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Cluster seizures and what they can do to you

Doctors define cluster seizures as having two or more seizures within 24 hours.

Well, on December 28th, I had 5 seizures in about 5-6 hours, with the last one being on a stretcher when the ambulance came to pick me up after the first ones. From my perspective, it wasn’t extraordinary. I finally realized what focal seizures are (I had 2 in bed and came back from them in seconds), but, as any idiot would do, after a while, I wanted to take a shower, so I fell in the bathroom, hitting the floor and leaving a lot of blood there.

But at least I got to spend New Year’s Eve in the hospital :)). Not that that is a good thing. In those 10 days there (December 28th to January 6th), I lost a lot of blood, but only to lab testing, and, for the first time ever, I had a seizure while doing an EEG. It was the first time seizure activity was seen -> just a focal seizure of 2-3 seconds, but still.

But things could only get better, people would say, especially if your treatment is adapted. Remember those lab tests?!? It seems my kidneys wanted to join in on the fun: renal artery stenosis – the official diagnosis of what a nephrologist found.

Yey …. but everything is getting better and will be better. A new year, a new day, all work and play.

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.

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What I am missing on: the dating life of a person with epilepsy

It’s been over a year since I posted last.

In the past year, I started a new (part-time) job, still working on the old one (so working 170% of a “normal” person’s time) and trying to get a personal life. This seems overwhelming from where I stand and invisible for those outside.

My dating/personal life: so I’ve been trying Tinder and Bumble for a while, but quit it mid-2021 because, well, they both suck. