One Month

On Friday, it'll be one month seizure-free. The last seizure was when I was already off Sabril and hadn't yet started Felbatol. I'm noticing some creepy side-effects of the new drug, but that's to be expected at this point. I'm not at my highest dose of Felbatol yet, that comes next week... 1200mg three times a day. It sounds like a lot because it is.

I'm hesitant to talk about the future because I get a little superstitious.

Ok. Here we go.

Ok. Here we go.

I started my new medication Felbatol. Everyone knows that these strong medications cause all sorts of initial side effects. I'm feeling them all. I also have orders for weekly blood tests. My first one is in a few hours.

My doctor decided to take me down on all my other medications. Because of this I've been walking around the house a nervous wreak. I've been preparing for (what I feel will be) a strong seizure. The last time I was taken down off my medication was at Mayo Clinic for an EEG. It took nearly a week for me to have a seizure, but when I finally did, it was one of the biggest I've ever had.

I'm preparing now. Writing notes around the house, and giving Sara as much information as I can about how I feel in case I'm unable to communicate later. It's like I'm preparing for a long trip, knowing I won't be in communication with anyone. It may sound like I'm being neurotic but all of my Epilepsy friends will certainly know this feeling. My preparations are going down to even the clothes that I'm wearing.

This is a big deal.

Clouds on a Summer Day

It rained all night last night. Today the clouds are still thick, and there are puddles of water everywhere. I walked Sara out to her car this morning; the air was muggy and still smelled like rain.

When I experience days like today they remind me of when I was a kid and I would go to a friends house to play. I remember the same smell in the air as we searched around for worms with sticks still wet from the rain. 

He had a huge wooden treehouse-like fort that his Dad built him. The wood would still be drying out as we made our way to the top of the fort to see the entire yard. Our pockets would be full of different toys and other things that we would call "weapons" even though we called them "treasures" around our Moms because we knew they would probably get mad. 

Our "weapons" were kept in an old shoe box. They were mostly sharped sticks taped to other sticks so the would look like mini swords. When we would go shopping with our Mom's, we would pick-up little pieces of plastic and junk to keep in our "weapon box" to be used in creating better swords. We kept the box outside by his Dad's workshop, next to the big fort.

One time we decided to make our little group of friends and siblings a club. I designed (go figure), a bunch of member cards with all of our names on them. I remember handing them out to everyone, except my best friend. As a joke, I told him that I didn't make one for him; he looked crushed before I pulled his extra special club card out from a different pocket. I still remember his face when I told him a didn't make one for him, and think about it to this day.

For some reason I remember the rainy days the most. Probably because those were the days that our play was most interrupted. Those were the days that we had to be the most creative in what we wanted to do with our day.

***

In a couple of hours Sara and I are going to make our way back down to the city for another appointment at Northwestern. This'll be my third appointment down there in three weeks. I'm getting sick of the cafeteria that I used to love so much. It's not that same food as what the patients get. It's actually pretty nice. Sara and my family would go get me "real food" from down there when I was admitted. Their cookies remind me of my time there the most; stuck in a bed for days and so happy to see Sara walk through the door with an oatmeal raisin cookie. Life can be pretty simple sometimes.

The doc is considering a new medication that is for seizures, but one of the side effects is weight loss. The other medications I'm on cause weight gain and it's been showing. He and I are nervous that my weight could lead to heart problems, not to mention worsen my diabetes. They're more worrisome than seizures at the moment. 

Of course there are other side effects. Two big ones being liver failure and some sort of anemia. I'll have to have a blood test every month or so. This seems all pretty routine to me. Sad but true.

Along with my doctor visit I have to get a bone density test. I was told that I should've gotten one a while ago. Sara knows why, it's slipped my mind. Maybe all the meds I've been taking over the years.

Today will be busy, and the next couple weeks will be scary. I'm nervous. 

Therapy and Side Effects

By now we all understand that Epilepsy is one long string of side effects. It's still a mystery as to why I started having seizures, but I know that the seizures themselves were a side effect of whatever else was going on in my body. So we decide to treat the "side effect seizures" with medications that cause all sorts of other strange, scary, and sometimes deadly side effects.

I'm in therapy. I'm there, not because of the seizures themselves, but because of the vast destruction that the medications treating them has left in their wake. What I've been finding is that any issue that I grew up with and may have held onto in my adult life (even unknowingly) is violently amplified.

Imagine, for example, I wasn't really good at playing baseball when I was a kid. Maybe I was picked on because I was so bad, and as an adult I held onto these bad memories. For most people these feelings would stay in the background, never surfacing again. One could say that those moments in my life built character and taught me lessons about life. Etc. Etc. Etc.

Now start having seizures and start taking these medications. Baseball becomes an epicenter of ALL the problems I had as a kid. All of the sudden I remember the feel of the baseball jersey on my skin during games, the sound of the ball hitting the glove, the crowd yelling, "easy out!" when I would come up to the plate, the feel of dirt in my eyes after sliding into a base, the voices of the boys who picked on me, and what kinds of things they would say. Then, I start to hate baseball in general. I never want to go to games, or watch them on TV. When I see a hat with a baseball logo it makes me sick. I'm so embarrassed that I was bad at baseball that I start to think about hurting myself. Maybe I daydream a little about what all of those boys would say if I were dead. Would I still be just an "easy out"? Everything is so real, and I can't understand why nobody else can see what I see.

This is an example of the kind of fight that goes on in my brain everyday. And it's because of those feelings that I'm on more medications to counteract the dangerous side effects of anti-epileptic drugs.

I fought going to therapy for years, but that was also a side effect of the medication... I've been known to be a stubborn person, but the stubbornness was amplified to the point where I would have all-out arguments about it. "Can't you see what I see? I don't need therapy!"

