After my third seizure I began researching and learning about seizures and epilepsy. I was diagnosed in January 2012 with Idiopathic Epilepsy. Idiopathic means they have no solid evidence why you have developed epilepsy although they may have a suspicion. In my case we suspected a head and neck injury which occurred in January of 1991.
During my journey I began learning the many different seizure types and my memory was jogged. At some point during my first marriage I remembered having a tonic-clonic seizure in a doctor’s office following a blood draw. Since I remarried and no longer lived in that city or state, plus I had no idea what the date had been I wasn’t sure if I could get any information about the event. I decided to try anyway. I looked up the medical clinic online, downloaded and filled out their request for medical records form, wrote a letter explaining what I needed and why, then hoped for the best.
A week after sending off the information request I was shocked to find an envelope from the medical clinic. Inside was a photocopy of the exact information I needed including my previous doctor’s notations! I finally had a date for my first witnessed and documented seizure, it occurred on 11 May 2001!
More recently I’ve remembered many “odd” things that began happening a year and 5 months following the accident. Back then I thought they were just weird occurrences and brushed them off as being nothing. I had no idea that what I was experiencing back then were seizures. To me, a seizure was something that was dramatic and convulsive. I didn’t know that a seizure could be something as simple as having a strong sense of Déjà vu.
I remembered waking up in the middle of the night, unable to move or speak with a strong sense of fear. It seemed to last an eternity when in fact it only lasted 1 or 2 minutes. Many times as I was falling asleep I would begin to hear a man’s voice (like a news broadcast on tv) except I couldn’t hear the words being spoken, or I would hear music as if the radio was left on in the other room. I would get out of bed to go “shut off” whatever was left on, but never found anything on and the sounds I was hearing would stop within 2 or 3 minutes.
As things progressed I began having partial seizures (on an almost daily basis) where I would suddenly and momentarily be unable to understand the words someone was saying to me. They were brief, not understanding language for 30 seconds to a minute, but it was just long enough to lose track of a conversation. This caused me to have to ask people to repeat what they’d just said to me. I was so embarrassed and chalked it up to being tired or having “fibro fog” due to my fibromyalgia.
The Déjà vu happened pretty much on a daily basis until I was placed on Levetiracetam. I had grown so used to feeling it wasn’t until the medication began working I realized it was gone. It was almost odd not to feel Déjà vu because I had grown so accustomed it.
All these things point to the fact that I’d been living with untreated, undiagnosed epilepsy for nearly 20 years. Since I was not treated the seizures were becoming progressively worse, until finally in 2011 they reached the level of becoming reoccurring complex partial seizures with secondary generalized tonic-clonic seizures.
Although we’ll probably never be able to conclusively prove my head and neck injury caused the epilepsy, I am much more satisfied in my own mind that it did. Being able to trace back my seizure activity to within a year and five months of the accident has helped me feel a bit of closure as to “why” I have adult onset Idiopathic Epilepsy.
Hugs,
Cat
