Video EEG - Day #3-5

Shortly after my first night of sleep deprivation I had my first seizure. The only problem is that it was in my sleeping hours, so we had to continue trying to force more seizures throughout the day. This was unsuccessful, so after the 2nd day, we decided to give it a break until the 3rd day. Little did we know, we wouldn't have to wait much longer!

I was lying awake in the hospital bed around 1:45am on the 25th of this past week, having been off my medication for 36 hours and waiting for my 2:00am - 8:00am sleep deprivation wake-up call. I thought I would try to get some shut eye since I had fifteen minutes left, and was all of the sudden extremely exhausted when only 5 minutes prior I had energy like the Energizer Bunny.

What happened next? You can probably guess, of course - I went into a tonic clonic seizure (also known as a grand mal to some people). I don't remember anything else about the situation, but it sure was a tonic clonic and it struck me down in the worst way imaginable. The most painful one I have had in about a year now... Makes me feel thankful for the tons of seizures that I have on a daily basis. This seizure was nothing compared.

I awoke to my two night nurses vacuuming spit, blood, and tiny chunks of my tongue out of my mouth. I bit the side of my tongue off again like I always do during a tonic clonic seizures. One held my hand and assured me I would be okay with what appeared to be tears in her eyes. I was so confused about what happened, because I didn't even remember how it started. I didn't even remember hitting the "seizure" button that we're supposed to hit before a seizure strikes or when we feel funny.

"Seizure Button"

I felt so childish as I cried for somewhere around two hours because of the frightening happening and the intensely painful headache that captured my entire skull, all the way down my neck. I begged to call my parents, in which I did. I cried when they answered and begged both my mother and my father to come to the hospital to be with me. They were unable to come be with me, as the hospital is all the way across town. But I truly hoped they'd make the trip to be with me.

I forgot about everyone that I knew. I forgot who my sisters Jessica and Eliana were. I forgot who my brother Jake was too. I had even forgotten who my handsome boyfriend was until an entire day later. The only ones I could remember were the father and mother who were with me from the start of my life. I only wish they had come to be with me.

With an injection of Lorazepam and another injection of pain killers for the terrible migraine I suffered, I felt in peace enough to be put to sleep. The doctors didn't bother try and keep me awake from 2:00 - 8:00am. At that point, there was no point! So I slept and slept, waiting only hours to do this all over again. Thankfully there was no going unconscious or biting of the tongue.

I was injected with a dye that would color the specific area of my brain in which is the cause of my seizures. The dye showed that my left temporal lobe is to blame, but my team of doctors (all of the sudden) have many more questions. They doubt that medication alone will ever be my cure, but they are not 100% set on surgery like they were once.

After I was injected with dye I was given a dose of Lorazepam and the rest of the evening was easy breezy. I got a brain scan so the doctors could see the parts of my brain colored by the dye, and my sweet boyfriend came to see me Thursday evening around 9:00pm and we laughed watching Star Wars in the hospital room.

I was embarrassed for him to see me covered in wires, glue, needles and as pale as a ghost... But Rafael has outdone himself as far as making me feel loved and comfortable. I enjoyed seeing him after all of the pain and terror of a trillion seizures.

Today, Friday the 27th, was less trying on the body. All that was required of me was a double dose of medication and sleep as the tech team monitored my discharge seizure activity until about 6pm. I had one more due scan without the presence of the tonic clonic seizure - so the doctors could see the difference in my brain on a normal day.

I didn't walk out with any reassuring words. I wasn't told that I would "for sure" be a candidate for brain surgery. This was a bummer - I won't lie to you. Nonetheless, the doctors "would like to believe that" I am and further testing will be done this month. I was upped another 1/3 of a dose of my Felbatol and I am FINALLY OFF OF MY KLONOPIN!!! It feels so good not to have to depend on that drug anymore.

I would like to share that the doctor isn't psyched about having me completely off of Klonopin as it was helping slightly with insomnia and anxiety - but I'm determined to go on without it. He insists that now I am without anything to control my insomnia I must avoid computer usage past about 11:00pm. So I will be having pre-scheduled blogs once agin.

I will have some of the regular "out of nowhere" blogs, but they will be less often and only for extremely important events or when I have extra time. So be sure to visit the upper left side of this blog site and enter my mailing list to be automatically updated. No junk mail, no spam, just ONE measly e-mail update when I make a new blog post!

