Do you ever have those moments where things are just too perfect? Absolutely nothing is wrong or hard in your life. I hate those moments. When things are too perfect - I know something big is about to change. Something hard is just around the corner. Those perfect moments are God's way of giving you a break and letting you recharge your spiritual batteries before the trials begin again.
Well, that something hard has spurred me into a series of posts about my life with epilepsy. It's something I've been wanting to share in hopes that it will help just one person. When I was getting diagnosed - so many times throughout my experience I would google my condition and nothing would pop up. No personal experiences. Just medical definitions. So I'm hoping my own personal experience will come in handy to someone someday.
I have what is now diagnosed as Complex Partial Seizures. Let's start this story from the very beginning....
During junior high something strange started happening. At the most random times and in the most inconvenient places (usually school) I would hallucinate. Sometimes I would hear voices. Sometimes I would see things in the air in front of me. Along with these hallucinations came this out of body feeling. Dizzy, floating, as if I was completely detached from my body. A loss of total control. My brain would wander in a strange and dizzying way wherever it wanted and I couldn't stop it no matter how hard I concentrated.
The most common reoccurring theme in my episodes at this age was Maria
from Sesame Street counting in Spanish...as I heard her voice in my head
I would usually see the numbers flying in front of me in the air...now
it's laughable, then it was terrifying.
When these "head spells" were done, I usually couldn't recall what part of the lecture I had missed in class or what my friend had been saying. But everyone around me was oblivious since everything was in my head and my body showed no visible changes. After each episode I would get massive headaches and feel very nauseous. I was thirteen and embarrassed. I kept it quiet at school. But at home - I let my mom know right away.
My mom was (is) amazing. She believed me instantly and took everything my 13 year old self said as truth. Seriously, I don't know if I would believe my daughter if she came and told me she could hear Maria in her head.
And so the doctors visits began. We went to a number of different primary care physicians explaining the episodes to them and we always got the same answer..."I don't know." Now that I'm older I wonder if some of them talked to my mom privately and told her it was probably just a ploy from a teenager to get attention. No tests were run. No blood work done. Nothing. No one really believed me besides my mom. Shame on you doctors.
So I found a coping method that helped sometimes. At the beginning of my head spells came a profound heavy sense of de javu - like my body and mind were swimming in memories. Sometimes if I could snap my brain out of this feeling I could stop the rest of the episode from occurring. If I changed what I was doing, where I was, etc as quickly as possible when this happened I could regain my sense of control and normalcy and my brain wouldn't spiral down into the black abyss of hallucinations.
Since they mostly happened at school I would quickly ask for the hall
pass to use the restroom and get out of my desk. I rarely went to the
restroom, I would end up in the halls, wandering, trying to focus on
reality. If I found something to read it would sometimes help, so I
usually headed to posters, etc and started reading. I would even step
outside sometimes for fresh air.
These "head spells" as we called them continued through high school. My brilliant mom had me keeping track of everything when they happened. Trying to help me find a pattern. I would write down the date, time, where I was, who I was with, what I was doing, and how I felt before, during, and after for every single episode. That log came in handy later - like I said, my mom was brilliant!
The head spells changed as I grew. I no longer heard Maria counting, and the frequency and intensity came in clusters. Sometimes I would go a few months without anything - other times I would have 3-4 episodes in one day.
Still no doctors believed me and I led a normal life telling very few people about what was going on, since I didn't really know what was going on myself.
*A small note about the doctors we saw. My family was very poor and doctors visits were very expensive. In hindsight I don't think I was ever taken to a specialist like I should've been. If I was and had been diagnosed sooner my condition now would be far better, and maybe even gone. So if your child is experiencing something take them to a neurologist now! The sooner treatment begins the more likely your child will grow out of a seizure disorder. If you have seizures past the age of 23 your less likely to grow out of them because brain development has stopped. I'll get to the research aspect in a future post...
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