and blisters. Each medication ahd it's own horrible side effects. Some of the worst were hallucinations, anxiety attacks and extreme depression phases. I began to have larger seizures. They started with staring, licking of the lips, and soon after anyone noticed that I would scream and go unconscious, convulsing on the bathroom or livingroom floor. By this time it was halfway through my 8th grade year. I had to become a homebound student because the seizures became so frequent. Still to this very day I am homebound, and it is already my 11th year in high scool. I have tried to return as a full-day student but I am really just too sick. The medication has completely ruined my immune system making it very easy to catch whatever colds that are going around. This is too much on top of being an Epileptic teenager. Finally I was passed on to Dr. Tomasovic who gave us a dead on explanation. It was indeed epilepsy... As if we didn't already think this. He started to help by putting me on Trileptal. I was seizure free for almost 3 months, but when the seizures came back, my doctor became frustrated because no matter how many MRI's I took, he could not find the cause. He referred me to my current (and hopefully last) Epileptologist/Neurologist, Dr. Szabo, who opened great doors for me. I no longer had to sit on the examination table trying hard to explain my symptoms without sounding like a complete idiot. He had seen it all before and this was reassuring. We have still have frustrations with the medications, and many hospital visits, but he has always taken great care of me. I thank God for this everyday! He has recently chose to give me the options for two different surgeries. One would be invasive brain surgery (which I have turned down). The other being VNS surgery. I will tell you right now that my seizures are less frequent and smaller, but my big issue is that the side effects of my medications are unbearable and jeopardizing my health. I have gained a significant amount of weight, my blood pressure gets high, and I have been experiencing bad anxiety attacks and depression. With that being said, I obviously agreed to VNS Therapy, and I had the VNS implanted last Wednesday, on the 5th of May. To read more about my recovery check out my next blog!!! I will be posting as much as possible about this new experience, and hopefully my information will be significant to someone out there! You are not alone!