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Thursday, June 27, 2013

EEG Results

I promised a blog about the results of my EEG and here it is...

I didn't hear what I expected to hear this morning. I saw written on the single results page the same word that I've seen on every results page of every EEG I've ever had - "unremarkable".

What does that mean? It means that there was nothing of interest in the results of my EEG. The EEG during which I had a seizure occur, still showed "unremarkable" results. The single page document even noted my remark to the person who administered the test - that I had "symptoms" during the test after the hyperventilating portion.

I was not myself today after hearing this disappointing and extremely shocking news. I had no idea how to feel. I was disappointed, angry, upset, sad... think of every bad feeling you've ever felt: I felt that all at one time this morning. (And they came back occasionally throughout the day.) I actually came close to tears a couple times this morning, because I thought that I would finally have some new information and instead I walked away empty handed.

What did the doctor say? A bunch of mumbo jumbo about why it possibly didn't show up, which sounded to me like a kid making an excuse as to why he doesn't have his homework done. Then he said to continue on the increased medicine dosage and let him know if I have any more episodes. News flash - the stress that I put myself through this morning after hearing this news caused at least one more to happen today. (I think it was more like 3 or 4 throughout the day. Small, but there.)

Then he said that if they continue, we can do a 24-hour EEG, which can be administered at home and I can keep a journal of any "events" that occur throughout the day. They will use this journal to look at certain time stamps and see if there is any new data. So his plan is to have me sit around all day with a cap on my head to find another unremarkable test result. Sounds like a fun day to me.

As you can probably tell from the tone of this, I am still very upset about the lack of any new information and I really don't know what to think or feel. It seems like the more I think I know, the less I can confirm what I think I know. (Did you follow that? It makes sense, I swear.)

I really just want some answers. Why have I been having seizures for 28+ years? Where do they come from in my brain? How are they affecting me, other than the obvious? And most importantly right now - How do I trigger one, and what do I need to do to let you capture it? I will force myself into a seizure if I know how to do it, and I know that you are capturing data. I just want to know more about me, and my seizures, and how to stop them, and what the hell they are doing to me.

It's extremely frustrating. 28 years and I know little more now than my parents knew 28 years ago.

Sunday, June 23, 2013

EEG results... coming Thurday

I know from the Facebook "likes", comments, and other reactions to my previous post about my EEG that some of you are probably just as excited to find out the results of my EEG as I am. (OK, I don't think anyone is quite as excited as me, with the possible exception of my mom, but some of you are definitely intrigued.)

The bad news, however, is that I couldn't get an appointment with my doctor until Thursday at 8:30am. I do plan on spending more time with him than he probably realizes, and asking a ton of questions, and telling him exactly what I experienced during the test, and I am determined to come out with some good information.

Bottom line, be sure to come back here Thursday night to find out what we learned from the test. I get out of work at 7:30pm and will likely post about the result as soon as I get home.

Friday, June 21, 2013

Overcoming Medicine Side Effects

Some of you may know that the biggest side effect that I see from my medicine is the one that says "may cause drowsiness" on the bottle. For me, this is worst during the first week or so after increasing dosage. (AKA - right now.) In fact, in my case it's sometimes bad enough that the warning should say "may knock you on your ass!"

So what can I do to stop this? Well, I'm consuming a drug which makes me tired... so I'm going to consume food that keeps me awake. But what keeps you awake?

The answer is: anything that gives you the most energy. Complex carbs and protein give you the most long term energy, and simple carbs give you short term energy.

Complex carbs are in things like bread, rice, and other grains. Fiber also gives you some long term energy. Most people know that protein is very high in meat and nuts (like peanuts or cashews) and sugar is an example of a simple carb that... well there's plenty of things that have sugar.

So my plan for today... start off with a bowl of Mini Wheats. They're high in fiber, and the wheat mean's they probably have some other complex carbs in there. Along with that is obviously some milk. Can't have cereal without milk. (At least I can't, especially not mini wheats.) That milk has some protein which will add to my energy reserves. Add in some toast for some added complex carbs, (I usually do 2 pieces, but will likely do 4 today) and the usual fruit that I have with every meal now, and we should have a fairly energetic breakfast.

