Rambling about my epilepsy

As I was driving tonight I was doing some thinking. Be prepared here, this is going to get kind of random.

The first thought was "I haven't taken my pill yet tonight." Then I realized, I've never been without medication for more than roughly 1 month EVER in my life. EVER. I was born with epilepsy, and was quickly put on an anticonvulsant drug, and have been on such a drug ever since. I've been taken off of my medicine before, but only to have a seizure within about a month, which is why "about a month" is my record of being without medication.

On that train of though, I got to thinking... I really don't know who I am without medicine. And I wish I could find out. I really do. Unfortunately, me without medicine is probably me having a ton of seizures, and might lead to me not really being me anymore because the multiple seizures could lead to brain damage or other problems. (Yes, it has been proven that seizures can cause brain damage. And yes, I probably have some minor degree of brain damage due to my life long fight with epilepsy. And yes, I think my memory is affected by my seizures too.)

As I was thinking about that, I started thinking about possible triggers for these recent seizures. As far as I can tell, some possible triggers include:

• Allergies
• Stress
• Workouts
• Exhaustion

I put exhaustion as a subcategory of workouts because usually my exhaustion is due to extensive physical exertion. Whether it be an actual workout at the gym, or working around the house (or construction/deconstruction in my mom's and/or brother's houses) or moving (myself or others) or whatever else I may be doing that is physically demanding.

And finally, I started thinking... I'm going to have a seizure within a couple of days. How do I know? I can't really explain that, but I'd be surprised if I went from right now to the end of the work day on Monday without another seizure. If I were a betting man, I'd put my money on the 4:00 hour Monday afternoon. Most of my recent seizure seem to be between 4-5pm while I'm at work, so that's what I'm kind of expecting right now. Plus, I worked out Tuesday and Thursday this week, putting Monday at the 6-day mark after the initial workout, putting it about in line with my previous theory.

Also, I would put money on this year being the first time I have a seizure at camp. (Or at least my first recognized seizure at camp.) Why? Because all the signs point to seizure that week. All of the possible triggers I listed above will be present: August is usually the worst part of the year for my allergies, there is more stress at camp than can even be expressed through some ridiculous analogy, and we are climbing hills all week and are always exhausted by about Tuesday. All of that on top of the 1-2 seizures I've had per month for the past few months... it all adds up to seizure during camp.

In all reality, having a seizure at camp is not a big deal. Seizures happen at camp - it's a camp for kids with epilepsy. However, one of these seizures may be a big deal for ME at camp. If I have one of these hour+ long partial seizures at camp, I'll be down for the count for roughly a day. They take all of my energy out of me, and I already don't have any energy to spare at camp.

My biggest fear is that one of these partials will turn into a full out tonic-clonic. It hasn't happened yet, but if it's going to happen, camp will probably be that time. Why? Because of my already low energy level, the extreme physical requirement of camp, and the ridiculous stress level. Hopefully that doesn't happen, but it is a fear of mine.

So, I leave you with some countdowns:

44 hours until I expect my next seizure will be (Hopefully that countdown is wrong, and it doesn't happen)

330 hours until I arrive at camp

Workouts and Seizures

A few days ago, I mentioned via social media that I had a theory involving a correlation between my workouts and my seizures.

Unfortunately, I don't have as much data as I thought. I have only been logging my seizures since about May, and I have logged 4 seizures in that time.

Here is the data that I do have:

Workout Date	Seizure Date	days between workout and seizure
5/7/2013	5/17/2013	10
6/5/2013	6/10/2013	5
6/13/2013	6/19/2013	6
7/10/2013		8
7/12/2013		6
7/16/2013	7/18/2013	2

(I have this table in Excel format now and will be potentially adding to it in the future if this pattern continues.)

So from this small amount of data, it seems as if my seizure are occurring 5-10 days after each workout.

As is often stated on the internet: "correlation does not imply causation". Basically this means that just because I seem to be having seizures a few days after each workout, does not mean that my workouts are causing the seizures. Especially with the limited amount of data that I have.

However, with some more data points I could prove a possible cause and then look into solutions.

