I have Hope

April 10, 2012

Today has been bad and boring. It's been so frustrating and complicated. OK let’s start with the beginning. I woke up this morning around 7:45, which is early for me, because I usually don't wake up until 8:30 or 9:00. I remember waking up several times in the night, I think I was seizing. Then I got ready for school. I got to school and I went up to my sewing class. The teacher asked me how I was doing and I said ehh... not feeling that great. (I told all my teachers about my seizures so they had some what of a clue.) Anyway I was working on a pillow case. The teacher said she had to go talk to another teacher, so I decided to go hang in the clinic. The clinic ladies were trying to go over my medical history. We ended up talking a lot about Lyme and stuff. After about 15 minutes they kicked me out, (even though I didn't have a first period.) I then decided to go to my math teacher’s class to talk to him about getting extra credit. I went up and got to his class and I was having an aura, but I said, it'll pass. My heart was racing and I was having a hard time focusing. During this time he was talking to me about the extra credit that had to do with taxes, but I don't remember. (The stuff I'm telling you is what I remember.) Then I was starring at him and he's like do you need to sit down and I'm like no. And then he kept talking and I was zoned out, and then next thing I know is, I'm saying "I'm going to pass out" and then it was just blank. (During these episodes, it's like I have an out-of-body experience or if I am dreaming.) Anyway, I remember when I woke up that there were a much of paramedics around. I was just think "great." They said they were going to transport me and I started getting mad, they talked to my mom and said not to transport me. I was so scared they were going to take me to the hospital. The next thing I remember was they were putting me in my mom's car. We drove home and I laid on the couch and took a long nap. My mom later told me what the paramedics told her. So apparently I passed out in my math teacher’s classroom and he knew about my seizures, but he didn't know they were like this. So then they called 911 and the paramedics came and did their thing. They said I was in and out. They said they lasted like 25 minutes. My mom said at one point there was a point were it was super violent. They took me on the stretcher and brought me to my mom's car and they followed us home to make sure I could get in the house OK. I was fine the rest of the day, just really bored. I have "tics" which is just like my body will jump or my head will go to the side. Well anyway, for the next three weeks my mom said she is going to stay at the house till I come home from school, so that if I have one at school she will be closer and easier to come and get me. I also found out today that I only need one more credit to graduate. So if my seizures get worse then I only have to take one class. 

Also me and my mom have been doing some researching on these non epileptic-seizures. (However when I was ten I did have epileptic seizures.) They call them that because they don't know what they are caused by (which in my opinion is generally the Lyme.) Well we think it might have to do with the vagus nerve. Vagal nerve fainting (also known as vasovagal syncope) is quite simply any loss of consciousness caused by the vagus nerve. The vagus nerve runs directly from the brain stem, in front of the ears and down the neck towards the chest and abdomen. It branches off in several places to provide communication with the brain to a number of organs, such as the heart and the stomach. Its main function is to direct blood towards the digestive system when food is eaten, but if it is overactive then the vagus nerve can take too much blood away from the brain, causing a loss of consciousness (vagal nerve fainting).

 Or it could also be Convulsive syncope. Not all convulsive episodes are due to epilepsy and a number of these have a cardiovascular cause. Failure to identify these patients’ delays the provision of adequate therapy while at the same time exposes the individual to the risk of injury. Syncope is often accompanied by tonic or myoclonic muscle activity. Myoclonus is usually brief. The term “convulsive syncope” specifies a common variant of syncope that is accompanied by tonic or myoclonic activity. Syncope myoclonus may manifest itself as anything from a single twitch of the mouth to a storm of violent jerks affecting the entire body. Tonic muscle activity during syncope typically consists of head and body extension with either flexion or extension of the arms and sometimes clenching of the fists. Syncope may also produce complex movement including, head turns, head raising, or sitting up while being unresponsive. Vocalization is in the form of moaning or growling are common. In some subjects, visual hallucinations were restricted to a perception of gray haze, colored patches, or glaring lights.

I do not believe these are due to physiatric problems. Yes, sometimes I’ll have an episode due to nervousness, and I’ll stay in one because of stress. But I do not feel like this is physiatric. I may have one of these two conditions or both but I am most positive it is from the Lyme. And once the Lyme is taken care of then these episodes will go away.

Well I decide to go to school tomorrow. Cross my fingers nothing happen. I just get a lot of "tics" tonight. Hopefully just that and no seizures. I like school and want to go and be with my friends. Pray for me.



April 11, 2012



Sorry there are two updates on this one, but I had a hard time with my internet last night. Today was not so great either. I went to school, but as I was in my math class, at the end of the day, I got an aura (extreme fatigue.) I came home and slept. I went to sleep at 2:15 and woke up, thinking I had a 2 hour nap, but looked at my clock and it said 2:44. I’m like oh my. I haven’t been sleeping well. I think I have seizures during my sleep because I wake up often during my sleep confused. Today I also think I fell. I woke up with my head under the piano in a pool of vomit. I don’t even remember. I told my mom. I sometimes wonder about my safety, how I could’ve choked. I know my mom is super protective about it, and is trying to give me some freedom about it. It is not as much as I like but what can I do. Tell her not to worry? That’s what parents do. I am still having tics. I am not sure what’s causing them, probably my screwed up brain.




Let’s look back:

When I was a baby maybe 1 or 2 years old I had a high fever. Like 104. Then when I was 9 or 10 years old I started having absence seizures. They tried a bunch of different medication but few worked or made me like a zombie. They tried a drug called Lamictal. It helped and I was on it for a year. I slowly got off of it and the seizures stopped. I was 14 years old when I was bite by a spider? (which we later discovered it was a tick.) When I was 15 years old I started having nerve pain (still do) and was diagnosed with RSD (a nerve condition.) When I was 17 years old I was diagnosed with Gastroparesis which is a condition that has to do with the nerves in your stomach to contract making food pass through your system. The end of 2011, I started having non-epileptic seizures. Tests were done but now one could find out what it was. Doctors told me I was crazy and said I was making it up. I then went to see a Lyme doctor. She did 3 Lyme testing and I had 3 positive tests. I was diagnosed with Lyme in 2011. I developed not being able to swallow in the next few weeks. I have talked to my doctor 4 weeks ago. She put me on Lamictal, again, which has helped my swallowing. She knows that my seizures are due to Lyme, because many of her other patients have the same symptoms. She said that if the mediation doesn’t start working then she will put me on something else. I am then going to start the Lyme treatment once I get the inflammation all out of my body. She said it could be 2-3 months. She out me on another multivitamin, (which smells terrible.) and is giving me Melatonin for me to sleep.



Hope that wasn’t a lot to process. Hope that’s the key word tonight. I have been telling a lot of people to pray for me, saying that I don’t think this will ever end. I have been reading my Bible and been praying and asking God why am I going through all this, since I’ve been going through a lot of other things as well. I can’t understand it. He has showed me this week that He will keep me safe, and never forsake me even through this trial. He has given me so much peace about the whole ordeal. I am also appreciate of all the people who have been praying, people who have helped me through my seizures, (including those who have caught me!) Thank you, Thank you, Thank you!


Hope is like a little light, even the tiniest bit guides us through the darkness.



Love always,

Kari