Other than that, I still take 1,200 mg of Trileptal a day. Nothing has changed as far as that goes. But we are discussing changing me to entirely different dosages or even medications. (Felbatol isn't proven to be 100% safe for young fertile women at the moment - it's still up in the air!) I'm quite nervous about changing medications again. Especially since all the doctors agree that they highly doubt medication to be my cure.

This is all I have for now, but I'll keep y'all updated!!!

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.

I can finally sleep!

Hey everyone! Today I'm feeling a lot better than I've been feeling, so I made it a point to get online and give a little update while I have the time. As you all know I made a big switch from one of my medications to another one. (Vimpat to Felbatol). Basically the withdrawals were horrible (they are still a little bad actually...). I had extreme anxiety attacks, tremor, nausea, vomiting, loss of appetite, migraine, and probably the worst case of insomnia that even I have heard of. The vomiting was crazy... I always thought that the term "projectile vomiting" was something that was only in movies until I got off of Vimpat. I know this is totally TMI, but I literally threw up "at" my wall. Thankfully we had water resistant paint in the bathroom and I was able to clean it up. I was used to throwing up almost once daily while on Vimpat, but this vomiting was several times a day and just horrific. I thought I would suffocate or choke because there was no letting up.

The nausea and loss of appetite is still apparent. I lost 10 lbs, which I would imagine was all water-weight since I can't tell except that my pants are a little loose and my face is less puffy. I have actually had to set an alarm on my phone to remind myself to eat 6 times a day or else I literally forget to eat because I have no appetite for food whatsoever. I have had to also make myself eat some sort of meat once a day because I have been looking almost green/gray in the face. Food pretty much tastes like cardboard to me now, and it's depressing because food is a great passion to me.

The insomnia was the worst side effect of them all. I got 3 hours of sleep at the most each night. This led to me being extremely exhausted, both physically and mentally. I had panic attacks because I couldn't sleep and I felt like I was going completely out of my mind. I started to almost dream while I was awake, which is by far the weirdest thing I have ever experienced... okay, maybe it wasn't the weirdest. But it was definitely crazy. The lack of sleep led to me having 6 of the more serious seizures on two different occasions. I was almost thankful for this because I was able to be tranquilized, and I slept for 2 days straight. I finally got my sleeping pattern under control after forcing myself awake for entire days at a time.

My visual seizures have gone from hundreds to about ten a day, however they are much longer. They last anywhere from a minute to sometimes 5 minutes. If any of you readers are new, I consider auras and visual seizures two different things. Auras for me are when I get weird tastes in my mouth and see colors. The visual seizures are a little more complex and involve hallucinations along with symptoms of a simple-partial seizure. My auras have increased a lot. Throughout the day I often get sensations in my sinus area that are a bit tingly, and a windex type of taste. I have also had an abundance of absence seizures and I have literally been running into walls and I fell out of the shower again. I think I have also been having the type of seizures where you start randomly walking around, but I can't confirm this because no one sees me. I think this because sometimes before I run into a wall I wasn't actually walking anywhere, I would just be standing.

I decided that since I have been this ill, I needed to quit my job. I didn't quit completely, but I am going on a medical LOA (leave of absence) until May, when school is over. This way I can rest and focus on getting better. I am actually really sad about this because I love my job so much and it was my last way to socialize since I had to drop out of school and start on home schooling. I guess that work can wait a while though. I'm a little angry because I have a stupid $200 bill that I need to pay off and I have like $65 sitting in my account at the moment. Hopefully I can find some way to pay that bill off before I start ruining my credit.

After all this bad news, I do have a little good news. At least I think so. When I get those auras, that usually means a Grand Mal is on its way. Every time I start having auras I have been using my magnet and they literally stop for a good period of time. I would call this a bit of success since I haven't had an actual Grand Mal yet. Just trying to be positive, I guess.

Blegh! Well I guess I'm in a bit of a rut but I'm trying to get better as fast as I can. Every time I complain I think about a little girl I saw in my doctor's office who was in a wheelchair and headgear because of her seizures. She had a little tiara glued to the top of her headgear and she just had the biggest smile. It just makes me feel so weak for saying that I don't feel good. Somebody always has it worse, and a lot of the time those ones are the strongest. I mean I don't want to overestimate the health that I have because it isn't wonderful, but I am blessed to be able to walk around without headgear.

