Holiday

Well, I can be proud that this is the first Christmas in two years that I haven't had a seizure. I shouldn't jinx it because I haven't celebrated with my side of the family yet! Every other year I would wake up to Sara over me, asking me questions and breaking the news that I just had a seizure. I've noticed, or rather came to the conclusion that the seizures are stress induced. Sometimes being away from home and having so many people to visit builds stress and well, is obviously hard on my brain. Not just my brain I can assure you. We all have our reasons for being stressed out on holidays.

This Christmas was different. We stayed in the same bed and breakfast as last year (it's our hotel of choice while in Milwaukee). We use the hotel as a "home base" where we can escape once our visiting comes to an end. We can have a few drinks at the bar downstairs, then go to our room to put on our pajamas and watch "24 hours of A Christmas Story" on TBS. I felt ok but I had absolutely no energy, kind of grumpy to be honest. I fell asleep and didn't dream.

The next day, during Christmas my heart was pounding so hard I could feel the blood flowing through my veins. I thought it was just the VNS, but it was constant... just like pure concentrated stress. There was really nothing to be stressed about, just a lot of people in one warm house with too much movement and fluorescent light. Once outside, the cold, soft air hit me and I was never so happy to see my breath steam from my lungs.

Nothing was open so dinner was hard to find. We ended up finding a Chinese restaurant being open (funny). We ate and drank a little rum, thinking it would help us reset but all it did was knock me out... another night without dreaming.

Sunday was hell. You know the feeling when you're coming to the end of a vacation and you start to miss home? That's where I was. We had one more stop at Sara's uncle's house and again, my heart started pounding. I thought standing up, kind of out of the way would calm me down but I felt a little numbness in my right hand, so I swiped the magnate just in case it was a precursor to a seizure or a heart attack!

My boss, Joe said I'm a very anxious person when I skimmed the story to him. I agree that I brought most of these feeling on myself. All my medications are sedatives, basically. They're there to calm my brain so you'd think they'd be able to calm me. There's a lot to be anxious about, in my defense. At work we get reminded about how bad business is on a semi-daily basis. I think about how I'm going to make the next step while keeping my balance.

Balance. That word is kind of an answer to all of my questions. Growing up my Dad always told me that life is about balance. Too much of anything can be bad. It's hard to focus on these words when my will to balance is nonexistent. I started drinking, again. It feels good to really laugh and, this is going to sound funny, but after a few drinks I'm able to put things into perspective. I'll look away, down to the floor and almost pray. I'm unafraid.

On Sunday night I dreamt vividly. I wrote down what I thought after waking up. You may not understand these but this is what I wrote: "Respect photography, nurture writing," "There are many steps that have to be taken to reach goals, even if those goals haven't yet become clear," "Thank you for tomorrows," "Look close... closer... there's a lot of reality in dreams. Possess the ability to find a message, it's in there."

The one about goals is pretty confusing but I think it has a lot in common with my life in Chicago and what had to happen for me to get here. Things just fell into place, both good and bad. I'm trying to work with what I have and my goals are a reflection of this. For the rest of my life things will just fall into place and my goal is to be sure there's more good than bad.

New Opportunities

I've been talking to my sister about her experiences working in a hospital and it's really got me thinking about finding a part time job or volunteer position at the Elmhurst hospital just down the street. My sister, Jenni shared some interesting stories about her interactions with patients and although I probably wouldn't interact with patients like she does, I'd like to give back as much as I can.

I sit behind a desk all day and really have no interaction with new people. Volunteering might help me as much I'm able to help the hospital and ultimately... the patients.

I know there are a lot of stories out there and I'd really like to be a positive part of those stories.

Family

Only recently have I been exposed to my family's history. Events and perspectives that I would've never been able to comprehend until now. Still, at this very moment I struggle to take in what paths had to have been taken for me to be who I am and where I am today.

(I just had a seizure, I'm pretty sure the magnate worked to lessen the outcome. My whole right side went numb again.)

My Dad is a very touchy subject for me. I know he has been through a lot in his lifetime... The Vietnam War and helicopter crash, Beloit Police Department, terrible car accident for which he was read his "last rights," in the hospital but somehow recovered. He then got a new job and traveled around the world, missing out on parts of his children's childhood, something I know he thinks about. He has also been battling Diabetes for the last five years. He's a weathered man, a very strong man, a solid rock for which I respect down to the deepest depths.

He visited on Tuesday to take me out to lunch. We had good conversation while eating... typical Father/Son types of subjects. When we got back to my office I started asking him about how the family was doing... asking about his brothers, sister, my cousins. I talked about the war museum that Sara and I visited and fished for a little insight from him on the subject. After he left I felt worn down and generally upset. Like I said, my Dad is a touchy subject. To talk to him one on one, without the rest of the family around is a rare occasion and for some reason (that I don't understand) I feel like I'm not handling strife the way he's handled it in his turbulent life.

He's been around the world, seen bullets fly and has been mangled badly in his life, but he has a genuine smile every time I see him. He always tells me that the seizures are temporary and this experience will make me stronger... his tone is like that of a Father talking to his Son... empathetic and concerned. I don't want to let him down. I'm a Son who wants to be just like his Dad... strong, capable, independent and loving.

Dreams

I'm going to jinx myself by writing this post but I've been feeling ok as of late. No new seizures to report. My voice is still very raspy every 11 seconds for 7 seconds, I'm still getting used to it. By the end of the day frustration piles up because the vocal chords are getting tired and my voice gets more and more hoarse.

On the personal side of things, there's no news to report. I've written it all before and I'm tired of reiterating.

I've been waking up with really good dreams for the last couple weeks. A lot of detail and I remember them very vividly when I wake up. The problem is waking up. I say to myself, as I start to blink my eyes for the first couple times in the morning that I wish I could never wake up from dreams. They've been positive and engaging, almost adventurous. I see old friends, make new ones and discover new places. I'm strong, confident and curious. Not once during these dreams did I think about my body, been self-conscious about my voice or my inabilities.

It's astounding. The same brain that's been holding me down the last couple years is the same brain that allows me to travel beyond all imagination when I'm asleep. The same brain that rives me with pain during a seizure is the same one that comforts me and makes me smile while my eyes are closed. The same brain that whispers thoughts of harming myself during the day is the same brain that fills me full of life in the night.

Raspy Voice

On Monday Dr. Macken and his Fellow Dr. Ericson increased my VNS amperage. It's now on for 7 seconds and off for 11. The magnate was also increased. Because of the increase my voice gets very raspy while the device is on. I actually like this because now I can tell that the VNS is on and working. Before Monday, the amperage was set so low that I could barely feel when it was on and when I swiped the magnate during a seizure it took me four attempts before it helped stop the seizure.

I had, what was going to be a small seizure last night before bed. Sara and I woke up very early yesterday so she could be to work for a morning meeting. Usually when I have a long day like this, I'm bound to have a little problem. When I felt it coming on, I swiped the magnate and it stopped the seizure immediately. I had no postictal feeling, nothing... I just went to bed. Nice.

One bad thing is now that my voice is so raspy every 11 seconds, people have been giving me funny looks when I'm placing an order at a restaurant or anything like that. I think it's funny, but I know what they're thinking... "Get me away from this sick bastard!" It kind of does sound like I have a throat cold or something. Sara and the guys at work are still getting used to it, well so am I. To hear me start a sentence with my normal voice and have it switch over to a 70-year-old smoker voice raises eyebrows.

Overall, I've been feeling ok. Let's just keep it at that for now.