My theory, as it stands now, is the following:

The medicine that I take is absorbed through the blood. My workouts recently have been mostly cardio which increases heart rate, therefore increasing blood flow, and potentially increasing the absorption rate of the medicine. This would lead to a spike in medicine levels immediately following the workout, but a potential drop in levels over the next few days due to the increased absorption of existing medication. The actual time/date of these lows would depend on the rate of absorption of the drug from ingesting the pill to when the drug actually enters the blood stream.

From what I've read, Keppra seems to have a very quick absorption rate - about an hour from taking the pill to the time when it enters the blood stream - which would lead to my theory being potentially flawed. But if the absorption rate is that quick, then why did I have to be at each dosage for 2 weeks before increasing to the next dose? The purpose of the "weaning" on and off of such drugs as I understand it is 2-fold:

1. To make sure that the medicine levels have enough time to reach maximum for that dosage before increasing to the next dosage
2. To get the body used to the new drug and/or new levels of drug

Again, I'm not a doctor so my understanding of these things may be slightly flawed. But I still say that if I need to be at each dosage level for 2 weeks before increasing again, it probably takes a week or more for the levels to even out. In which case, my theory could have some validity.

I called my doctor's office yesterday, and he was supposed to call me back but he never did. When I talk to him I plan on bringing this up and seeing if I have a legitimate concern, or if I'm just crazy.

Obviously I'm not done with this. I will continue to keep track of both my workouts and my seizures, and will observe any correlation between the two - even if the doctor does say that I'm just crazy.

ADDENDUM: Any doctors, nurses, pharmacists, etc. out there that happen to be reading this... feel free to leave your professional opinion on my theories.

The past year

I was thinking the other day that I've been through a lot in the past year or so...
Let's start last July 3rd 2012: 1st recognized partial seizure

As a result of that one event: a trip to the hospital, 3 blood draws over a matter of roughly 2 months - one of which was done wrong and left a bruise for over 2 weeks, not driving for 6 months, starting a new medicine, more trips to the neurologist in 1 year than most people will make in a lifetime, an MRI - with no useful information, at least a half dozen more partial seizures over the year, an EEG - with no useful information despite having a simple partial seizure during the test, an increase of the medicine that I switched to, and a lot of days being exhausted from either having a seizure or changing/increasing medication.

Also, I learned that my seizures occur in the left side of my brain, because they affect the right side of my body. Unfortunately, this doesn't tell me enough to stop them for good, but it's information that I didn't have before.

Not resulting from the seizure: I was laid off from my job and started a new one about a month later


But on the other hand: I have created some semi-successful Android apps, helped my sister move, helped a friend move, moved myself into a new apartment, started living alone for the first time ever, started a new diet and lost some weight, got back into the gym, setup my weight bench in my new apartment so that it's easier to work out at home, bar tended a wedding for a friend of mine, helped my mom demolish her basement...

And probably more important events that I'm forgetting in each of these lists, but you get the point.


As some of you may know, I am always setting goals for myself. I started doing this mostly during my time at RIT, and I found that it helped me keep myself organized and it helped me stay on track. So having said that...

Goals for next year:

• Fitness
• Get down to 200-210lbs
• Lose enough to get rid of the "beer gut" entirely
• This number may be lower, depending on how I look/feel at my initial goal weight
• Start the "bulk-up" process of dieting and working out
• It's almost impossible to lose weight and bulk up at the same time. They require different diets, different workout routines... a whole different lifestyle. So once I'm done losing the weight, I'm going to work on strength and strength endurance. (yes, strength and strength endurance are 2 different things.)
• Re-join an all-star cheer team
• Tryouts are usually in April/May area, so I need to be ready by Spring time
• Job
• I have some goals here that I don't really want to make public (some of which extend past the next year)
• One long-term goal that I will announce is that I would like to further my Android development, and possibly form an official small business. Again, this is a long-term goal, and right now I have no target date set.
• Eventually, I may start developing for other platforms as well, or have someone else translate my apps to other platforms.
• Development
• Finish building "Google Games" features into Tic-Tac-Toe for Android
• Networked multi-player, achievements, etc.
• Finish Euchre for Android, and get "Google Games" features into that
• By "finish" I mean at least get a working game with some of the options found in the Windows version. Software is never finished.
• Get a solid foundation on the app that my brother wants to create
• Yes, another "secret". I do not want to give details about this app, but I/we will be working on something fairly big soon. It will probably be a while before it's available to the public.
• Continue development on Auto Respond, and try to increase sales of the pro version
• I've still got a list of features that I want to add
• I think I can increase sales with some advertising. Might have to bring in some digital designers to do some of my graphics.
• Life
• I was hoping to get a town house this year. After being laid-off that was put on hold, so that will be one of next year's goals.
• If some of my job goals can be reached I can start paying down my student loans a bit quicker, and that will help with everything
• Epilepsy
• Now that I'm back to what seems to be a controlled state, goal #1 is to stay seizure free as long as possible
• If that fails goal #2 will be to gather as much information as possible, as always

