No Sleep

My rule is to never (or try not to) write late at night because it's kind of like waking up in the middle of the night, and writing down your dreams. They never make sense once you're finally awake.

That's why I plan on posting this when I have a chance to "approve" it tomorrow.

I'm writing this at 2:00 am. Sara's in St. Louis for a conference, and I'm at home. I cannot sleep. Usually, when we're apart for a night, she's at home, and I'm in a hospital room in the city.

Obviously, I'd rather not have to be in the hospital, but if I had to spend a night alone, I'd rather have it be that way. I can't really sleep in the hospital either. They check your vitals every four hours, even throughout the night, so I'm constantly being woken up. Usually, we're trying to record a seizure, so sleep deprivation is a good thing.

Last time I stayed over night at NW, it was for Meningitis last fall. My room was "quarantined," so I think they broke protocol and let me sleep all night. After all, I was in a room with video-monitoring, so they would know if something bad happened.

I remember that my room was so black and quiet. I was still in incredible pain, but drugged. One thing about these strong pain medications... they don't make the pain go away, they just make it so you don't care that you're in pain. So, while I was awake I just stared around the black room with a headache that radiated to my feet. It was so dark that I could close my eyes and open them to the same blackness.

I've never really been afraid in that hospital, but that night, in the dark, I was. I was praying for mercy; praying that I didn't have a seizure while my brain was on fire.

Creativity and Epilepsy

Epilepsy is a brain disorder, and the brain is very creative. A seizure can prove that point.

I'm a "creative" person, after all, I excelled in art and music in high school, and I ended up choosing an art school for my college studies; graphic design. People always describe themselves as being creative or non-creative. You'll hear it everyday, somewhere. The truth is, we're all very creative inside.

I say this over and over to my wife and doctors. An aura (seizure warning) is where the brain presents itself to the host.

I've had five seizures in five days. Last night, I was laying down in our room just before bed when I felt this warm feeling in the pit of my stomach. Soon I started to see the objects around me as if through a child's eyes; they were all foreign and confusing. As the warm feeling crept up my neck to my head, I felt like I had just finished crying... you know the feeling after a good cry.

Just then the world opened up to me and I saw every color and heard sounds and familiar voices from my past. I can never quite make out what they're saying, but it's so familiar and there is so much love in the air, it's all so beautiful.

Of course, my muscle memory grabs my hand to find my VNS magnet in my pocket and while I'm seeing all of these beautiful things, I swipe the magnet over the device to activate it.

The aura comes to an end and the seizure starts. I've explained this before; sinking into myself, sometimes waking up minutes later, confused, unable to speak.

But the aura is something that I wish all of you could experience. It's something that people would pay to feel, to see. It's what makes me believe that the brain is creative... every brain, everyone.

***

I have a Neuro appointment at NW next Monday, along with my eye test that goes along with the drug Sabril. We're going to talk a lot about Sabril's side effects, and whether or not the risks are worth the reward.

I'm going to talk to him about my weight gain. All of my meds note that this could be a side effect, but it seems like I'm a sucker when it comes to side effects. I was turned on to the idea of diet being able to help slow the frequency or severity of seizures as well as control my weight. That's going to be a strong bullet point on my list.

Living Body Without a Soul

This weekend, for some reason, I had the courage to watch something that overwhelms my life, but I've never seen: a seizure.

It was on youtube, of course. I know a little bit about the medical terms for different types of seizures; partial, generalized, etc., I've tried not to connect these words to my experience, because I can only talk about what's happening on my end; I can't see what everyone else sees.

I found a video of a man, apparently having a partial seizure. He started out by trying to explain what he was seeing during his aura. After that, he started licking his lips, it looked like he was chewing gum. His loved ones knew what was happening during the video, but I was confused. I had to watch the video over and over to get a grasp on what was actually happening.

The one thing I did notice was the man's eyes. They were black and lifeless. He was looking directly at the camera for a good part of the video, and all I could see was an emptiness in his eyes. It was like there was nothing there; a living body without a soul.