↑ x2

Today I'm having the VNS set to 0.5 milliamps, up from 0.25 milliamps. Right now my magnate is set to 0.5 milliamps and I was instructed to use the magnate to manually turn on the device everyday so I could get used to the higher amperage before my next office visit. The magnate will also be increased, this time to 1.0 milliamps.

I've been talking to my Case Manager at Cyberonics (the manufacturer of the VNS) and I asked her about some of the positive side effects of the device as they increase the amperage. She said it'll help with daytime fatigue, memory, and verbal skills. Sara and I were talking, kind of jokingly, about how I really need help in all these areas. Irene at Cyberonics said patients feel an improved sense of "well-being."

Obviously I can't complain about these side effects because they are so positive (I wish they helped me lose weight!). Ok, yes, I've slowly been gaining weight, it's most likely the fluctuating depression and complete lose of energy. When clothes I bought just last spring are barely fitting... well, it's disheartening to say the least. To be honest, most people would immediately get down about this or tell themselves that they're going to do something about it, but when I try on a newly ill-fitting piece of clothing I shrug and look for old clothes that used to fit before I was sick. This is horrible. These are the kind of feelings that I'm banking on the device aiding... I'm really putting all my eggs in one basket. My whole thought process is off and I admittedly need help in the psychological arena, but I still think it's scary that I need some sort of Star Trek, futuristic, alien mechanism hooked up to my brain to help with these feelings... and yes, to stop seizures.

Four "Shock" Seizure

I had a seizure last night at work. Everyone else left for home and I was there waiting for Sara to pick me up. I started having the numb hand feeling, like the recent strong seizure where I was conscious longer than usual. Once yesterday's seizure started and my right side went numb, I swiped the magnate over my chest to "activate" the VNS device, I had to swipe four times. It gave me a higher dose of amperage to stop or reduce the magnitude of the seizure. It did stop it after a couple of minutes... I knew that the device played a big part in how it all played out because this one had the potential of being a seizure where I lost consciousness and bit my tough, etc. The rough part is that I had to swipe the device four times for help.

I have an appointment with Dr. Macken on Monday to increase the milliamps. I'll mention yesterday's seizure and see if it's possible to increase the amperage for more than what we had planned at our last visit a couple weeks ago. Maybe then I won't have to swipe the magnate over and over like I did last night.

The postictal (seizure hangover) was pretty strong last night, I felt dizzy, tired, nauseous, and weak. As the VNS is increased it's supposed to reduce seizures, and the postictal state. I can't wait.

The VNS is designed for Epilepsy AND Depression which is a perk, of sorts. I've been talking to Sara about what state I'm in, emotionally, and it's probably good that this device can give me a little push through rough patches. I've been telling her that I hate the idea of needing a machine inside of me to make me feel happy, but she referenced people taking medication or having a drink, etc. I agree, but I still would like to know if I'm smiling because I have an implant and not because things are getting better or that I've been having a better day. Creepy thought, right?

It Works

Well, the VNS works. I felt a seizure starting yesterday so I swiped the magnate over the device, it gave me an extra dose of electricity to the Vegus Nerve and on to my brain and it stopped the seizure. I'm pretty impressed. They're upping the amperage for the device next Monday and the magnate amperage will double as well. I'm very lucky to have found a way to feel a little bit of control over the seizures. I was skeptical and very very nervous to have it turned on at first, but now it's somewhat of a parlor trick. I was a hit at Thanksgiving with my family, they all wanted to hear what my voice sounded like when I used the magnate and doubled the dosage. Right now the dosage is so low that my voice doesn't change but as they add amperage I'll have a very hoarse voice with a rapid twitter, kind of like you would hear when a taser goes off... "tick, tick, tick, tick." This goes on for about 7 seconds right now but will end up being on for 30 seconds and off for 5 minutes, unless I use the magnate to manually turn on the device during a seizure.

What's funny is that in the instructions it says that I can manually turn off the device if I hold the magnate over my chest for more than a minute. They reference singing or giving a speech... I got a little laugh. It might be a while before I'm ready to show off my pipes.

All-in-all things could be better. I was reading a friends blog and she listed what she was thankful for and it really got me thinking. There are a lot of question marks in my life right now... health, work, family. I do have a lot to be thankful for but I just don't have the energy to list them like she did. What I think about now is if tomorrow I'll have my job or if I'll live in a different city... will I be at this hospital or this hospital and for what? Happy isn't in my vocabulary right now. I know I'm thankful but one can have the world and not be happy... and likewise someone can be happy and have nothing.

I was telling Sara that I have absolutely no energy. She suggested, and has been pushing exercise but I can adamantly tell you it's not stress. It's much deeper than just stress. Obviously, stress is a part of life and has been firmly gaining ground but... I'm reluctant to say it... there are morbid thoughts lurking. I know that this usually means there's a side-effect of the medication making it's way into my psyche. I've seen this pop up very strongly in the past and when this happens there has to be a change in my mix of medication. This time it's manageable but just managing the side-effect is a huge task. Managing takes energy, strength not to let it in and fool me into taking drastic measures. The ability to keep up the facade of someone that's not having problems to my family and co-workers takes energy. The kind of energy I'm talking about is perseverance... it's been two and a half years... the soles of my shoes are worn down and I'm tripping over myself.

On

Well, I'm "on"

I had never been so nervous in my life. Well, maybe before the wedding, but a different kind of nervousness. I was sweating with a shaky voice before Dr. Macken came in. The nurse who took my vitals even mentioned my heart-rate which was sort of embarrassing.

Macken came in, checked out my scars (which was the first time an actual doctor has seen them) and started the steps to turn on the device. He gave me a wand that looked sort of like a big remote control and told me to find the device and place the wand over it. The wand was connected to a device with a screen that he used to control the milliamps I was receiving per "shock." I'm on .25 but I'll get up to about 3.0 apparently... upping the milliamps slightly per visit. I barely feel it right now, it just feels like a tug on the left side of my neck. I have a magnate that I can wave over the device if I'm having a seizure that ups the "shock" to .5 milliamps. This ampage makes me cough and my voice changes considerably, very hoarse. At the next appointment in two weeks the "shock" will be .5 so I'm supposed to use the magnate everyday to get used to the larger milliamp.

Sleeping was ok last night. Admittedly, I drank a little, though that's not recommended. It helped me forget the day and the appointments to come. I DO NOT recommend using alcohol for this purpose. It's a bad habit but I just couldn't help myself. Stupid.

****

I'm writing for myself now.

I've been very depressed this last year and it's escalated each day, especially this past couple months. I've been doing things like drinking and eating horribly... I've gained about 15 pounds... clothes are starting to not fit, etc. It's really like I don't care. Every facet of life in Illinois and health have been deteriorating. Everyone has been telling me, "it could be a lot worse" or "think about what you have", I know these facts. It could be a lot worse, I know we're trying our best to make things better but my attitude and quality of life is at it's lowest. I know I'm an experiment and now every time the device turns on I'll be reminded of that fact. Thank god it's not cancer, thank god it's not my heart or kidney or liver. It's my brain and let me just say that the brain is the only organ that can play tricks on you. It makes you smile when you're not happy, it makes you cry when your not sad, it makes you lonely when you're surrounded by loved ones and it makes you wish for a disease where people could give you answers to your questions. I've had very dark times so far and I know what it feels like to think morbid thoughts. I know when they're medicine related... you feel out of control and say things you don't really mean... desperate, horrible things. I feel very much in control of my thoughts lately... so they're not 100% medicine related... (maybe amplified by a couple of percentage points).

I wait for the day to end while thinking of a way I can end it.

3:30pm

I had kind of a disturbing morning... not really related to this blog, just thinking too much.

