Dealing with epilepsy

Living with epilepsy – how bad it is

Quite a while back, I realized that living with epilepsy has multiple sides to it, and I kept thinking (and complaining here) of just one: just my point of view as a person with epilepsy.

But there is something else to think about: how it affects the people around you. I got a harsh reminder a few weeks ago when I had a seizure at home with just my 7yo kid around. I taught him the procedure: go on my phone, click on the emergency call and call the emergency numbers I set up there (my neighbor across the street and his mother).

He did that; he even called my neighbor on my desktop WhatsApp app because the laptop was open when all happened. He left voice messages to people, opened the intercom in the building and let my neighbor in.

Blog · Dealing with epilepsy · Way too personal

Back or not?

A friend suggested that I should restart writing here a few minutes ago. I have been thinking about it for a while, but I’ve been busy (another word for lazy in this context).

But here it goes … new article coming up soon.

Blog · Dealing with epilepsy · Not too personal

The “No way out” line you get at the beginning

There are two types of reactions from doctors when you’re newly diagnosed and three types of reactions from people with epilepsy.

People would epilepsy can be split into the “don’t give a f*ck, I’ll do what I want” and the “I need to close myself into a closet made of pillows to not get hurt”. Plus there are those that make Google richer: searching non-stop for info about epilepsy: causes, triggers, treatment, online chats, epilepsy fellowships to colleges (yes, these exist in some countries), etc.

Doctors can either try to comfort you or simply tell you what you have and show you the door.

I would like to speak about the second category. Continue reading “The “No way out” line you get at the beginning”

Blog · Dealing with epilepsy

Stupid questions about epilepsy from people without epilepsy

In 2020, I received quite a few messages from people with epilepsy asking about side effects of meds, what kind of seizures I have or how do I handle stress, among other.

But, at the same time, I received questions from people without epilepsy: friends, family, teachers of those with epilepsy. While 90% of the questions were right on the point, the rest was, quite frankly, extremely stupid. Here is my top 3 selection:

  1. Is epilepsy transmittable? Answer: it was an exchange of three emails -> by transmittable, the guy (USA) meant something like COVID, not genetically. He actually got angry when I said “NO” because that’s the reason why he fired someone. I hope they go to court this year because of this.
  2. If I drink alcohol and have sex with my boyfriend, will the alcohol in me cause him a seizure? I like to drink. Answer: No. Neither alcohol nor stupidity can be shared through sex.
  3. Can a brain transplant be done to cure epilepsy? Answer: honestly, this was the only message received last year to which I didn’t respond.

Send messages or emails and you’ll get an answer from my personal experience. But strangers beware, sarcasm is a possibility.

Dealing with epilepsy

Epilepsy tracking

It’s been more than 1 year since I last wrote here. It’s been an interesting period, with ups and downs.

But the reason I’m writing is not to share life’s challenges. It’s to talk about interesting options I found on tracking my seizures.

There are several possibilities: epilepsy monitors and trackers, apps and journals.

Personally, I’m using Google Docs. Here is the list of epilepsy seizures I ever had: My epilepsy journal. Continue reading “Epilepsy tracking”