When I was about 20, I started having grand mal seizures. Prior to this, I believe I was having petit mal seizures. Grand mals are easy to diagnose whereas other types of seizures aren't. I could've been having seizures for years prior to that first grand mal. As a teenager I had weird neurological problems that went undiagnosed. Perhaps they are linked to the seizures I started getting in early adulthood.
When I was about 16, I would experience really loud feedback noise in my head usually when I was about to fall asleep. It was creepy and when I told my mom about it, she didn't really take it seriously. Probably because we didn't have health insurance and she had gotten insanely in debt due to vision problems I had as a teenager. I sort of hate myself for that. Had I not had these vision problems, then mom wouldn't have gotten so deeply in debt and her life would've been different. But that's another story...
I knew I had sleepwalking tendencies because I had woken up in strange places around the house before. I woke up on a chair in my room staring at my bed once and I used to always wake up on the living room couch or in my mom's bed.
I also had very strange and vivid dreams. One in particular involved standing in the middle of the cul-de-sac at night in my pajamas and staring at my house while some sort of lighted aircraft hovered above me.
A couple of years before my mom died, I told her about that dream and how it was right around the time I started having these weird neurological symptoms. Was the dream just another symptom or was the "dream" the reason behind these symptoms? I was surprised when my emphatically Christian mom actually seemed to believe in the possibility that I was abducted by aliens and that was the reason behind my seizures and other neurological problems. That was so not the reaction I expected to get when I told her.
But I'm not going to get all X-Files here and insist that I was abducted by aliens and that it's the reason behind my seizure disorder. What I do know is that I have been on meds for my seizures for more than half my life and I want off.
First I was on Dilantin for 17 years and then it stopped being effective. Of course, this was back in the days of extreme partying which included lots of booze, pot and the occasional eight ball. The doctor put me on Topamax which made me stupid, gave me double vision, insomnia, paranoia and I couldn't sweat which made my weekend hikes to the Hollywood sign really challenging. It didn't give me seizures; although, I think I'd have preferred the seizures over the plethora of side effects I experienced from that shit.
After I moved to Florida to care for my mom, the neurologist put me on Keppra which made me depressed beyond depressed. I'm no stranger to depression but this was different. Usually when I'm depressed, I can find some shred of hope to cling to but with Keppra, there was no hope or light at the end of the tunnel. There was nothing but darkness.
Not only did I have suicidal thoughts but thoughts about killing my mother too-- I didn't see any hope for her either... only more suffering from that horrible cancer. I knew her days were numbered and I knew that her days of loving life and feeling free were over. The cancer had ravaged her and I would be doing her a favor...and myself one too.
My mom told me she was worried about the effect the Keppra was having on me. I did some research online and read about people committing violent acts on Keppra. The next day I was on the phone with my neurologist demanding to come off it. He then put me on Lamictal which is what I've been on for the last 4 years.
One of the side effects of Lamictal is a life-threatening rash. Fortunately, that never was an issue with me. In fact, Lamictal has been pretty good to me compared to the other drugs I had been on. I did notice a lot of hair loss and insomnia. At first I was on 200 mg but I could no longer afford it so a couple of years ago, I cut my dose in half unsupervised. Lamictal is also used to treat people who are bipolar so I suffered about a week of severe emotional trauma...and then I was fine.
My seizure disorder was always manageable. As long as I was medicated, I didn't convulse. Given the fact that I consumed so many mind-altering substances, it's no wonder I had seizures. I haven't done drugs in years and I haven't gotten extremely drunk in a while now. If ever there was a time to test the waters of life without seizure meds, it's now.
This morning I realized that I haven't taken my Lamictal in 3 days so I've decided that I'm not going to take it. In a week it should be totally out of my system. I feel like I'm losing the training wheels. If I succeed, this will be the first time since I was 20 that I haven't been on a seizure medication.
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