Today at 3:30pm I meet with Dr. Macken to turn on the device. I'm pretty nervous. Not for the appointment, but for the first couple days and first couple months after it's on. It'll hopefully help in the end, but it's a foreign object... I'll leave it at that.

Today

So when I first had Encephalitis in August of 2008 I was on an IV for a week or two and lost 40 pounds. I don't recommend that diet but it was a "perk" of sorts. In the months following I ate very healthy, not even diet soda and I was limiting my food intake. I thought it was easy to live like this, after all I couldn't really have caffeine or alcohol or anything that one would consider a vice because I felt like it would give me a seizure. I was very, very careful.

(Just had a small seizure)

I've had two spaces in time where I didn't have a seizure so I was able to drive, but now I haven't driven since February of 2010. Since then I've had one or two seizures a month. Some where I stay conscious and some where I pass out. Those obviously are the more serious seizures and I need help afterwards. I don't remember much and can't understand english; I feel very confused.

Since then I've backslid. By "backslide" I mean I've started eating worse, drinking diet soda, coffee (caffeine) and have been known to have a few alcoholic drinks. I've gained back 10-12 lbs. and really feel too depressed to do anything about it. It could be the medication or just mood but for me to get into a routine to lose the weight would be a task.

Life isn't too rewarding. I told Sara that my two favorite parts of my day are seeing her when she picks me up from work and when I kiss her goodnight, adjusting the covers and taking that final breath before I fall asleep. Again, it could be medication but if I had to guess I'd say it's 30-40% medication and the other percentage would be our situation here in Illinois. It could be the feeling of dependence on friends and Sara for transportation, constant bad news from doctors (mostly NO news), actually looking forward to surgeries. The smell of NW Hospital comforts me and I wish I could stay.

The hospital is my vacation. I basically take my vacation days and hitch a ride to the city with my favorite girl to where nurses and doctors serve me, constantly asking if I'm ok and if there's anything I need. Food is brought to me, there's TV and movies to watch all night if I want, pre-warmed blankets. I could name 100 more perks. The only thing that I have to tolerate is getting shots twice a day and possibly having a seizure (which I worry about at home anyway). Loyola and NW Hospital have been the only escapes from monotony that I've had in many years.

When opening the box for the VNS device I had implanted two weeks ago there are two magnets used for switching on the device automatically if I'm having a seizure and two instruction manuals. One for patients with Epilepsy and the other manual is for patients with Depression. The device is known to improve the mood, memory skills and productivity of it's users. Yippy! I need a machine in my chest to make me somewhat normal. I've said to Sara that I want to know if she notices anything different in my behavior once they turn on the device... good or bad, I want to know. I've been binging a bit for the last couple weeks, basically since the surgery. My guess is that I'm banking on the device improving my mood and helping me control my urge to eat or drink or over-indulging in any way.

My two biggest fears are that I stay the same, gain a bunch of weight and basically feel like I have no control over myself (like now) and the other is becoming a semi-cyborg with a creepy fake smile. There's got to be a happy middle. There's got to be.

Post-Op Exam

I'll try not to complain too much more about the Neurological Surgery Department at NW but I have to give one last shot. We had an appointment yesterday for the doctor to look at my scars to see if everything is healing ok. The nurse said for us to be prompt and be there right at 2pm. We understood because we had to move back the appointment from 10:30am to 2pm for work reasons. Of course we arrived at 1:50pm and waited for more than a half-hour. Finally the nurse (who we've continually had problems with... attitude) waives us in and into a room. I sit down hoping to see the doctor soon and she says, "Let's see'em." Confused, I stand back up, take my coat off and unbutton my shirt for HER to see the scars. She says that everything looks good and "that's it."

So, let's get this straight. We take a half day off work, drive downtown... in sort of a hurry to get there by 2pm for you to take a 3 second look at the scars. I could've told you they look ok! If they started to look abnormal I would call! (Of course she wouldn't get back to me for a couple days, but still!)

Again... NW Neurology Department = Amazing. NW Neurological Surgery Department = well, let's just say extremely frustrating. I'm not going to drop on them too much because the surgery day was a great experience, the device is sitting well, etc. You know, it might just be Dr. Rosenow's nurse! I mean, he's eccentric, but he is very good. She needs to be taken down a peg.

After the "appointment" we went to Water Tower Place, bought Sara her Christmas present (new coat) and had a very nice dinner. After that we went home, watched some crappy TV and downloaded a new album by one our favorite bands (Girl Talk). The night actually ended pretty well.

Next week, Monday, is the appointment to turn ON the device. That'll be a long blog entry for sure.

Recovery

Well, I'm back. I took some time to rest and see how the days after the surgery played out. Everything seems to be ok. When I got home late on Friday I was sore mostly in my throat and my voice didn't work properly. From experience, that's from the tube that they "jam" down your throat for oxygen during the procedure. The rest of my body was numb, literally, even today I can't feel the skin surrounding the incisions. Very creepy feeling. Drugs have helped. Not so much for stinging pain as one would expect but more from feeling my body "excepting" the device and wire that runs from my chest to the Vegus Nerve in my neck. It's a deep pressure that deserves drugs to sustain. Medication has also helped me sleep because I have to lay in an awkward position all night to avoid "popping a stitch" (as we've been joking about).

The incisions are disgusting. They're red and swollen and because I can't really touch them, they still have the marker where the surgeons chose to cut. I can feel, very carefully, where there device sits and the wire running up my chest into the neck. It makes it's way over my collarbone so there's a bump... gross.

Laughing, coughing, swallowing has been difficult because I can feel the pressure on the incision, like it's going to open. The chest incision is on the left side of my chest near the armpit, pretty much where you would expect a breast implant would be inserted, so left arm movement is out of the question. Today it's better, but again, I can feel the stretching of the incision and the pressure/pain from the chest pocket they created for the device under the skin. Not complaining, just trying to explain the sensation.

I feel very grateful that I have someone like Sara to help me through all of this. Not just physical support, but for the emotional toll WE'VE taken, as well. I feel helpless at times. I get depressed very easily because I want to be a man, able to support her as a husband should be able to do, but couldn't even take a shower or put on underwear without her help the last couple of days (this happened when I had my shoulder surgery, as well). I feel so vulnerable sitting on the tub edge, bare naked, while she helps me wash my hair, underarms and chest... careful around the incisions. Then she supports me while I stand up to wash... well... below the waist. She sees me as I truly am... scarred on my neck, chest and back... pale, out of shape and shivering. I feel humiliated. She's my wife, but I have to admit to wondering why anyone would put themselves through this on a day-to-day basis. "In sickness and in health," I guess.

All Ready

Dr. Murray from NW called this morning and informed me that my tests from Friday came back normal. I had tests done on Thursday and had to have them again on Friday because she said the first tests looked "abnormal." She said that the second test was taken just to be sure of the abnormality (if there was one) so the doctors can be aware of it during surgery, that it wouldn't necessarily move back the surgery date.

I've talked to a representative at Cyberonics (the company that manufactures the device) for some last minute questions and I think I have enough information to feel comfortable before and after the procedure. Once they turn the device on I'll know what to expect.

I'm ready and excited. (By the way I just had a seizure while writing this.)

Pre-Op

Yesterday afternoon I had my pre-op for surgery next week. They've moved the date to Friday the 5th from the Thursday the 4th. We're a little frustrated about the whole process, especially the Neuro-Surgery department because they've been giving us the run-around (filling out the same papers three times, switching dates at the last minute, etc.). When I was at the pre-op appointment the doctor who was giving me a physical and basically letting me ask questions was very helpful. We talked about my history and she compared my story with some other patients that have been through the system.

