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Wednesday, November 15, 2017

My Story - Growing Up

Growing up can be tough. Growing up with epilepsy can be more tough. Sometimes it can be really tough. Luckily, there were some things that helped me along the way.

Early on, Dr. Wang told my parents not to treat me any differently than any other child. He told them to let me do whatever the other children do, and not stop me. This was great, because I was still allowed to climb trees, and swim, and ride my bike, and do all the things that "normal" kids get to do. But that doesn't mean that nothing was different for me.

Anyone who has ever asked me to tumble ("do back flips") knows that my parents always taught me to protect my head. This is something that has become habit. I can't do a back tuck because it is beyond unnatural for me to go backwards. I don't know where I'm going, and therefore I can't guarantee that my head is going to be safe. Even attempting the backwards motion is almost impossible for me.

My parents also told me, from an early age, that all of my teachers, coaches and close friends should know about my seizures. That didn't mean that I had to tell everyone, but there were a list of people who should always know. That was to keep me safe. If I had a seizure in class, or at a sports practice, and my teacher or coach didn't know, then they would have no idea how to handle it, and would likely freak out (like many people do when they see a seizure.) If they were informed ahead of time, they could prepare themselves for that scenario. My friends knowing did come in handy a couple times. Those stories will be saved for later.

These days, I pretty much do tell everyone (as evidenced by this blog.) OK, not quite everyone, but there is nobody that I would hide it from. If it comes up in conversation, then it comes up and I don't worry about it. I tell my story like it's an open book, and I answer any questions that people may have.

Many people who I know who have epilepsy went through this phase of being diagnosed. That diagnosis generally cones with a phase of being upset, depressed, embarrassed, and/or other deep feelings. I never went through that because it was always a part of me. It was just a part of life for me, so I can't always fully understand those feelings when people talk about it.

All of my close friends have always known about my seizures, and a few have seen me have seizures. But they also know that my epilepsy is the one thing they could never joke about. People can make fun of me for being a nerd, or being a cheerleader, or playing too many video games, and I accept all of that; I usually just laugh it off. But having seizures is not something that I chose, and it's the one thing that I don't let people joke about, even to this day.

Monday, November 13, 2017

My Story - Early days

Since I started having seizures almost immediately after being born, I also started seeing a neurologist almost immediately as well. My pediatric neurologist was Dr. Wang - which is pronounced like "gong" not like "gang". He had a saying "If you're saying it wang, you're saying it wong."

Dr. Wang put me on medicine to try to control the seizures, and my mom started a seizure journal. A few years ago, we found a small piece of this journal and I digitized it. Here's what I found:

Feb 7 2 Seizures with Apnea
Feb 10 2 Seizures with Apnea 
Feb 20 Off  Dilatin 
Feb 24 2 Seizures @ home
1 Seizure in the ER
Turned Blue
Started Dilatin
Mar 29 Completely off Dilatin
Apr 21 2 minute seizure
Stopped breathing for 10 seconds
Apr 22 4 minute seizure
Back on Dilatin (4cc's 2x's)

Jan 13 2 minute seizure
Eyes rolled back into head
Left arm jerked
Jan 16 3 1/2 minute seizure
Jerking, then stiff, bent arms, eyes rolled back
After it stopped he went to play immediately 
then seized again for 10 seconds
Jan 16 Seized in sleep (11pm) for 1 1/2 minutes
Phenobarbitol - 5cc's 2x's/day
Feb 2* 3 1/2 minute seizure
Lips started to turn blue
Eyes back and body jerking (7:30pm)
Feb 3 4 minute Seizure (1 am)
Took to hospital - Pheno blood level @ 23
Back on Dilatin - 50mg 1x/day
Feb 3* 3 minute Seizure (7:30am)
Eyes back and body jerking
AFTER last 3 seizures he had high temperatures

Mar 9 2 1/2 min Seizure (11:35am)
Eyes back and body jerking
Was weaning off Dilatin - Hospital put him back on 2 1/2 tsp/day

Fell on garage floor at babysitters house and smacked head.  Stood up - fell - went stiff - foamed at mouth and lost consciousness. Was awake for ambulance.  Had 10 second or so Grand Mal when they were trying to attach IV.

Jan 9 Seizure on Stairway
Jan 10 2 seizures in toy room
Fell off stool and turned blue
First time Stephanie witnessed one.

A star/asterisk (*) indicates that I was not taken to the hospital.

I recall some of these incidents, but not many. For instance, I remember the 2 listed in 1993, but not many details. I remember that it was a weekend, because I had seizures both Saturday and Sunday that weekend, and that was abnormal for me at the time. I remember thinking that it had been a bad weekend for seizures. (And I actually remember a bit about the one on the stool in the "toy room".)