I know my doctors would all agree and tell me that, yes, your eyes dilate during a seizure, dot, dot, dot. But what I saw during the video was what my loved ones most likely see when I'm having a seizure, something I just can't wrap my head around: Jeremy's body moving and talking, but lifeless.

It was an eye opening experience; a very scary look into what's happening to an epilepsy patient on the outside, when I only know what's happening on the inside.

***

This weekend, Sara and I spend some time in Milwaukee to see a concert. It was a great time. Everyone was a lot younger than us, and annoying as hell, but I was able to see through that, which is very surprising for those who know me well.

The whole weekend was, and I knew this going into it, a perfect breeding ground for a seizure. Crowed, hot, long, little sleep, etc.

I can decipher, in my own language, what kind of seizure these experiences can create. On the way home, halfway from Milwaukee to Chicago, I cursed out loud knowing that I was having an aura in the car. I lifted my butt off the seat to grab my VNS magnet from out of my right pocket and started to swipe it over the device implanted in my left chest.

I started sinking slowly into myself, as the right side of my body went numb. I remember this because I was staring at my right hand, it was opening and closing at it's own discretion. By then I had already over the VNS magnet from my right hand to the left so I wouldn't drop it; muscle memory, I guess. This is probably the point in the seizure where my eyes go black; just an amazing thing to think about.

After I thought the seizure was over, I slunk down in my seat and groaned in disappointment. Yeah, the weekend was the perfect storm for a seizure, but I couldn't even make it home... almost though.

I was pretty alert, meaning, I knew that I just had a seizure, but I still had to ask Sara to be sure that what I saw actually happened. After the seizure I was a little depressed, and very tired.

The rest of the way home, and when I found my bed back in Illinois, I just slept. The best medicine for an Epilepsy patient recovering from a seizure.

Feeling the Time Between

For those suffering with Epilepsy, the time between seizures is called the Interictal state. So, basically, it goes, Aura, Seizure, Postictal state, then back to the Interictal state. The process repeats over and over.

Some of you out there may not have known that there's a term for this, but the odd change in behavior or mood in-between seizures can be diagnosed as Interictal Psychosis.

I'll tell you that I have no medical background, I am actually trained in the visual arts, so I can't preach any sort of statistics or studies on the subject of Interictal Psychosis. I'm an Epilepsy patient, and I only know what I've experienced. I believe that, with a clear mind, my peers and I are the only ones who can really provide a semi-clear definition of this aspect of the Interictal state.

I experience, on average, three seizures a week. Some more, some less. Most of the time I will have none for many days and then several... I mean several all in a row. This is the known to me and my wife as the bad time.

After each seizure, during my Interictal state, I'm never sure which Jeremy I am. Sometimes my heart is filled with hate and frustration, sometimes crying uncontrollably, and other times I can't keep my eyes open for hours on end. During the times when I am another Jeremy, I cry out for another seizure to come. This is the only time that I can describe Epilepsy as painful. It hurts from my physical body all the way to the deepest parts of my heart.

When I'm another Jeremy, I know deep down that I'm someone else, but all I can do in scream while waiting for the next merciful seizure to find me. Sometime it's hours... sometimes in can be days of this hell.

When I'm finally knocked back into myself, I can communicate. This is usually the time when I can write for you, and speak clearly to my wife and therapist. But, I will say that both Sara, and my doctors can tell if I haven't quite made it out the psychosis, and back to the real Jeremy.

When I have a strong opinion as the real Jeremy, I have to look Sara right in the eyes and tell her that she's talking to "Me," and not some sort of skewed version of myself.

***

What's crazy about life is that while writing this, I just had a seizure. I can feel myself teetering on the brink of crying. I know that it's not over, but I'm still typing. How is this possible?!

Smile for me, Jeremy

What people don't understand about people with Epilepsy is that having a seizure is the easy part. We lose that time, it doesn't unusually hurt, and it's really not our concern what happens while we're having a seizure. We leave all of that stress to those around us... loved ones, friends, even strangers in the worst cases.