Anyway, I have to go give my puppy a bath, submit some homework and get ready to pack up and stay with my cousins this weekend. We are getting tile installed in our home so I need somewhere to rest without the noise. I hope you all have a great weekend and I wish you the best of health. God bless!

Day #51 - No Grand Mal Yet! (And a Few Other Random Things)

I'm happy to let you all know that I have not had a grand mal yet. This is good news but this is also bad because I really feel that one could be coming at any moment. It's hard to tell because sometimes when your medicine is working well your seizures don't ever reach their full duration... so maybe my VNS is working? I haven't used my magnet much because by the time I pick it up the seizures are over or I'm in too much of a trance to reach for it. Either way, no grand mal yet, so I rejoice for that. However, I have continued to have some simple partial seizures but I don't mind those too much.

Lately I've been leading somewhat of an active life compared to this past year. I've started waking up earlier, and I'm able to stay awake longer. My weight has unfortunately stayed the same even though I've stopped snacking. I exercise daily which has seemed to help with my blood pressure and I no longer have that annoying ringing in my ears when my blood pressure rises.

At the moment I am babysitting a friend's huge golden retriever named Falco... he's just the funniest dog. He is very obedient which is awesome because our new puppy Rudy is the total opposite. By watching those two today I have notice that Rudy has been picking up a lot of behavior from Falco and I'm so glad to see that. My other dog Mia, a chihuahua, does not like being around either of them. She is very territorial. Rudy has been giving me a run for my money the last few months and his behavior is always horrible... hopefully Falco can show him a thing or two.

At the moment it's almost 98 degrees outside and even with our AC on 73 I'm sweating like a dog! I had a little "me time" outdoors today and got a tan which was very relaxing. The dogs were great about it and laid out in the sunshine right along side me. My favorite part of summer is getting a tan and going to the beach, which I will be doing in exactly 6 days!

Now that we're on that subject I just wanted to let you all know that I wont be posting for about two weeks while I'm gone. I got a lot of e-mails with ideas of what to post on and I'm just not sure because I got a lot of great ideas! As you bloggers can probably see, some of my followers don't actually own blogs of their own or even google accounts so they tend to e-mail me or twitter me more often. I would love to hear some ideas from my actual blogger followers. So far I got these ideas:

(By the way, your ideas don't necessarily have to be centered around Epilepsy. People with Epilepsy do most of the same things non-Epileptic people do, only with caution!)

- A post about some of my favorite products such as skin care, hair care, makeup, headache medicine, etc. This was one of my favorites because an off-blogger follower asked me to write a post about products that I use all the time, and why I like them so much.

- A post about my family. I get a lot of e-mails asking about how my family feels about my condition and if I don't do my next post on it, I'll do one eventually because my family is a very important part of my life.

- A post about ways to deal with anxiety. I added a few of the things I do in different posts but I've been asked by two people that suffer from occasional but serious anxiety (just like me) to do a post on things that I do to help escape the horrible feelings that anxiety can bring on a person.

- A post talking about different organizations and websites in the U.S. that are devoted to Epilepsy. This is also a great topic.

Feel free to vote on one of the topics above or leave me feedback on a topic that you would like to see. My e-mail is mandykrzywonski@yahoo.com if you would like to reply that way but I love to see comments on my blogs so I can see who is actually reading! The topic with the most votes will become the topic of my next blog.

Lastly, if you haven't already, please check out my FaceBook page and my Twitter! The twitter is brand new so there's not many posts yet but in about a week I plan to get on and start adding more stuff daily.

FaceBook: Your Epilepsy Blogger Page

Twitter: EpilepsyBlogger

Once again, thanks for all the feedback. My mind is blown because I never thought I would get this many viewers. It's just so awesome! God bless you all and have a great evening!

Your Epilepsy Blogger,
Mandy Krzywonski


This is a photo I found from an anonymous photographer of the oil spill that is ruining the lives of so many animals. This is something I care about very much because everything about the ocean means so much to me and this just shows the horrible job that some people do to take care of our earth. I understand it was somewhat of an accident but I encourage everyone to donate and do their part to clean up this huge mess.