Apparently there was a guy my age who had seizures just as often as me but it was because he had a small brain tumor just under his forehead. All his medicines weren't working to shrink the tumor and stop his seizures so they opted for surgery. He came in with a "menu" of his medications and dosages (just like me) but he lived alone and took public transportation. He had to hold the "menu" while on the train with directions to his apartment and instructions that if he had a seizure that his doctors were at NW Memorial. Wow.

I love Sara and I know she'd be with me no matter what and I feel horrible about this guy. If I lived alone I don't know what I would do. How would I work without living close enough to take the train or bus? It's not safe to ride a bike, especially when it starts to get cold and snowy. To have instructions around my neck to warn people about what to do if I have a seizure. Sara has always been there, she directs me to lay down or she can get help if it's a larger seizure. This guy obviously doesn't have this. Horrible, but I respect his courage.

Next Friday is the VNS surgery. I'll know the exact time the Thursday before the procedure and I've already started to "prep." I did this for my shoulder surgery, too. Stay off vitamins and pain medication because it thins your blood, etc.

****

Whoops! As I was writing this the doctor at the pre-op clinic told me that my blood came back a little abnormal and I have to come back in this afternoon! What a surprise! Of course there had to be another obstacle. Sara is out all of next week for a conference but she agreed to take a half sick day to take me downtown. She doesn't even have to park the car... they said just to come up and they take my blood without a wait. I'll take Sara shopping downtown or to a nice dinner to make up for yesterday and especially today. She deserves all the credit in the world. I always say to her that "she picked a broken one" but she yells at me for saying that. She did pick a broken one but I know this experience, no matter how long it lasts, has brought us closer than most people could've ever thought possible. I hope she needs me as much as I need her.

10/17/10 Seizure

I still feel postictal (hangover after a seizure) so I might keep this entry shorter if I can.

Last night, after visiting my Mom in Beloit for her birthday, Sara and I came home and I made chili. Sara didn't feel good and I know she loves when I make chili, especially in the fall. After dinner, about 7:00pm, I was in the bathroom washing my hands and I noticed that my right hand was going numb. It started out slow and then felt like it was swelling, kind of balloon feeling. I kept looking at it to make sure it didn't look swollen or red... but it looked normal. Then the feeling started to make it's way up my arm. I knew then I had to find the bed and lay there hoping the feeling would pass.

The pain and swelling feeling reached my shoulder and instantly shot up my neck and into my brain... so fast that all I could do is make some gurgling sounds to warn Sara that I was having a seizure. I could feel the "swelling" in my brain like it was going to burst. While this was happening on the outer layer of my brain near the skull, the core of my brain felt like a fist squeezing and squeezing (I'm not self-diagnosing, so a professional will have to interpret what I'm saying). I grabbed onto the edge of the mattress, stiffened my arms and shook my head to the right and left because the pain was so excruciating. Sara ran into the room and started giving me directions to move away from the edge of the bed and she tried to pry my hand from the edge of the mattress. All I could do was hear her and look at her, all the while I was shaking my head in pain. My body was out of my control.

That's all I remember. I regained consciousness laying on my side in bed with the covers over me. She had taken off my shoes, etc. but I don't remember all of that. I asked Sara if I ever passed out (closed my eyes) and she said I was awake with my eyes open for all of it.

I've never been conscious for that long during a seizure of that magnitude. I'll never forget the pain.

I bit my tongue in three places and Sara cleaned the blood off my face, she said it was a "good amount of blood." This happens sometimes but not this bad, I'm having a hard time talking, eating and drinking this morning. I'm afraid to take pain medication because I already have too many drugs in my body and not a lot of food.

That's it for now. I'll write more after I feel "normal".

Are You Nervous?

Many strange things happen downtown, as one would imagine, I won't go into it but there were some very interesting people in the waiting room. I had to mention that.

I had a very enlightening visit with Dr. Macken yesterday. First, I was getting my blood-pressure checked and the nurse said she didn't get a good reading the first time so she had to take it again. She said my pulse was very high and asked if I was nervous. I said, "Well, I'm getting married on Saturday..." That got a big smile and "congratulations" and she must've left the room with the "pulse and marriage story" because all of the residents, fellows and doctors knew about it when they came in... it was fun. 

Dr. Macken was in a great mood. He's always nice, but very professional. He's talking about my brain and usually he has no good news, so I think it has to be like this, but yesterday he was openly happy. He was very interested in our marriage plans, honeymoon, etc. He's from Ireland, so when we told him we were saving up to go to Ireland he got a chuckle. It's kind of like being in Ireland and having someone say they're saving up to go to Chicago, I guess. He just seems like a really cool guy!

When we got down to business, we talked about the VNS procedure. There were some other options that he was considering, but had to get more information from an Epilepsy board of some kind (I didn't catch the official name). One option was steroids, which have only been used in children and have major side effects. The other option was something called a Deep-Brain Stimulator. He said it's not yet approved by the FDA but it could be days before it's approved. Basically they drill a hole in my skull and implant a similar device as the VNS. He said he opted to go with the VNS because it's less invasive and will probably have the same success rate. (I don't think a hole in my head sounds to pretty anyway).

Today I'm calling the nurse for an appointment with the surgeon for implanting the VNS device. I told him I want to have the surgery before the end of the year because I've reached my insurance deducible so the procedure will be free.

It looks like October is going to be a busy month.

Days & Days

This past Saturday was probably the best day I've had since being "sick" (I don't like using that word... and I really shouldn't). Sara and I went to the Bay View Bash in Milwaukee with our friends Paloma and Todd. I treated myself to a couple beers (you heard that right) and I felt great. It was dark, there were fire jugglers, guys with dreads running around in their boxers, people with painted faces halloween-style... it was just weird and fun.

Then last night I felt so tired (even after resting Sunday), this usually means I'm prime for a seizure. I was having little ones where I start the dreaming feeling and I get really dizzy on the right side of my brain. Lately I've been noticing that I go blind in my right eye while this is happening. Sometimes this follows a full seizure where I'm totally unconscious and sometimes there's just the small "awake" seizures. They feel the same so I have to find a place to sit where I won't hurt myself if I go unconscious, kind of like a dog finding somewhere to die (sorry for being morbid but that's what I'm thinking while searching fast for a couch or section of floor, moving sharp objects away).

Sara insisted that I go to bed at 8:00pm last night. I agreed after a little push. While sleeping I dreamt horrible dreams. It's fascinating how the mind can come up with such dreadful scenarios. I woke up several times where I had to wait a second to realize I was awake... kind of like you'd see in movies or on television.

Now, this morning I'm exhausted from so much sleep. I'm trying to look up topics online that will change the way I'm thinking but all I've done so far was look up old photographs from college or just after I graduated. I have them stored on my external hard drive at work. Sometimes looking at them reminds me of what is was like to have so little but so much to live for... if you know what I mean.

I'm just thinking there's days and then there's days...

Prostatitis

I woke up in pain two nights ago with a dull ache in my lower half. I felt around and found a swollen lymph node. I took a Vicodin so I could sleep and made a quick appointment with my GP yesterday. He "man-handed" me (which we won't go into) and found the lymph node and a swollen prostate. He diagnosed my with Prostatitis. I'm guess I'm dehydrated from my medication and not drinking enough water so bacteria isn't being flushed out of my system. It's an infection so he put me on a drug called Cipro. He checked if it conflicts with my Epilepsy or Epilepsy medication and he said it shouldn't.

When I got back to my office I called my Epilepsy doctor and the nurse told me that Cipro cancels out Epilepsy medication in some people (I have had a couple problems... major seizures... while being on certain antibiotics). I called and warned my GP that the drug may cause problems. I told him that I was going to take the meds but my Epilepsy doc said to stop taking it and find a new drug if I have a "breakthrough" (seizure).