A person with Epilepsy lives life between seizures. There's actually a term for the time between seizures if you can believe that. It's called Interictal. We live our lives in an interictal state; the time after, all the way to just before a seizure.

This is the time when our minds show us what is really going on inside, but it presents it in a way that we will never be able to describe it. That's why I see a therapist, and I write for you. I'm trying to be the first person with Epilepsy to truly describe what it's like for us to live.

When I come to the end of the interictal state, I start what's called an Aura, a seizure warning. An aura is exactly what it sounds like. I start to sink inside myself and it's like my mind stored every memory just for this moment. It's not like a dream, because every sense is activated. I'm seeing through my eyes from when I was young, sitting in front of my grandfather's television, I feel my face warm from the TV's glow. I'm playing in front of the TV, it must be with Playdoh because the smell is activating my sensory glands. I'm salivating, I can taste how the Playdoh smells.

Just then, I come to a fork in the road. My mind makes a quick decision as to which kind of seizure I'm going to have. Lately, it's been a type of seizure that tricks me into thinking that the aura was the actual seizure. I'm still stuck inside myself, like I was during the aura, but now I'm seeing through my eyes and not with them. I see myself saying words that I don't understand and I ride along and my body makes it's own decisions on where to go and what to do. My eyes look at Sara and I notice that she's moving her mouth as to talk but all I hear are echoes. My body must understand some of her commands because my body is moving, and mimicking her movements. "Smile, Jeremy. Smile for me. Smile big!" I can understand a little... the word "smile," I know that word. I can feel myself slowly gaining a little control of my body.

I'm numb, and I have already forgotten about the seizure. For me it was hours ago, hell, it could've been. Sara looks confused as I ask her what happened, because it looked, to her, that I knew what I was doing, that I was in control of my body and what I was saying.

As I start to accept the news that I just had a seizure, now comes the stage just after a seizure called the Postictal state, this stage can last for minutes to hours. My mood shifts to one extreme or another, and basically I'm anyone except myself. More often than not, I'm crying, and I just can't figure out why, and that is exactly why I'm crying... did you get that? I'm having a hard time understanding commands, and putting words together. So all I have to go on is the memory of this moment to try to explain it later.

Then, again, I'm back... Interictal. The time where I can live my life... except, wait, I don't feel right. I feel angry, I feel sad, I feel lonely, I feel excited, I feel, I feel, I feel, I feel...

This is a new topic: Interictal Psychosis. This is new to my doctors, too. Here's one definition: "The interictal "schizophrenia-like" psychoses of epilepsy conventionally are treated with antipsychotic medication with uncertain results." (http://www.ncbi.nlm.nih.gov/pubmed/10732658)

That's where we are now...

They're Getting Stronger

Let's get right to it.

I'm taking a medication called Sabril. It's billed, to us anyway, as a fairly dangerous medication as far as side effects go. I'm horrible at side effects, so Sara and I were very hesitant. The major possible side effect is peripheral blindness... permanently. So, I better be damn sure that this is going to go well, because last year didn't go so well with the Steroid and IVIG treatments.

No vision problems to report, but my seizures seem to be getting stronger. They happen just about as often... three a week on average, but it's not just the seizures I'm worried about, it's the postictal (seizure hangover), and interictal (period between seizures) states that I'm most worried about.

My last "bad" seizure was about two weeks ago, I've had seizures since, but not to this magnitude. 

It all started in the kitchen. I felt the aura take hold... I started seeing lost pictures, and hearing voices in my head from when I was younger. I could taste or smell (I can't quite figure out which one) play-dough in my mouth. I remember Sara telling me to sit down at the kitchen table (she had just came home early from work). 

The next couple of steps are mostly from Sara's account, because my version is a little hazy.

After I thought the seizure was over, I got up from the kitchen table. Sara was talking in the background, I would later find out that it was the hospital that she called. I thought that we were going to go out for the afternoon because she had the day off, so I went for my coat and hat.