I've also heard stories about the one in 1990 at the babysitter's house, but I don't remember the incident. From what I've heard, it was raining and I think we had been playing in the rain. Then I slipped and fell in the garage and had the seizure. But again, all of this is stories from other people. I don't actually remember anything from that day.

Also, notice that I was on and off of medicine, and switched from one medicine to another a few times until we found Tegretol. It's actually not noted when I went on Tegretol, but I assume it was somewhere in the emptiness of the log between 1987 and 1990. I was on that until 2014.

This is also not a complete log of every seizure that I had. I'm not sure why these are the ones that were logged, or why they were not all logged, but I do know that this is likely incomplete.

Monday, November 6, 2017

My Story - The beginning

On Wednesday February 6th, 1985, my mother gave birth to a healthy baby boy. Or, at least, mostly healthy.

(Let me again start by saying that this is obviously not my story, this is mostly from what I have heard from my mom, put into my own words.)

After giving birth to what appeared to be a healthy baby, the doctors took me away from my mother - as they usually do with newborn babies - to clean me up and do whatever else they normally do with a newborn baby. After waiting a while for them to return me, she realized that the woman in the bed next to her, who had also recently given birth, was holding her baby. She also realized that the woman next to her had given birth after she had, but yet that woman had her baby back and I had not been returned yet. So she asked the doctors why I had not been returned. That's when she got some news.

I was only a few minutes old, but I had started having seizures. This was obviously concerning to both the doctors and my parents.

Wednesday, November 1, 2017

My Story - For Epilepsy Awareness Month

This year for epilepsy awareness month I've decided to do something a bit different. Instead of posting facts about epilepsy, I'm going to be telling the story of my life with epilepsy.

I'm not quite sure how I'm going to go about this quite yet, and I'm sure that I'm going to miss some things (there's a lot to cover.) I'm thinking that these are going to be roughly twice-a-week entries, and will be tagged with "My Epilepsy Story."

Throughout this journey, I would like you all to keep a few things in mind:
  1. A lot of these stories take place in a time before I can remember. I obviously can't remember things like the day I was born, and honestly can't remember much from my early childhood.
  2. When someone has a tonic-clonic seizure, which is the kind that I have, they are completely unconscious. Meaning that I do not know what happens during my seizures.
  3. Seizures cause issues with memory. Not only memory surrounding the event (immediately before and after the seizure are always blurry) but also general memory issues.
Because of these points, many of the stories are not my own memories, but stories and memories of my parents, siblings, friends, or others who were around. Honestly, anything prior to somewhere around the year 2000 is probably mostly from someone else, possibly with a few minor memories from my own head.

So keep all of that in mind when reading these stories - they are not entirely mine, and therefore may have been slightly altered over the years through multiple retellings. However, they will be as accurate as my mind allows.

I hope you all enjoy. The story will begin in my next post.

Saturday, September 26, 2015


So before I get to the actual decision that needs to be made, you need to know some background information.

Hospital Visit

Most of you probably know that I went into the hospital in May for long term monitoring, where I was hooked up to an EEG 24/7 for a few days. During the visit, we found that my recent seizures are what are called "non-epileptic seizures." This means that they are not actually caused by abnormal electrical activity in my brain, but are actually caused by my mind. There is something sub-conscious that is causing a physical manifestation that resembles a simple-partial seizure. That doesn't mean that all of my seizures were of this type. The seizures that I had when I was younger were in fact epileptic seizures. Apparently non-epileptic seizures are fairly common in people who also have epileptic seizures.

At the end of the visit one of the doctors said that since I have been 10 years without an actual epileptic seizure, I may be able to come off of my meds. At the time I said no because I wanted to try to get the other seizures under control first. I thought that coming off of the meds would cause more anxiety and potentially cause them to get worse. They did, however, take me off of one of the meds, and I am down to taking only Lamictal.

I have since learned how to better control those seizures. They're not 100% gone, but the ones that do happen are insignificant compared to what I experienced in the past.

Recent Happenings

Recently I have been having a hard time breathing during and after some of my workouts and at some cheer practices. I have now been to a few doctors trying to figure it out and they have found nothing. Then it came to me that it may be a side-effect of my meds. I looked it up and sure enough "shortness of breath" is listed as a "rare" side-effect, but yet I found a lot of people on-line complaining about it. I thought about it a bit and realized that my breathing seems to be at its worst when I take my meds before a workout/practice. I have recently been taking my meds after practices, just because it's more convenient, and haven't had as many issues.