Don't get me wrong, I think very highly of my GP but as soon as I got back to my office I looked up Cipro and one of the first side-effect warnings was that some people with Epilepsy may have seizures. A simple Google search.

I'm taking the medication now obviously because I want to be cured, but at the first sign of a seizure there's very little choices in antibiotics. My lesson... always drink a shit load of water with my meds.

VNS/New Seizure

I talked to Mr Macken's nurse and he believes that we should try the VNS device and if we don't have success then we'll move to the IVIG/steroid treatment.

....

Today I had my first full seizure at work. My co-worker Josh heard me at the break room table gurgling and when he walked in the room I was drooling, I think it was the end of the seizure. When he gave me a napkin I didn't understand what he was saying and my boss was there asking questions that I couldn't answer.

I felt the seizure coming on but time seemed to jump about 10 minutes. It feels like a blink. I didn't get much sleep last night and usually that's the reason for my seizures, or at least I tell myself that's the reason. I feel like I was just crying, if you know the feeling. A warm sinus feeling. It almost feels good...

IVIG

The doctors in the Neurology Department at Northwestern apparently get together once a month or so and talk about certain patients and get feedback from each other. A couple weeks ago I was the subject of conversation. I had to wait for a while to talk to my doctor's nurse to get even a little info on what they talked about at the meeting but she told me that before they try the VNS device (implanted in my chest and neck) they were going to try a procedure called IVIG (Intravenous Immunoglobulin). I've been doing a ton of research but from what I've read it's a solution made up of plasma from thousands of donors and it's pumped into my veins. They do it for a couple of months. I understand it (through very complicated explanations online) as a solution that suppresses infection in the brain. Maybe because I'm not responding to medication there's something else in there (like an infection/disease) that's still active. After all, I got Epilepsy from Encephalitis.

Either way, it seems better than surgery at this point but it makes me kind of nervous that there may be something lurking in there that I've had for all this time.

Madison Wedding Seizure

Embarrassing seizure before a friend's wedding in Madison on Saturday afternoon. It was outside at Monona Terrace in Madison. There were tables and chairs far behind where the wedding was taking place so we sat there and listened and watched from a safe distance just in case something else happened during the wedding.

This is getting ridiculous. I feel kind of trapped. I can't trust my brain enough to attend even a 30 minute wedding for the fear I'm going to have a seizure? I just hope I didn't offend the bride and groom when they saw us sitting so far away.

I took an Ativan, which is a high potency drug designed to stop more seizures and break the cycle that I usually go through, like side-effects. It worked very well and I didn't have another seizure which is rare because my seizures usually come in waves. I'll have eight over the course of two days then none for a month.

Hopefully if I go through with the VNS I'll feel confident enough to go back to a normal routine and not be afraid to sit through events (like weddings, etc) for fear of a seizure. My wedding is coming up and what a memory it would be to have a seizure on the alter. Ugh.

Neuro Surgeon Visit

On Wednesday we visited with Dr. Rosenow at Northwestern Hospital in Chicago. He would be the surgeon implanting the VNS device on my Vegus Nerve and running the wire to a battery put in my chest.

His resident was great. He asked me a lot of questions and really seemed to want to know about me and why I was interested in the device. He had great bed-side manner and I felt calm while he was in the room. I don't remember his name but I should've written it down for this blog.

Then Dr. Rosenow entered the room 15-20 minutes later (a significantly long time to keep a patient waiting if you ask me) and could've been more obnoxious. I take this disorder very serious and to have an appointment for a possible surgery, I expect a doctor to be more professional and to understand that we're under a lot of stress. He made jokes about taking my whole brain out because it "makes the men more docile and the women like that, but we'll keep the sports part of the brain in!". As I've explained before, the VNS wire wraps around the Vegus Nerve in my neck like a spiral, but he asked us if we knew what a curly fry was, then he explained the VNS as "three curly fries wrapped around the Vagus Nerve". I'm a grown, educated person and I feel like he treated us like we were in grammar school. He was loud and animated and just not what I would expect from someone who is going to dig deep inside my neck and chest. Apparently he comes well respected and I trust my Neurologist, Dr. Michael Macken (for which Dr. Rosenow referred to as "Mike" which I thought was very unprofessional in front of a patient).

Dr. Rosenow seemed like he was pushing an experimental procedure on me where my scalp was removed (while I'm awake!) and "electrodes" would be implanted deep inside my brain, then a wire would run down to a battery in my chest. Dr. Macken and Dr. Rosenow are going to talk and see if this is a good option for me, but I can tell you now that it will NEVER happen. 1.) It's experimental and only 100 or so people have had it done. 2.) My Epilepsy (in my opinion) is not that bad to where I need major brain surgery, and this would be major, major brain surgery. 3.) The procedure has too many if's and there are risks of brain bleeding and possible paralysis or coma (which he said have happened).

I know I'm at the end of options because medication isn't working but I don't think I'm ready to have my brain "removed" for science.

VNS

At my appointment yesterday afternoon we received final conformation that we've really exhausted the chemistry experiment in my body with all the different drug combinations I've been on the last couple years. Dr. Macken's push now is the Vagus Nerve Stimulator. In the picture you can basically see what it looks like in my body.

The VNS is a pacemaker-like device that's implanted in the left part of my chest, under the skin. A wire will run up and wrap around the Vagus Nerve in my neck. A small amount of electricity will pulse from the device, through the wire and straight to my Vagus Nerve that, in turn, runs to my brain and effectively lowers or prevents my seizures.

I've read some about the device and there's really nothing but praise about what it can do. It's an out-patient procedure which it good or bad depending on the pain and recovery.

At this point, I'd do anything to lower the amount of entries in this blog.

Short Wait

I'm sitting in the waiting room at Northwestern for my appointment with Dr Macken. I'm going to have a lot of questions about my medication for sure.

Something I told Sara before but when I'm at Northwestern I feel very comforted, like I'm safe. Almost like being admitted here for seizures was a good experience. It's like when I'm here I'm home.

What I Have

Last Friday, Saturday and Sunday I experienced six of the smaller "awake" seizures (the kind where I get really dizzy and start a dreaming feeling in the back of my brain). It's been very frustrating seeing as though I was put on this "miracle" drug called Vimpat that was supposed to level me out.

After calling the nurse they thought it was a good idea to put me on another drug called "Mephobarbital" (I think that's the spelling, I don't have it in front of me). Now I'm on five medications and I take them at four different periods of the day. My god.

I have a doctor appointment next Monday and I'm going to have questions about the amount, for sure, but also the reactions to all of these medications together. We all know that the medications I've been on in the past have swung me into deep depressions and violent outbursts. I'm not really willing to revisit these dark times.

The good thing is I'm feeling better emotionally. Even though I had the seizures last week, I also had a job interview which, even if I don't get the job, makes me feel proud of my work and gives me hope that people are noticing my talent. I know it's pretty lame to add quotes but I heard one lately that kind of got me thinking about my place and how I should live. "A man can not be made comfortable without his own approval" (Mark Twain). I think I need more self confidence. Whether it be about my body, where I live, my financial problems or what cards I've been dealt in life. I have to start thinking about what I have and not always focus on what I'm missing.

Well Beyond Beaten Down

I just keep falling. Sara is all I really have. Don't get me wrong, I'm the most grateful fiancé there could be, it's just very turn in life has been painful. This week I had eight seizures, spent time in the hospital, I've been having horrible nightmares to the point where I wake Sara up so she can confirm that I'm awake. Most recently my job is falling apart. I'm hourly now which most likely means less money, I even had a verbal scuffle about the situation with my boss. I don't know how things are going to work. I just can't seem to find a place to climb.