Stuff and things

Lots going on right now. Most importantly, I will be home in exactly 1 month.

Camp

For those of you who don't know me, I volunteer for 1 week every summer at a camp for kids with epilepsy. Even if you don't know me, but you read this blog, you probably know that I have epilepsy - and have since birth. I have been going to camp since I was 8, and have been a volunteer counselor since I turned 18. As of last year, I have officially been at camp more years as a counselor than as a camper. I missed 1 year as a camper (I think when I was 15... in 2000) to go to football camp, so in total I've been to camp 9 times as a camper and 10 times as a counselor.

This year will be the 22nd year that camp has happened, and my 20th year attending. That's a long time. In that time I have made many friends. I've made friends as a child at camp, and as an adult at camp. People from both of those categories still attend camp. People who I grew up with at camp are still counselors with me. One in particular who has been there since I was about 12 or 13, and has been a great friend of mine since then. (She knows who she is.)

For these reasons, and many more, camp is the one place that I truly feel at home. Unfortunately, that means I'm only truly home for 1 week every year. But that one week is glorious.

This year camp is August 11th to August 17th. The 10th to the 17th for counselors. We get there a day early for training, setup, etc.

If you would like more information about camp, it can be found here: http://www.epilepsyuny.org/campeagr.htm

Health/fitness

I haven't lost too much more weight. As of tonight I weighed in at 223, down from 225 a month ago. Not much progress, but I still feel great. My goal is to get down to 215 before camp, and if I get back into the gym regularly over the next month, I think I can do it. I haven't been going to the gym as much as I should be, partly because I've been focusing on my apps and other things. Life is a balance, and right now I have a lot to balance.

As I mentioned, I did get to the gym tonight though. I walked 3/5 of a mile, ran 1/4 of a mile, then walked another 1/4 of a mile. The run wasn't a jog like it has been, it was definitely a run, with probably half of it being almost full out sprint.

Then I went on to the "hand bike" as I call it. Not sure what the real name is, but it's like pedaling a bike with your hands. I went 8 minutes on level 3, as opposed to my normal 6 minutes on level 3. Plus I pushed myself to go faster than normal, so it was doubly extra.

Then I went 8 minutes on the bike... I usually do 10, but I was exhausted from the extra running and the extra on the hand bike. But I still did 2.2 miles, and the last time I did 10 minutes I went 2.5 miles, so the pace was roughly the same as normal. Then as a cool down, I walked another 1/4 mile.

Epilepsy

My last known seizure was during the EEG exactly 3 weeks ago today. That was also when I started the increased dosage of my medicine, so hopefully the increased meds are working.

I say "last known" because I don't always feel these partials that I'm having, plus I think it's possible that I had one in my sleep this weekend. I woke up from a nap (after helping my mom demolish her basement... don't ask) and my right calf was stuck in a clenched state. It actually hurt - badly. I massaged it for a while and it relaxed after a few seconds, but it actually still hurts occasionally - and that was Sunday. Again, I'm not sure if this was a "nocturnal" seizure, or if I just tweaked my muscle. For now, I'm assuming the latter.



So that's about it for now. Can't wait for camp!! :-)

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.

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.

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.

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!

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.

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! :-)