So now I have a decision to make. I want to talk to my doctor about coming off of my meds, but like all of the other med changes, it's one of the most terrifying things that I can think of. At the same time, I have never in my life had the luxury of not having to open a bottle every day that says "may cause drowsiness." The few times that I've tried it didn't last long enough for me to actually get to enjoy that feeling. It's something that I have always wanted - to not take pills twice a day and to know what life feels like with no side-effects.

At this point this is not only my decision. I still have to talk to my doctor, and it will obviously need to be a joint decision. But if we do decide that it's something that I should try, I will need support from all of you. It's not something that I want to go through alone. I know that I have friends and family who are there if I need them, but I may need a little more help than usual.

Saturday, April 4, 2015

Doctor Visit

I just realized that I said I would blog about my doctor visit and never did... so here it is


Last week I sent to my new neurologist at the Strong Epilepsy Center, which is awesome because now I get to see an epilepsy specialist instead of a general neurologist.

Before arriving, they sent me a questionnaire about my medical history and whatnot. It was like 10 pages, and I actually didn't know a decent amount of it. "At what age did you take your first step? ...walk on your own? ...say your first word? ...say your first 3-word sentence?" That's just a few of the ones that I didn't know, which my mom didn't know either. (Mom knew some of the other stuff that I couldn't answer)


So I get there, the doc (Dr Bonno) is reading the book that they call a questionnaire, and asking me questions along the way. About 30 minutes later, we're pretty much done with those questions and move on to more questions. Then the usual neuro exam... walk on your tip toes, walk on your heals, walk in a straight line, touch your nose then my finger, etc. etc. etc. (I've done it so many times now that I could administer the test myself.) After the test more questions. Then the reflexes thing (hitting the knee with the hammer, rubbing the hammer on the bottom of the foot, etc.) Then more questions... I think you see where this is going. Lots and lots of questions and conversing.

After much of this, about 1.5 - 2 hours in, she starts talking to me about epileptic vs. non-epileptic seizures. Epileptic seizures are caused by over-activity in the brain, non-epileptic seizures are often caused by the mind - stress and whatnot that creates a physical reaction. She started telling me that epileptic seizures are not usually more than a couple minutes, so these are likely non-epileptic seizures (which is funny because my previous doctor said that it's not uncommon for partial seizures to go on for a long time.) Thinking about this, I come to the conclusion that such a thing is very possible considering my family's history of depression and other such conditions.

After a while, she decides she's going to consult with Dr Berg (who I somewhat know from the epilepsy foundation.) At this point I've been there at least 2 hours. they come in and Dr Berg is asking questions, a lot of which were similar to the previous line of questioning. Asking  mostly for a brief history of my seizures (mostly the more current ones) and my auras, rather than most of the other stuff that we talked about. After about 5 minutes, the two of them leave the room once again to chat.

A few minutes later, Dr Bonno walks back in by herself. She tells me "alright, you're complicated." Great, I kinda knew that already, but thanks. Dr Berg thinks that since I often get the same aura with these partials as I did with the tonic-clonics, they may in fact be epileptic seizures. However, Dr Bonno thinks that they may start as such, then continue on as non-epileptic, or may be non-epileptic entirely. We don't know for sure right now, but 3 hours after walking in, I'm finally walking back out.


So where do we go from here? To the hospital. For about a week. They're sending me in for "long term monitoring," where I will be hooked up to an EEG and monitored 24/7. Dr Bonno told me to expect 5-10 days, the lady on the phone (who made my appointment) said 3-5, so I'm going to say 3-10 days that I will be in the hospital. They will be taking me off of my meds (or at least lowering them) and waiting for me to have a seizure, so that it can be seen on the EEG.

They have wifi so I can have a laptop or "handheld gaming devices," I can obviously have visitors, and can have someone spend the night with me if I want, I can bring my own clothes - as long as they don't go over my head... because of the wires connected to it. But overall I get to sit, bored as all hell, in the hospital, waiting to have a seizure for up to a week and a half.

I go in May 6th at 2pm, so you better come see me :-P

Wednesday, March 25, 2015

Tattoo - Epilepsy Foundation Logo


As some of you know, I'm getting a new tattoo of the Epilepsy Foundation flame logo wrapped around the Master Sword from the Legend of Zelda series. This is an image that I put together quickly from images that I found online.

To me is symbolizes cutting through epilepsy, but the flame (the Epilepsy Foundation) is also giving me strength by forging the sword.