Life Lesson

"You learn to fly while you're falling."

But, it just feels like every thing's falling apart right now.

Western Sunrise

After the string of seizures last week a funny thing happened in the days following. I'm unfamiliar with my home, work, neighborhood... I know where everything is but it's like I moved to a new city. The sun seems like it's in the wrong place or something. It's really hard to explain.

The last time this happened was when I had my seizures for the first time. I didn't even recognize what a computer screen looked like... I had to "relearn" all of my computer programs. I walked around my office, knowing I worked there, knowing where the break area was but when I found it, it looked as though someone remodeled it. I knew where my office was but it looked like someone had moved the furniture around.

This is kind of how this week has been. The sun has been coming in windows in a way that I'm unfamiliar with what time of day it is. Waking up feeling like it was 4pm. The sunset feels more like what I think the sunrise should look like.

I've read a little about how a seizure can play with your mind like this, and because I experienced eight in a short amount of time, it's possible that I'm thrown off. I just wish I could better describe how this feels. I wish I was a born writer and could relax at a computer and put into words a better picture for you how it feels to wake up in a "new" room and be able to study the faces of friends and family in a way a stranger might. To basically have the sun rise from the west.

Business of Epilepsy

I received an automated call from the business office at Northwestern Memorial this morning. It was to remind me of my balance and asked me if I want to talk to a representative about setting up a payment plan by pressing "0". I pressed it and applied for assistance.

Given the amount of money Sara and I make combined we should be able to take some money off the $500 bill. Hell, even if it's fifty bucks I'd be a smiley gentleman.

(FYI, I'm typing this with double vision from my medication so if there are misspelled words, I apologize)

Money has a lot to do with any disease or disorder. I've found that it helps to save up for future visits like most people would save for a car or pretty dress or vacation. In the last 2 years since I've had Epilepsy the only time off from work has been from doctor visits and hospital stays. Last week I stayed overnight at NW I really liked the idea of someone bringing me my food and changing my bed sheets plus I get to wear he gown and little footies... they're comfortable. When I was there they walked around and asked me if I wanted coffee about an hour before my meal... a little cup of coffee brought to me. If that's not vacation I don't know what is. I got to know that lady, she'd come in my room smiling... "food and nutrition" she'd say. I'd say "hey, thank you!" she'd open my table, move it over my and sit my bed up. Talk about service. Hmm, it might be worth the money just for that!

Eight

From Thursday to Friday I experienced eight seizures. These were new seizures. I would go unconscious... to you I'd look like I was awake... first having the seizure then getting up and doing weird things like taking off my shoes. If you started to talk to me I would give you a blank stare because it would be as though you were speaking a different language. To me I was completely out. I remembered the seizure crawling up my arm to my head and the next thing I know I'm across the room with one shoe off and drool all over myself.

Usually I'm asleep or a small seizure happens while I'm awake and conscious. After six seizures we decided to go to the emergency room. On the way there I had one in the car. We finally got to the hospital and Sara reminded me that I wouldn't get any food so I better eat something before I'm admitted. I asked for the greatest hospital cheeseburger and found a place in the cafeteria to eat. About three bites into my food I felt my hand and leg go numb, my eyes got dark and sounds went quiet. All I heard was Sara tell me to spit out my food. I got one swallow in and the next thing I remember is being in a wheelchair down in the emergency room.

Sara says nurses eating in the cafeteria rushed to help and soon emergency room nurses came to get me. I was awake to them, they thought they could talk to me but I was out. Walking dead you could say. I wasn't saying anything, Sara says I just looked confused wondering why I couldn't finish my food.

When I woke up in the emergency room I already had an IV in and they had pumped me full of Ativan (a strong emergency seizure medication) and the seizures stopped and I fell asleep. We waited in the emergency room for a bed in the neurology department. When we finally got one I was hauled up there and could barely stay awake. Sara stayed for a little while but left after 11pm.

Hospital nights are rough. There's always someone waking you up to take blood or the check your vital signs. Usually these things happen from 3am-6am. You NEED drugs to get any rest.

Sara got there on Saturday and stayed until I was able to leave. The doctors mixed my meds again and attributed the relapse to an antibiotic I was taking for a skin rash. They asked if I wanted to stay another night or leave Saturday night and I chose to get the hell out of there!

Now I have to be watched again. No locked doors, being by myself for long periods is not good. It's quite a kick in the teeth. It's cliche but I've taken one step forward and two back. Of course I stopped taking the bad medication so that will help but the fact that something so small can make me feel like that is scary. Yeah, I'm a little depressed. Being babysat takes a toll on your ego...

Less than a Man

On Wednesday I had another seizure while I was sleeping. Sara let me sleep afterward and didn't wake me up for awhile so when she finally did I could talk and understand what she was telling me. I never believe I had a seizure at first, it's odd, like she's lying to me or just being overprotective.

Thursday was a day full of the small seizures that happen when I'm awake. The voices in the back of my head, the numbing of the right side of my body, staring spells. These happened at various strengths all day. (Simple-partial seizures)

Now I'm going to say this. They've been moving around my medicine a lot lately. Taking me off one med completely, lowering another and steadily raising Vimpat (the new miracle drug). Plus I'm on a mild sleeping pill and another to combat the depressive side-effects. A lot of medicine and chemistry to be fooling with for anyone's body to take. (Or am I just justifying what I'll tell you next).

Last night I lost bladder control. It wasn't a huge amount so I could take care of everything rather quick, but I didn't sleep a wink after that. I wish I could say this was the first time that this has happened but sadly I've had this happen once more before I started this blog. It's another emasculating hit. My head hangs low today.

Knock on Wood Never Works

My last post had me knocking on wood that I'd be seizure free on this new medicine. Well I had a small one while I was sleeping last night. Very mild because I could talk and understand what Sara was explaining to me when she told me I had a seizure.

I upped the dose on the new medicine and got rid of the medicine that gives me kidney stones entirely. That may help (but I'm not knocking on wood).

Be Positive

I thought I would take today's entry to be positive. I haven't had any problems since being on this new medicine (a big knock on wood) and there have been no real side effects. I mean that in the way of dizziness all the way to serious depression.

I have a doctors appointment on the 12th of July and hopefully I haven't had any problems because I'm going to take that time to finally ask him if I can drive. It's been so hard having Sara cart me around. Even if I get to drive just to work it would be a real boost to my ego. The freedom of just being able to drive is something people take for granted. If I look for a new job it has to be on the train line or within Sara's route... that kind of thing. It really puts a damper on my possibilities.

I know this blog can be drab and depressing most of the time but it's a place for me to release. The problem with us is we get no news... not bad or good... none. The doctors are still working out what's happening in my head and mixing the right chemicals to combat the disorder. It's frustrating and it seems for every one step forward we take two steps back, a cliché I know. It's tough to be positive when it seems like you have nothing going your way. My brain, driving, job, money, city. I'm getting married, that's a big positive. It's added stress but it's not the day that matters, it's vow I'll make to Sara that no matter how broken I may be, I'll love her. It's her vow that she'll be with me, by my side, in sickness and in health.

Money

I'm afraid to check the mail these days. The bills are starting to pile up. One from the MRI, then I pay for the Northwestern Faculty Foundation (the doctors), then the Northwestern Hospital itself. The MRI is $400, so far the NFF has raised (and will continue to raise as my insurance finalizes claims) to $600, and I checked the NWH and it's above $2000. My deductible is $3000 but it's still a hefty price for someone whose saving for a wedding and really scraping the bottom of the barrel. I'm going to apply for financial assistance by giving them my student loan award letter (shows them how much tax I'm paid on the loan last  year) and my W2... blah, blah, blah. Last year they lowered it from $2500 to $800. I'll keep my fingers crossed, but it's really the other bills tacked on the are killing me. $100 here, $100 there, each doc appointment is $30. I'm already on a payment plan from ATI physical therapy (shoulder surgery) for $50 a month for 18 months...

