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16 Signs You or Your Child Grew Up With Epilepsy

Epilepsy is a neurological disorder that is characterized by unpredictable seizures, but can cause other health problems as well. There are a wide range of seizure types, and each person may be affected differently. Epilepsy can develop in any person at any age, though it is most common in young children (especially during the first year of life) and older people.

Whether you or your child developed epilepsy during your first years of life or even a bit later, during childhood or adolescence, there may be certain experiences, behaviors or habits you have in common because you grew up with epilepsy. Some may have received an epilepsy diagnosis right away, while for others, it might have taken several years (or decades) to put together all the pieces. Whichever boat you or your child fit into, know your experiences are valid.

We asked our Mighty community to share a sign that they or their child grew up with epilepsy, which they now recognize in retrospect. Let us know if any of the following sound familiar to you or your family in the comments below.

Here’s what our community shared with us:

  1. “I was often written up for daydreaming at school when I was a kid, and it wasn’t until years later that it was discovered that I suffer with vacancy seizures, so who knows how much of my strange behavior was linked to that. Also since I was a very small child, I’d been having focal seizures which caused intense deja vu sensations. Again not until early adulthood did I understand it well enough to mention to my neurologist.” – Ismail S.
  2. “The first sign that my daughter had epilepsy was her grades dropped and she was very upset.” – Robyn D.
  3. “I was assumed to be daydreaming when I was in elementary school. Later, I was said to be clumsy because I would lose my balance and fall, for no reason. (For some idea of how come all that could be glossed over, I’m 71 now.) It wasn’t until three EEGs, a fasting blood sugar test and a cute baby boy later, that I learned about the epilepsy. I was 23. Ever since, it’s been constantly learning. Of course! New things are constantly coming to light.” – Angella C.
  4. To this day I do not wear a watch. I started having grand mal seizures at age 16, I am now 44. I have not had one in a few years, but each time I would have one, the battery in my digital watch would get fried. I got tired of replacing watch batteries. I guess it was from the electricity in my body from the seizures messing up the watch. And now I do not really need to wear a watch because I almost always am carrying my cell phone which has a clock.” – Barbra D.
  5. My daughter spent two years complaining about severe headaches. Meds weren’t helping and they were chalked up to teen stress. It wasn’t until she dropped to the floor and was unresponsive at school that we realized there was a much bigger issue at hand.” – Sarah S.
  6. The feeling of intense anxiety and fear that is the feeling I have during my focal onset impaired awareness seizure. I have temporal lobe epilepsy. I remember the exact feeling I have during the seizures, at least twice from my childhood. I also had deja vu very often.” – Laura E.
  7. Teachers telling my parents I daydreamed a lot… When asked what I was thinking about the genuine answer was ‘nothing at all.’ We now know that I was having absence seizures.” – Molly R.
  8. The deja vu feelings I felt multiple times daily. Being really sleepy. It all started in my teens.” – Brooke B.
  9. Slow or pause in breathing rate, fearful look in eyes, stopping of or change in regular interaction with current task. Swallowing sounds repeatedly inside of a closed mouth. Sleep for several hours afterwards.” – A.J.
  10. My baby would stop what he was doing and would make such goofy faces. I thought he was being silly. He was put on [medication] before his 3rd birthday after an abnormal EEG. He was officially diagnosed with epilepsy a few weeks after his 4th birthday. He turns 8 in October and we are still fighting! I still feel so guilty I didn’t know. We have our ‘red flags’ now and we have been winning the battle!” – Brooke H. 
  11. For my daughter it’s the instinct to yell out, ‘I’m OK’ anytime she drops something because we always jump to check on her whenever there is a loud noise.” – Andrea D.L.
  12. My grandma saying I was a daydreamer when I was 6. I didn’t remember going to school one day, took half a math test home and didn’t even take the test. Looking back, there are a lot of absent seizures and it’s concerning it went on so long before I was finally diagnosed.” – Mary D.
  13. I put my head down a lot in school, I always felt very sleepy and dizzy/lightheaded. People thought I was taking naps in class, turns out I was having seizures. I was diagnosed at age 2. So luckily, teachers figured out what was going on quickly.” – Olivia M.G.
  14. Since my childhood I had nightmares, I woke up with fear and sometimes sleepwalking. Sometimes I turned off in conversations. I do not remember many events from my youth, as if they did not happen. When I started working at night, my condition worsened and only at age 26 I found out what was going on. I take pills and finally my life is better.” – Agatha D.
  15. I daydreamed a lot in primary school. No one knew much about epilepsy in the 1980s.” – Alison J.
  16. “I’m a special ed teacher and I wish more people knew that staring or what some people call ‘spacing out’ could be a seizure. Oftentimes we spot it before the family or other caregivers. It seems like they aren’t listening or paying attention but it’s serious!” – Lisa C.

Getty Image by KatarzynaBialasiewicz

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