The sword design that I picked is from the Skyward Sword game, which is the first in the Zelda timeline. It's not just the first game currently in the timeline, it is the first possible appearance of the Master Sword in the timeline. In the game you forge the sword from the flames of the goddesses, which is why I see the flame as part of that forging process.

I'm supposed to get the final drawing from the tattoo artist today (3/25/15) and start the first session of the tattoo on Friday (3/27)
I will update this post with pictures at each step.

Update 3.26.15 - Drawing from the artist

Update 3.27.15

It took 3 hours, but it's done and it looks amazing

Step 1 - Outline

Step 2 - First Coloring

Step 3 - And Final Product - Sword Detail

Update 4.24.15 - 4 weeks later

There are a few spots that scabbed pretty badly and are still healing. Therefore, those spots are a little fainter than the rest, but they should look fine soon. If not, I can always get it touched up slightly. 
Also, the lighting and the angle are different than the original pictures. so some things are a little different in real life than how it looks in the picture (though,it definitely isn't as bright as it was on day one, especially the green, but that is to be expected.) 
This picture was me taking a picture of my own leg in a computer lab at work, and the others were the artist taking the picture in the studio. I found that it's kinda tough to get a good picture of the back of your own leg.

Sunday, March 15, 2015

Am I crazy?

So... am I crazy?

I'm sitting here thinking about the fact that I am in constant pain on the right side of my body, so much so that I'm debating taking Ibuprofen before bed. Yet I still go to the gym multiple times a week (doing both cardio and weights) I still cheer as often as I can (and I'm even planning on doing a partner stunt routine next year) and I still do it with a smile. So I ask again... am I crazy?

I don't know what the outside world thinks, but I don't think I am. I'm doing what makes me happy in life. Right now those things are getting more and more difficult to do, but I'm not going to stop because I'm a little sore (OK, maybe a lot sore.) That's life. Things get sticky and we have to push past everything that is trying to hold us back. I keep saying it and I'm going to keep saying it... I've never let anything get in the way of doing what I want to do, and I'm not going to change that. Regardless of seizures and the pain that they cause.

Pain/soreness has just become that guy that nobody likes, but he hangs with you anyway. The guy that people learn to put up with because you just can't get away from him for any extended period of time. You ignore him hoping that eventually he'll get tired of trying, and that he'll just go away, but he doesn't. (You've all had someone like that at some point, admit it.)
I've learned to deal with it. I've learned to look past it. To "ignore" it as much as possible. I can go a while without hurting by just not paying attention to it, but eventually it comes back. On the rare occasion that it is finally gone for real, something happens and it's back again. Maybe not as bad, or maybe worse, but it always comes back.

Pain is my body's way of saying "stop you idiot!" but my heart is saying "I can't stop!" and I've learned to always listen to my heart. Life is about doing what makes us happy. What are you doing if you can't be happy? You're doing something wrong, that's what you're doing.

A lot of people say that you "have to think about the future," and say "don't do anything stupid." Some would say that what I am doing is "stupid," that I am putting myself and my body at risk and I'm not "thinking about the future." But I don't care what others think, and I'm sick of thinking about the future. Sometimes you need to think about the present. Make the best of now because you'll never have now back, and you may never get to see the future that you are thinking about.

I've done a lot of stupid things in my life. Some of them were really stupid... truly, very stupid. But most of them made for an awesome time and an even better story. If I'm being stupid by continuing to workout and continuing to cheer, then I'm fine with it because I'm having an awesome time.

The worst of the stupid things I've done in life aren't at all things that I've done... they're the things that I haven't done; Things that I made a conscious decision not to do, for whatever reason. Most of those reasons weren't good reasons, they were just reasons. This time I'm making a conscious decision to do something, and I know the reason - because it makes me happy.

So for the last time I ask... am I crazy? Maybe. Do I care? No. I know a lot of crazy people, and most of them are good friends and/or family.

Phantom Seizures

I think I've been having more and more "phantom seizures" as I will call them.

The other night I was at my computer and was just fine, then I could faintly feel a seizure. Parts of the right side of my body were twitching. Not enough for anything to really move, more like just the muscles themselves slightly tweaking out. After a couple minutes, my shoulder was sore, right under the shoulder blade - and by that I don't mean lower down my back from the shoulder blade, I mean below the skin is the shoulder blade, below that is muscles. That muscle hurts. And it has before, seemingly for no reason, but now I'm understanding why.