You shouldn't have to save up to be sick.

Seizure 5/31/10

I had a new seizure on Memorial Day evening. I fell asleep early on the couch because we had a big day of driving home from my parents house in Wisconsin (plus I over ate).

These seizures happen (for me) when I'm asleep are relatively small but larger than the ones I've talked about when I'm awake. My head tilts to the right, my lips quiver, and my right arm tightens slightly. When I wake up I feel very confused, I have a headache and when Sara asks me questions I know the answer but I can't verbalize them.

She was asking me questions and all I could do was look at her and smile in embarrassment.

Today I feel "blips", little sharp dizzy feelings that follow a day like yesterday. It almost feels like I'm going to fall into another seizure if allowed to go to sleep.

I'm obviously angry. I was doing so well. I hadn't had one of these kinds of seizures in months, just the small awake ones (which I was sure we could control). The bigger sleeping ones mean three more months of no driving for sure. My doctor moved around my medications, past the drug with kidney stone side effects and on a new drug that's really expensive ($100/month) but if it works, I'm game.

Lower Dosages

I called that Doc and told him that I couldn't take another kidney stone.

So there's the one medication that gives me kidney stones. Then there's one medication I'm taking that gives me double vision when combined with another medication. The darling doctor decided to lower ALL my medications. This is good news. If I react well to the lower dosages that means less side effects and maybe I'll be able to drive again soon.

Two days into the lower dosages and I feel great, no double vision and no real side effects... yet. Give me a month and if I haven't had a seizure I'm driving again dammit.

Kidney Stone... still!

I'm still dying from the kidney stone... 2 days! Moaning, pacing, rolling around on the bed, biting a pillow. The closest pain a man can get to childbirth, I assure you.

My doctor gave me a pain medication called Vicoprofen. It's Vicodin and Ibuprofen put together in one magical pill. It works wonders. I'm floating on a cloud right now. :) I can still feel a little pressure, but my eyes are heavy. I'm at work so I'm trying to get as much work as I possibly can get done but my boss is sympathetic because we've talked about these and I think I might've scared him a little. Say to a bunch of guys, "Yeah, a rock is coming out of my penis," and you'll see'em grab for their crotches and nod their heads, "It's cool man, take as much time as you need."

Kidney Stone

One of the unfortunate side effects of the medication called Topamax is frequent kidney stones. If you've ever experienced one you'd know it's one of the worst sort of pain of could imagine. It's like a knife stabbing you very slowly in the abdomen. It lasts for about 3-4 hours and even though I have pain medication the pressure is still unbearable. I'm keeled over.

New Low

I'm definitely stuck. The place I'm working now is in danger of going out of business. That's what we were told on my birthday.

I told Sara that the Epilepsy has gotten me to the point to when I'm working to survive and not to succeed in design. Like working for a paycheck to pay for having it because it's so expensive. I just don't think this is right. I should be able to buy a house, or save for my wedding without having a separate account for medical bills.

Sara talked to a woman from the Epilepsy Foundation about my rights as an employee for when I apply for a new job or when I get a new job. I hope it won't be complicated. I hope I just go to work like everyone else. I just want to wake up in the morning, get on a train for the city, do good work that I enjoy and come home satisfied and paid enough to support my life.

"Do you believe in God?"

From September 2008 until January 2009 I was on a drug called Keppra. It's obviously a very strong seizure medication that has serious side effects. My side effects: suicidal thoughts, violent outbursts, panic attacks...

One morning I was on the phone with Sara about whether or not we were going to my parents house on a particular weekend and I had an outburst and punched a door and broke my hand. I was in a cast for a month.

No closed doors. Don't block the door. I need to be able to get out or I'd make fists.

If I don't know you or if I just met you I treat you like a little kid would treat a stranger. No handshakes, standing behind Sara for "protection".

Then it happened. Sara and I started arguing about my behavior. I ran down the hallway and ran my head into the bathroom door, again, again, again. I got on my hand and knees and crawled into our room growling and drooling, not knowing if I was bleeding from hitting my head on the door. I laid half on the bed and half on the floor. I was drooling anymore, just foaming and gargling, screaming words not even I could understand. Sara stood over me obviously trying to make sure I didn't hurt myself. This lasted for at least a half and hour. Once I calm down. She got me ready for the drive to the emergency room at Loyola.

My face was sunken in, eyes glazed, I wanted to die. We walked in and as soon as I saw people and the room I couldn't handle it. They brought me in, strapped me down into a gurney while I had another growling drooling episode. I arched my back, I screamed for Sara. They put me in a white room with a gown and closed the metal door that had a little window about 12 inches by 12 inches. I stood and stared. They opened the door, inserted an IV and pumped me with drugs.

They put me on another gurney and wheeled me into a room with curtains and told Sara they were going to look for a place for me at one of the mental health facilities. It got late so Sara reluctantly went home and I slept, drugged on a gurney.

We're on the west side of Chicago in the emergency room so there was bound to be some scary things coming in. Not long I heard a very drunk man cussing (F*** your mother!) out the entire staff... they put him in the white room. There was a shooting or something so people were being rushed in and I saw the mop come out for the blood. Then next to my room there was a man coming down off meth. He had overdosed or something. They were giving him some kind of drug to counteract the meth. He moaned, he fought, he cussed. These same events happened all night. I kept hearing them say my name when they were calling different mental facilities.

The next morning the side effects had subsided and I wanted to leave. I was scared. My Mom showed up, Sara was there. The psychological doctors came in to examine me and they really had control of my future. If they found a place to put me and had seen fit to put me there, they could. I told them I was fine and it was a side-effect to my medication. They brushed that off immediately like I was making it up. "No, no, Keppra!" Nothing. Then I brought out the big guns.

"Trust me, it's a side effect to my medication. I would never do anything to hurt myself. I want to live. I love my life, I love my family, I love my God. Please!"

They let me go. I still think to this day, "I love my God", where did that come from? Was that just something I said to get out of "jail"? I've never publicly talked divinity and Epilepsy. Why then? Was it the blood, meth addict, white room? I'm not at all religious but someone or something got me through that night.

Vimpat 150mg

I switched the new Vimpat medication to 150mg this morning and I could barely stand the double vision was so bad. I’m now on three seizure medications: Topamax, Lamictal and Vimpat. All very strong medications with they’re own side effects but Vimpat is killing my eyes. I called my nurse and she’s moving around when I take the medication. Instead of 8am and 8pm, I’m spreading it out all day. Great, I get to bring my pills to work!

Management

Let me explain why I named this blog "Management".

The word, for me, is a strong one. It's been a big part of my life. We manage our schedules around doctor appointments that have now broken into my vacation days at work, doses of medicine and exact times on which I should take them, the half a dozen side-effects of the medication (cross-eye feeling, rash, hair loss, kidney stones, psych probs), car pooling, average of 1-2 seizures a week....

But, I'm sure people with kids or with really busy lives could rattle off much more stressful things that they deal with on a daily basis.

"Management"

I'm managing. When I think about where my life is right now there are a lot of doors that are closed. I'm not looking for a pity party but now I'm basically writing for myself. Imagine not knowing minute by minute if you'll still be conscious. There's a depression very low in me. They say it's "common in Epilepsy patients" and "please see a psychiatrist" or "more medication could help". Describing how I feel a million times to a psychiatrist is not going to make me better and one more pill added to the five I take now is not an option. When I say "I'm managing" I'm saying this with my head up but with a shaky voice.

