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!! :-)