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.

It's Been Awhile

I'm back, sitting at my desk, literally wiping dust off the keyboard. I haven't written since January; right before I took my trip back to Mayo Clinic to see if they could provide us with any answers, advice, or pat on the back. Short answer: No.

I've written post after post about my experience with Mayo, but I'm choosing to skip over our last trip. Not because something happened that I'm withholding, but rather, the opposite. They offered us a path, and we took it. I knew that there was going to be some work to be done on my part. 

In the fall of 2012, I was put into another EEG. The doctors boldly took me off of all of my medications, so they could get a good look at what my seizures looked like. I was admitted a week from Thanksgiving of that year, thinking that I would definitely be out by the time the holiday rolled around. I was wrong, and I spent the holiday in the the hospital having seizures. I remember the first one only because I looked up from the bed to see my Dad, with his coffee cup shaking in his hand. (I was told that there were nurses crying in the hallway after one seizure in particular. That will always stick with me). 

I had seizure after seizure until my tongue was so bit up, bloodied, and swollen that it was hard to talk. Even weeks later, I was rubbing the same solution that you would drop on a toothache on my tongue because it hurt so bad to eat, drink, and talk... even sleep.

***Just had a seizure, taking a break***

Once given a proper diagnosis from Mayo, I was put on a steroid treatment in spring of 2013. A nurse would come to my house once a week and administer an IV steroid treatment. What I experienced was what I HAD to expect. The nurses, while nice, all took several sticks (2 to 5) to find a proper vein, and when they did, I bled all over my kitchen floor until they inserted the IV. So much blood everywhere, I remember.

The steroid treatment didn't work when it came to reducing the number and severity of my seizures, so the doctors decided that the next step would be IVIG. I can't quite explain what this is, but I would go to NW once a week and it worked similar to the steroid treatment. This started in the fall of 2013. 

The nurses were better, in the they found veins more efficiently. I was told at Mayo in a very casual manner that there was a potential risk of me developing Meningitis as a side effect of the treatment. Guess what happened? I woke up one night after an IVIG treatment with a headache so severe that I thought there was no way that I could make it to NW. Sara did her best and got me down the ER at NW.

There I received a spinal tap (now my forth in five years) and not nearly enough drugs to ease the headache. The spinal fluid was tested and I was deemed a threat to the other patients and doctors, so I was put in isolation. I sat there until a proper isolated room was available upstairs in the Neurology department. 

I was moved after hours waiting with Sara and my two sisters. They all really went to bat for me that day. I was put on antiviral, antibacterial, and some other "anti" medications for a couple days while in isolation before I was deemed non-infectious. Although the headache was still there, I was allowed to go home. The next week, I started back up with the IVIG treatments, with full knowledge of what they can do.

After still having seizures, nothing seemed to be helping and so the treatments were stopped early; just before Christmas. Then after the holidays we ventured back up the Mayo for more tests only to be told that they tried what they could, and it might be best to work with my doctors at home, especially with my therapist and psychiatrist, (I let them in on some of the darker side effects these medications seem to have.)

This is a lot to take in, and I know it's sounds a bit like self-lothing, but this is what I go through when I have my therapy sessions. I discuss all the gory details out-loud with the hope that I can make some semblance of what this all means. All of it. 

What does it all mean? 

Why is this happening? 

What can I do to better my life and those lives around me? 

What kind of quality of life is this?

All Press is Good Press

I'm trying very hard to connect with old friends. I've spent my whole night Facebook friending old acquaintances from high school fifteen years ago, college friends from ten years ago, or new friends that have developed the last couple of years. What I'm trying to do is paint with a broader brush when it comes to my writing, when it comes to my Epilepsy and awareness.

I'm trying to share my story with as many people as possible. I'm sure that most of you are trying to do the same. A persons story is very, well, personal, but what I'd like to do is bring my illness to the forefront.

I want this blog to be a soapbox on which to stand and shout the thoughts running through my brain. It's easy to communicate these emotions to a loved one (slightly), but it's completely different to expel these feelings to the sudo-public.

I want this blog to be known, I want it to be shared, talked about, discussed, and gossiped about. All my press is good press.

Monday Morning Status

Last night while watching television with Sara, I walked into the kitchen and felt as though I was in a dream. Of course, I knew what was happening, and to be honest, I knew it was coming all day. I felt the little "ticks" where I lose the split second of time that I always talk about.

Once I reached the kitchen table, I sat down and waited for the seizure to wash over me. I felt my eyes getting dim, as Sara grabbed the VNS magnet from my right hand that was becoming numb. She swiped it over my chest several time to activate the device.

That's all I remember, and in fact, when I woke up this morning I thought it had been all a dream. I called Sara on her lunch break to ask her what happened... "Did I have a seizure last night?" She said that I head tilted to the right, my right arm started to stiffen, and I was babbling incoherent words.

Now I can expect as least two more seizures within the next couple of days; that's how my seizures work, they come in three's. The first one rocks my world and the next couple usually knock me out of the bad mood that usually comes with the first seizure.

That's the thing though... I feel great. I did start the new antidepressant, Geodon a couple weeks ago. Maybe it's doing it's job better than Abilify.

All I can say today is that I'm happy I thought it was all a dream when I woke up because the knowledge that I had a bad seizure does depress me. I just think to myself that I was doing so good, and just maybe this is the start of a long streak of being seizure-free. Not today, I feel strong, even with the knowledge that I'll probably have a bad week. What I'm going to do is be conscious of my health, drink some tea, and watch a movie that makes my laugh out loud.