I have a strong will. My brain is broken, but my heart is definitely strong.

EEG Education

This is a picture of me during my last EEG. They hook up wires to your head to measure the brain while you have a seizure. In the photo you can see they gave me a really crappy gown in the emergency room, but I asked for a nice one after they hooked me up :). The experience is very odd. It's like having a long ponytail-leash. You ring the nurse to go to the bathroom (or go in a bed urinal) and the nurse knocks on the door every minute to see if your okay. All along you have a looong cord from your head to the macine across the room.

There's a screen behind the bed monitoring every move my head makes, literally every blink. It looks like a digital version of the needles on a lie detector test. It's kind of cool to watch. I'd find myself opening and closing my mouth, raising my eyebrows, etc... just to see the "needles" move rapidly.

In the room they put pads on the bed rails so I don't hurt myself when I have a seizure. They're embarressing for some reason, like a kid bowling with the bumpers. I can't quit understand why I feel this way. I also get a little button to push when I start feeling a seizure coming. For me words start looking like a foreign language and I get tunnel vision. I push the button and it's lights out. When I wake up I don't know who I am or what happened. The nurses ask me questions like do you know where you are? What your name? Where are you? I can't speak and I don't know the answers, but I do remember the event later that's why I can tell you the story now.

Once the doctors have their results I'm released with a huge bill and a headache that lasts for days. I get small answers and a new mix of medication. One EEG worked and one didn't... I'm 1 and 1. Shit.

New Vimpat Side Effect

The new drug I'm now taking called Vimpat has an interesting side effect. Remember I said there's a fine line between seizures and serious side effects of these kinds of medications. I've been up-ing my dosage  every week to get to my final dose of 200mg twice a day and as I'm doing this I notice that just after I take the medication I see cross-eyed. This has happened before on another medication and when I ask Sara to look into my eyes she can see them fluttering very fast.

Because of the Epilepsy and the strong medication side effects I'm not allowed to drive. I drove from May 2009 until February 2010 then I started having these stronger "new" seizures while I'm awake. Sara carts me around everywhere. It's very emasculating. I feel like a sick person, or a kid waiting for mommy to pick me up.

I should count my blessings because there are some people who don't have someone to take them to work so I can't imagine how they survive and make a living. Plus for a good 2 months after getting out of the hospital I had to tell someone when I was going to bathroom/shower, and couldn't lock the door. Sara would knock every 3 to 5 minutes. No swimming, walking across railroad tracks, etc. Some Epilepsy patients still live like this.

Nurse Jackie

I may have to wait until the end of the day to write an entry because I've written three so far this morning because so much is happening.

My savior Nurse Jackie at Dr. Macken's office (my Neurologist at Northwestern Memorial) talked to the pharmacy and got my $400 medication down to $100 and she's sending me a card that I show them that will take an extra $40 off! $60 is still a lot of money but what are you going to do? Health is health.

I told her about the seizures and she'll tell Dr Macken and he'll get back to me with advice. It's usually all the same. "I'm up-ing your dose", "Go in for a blood test", "We need to catch this on EEG!! (frustrated)". Can't blame him. I'm discouraged, continually depressed, I feel like I have nothing. There's never any answers, good or bad, I'd take both at this point.

Weekend Seizure/$400 Meds

I called that doctor today about the seizure I had this weekend at my Mom's while watching SNL (forgot to mention... missed Betty White for christ's sake), the seizure yesterday in the car and the $400 medication he has me on currently. It obviously isn't working and if anything making things worse. Who the hell can afford this kind of medication. No generic, it's a new drug, it works on patients with normal seizures, not the kind of strange seizures I have. They have openly said they haven't seen this kind of seizure and because they happen so sporadically, they can't catch it on the EEG (see description on the post called "Up to speed...").

Seizure 5/11/10

Riding home from work with Sara (my fiancé) last night I had the simple-partial seizure. Voices and pictures in the back of my head, very dizzy but still alert enough to see and hear my surroundings. After the seizure the ride home really sucked. I was depressed because they just piss me off. I feel like I've taken a step backward every time I have one. Sara did an okay job cheering my up. We went to my favorite seafood place for dinner, Braxton's. An upscale place, but with an awesome $5.00 appetizer happy hour. We ate calamari, mussels, and split a burger (I had to do a burger, I had a damn seizure after all!). On the way out my right side of my leg went completely numb. This happens when you're having seizures. I call them tremors. Little sparks that remind you of the disorder.

Up to speed...

Let’s start by getting you up to speed... quickly.

August 2008, Encephalitis. The night before I was having a beer watching a movie and the next thing I remember is two weeks later watching a nurse change my IV. The Encephalitis caused massive seizures the first one at home I broke my scapula which I’ve heard is quit a feat. I was put in the intensive-care unit while my friends and family scrambled to move me to a better hospital which they did end up doing. From what family have said the “virus” worked it’s way through my brain causing me to be someone I’m not. Violent, confused, often not recognizing my own family. 

After the two weeks and I finally started to become conscious I had noticed that I had lost a considerable amount of weight from being on the IV. They had gotten the large seizures under control but I was still having seizures while I was awake every 15 minutes. These were where I would stare and drool. I was awake but it was like I would sink into myself. I couldn’t move or communicate but I was there. I could still feel. I was still having moments where I wasn’t recognizing family at this point. One time in particular I didn’t recognize my Mom and she didn’t take it very well and for good reason.

The virus was still working it’s way through my brain violently. I was going color blind at times, having seizures on the toilet so I needed help. This was a bad time to be conscious.

After about two days the 15 minute seizures had subsided. I was drugged to say the least. Mind you I still have a broken scapula so walking (drugged, broken) was impossible. 

I was finally home. No seizures but on five seizure drugs with pain meds “just in case”.

After 2 weeks I slowly went back to work (slowly, slowly, slowly). After two months I was at 80% and relearning my job (yep, I said it) and the Epilepsy looked like something we thought we could handle. Then in November, a few days before Thanksgiving Day, I had three major seizures and had to be hospitalized again (in the same room to be exact).

Now here’s the catch 22. Medication side effects. I was on a drug called Keppra. Some side effects are thoughts of suicide and panic attacks. Bingo. Three months of hell. I broke my hand punching a door during one of my violent outbursts caused by the medicine. I couldn’t be in closed rooms, and I constantly 

thought of cutting myself. Finally I snapped. A breakdown. I was brought to the emergency room where I stayed the night while the staff looked for an institution that had an opening. My Mom and girlfriend were there to defend me and break me out before they could find an opening. The next day I was taken 

off Keppra and I found a new doctor at a new hospital.

My new doctor immediately ran a weeklong EEG. An EEG is a test where they hook up electrodes to my head to measure my brain during a seizure by taking me off all my medication. I had three, then I was released. He mixed a new dose of medication and I was seizure-free for nine months. I was driving again (I had to re-learn that too). 

After nine months I had a few small seizures while I was sleeping. When we called these in they were concerned but they said that they were small and probably just a “blip”. That was December 2009-January 2010. He was mainly right. I haven’t had a “blip” in a while.

Here’s the new development. Since being with the new doctor and on these new drugs I have these moments where I get very dizzy, start seeing pictures and hearing voices in the back of my head. They’ve been getting stronger and strong to the point to where I had my first seizure since August 2008 that I have a seizure while I awake. Every other seizure I’ve described has been while I was asleep. These are Simple-Partial Seizures. I’m awake while I have them. I can talk to you, even though I’m very dizzy and distracted. I’m very nauseous and I’ve lose consciousness twice. 

That’s where we are.