I was lying awake in the hospital bed around 1:45am on the 25th of this past week, having been off my medication for 36 hours and waiting for my 2:00am - 8:00am sleep deprivation wake-up call. I thought I would try to get some shut eye since I had fifteen minutes left, and was all of the sudden extremely exhausted when only 5 minutes prior I had energy like the Energizer Bunny.
What happened next? You can probably guess, of course - I went into a tonic clonic seizure (also known as a grand mal to some people). I don't remember anything else about the situation, but it sure was a tonic clonic and it struck me down in the worst way imaginable. The most painful one I have had in about a year now... Makes me feel thankful for the tons of seizures that I have on a daily basis. This seizure was nothing compared.
I awoke to my two night nurses vacuuming spit, blood, and tiny chunks of my tongue out of my mouth. I bit the side of my tongue off again like I always do during a tonic clonic seizures. One held my hand and assured me I would be okay with what appeared to be tears in her eyes. I was so confused about what happened, because I didn't even remember how it started. I didn't even remember hitting the "seizure" button that we're supposed to hit before a seizure strikes or when we feel funny.
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| "Seizure Button" |
I forgot about everyone that I knew. I forgot who my sisters Jessica and Eliana were. I forgot who my brother Jake was too. I had even forgotten who my handsome boyfriend was until an entire day later. The only ones I could remember were the father and mother who were with me from the start of my life. I only wish they had come to be with me.
With an injection of Lorazepam and another injection of pain killers for the terrible migraine I suffered, I felt in peace enough to be put to sleep. The doctors didn't bother try and keep me awake from 2:00 - 8:00am. At that point, there was no point! So I slept and slept, waiting only hours to do this all over again. Thankfully there was no going unconscious or biting of the tongue.
I was injected with a dye that would color the specific area of my brain in which is the cause of my seizures. The dye showed that my left temporal lobe is to blame, but my team of doctors (all of the sudden) have many more questions. They doubt that medication alone will ever be my cure, but they are not 100% set on surgery like they were once.
After I was injected with dye I was given a dose of Lorazepam and the rest of the evening was easy breezy. I got a brain scan so the doctors could see the parts of my brain colored by the dye, and my sweet boyfriend came to see me Thursday evening around 9:00pm and we laughed watching Star Wars in the hospital room.
I was embarrassed for him to see me covered in wires, glue, needles and as pale as a ghost... But Rafael has outdone himself as far as making me feel loved and comfortable. I enjoyed seeing him after all of the pain and terror of a trillion seizures.
Today, Friday the 27th, was less trying on the body. All that was required of me was a double dose of medication and sleep as the tech team monitored my discharge seizure activity until about 6pm. I had one more due scan without the presence of the tonic clonic seizure - so the doctors could see the difference in my brain on a normal day.
I didn't walk out with any reassuring words. I wasn't told that I would "for sure" be a candidate for brain surgery. This was a bummer - I won't lie to you. Nonetheless, the doctors "would like to believe that" I am and further testing will be done this month. I was upped another 1/3 of a dose of my Felbatol and I am FINALLY OFF OF MY KLONOPIN!!! It feels so good not to have to depend on that drug anymore.
I would like to share that the doctor isn't psyched about having me completely off of Klonopin as it was helping slightly with insomnia and anxiety - but I'm determined to go on without it. He insists that now I am without anything to control my insomnia I must avoid computer usage past about 11:00pm. So I will be having pre-scheduled blogs once agin.
I will have some of the regular "out of nowhere" blogs, but they will be less often and only for extremely important events or when I have extra time. So be sure to visit the upper left side of this blog site and enter my mailing list to be automatically updated. No junk mail, no spam, just ONE measly e-mail update when I make a new blog post!
Other than that, I still take 1,200 mg of Trileptal a day. Nothing has changed as far as that goes. But we are discussing changing me to entirely different dosages or even medications. (Felbatol isn't proven to be 100% safe for young fertile women at the moment - it's still up in the air!) I'm quite nervous about changing medications again. Especially since all the doctors agree that they highly doubt medication to be my cure.
This is all I have for now, but I'll keep y'all updated!!!
