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.