What about lunch/dinner? Well I've got something planned that I haven't done in a long time... PB&J sandwiches. (At least, I haven't packed them for lunch in a long time) The peanut butter is high in protein, the bread has the complex carbs, and the jelly has a decent amount of sugar, giving me an instantaneous boost as well as a sustained boost for the rest of the day. One sandwich isn't going to be enough for me, so I'm planning on making several. That way, I can grab one throughout the day if I get low on energy.

Also, for you non-PB&J experts, the correct way to build a PB&J for on-the-go eating is to have PB on each slice of bread and the jelly in the center, so that the jelly doesn't leak through the bread.

And I've always got those fruit cups in my drawers at work too, so they are a good source of fiber and a small boost.

So that's my plan for today. Let's hope it works.

Wednesday, June 19, 2013

Best. EEG. Ever!

As many of you know, I had an EEG this morning I said before that I've had dozens of these in the past, and they've never seen anything... well I think my luck may have changed today.

For anyone who's ever had an EEG before, most should know that you are usually asked to have very little sleep before the test. This is so that you can possibly sleep during the test, but also because lack of sleep is a seizure trigger for many people. I got roughly 4 hours of sleep last night.

My mom took me to the appointment this morning, and on my way in I had a feeling that one was coming. I don't know what it was... it wasn't a full aura, but I just had a feeling.

I got into the test, and they had me just lay there for a bit with the wires connected. Then we started the breathing part. They have you breathe quickly and heavily through your mouth for 3 minutes. Then we stopped again for a while.

That's when it happened. 

About 10 seconds after I stopped the heavy breathing, I felt an actual aura. I started getting "that feeling" in my head, which is literally indescribable but only ever means 1 thing: I was starting into a seizure. My heart started beating quickly, I could feel it beating in my chest, my breathing sped up again, and finally I felt some twitching in my right knee.

This went on for a while. I tried to get to sleep, but every time I got close to sleeping it felt like the seizure peaked up again. I could feel my right leg tensing up, and still the occasional twitch in the right knee. My right arm and leg both felt weak, even though I was laying down I could feel the weakness. My head twitched a bit, I think because I was trying to contain the other twitching as much as possible. This continued for about 30 minutes or so, when she finally started the blinking lights. I didn't tell her that I had started into a seizure, I kinda kept that to myself.

She put the light in front of me, told me to keep my eyes closed, and started the blinking lights part of the test. At this point, I was still in the seizure... and let me tell you: the blinking lights test while in a seizure was weird! It was like I could see shapes in the light as it blinked, and the slow blinking really threw my head for a loop. I don't even know how to describe it, but it definitely made me tweak out a bit.

Amazingly, the seizure stopped either during or shortly after the blinking lights test. Then about 2-3 minutes after the blinking lights, she stopped the test. I told her "I think we got one!" So she talked to me a bit about when it happened, and how long it lasted, and she told me that a doctor would look at it today and send it to my doctor tomorrow.

Now, those of you who don't have epilepsy, or don't know a lot about epilepsy, are probably thinking "How is this a good thing!?" My answer: It's not a good thing, it's a GREAT thing! The point of an EEG is to capture abnormal brain activity. I have had epilepsy since birth over 28 years ago, and have NEVER caught any abnormal activity during an EEG. I'm 90% sure that we got some this time! I just hope that the data is useful to my doctor...

My doctor told me that an appointment wasn't necessary after the EEG, but I think this time it is. I want to see the EEG, I want to talk to him about what he saw, I want to see if he can identify when the seizure started and stopped, and if he can't I want to tell him where to look.

This is probably the only time you will ever see me be glad that I had a seizure, but I am genuinely excited to see these results!

Sunday, June 16, 2013

Next 2 weeks

The next 2 weeks of my life are going to be interesting....

this week I'm working 4 10-hour days so that I can have Wednesday off. Wednesday I'm going in for an EEG. I'm supposed to be sleep deprived for the test, which is why I'm taking off of work that day. I don't want to have to work on very little sleep. Then after the EEG I'm increasing the dosage on my medicine, to try to stop the simple partial seizures that I've been having.

