Thursday, May 13, 2010

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.

Wednesday, May 12, 2010

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.

Tuesday, May 11, 2010

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.