Now I see a psychologist to talk and work out my issues, and a psychiatrist for prescribing medciations. The psychiatrist works with my neurologist, so we're all on the same page as far as that goes.

To discover that deep, inner-issues are being forced to surface and amplified by medication is something I'm still working on. Epilepsy is not just a string of seizures... it's a character trait, it's a lifestyle, it's a prison.

Seizure Day

Thursday, July 24th, 2014. Seizure Day.

7:30am:
Wake up to Sara getting ready for work. I take off my apnea mask, rub my eyes and make my way to the kitchen.

7:45am:
Eating Cheerios, and a banana. The medication from the night before gives me "gut rot" so I need to drink a lot of fluids. Basically, what someone would do after a night of light drinking.

8:00am:
I'm watching the morning news as Sara leaves for work. I play on eBay, Facebook and Twitter, getting the handle on what I'm going to do today. I feel as though I'm a little pissed for no reason. Probably, from my last seizure. This will usually change when I have my next seizure, (Interictal Psychosis).

10:30am:
I'm ready to take my medicine:
Vimpat, 200mg
Lamictal: 300mg
Geodon: 60mg
Sabril: 500mg

11:00am:
I get ready for the day, shower. It's too hot for a bike ride, or a walk. I don't want to risk having a seizure, plus I have nowhere I want to go. I will probably have to stay in today. The medicine is kicking in. My lips are numb. It's probably time to lay down.

2:00pm:
Waking up from my nap a little groggy. I'm hungry again. I get up and make my way to the kitchen. I'm in the kitchen, but don't remember the walk from the bedroom. I note that in my seizure diary.

4:00pm:
Sara's coming home soon. I put on some music loud and give the apartment a "once over" cleaning.

5:30pm:
Sara's home, and she's getting ready for dinner with her friend in the city. She brought me tacos.

6:30pm:
I've eaten, and Sara's on her way to the city. I'm watching TV. I feel another little "twitch". I decide that it was nothing, and go back to playing on the iPad, and watching TV.

8:00pm:
I put down the iPad, and stare at the TV for just a second.

8:05pm:
I feel an aura, (a feeling normal people would pay to feel). The seizure is starting. I start smacking my lips and swallowing over and over. I notice that I've already taken out my VNS magnet and swiped it over my chest because I usually swipe with my right hand, then move it to my left hand because my right side goes completely numb during a seizure. Muscle memory.

8:06pm:
I feel my head turning to the right for no reason. I have no control of my body anymore.

8:15pm:
(*Notice that I've skipped 9 minutes. This means that I lost consciousness. A "Bad One," as I call them.) I'm awake again, still on the couch. The room looks so different as if I was in a stranger's house. I'm looking around, checking out every room. Almost a dream-like state. I wouldn't be able to tell you my name, or understand english if you were asking me questions.

8:17pm:
I decide that I need to get ready for bed for some reason. I need to turn off the TV and all of the lights, except I've forgotten how they turn off. I start unplugging the lights. This all seems perfectly logical to me. "I don't know why the lights and TV wouldn't come with an on/off switch."

8:25pm:
I've found my way to the bedroom where I lay down. Not to sleep, but just to lay. Still in a dream.

8:35pm:
I'm coming out of the "fog" and remember that I had a seizure. I'm still groggy, but I make my way around the house to plug in all of the lights and TV. I know that I have to take my medicine. I feel like I'm ok to remember how to do that:

Vimpat, 200mg

Lamictal: 300mg

Geodon: 60mg

Sabril: 500mg

Phenobarbital: 194.4mg

Allergra: 180mg

Ativan: 2mg (This is the emergency medication for after a seizure)

9:54pm:

I text Sara to let her know that I had a seizure.

10:45pm:

Sara's home and I'm all ready for bed. Apnea machine filled with water, teeth brushed, the works. I remembered how to do everything... good. Sara and I talk for a while about the seizure, and she reminds me to describe it as best I can in my seizure diary. I'll remember more about the seizure tomorrow.

11:00pm:

I'm asleep. Tomorrow, repeat.

Front of the Line

Good news! I'm being weened off Sabril! If you don't remember, Sabril is the anti-seizure drug that can cause peripheral blindness, so I had to do an eye test every three months. It definitely wasn't working for me; against me, actually. I was having the same amount of seizures, about three a week, but they were far more intense than I normally experience. Plus, there's this new phenomenon called "Todd's paresis" that started happening. When I have an intense seizure, half of my face droops, and is paralyzed.

Usually, when I'm being weened of a medication, the side effects can still linger, plus there's a risk of more seizures for a period of time while my body acclimates to the new mix of chemicals.

My last major seizure came in the doctors office (of all places), not in front of the doctor, but it was a doozy. Sara basically talked for me the whole appointment, because I was still recovering once the doctor came in the room. It was a hell of a day.

***

I've been talking to Sara (more like complaining) about the mindset of people in the hospital. I've had to come to terms with this subject myself. It may be working for me in some regards, and against me in others. Basically, a lot of people believe that while they're walking around, going to appointments, visiting loved ones, etc. They believe that they're the only ones there, and the reason their in the hospital has to be the most important.

The reason I'm complaining is because I can see that kind of behavior actually works. The loud man in line seems to always get pushed to the front. It's a sad practice.

The day I had my seizure in the doctors office at NW, I fought the whole day for my story to get just ten minutes of attention. I was so stressed, but I tried to keep my cool; only Sara could tell that I really wanted to fucking scream. I was red, my blood pressure was reading so high that the nurse took it twice. I remember staring at the wall in the office while my eyes started going black, and the seizure began. I frustratingly called out to Sara, and I took out my VNS magnet.

At some point the doctor came in and started talking. Sara was my voice that day.

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.