Money is Tight This Year

The new year is here. While it feels great to be done with last year, it also hurts because I feel the holes that are burning into my pocket now that insurance has restarted. No more "You've hit the deductible, so you're good to go!". We're back to pulling out all the cash, checkbook, and credit cards. 

Just got a call from my doctor's office letting me know that tomorrow's appointment will be a little more than $100, and if the doctor does a quick (2 minute) test on my VNS (Vagus Nerve Stimulator) it will be an extra $240. I seriously think I have just had a heart attack seeing these numbers again. And this doesn't even include the cost of my meds. I am hoping I can get some permission to come off of a medication or two...

God, please keep me calm. 

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 One

By: Tyler

Introduce yourself and your spouse.

My name is Tyler and I am a 23 year old Bible college graduate. I am a Christian Pastor in Polk County, Florida, married to my wife Stephanie who is 22. She is just about to graduate and is a 4^th grade teacher. We met on Facebook… well sort of. We both went to the same college, and I saw her walking through campus one day and thought “Wow! I want to meet her!!!”

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.

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!