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.
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