At the hockey game tonight, about halfway through, my right knee started bothering me. Again, I didn't really feel any physical symptoms. No part of my body was actually moving, but I knew something must have been happening because it suddenly hurt. I payed attention to my body a bit, and could slightly feel the feeling in my head that I get before/during/after a seizure. Then later, after the game my, shoulder started hurting again. Now my arm hurts, mostly around my elbow. So basically it's enough to make me sore, but not enough to notice what's going on.

As I've stated before, this makes a lot of sense because this kind of thing happened a lot when I was younger; I would hurt for no reason. I went to the doctor multiple times as a kid for my right knee, and they couldn't tell me that anything was wrong. Over the past few years (maybe the past 5-10 years) my shoulder would randomly get this pain, but not as often as my knee. I'd go to do something with my arm and I'd feel this sudden intense pain, right where I feel it now. Sometimes it hurt enough that it took a while to get my arm back to a neutral position. The pain would go away within a day or so at most, but it still sucked. The question now is - how often do these really happen? Obviously more often than I realize.

I wish I could do something, anything, to make this pain go away. Being sore 24/7 is getting really annoying. I guess it's time to get a protein shake before going to bed.

NOTE: this was written about midnight, so I waited until morning to post it so that people would see it.

Thursday, February 26, 2015

Seizure News

Some good news and bad news:

Bad news: I woke  up at about 5:30am Tuesday morning during a seizure. The first thing I felt, before eve trying to sit up, was my hand doing its thing - squeeze then relax, repeat the process for however long it wants. About 15 minutes in I took an Ativan (which is supposed to stop the seizure and knock me out) and no change. Another 15 minutes and I took another Ativan. Still nothing. Since the bottle says "take 1-2" I figured it is now time to go to the hospital.

I live right almost directly across the street from the hospital (I'm set back a bit in an apartment complex,) but with the cold weather, and 2 Ativan in, I decided that walking down slippery outdoor steps and across a street while groggy and seizing was not a good idea. I didn't wan't to pay ambulance fees if I didn't have to, since it wasn't a dire emergency, so I had my mom come get me. It was probably about 7ish when we got to the hospital (time is relative since I was drugged up and my mind was literally fried.)

I spent roughly 8 hours in the hospital having seizures for roughly 3-4 of those hours. They gave me an EEG during one of the seizures and the results somehoe came back "normal." Again. I asked over and over for food, but they didn't bring anything until 1pm, so the last time I had eaten was probably 6ish the night before. Now that I think of it, I don't think I ever got my morning meds (or maybe they gave it to me at the hospital and I don't remember.)

I don't remember most of the rest of that day except my mom taking me back to her place, eating McDonald's, hating her dogs for waking me up continually, then going to bed at like 7 (ish of course).

The next morning, I woke up around 6 so that my mom could go to work and I could decide whether or not to go to work. It was indisputable "no," so I spent most of the day sleeping. Today tried to go to work, was there like 2 hours and had to come home. After some sleep and still feeling like crap, I got up and had some lunch meat to eat. Suddenly I felt a lot better. I then had some Goldfish crackers, a pop-tart, and a bowl of cereal. Felt a little better still.
I thought back at what I had recently eaten - sandwich at 1pm Tuesday, McDonald's 4pm Tuesday. Eggs and toast 6:30 am Wednesday, A sandwich and snacks most of the day Wednesday, a small "dinner" at an Al Sigl event Wednesday night, and pretty much nothing this morning - a granola bar and a cinnamon bun - because I didn't have much time to eat breakfast. So it made sense that food made me feel better.

Good News: I left one part out of this story: this morning.

Yesterday my doctor called and scheduled a follow up to the ER visit; That appointment was this morning. I talked to the doc, he asked me about the EEG and I said that the ER said that the results were normal. He mentioned that he had received the same info. We talked about the med changes that I've been going through, and decided we that the Keppra (that I just got fully weaned off of) was not helping. I was on such a small dose over the past month that it would have no effect. The only reason I was still on it was to not cause my body to go through shock from withdrawal.

After talking about the medicine, we went back to discussing the EEG. He mentioned that since this is the second time that this has happened, my seizures are probably drug resistant; meaning that no amount of medicine is going to help.

He then told me that he is going to refer me to the Strong Epilepsy Program, which is pretty awesome. He said that they can talk to me about non-drug related treatments, and since they are constantly researching over there, they may have some cutting edge tech. The only small issue is that I'd have to pay for parking, and I hate that. But the benefits of possibly getting more control highly outweighs a small cost of parking. I also won't be seeing my current doctor anymore, which is kind of a shame because I liked him as a doc.

I should hear from Strong within 1-2 weeks, and they will setup an appointment with me. I can't wait to see an epilepsy specialist and see what the next step will be :-)