After I got ready to leave for the afternoon, I sat down in the living room, waiting for Sara to finish her conversation. While on the phone, she came to me and kept asking me to smile. "Smile big!" she said. I could only smile with half of my face, the other half was temporarily paralyzed, something known as Todd's Paresis (this has never happen to me before).

A couple of minutes later, when Sara was just finishing her conversation with the hospital, I came to realize that I wasn't in the kitchen anymore, but somehow I was in the living room with my coat on. My body was still very weak, but the one thing that I immediately remember is becoming very emotional. 

Note: this is VERY hard for me to talk about, let alone write for everyone to read.

After "awaking" in the living room, I was very confused and started crying. I apologized to Sara profusely for having epilepsy, and kept telling her that I thought people would call me names if they ever saw me in this state. Every minute that went by, I started becoming more aware of what was going on around me, but I couldn't stop crying. I just couldn't. Even now, I'm very nervous as to how you will all view me after telling this story... maybe it goes deeper that just the postictal state.

After awhile, Sara brought me some Ativan, a rescue medication to stop me from having anymore seizures. It basically knocks me out for hours. It did just that. I would wake up hours later with a big headache and many, many questions as to what happened. I could barely speak and form sentences, but I knew what I wanted to say... I just couldn't get it out.

Days after this seizure, I still had trouble putting together words and thinking quickly. My speech was very bad, but by now Sara had learned how to speak "Jeremy" after I have a seizure.

My seizures since have been "smaller," as to say shorter with less recovery time. I'm still getting very emotional after each seizure. Very humiliating.

I hope just reading this is the closest you all will ever come to experiencing this type of horror.

Ok, I'm Back

Ok, I'm back from the rant I had yesterday. I guess I could blame it on pre and post-seizure emotions.

I went on a bike ride today. Probably not as physical exercise, but rather a break from the four walls of our apartment. It was nice, a little muddy, but it helped clear my mind for a couple hours.

Some new developments. I'm now working solely with NW when it comes to my health. This is kind of nice because all of the doctors can talk to each other and use the same computer system, so when there's a diagnosis at this end, the doctors can see it on the other end.

As far as Epilepsy, I was put on a new-ish medication called Sabril. It was on the market for a while, then abruptly taken off because doctors saw that that it could potentially cause peripheral blindness. After a couple years, it's back on the market with a HUGE warning label, and system in place to be sure to catch any blindness that the medication may be occuring. I'm going to NW every three months for an extensive eye exam. To be honest, I could write a hole post on how nervous this medication makes me.

On the good news side of things, I started seeing a new psychiatrist. He's at NW, (my old one was closer to home). He's young, energetic, and full of ideas on how to help. I'm intrigued, but still guarded because, after all, it's still psychiatry... the place I go to dispel my darkest feelings.

On the day I met with the new psychiatrist, Sara was unable to drive me down in the morning, but she was going to be there to join me for the actual appointment. This meant that I was going to have a little adventure for the day!

I put on my best shoes, wore my best coat for the trip and carried all of the necessary documents I would need in my favorite bag, (yes, a man purse). I walked to the train, bought my ticket and waited. Once the train arrived, I enjoyed looking out the window at a vantage point similar to an average, everyday commuter. It was both comfortable and enlightening.

Once I arrived at the station, I hopped in a cab and said, "Northwestern hospital please!" in the most dominate voice I could muster. The cab weaved its way through traffic and dropped me off exactly where I needed to be. I texted Sara, "Here."

I made my way up to the cafeteria... everyone should know that I love their cafeteria. Just awesome. Once, I got my food, I ate and waited for Sara to drive in and meet me where I was sitting. It was then that I thought to myself what a great day I was having. I didn't know how the appointment was going to go, but right in that moment, I felt like I would on my way to work everyday, or driving to my parents house in Wisconsin. I felt free, independent, and strong.

Don't take even the littlest things in your life for granted. The things you loath the most in your life right now could be taken away, and you'll spend the rest of your life hoping for the opportunity to loath them once more.