This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!
The last thing I do everyday is take my meds. I get my glass of water and fill the cats’ bowl with fresh water. Then I take my keppra, lamictal, vitamin B12, calcium and cannabis. I like to vape a 1:1 THC:CBD hash oil. It’s a beautiful amber colored viscous liquid that keeps my seizures at bay, just like the lamictal and keppra. After years of uncontrolled seizures, I have had months of seizure free living. It’s like being a new person again. I have searched for a magic ratio of seizure meds for years, decades. The addition of cannabidiol made all the difference. I can spend my days, awake and aware. I know what day and year it is. That has not always been the case. I have forgotten what year it was and even who the president was. I said Clinton when Obama was in office. Years were wiped clean off my memory for a bit.
Once I forgot my husband was having surgery. I woke up confused and saw written on the calendar, “Adam’s Surgery.” It was my handwriting sure as anything. I didn’t know what day it was or what surgery my husband was having. We only spent a year on doctor’s appointments and tests prior. I had seven or so grand mal, tonic clonic, seizures over the course of a week. My brain was like a mush of week-old oatmeal. Eventually I remembered the neck dissection and was able to go wait in the hospital for some of the scariest hours of my life, waiting for my husband to get his neck cut open and thyroid removed, and praying I wouldn’t have a seizure and end up in the ER. His tumor was large and visible to the naked eye. Somehow my brain forgot it all for a bit. It’s a bad feeling. Sometimes I wonder what it’s like not to forget.
Another time forgot I was lactose-intolerant. I used to enjoy many cheeses, but after I had my gallbladder removed, I haven’t been able to stomach dairy. It’s been years since I ate dairy. Then I had a seizure and forgot. My tongue was sore and I wanted something soft and cold to eat. I poured a big bowl of cheerios and ate the entire thing before my body reminded me of why I quit eating milk. I remembered too late. I considered tattooing a list on my arm. Number one: no dairy. I might forget again and revert to my cheese eating days. Who knows?
You never can tell what a day might bring, living with epilepsy. You might remember something from long ago. A forgotten memory triggered by sparks of electricity. You might be overwhelmed by a feeling of deja vu, or worse, jamais vu, when everything looks unfamiliar and strange. Instead of feeling like you’ve been there before, you feel like you’ve never been in own your home. It’s disorienting and scary. It can often lead to another, full brain, tonic clonic seizure. It might not. It might just be a fleeting moment of terror and confusion.
Sometimes it’s just a smell. Something lingering on the end of your nose, unrecognizable and familiar. There are over forty types of seizures. They might cluster together, multiple seizures in a short period of time. There might just be one. You might go months, years without one. You can’t predict when the electricity will go off and short circuit a brain.
Cannabis helps. It helps keep the brain waves at bay, steady and less prone to uncontrollable bursts of electricity. I am happy to stay medicated. The cannabis isn’t covered my insurance, and I am lucky to be able to afford my medicine. I am lucky to living in a medical state. I recommend cannabis to all my epilepsy friends. It’s made a world of difference in my life.