Dealing with epilepsy

5 things that a “junior” person with epilepsy doesn’t understand

There are things only a person with epilepsy knows and understands, but there things a newly diagnosed person with epilepsy doesn’t understand.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
Dealing with epilepsy

Realizing what epilepsy is to you

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.

Dealing with epilepsy

First contact with epilepsy

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.