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Finally figured it out

I started having seizure when I was 12-13, officially diagnosed at 13. Completely freaked my mother out because I went face first into who was then my stepsister’s toy box or something, and my mom had no idea what was happening. The second time I had fallen down the stairs and got taken to the hospital where they referred me to a neurologist, and I got diagnosed. We didn’t know what the triggers were at the time so we took the usual precautions, strobe lights etc. and took my meds.
Fast forward to when I was 16, I was living with my father, brother and my then stepmom, I started having seizures more frequently than when i was living with my mother. My stepmom never saw a seizure before, because for some reason I have them in my sleep but anyways, we were watching a show then next thing she knew I was going face first into the floor, it was tile on top of a concrete foundation, totally freaked her out because next thing she knew my head was surrounded by a puddle of blood. Everyone had figured out by then that a seizure was about to happen because I make this eerily loud gasping noise.
When I was 21 I believe I was in the middle of cutting up chicken, it was just me and my brother at home, he heard me make that loud gasping noise and made it to me fast enough to grab the knife out of my hand that he said was like a couple centimeters from stabbing me in the eye. He has been one of the people I can depend on to make sure I’m okay during/after a seizure.
When I was 24 I was back living with my mother and stepdad (I moved back in with them at 21) pregnant with my first daughter I was a week from having her. My stepdad heard me fall in the shower and the next thing I knew I woke up in the hospital with nothing but a towel on me. I had to have an early C-section. Then when I was pregnant with my second daughter I was in the hospital once a week due to seizures!
Finally when I was 27 or 28 my current neurologist was so puzzled why my medications weren’t working and why whenever I ended up in the hospital due to a major seizure why nothing would show up on the MRI. So he said let’s do a 72 hour EEG. After that he finally figured it out! He asked me if I experienced any abuse as a child and I told him one of my father’s ex-wife’s son was always beating the daylights out of me. He said “Well that explains it. You have damage to your front right lobe. Whenever you are under major emotional distress, such as stress or anxiety. It triggers your seizures.” So he finally got me on the right medications. I refuse to see any other neurologist because he’s been so great. I’m 30 now and have had only 1 seizure in the past year. I’m on Lamictal, citralopram and Briviact. They work wonderful!

  1. thank you for sharing your story with the community. I’m glad your neurologist was able to help identify your triggers and get you on a treatment plan that has been helpful! I wish it hadn’t taken so many years, but I hope these medications continue to control your seizure activity. Sending continued well wishes, Julie (team member)

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