Dealing with epilepsy

My auras and how I’m controlling seizures with them

I have heard and read about auras about 10 years ago when I really started documenting myself on epilepsy. I saw that, unofficially, it’s considered as a preamble for a seizure.

I never had one (or didn’t notice them) until a couple of years ago. Before a seizure, I suddenly got a shiver and a jerk in my left arm. After that, I woke up on the bathroom floor with my wife holding my head. Continue reading “My auras and how I’m controlling seizures with them”

Blog · Dealing with epilepsy

Lance Fogan

A few days ago, I followed Lance Fogan on Twitter (@lance_fogan) and he followed back.

For those that don’t know the name yet, Lance is a neurology professor at UCLA and, most importantly, one of the only authors who publish a novel focusing on epilepsy. The novel is called “Dings“.

I admit, I didn’t read the book. It is a little out of my reach today ($15 on or 15 £) and I don’t use a Kindle. I have an iPad instead.

But going through the excerpts found of Lance Fogan’s website, I have to say that it captures life with epilepsy, but only from the point of view of the parents. It’s still missing that “je ne sais quoi” of an epileptic’s life, but I’m sure that either Dr. Fogan or someone else will capture it more precisely.

Until then, enjoy the read if you decide to buy the book.

P.S.: NO, this is not paid content. I’m expressing my point of view.

Dealing with epilepsy

EEGs, MRIs and other stuff like that

My epilepsy was diagnosed on the basis of a few blood tests and a 15 minutes EEG. This was back in 2000 when imagery in Romania was not really advanced and it was extremely expensive.

Over the years, I had a few more EEGs, a few more blood tests and a CT back in 2009. Finally, in 2011, I afforded to get an MRI (with contrast agent). I was employed for 3 years and had a PhD scholarship.

The MRI revealed almost nothing, except for a small scratch on the left side of my brain. I have no idea in which region precisely as the neurologist didn’t really explained it to me.

Because she didn’t explain and I didn’t understand, I emailed the MRI to various famed epileptologists around the world. Those who answered (about 5% of them) told me the same thing: the quality of the video is too bad to give a precise diagnosis (+ that I should make an appointment with them).

After I moved to Belgium, I had another MRI and another EEG (during sleep and wakefulness) which actually revealed the same thing (the scratch) and a little change in course (EEG) on the left side of the brain.

I’ll get another (full) EEG in November before my doctor’s appointment. I’m looking forward in seeing what that will shows.

But, until then, I’m sharing my first MRI on this blog. You can find the ax T1W+C FFE part of the MRI below.

Dealing with epilepsy

I liked my “seizures at home” period as an adolescent

As I had my first seizure in 1999 and was officially diagnosed with epilepsy in 2000, I can say that I was in the middle of my adolescence when those things happened.

My mother, sister and myself lived in a 2-bedroom apartment (plus a huge living room) of about 70 sqm (750 square foot). But we all bundled up in one bedroom because that was better. We watched movies every night and had a laugh.  Continue reading “I liked my “seizures at home” period as an adolescent”

Dealing with epilepsy

Morning headaches

A couple of days ago, I woke up with an incredibly painful headache. I wouldn’t categorize it as an “ice pick” headache because it lasted about 2 days.

It’s not a migraine, although, after googling around for causes, I was convinced that it was.

I wasn’t hung over either :).

What started as a splitting headache over my forehead (frontal lobes of the brain) slowly moved and grew. By the end of the day, my whole head was pounding, as if my heart was beating inside it. Continue reading “Morning headaches”