There are things only a person with epilepsy knows and understands, but there things a newly diagnosed person with epilepsy doesn’t understand.
- Epilepsy is not a disease – although there is not an official definition, epilepsy is not considered a disease, but a disorder (in the electrical functioning of the brain). When someone calls you sick, just tell them you are as sick as they are. It’s the truth.
- Photosensitivity is not a rule – although many people associate epilepsy with flashing lights, only 2-3% of people with epilepsy are photosensitive. So don’t worry: you can watch TV, go dancing with friends or play karaoke, with some precautions. Epilepsy seizures can be triggered by fatigue also.
- Epilepsy doesn’t mean decreased intelligence – although many associate epilepsy with a lower IQ (than in general), this correlation is NOT true. To give some examples to prove this -> famous people with epilepsy: Isaac Newton, Leonardo da Vinci, Aristotle, Julius Caesar, Agatha Christie, Richard Burton, Neil Young, Danny Glover and many, many others. Just to name a few.
- Epilepsy doesn’t mean seclusion – with some precautions, people with epilepsy have a normal life as any other person in the world: personal life, education, work and so on.
- Epilepsy isn’t rare – there are over 50 million people diagnosed with epilepsy in the world. Each year, about 200,000 persons are diagnosed with a different type of epilepsy. During their life, 1 in 40 persons will experience some type of seizure.
One year later, when everything was forgotten and I moved past what happened that New Year’s Eve, I had another seizure. In fact, two more seizures coming three weeks apart: one in February just after my birthday and one in March. All I remember is that I woke up with my mom and my sister hovering over me.
I was then officially diagnosed with grand mal epilepsy aka generalized tonic-clonic seizures. It seemed that the EEGs showed that I have something “different” in the left-side of the brain waves. No one explained what that meant exactly.
I realized what epilepsy is to me after I was prescribed Phenobarbital and had to set up a routine for taking them. It was a game-changer for a 15-year old high school kid.
Note: Epilepsy occurs when 2 or more seizures occur unprovoked by any immediately identifiable cause. In order to be diagnosed with epilepsy, these seizures must occur more than 24 hours apart.
I was 14 when I have my first seizure. I was my first ever party. It was New Year’s Eve 1999.
After “partying” all night, with a sip of champagne at midnight (and just that), I woke up at around 5.30 am with all my friends curling up around me and my mother and sister there to take me to the hospital.
The pediatrician (I was a kid after all) told my mother that it was a simple tetany seizure induced by alcohol (that little sip of champagne). She sent me home after giving up half of pill of Phenobarbital. I don’t remember the dosage. It took me three days to wake up after that Phenobarbital.
That was my first ever contact with epilepsy, even if I didn’t knew it then.