I know from when I first started this medicine that each increase in dosage zaps my energy. It basically turns me into a zombie for about a week. So Thursday and Friday of this week I'm going to be working 10 hours on an increased dosage... that should be fun.

Next week I'll still be on the new dosage, and likely still feeling the effects of it well into the middle to end of the week. That Saturday (the 29th) I'm bar tending a wedding for a friend of mine. I will have been on the new dosage for about a week and a half, so I'm hoping that my body will be used to the new dosage by that time. If I'm still feeling the effects, I'll probably sleep most of the morning Saturday, then go to the wedding, and finally bar tend the reception.

Should be an interesting couple of weeks. Wish me luck.

Wednesday, June 5, 2013

8 pounds in 1 month

Yeah, you read that title right. I've lost 8 pounds in 1 month. The crazy part? I haven't been to the gym in that month!

How do I know all of this? I've got an app for that. It's called Jefit. (It's available for iOS and Anroid, I recommend downloading it if you go to the gym.) I use it to log my workouts, and before each workout I also log my weight in the app. The last log that I have (prior to today) was from May 7th, and I weighed 233lbs. I went back to the gym today (almost an entire month later) and weighed in at 225lbs. (And for the record, I wear the same thing at every weigh-in, and use the same scale. I wear a pair of gym shorts, a tank top, and a pair of socks - no shoes.)

Now, I know what you're thinking... How did you lose weight without going to the gym? And the answer is 2-fold:

1) The diet that I started.

I've been eating a lot of fruit, and I've been eating a lot more often. Usually at least once every 2-3 hours. I start with a meal in the morning. Usually cereal or eggs, with some toast, milk, and some type of fruit - a banana or a fruit cup. Then at work, I eat multiple times throughout the day. Each of those is just a fruit cup or an apple, but I have usually at least 3-4 per day. I also have been preparing my own meals for work, and I eat lunch and dinner at work. Lunch around 2:00, dinner around 6. Lunch is usually some chicken with rice, noodles, or other side dish. Dinner is usually a bowl of chunky soup or another prepared chicken meal. And finally, some more fruit when I get home from work around 8. I occasionally have some "guilty pleasure" foods, usually a couple times a week. I'll have some chips, pretzels, or other salty snack, but I try to make sure to also have some fruit soon after that.

The past couple weeks I've been so busy moving that a lot of the lunches (and some breakfasts) have not been as healthy as normal. I've been going to Wegman's market deli, or to Wendy's, or Arby's. Although, even most of those have been healthier than most people's trips to those places. The Wendy's purchases were mostly the chicken flat bread, Arby's has been mostly their chicken and turkey sandwiches (I didn't even know they had turkey sandwiches until a couple weeks ago) and Wegman's... well a couple of those have been less than healthy. But the rest were subs and other healthy choices. (The unhealthy breakfasts that I mentioned briefly were mostly McDonald's breakfast - usually the breakfast burrito or a sausage egg and cheese bagel. Yeah they have that, it's just not on the menu.)

2) You don't need to go to the gym to get a workout.

I've been very busy. In the past month I've helped a friend move, moved myself, arranged things in the new apartment, moved more, moved more, cleaned the old apartment, moved a little more, helped another friend clean out her parents' barn (don't ask) and now I need to finish arranging things in the new apartment.

So yeah, a lot of physical labor over the past month. Which is why I wasn't going to the gym... I felt like I had gone to the gym most days, even though I hadn't been there in weeks.

Personally I think the diet was more helpful than the physical work. I've been trying to lose weight for a while, and have been too lazy to adapt a proper diet. Now that I have a proper diet, I lost 8 pounds in a month (even while occasionally cheating on that diet.)

An even better sign: today I had to wear a belt with pants that don't generally need a belt. And the belt loop that I used was one tighter than the one I usually use! That's real progress! :-)