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.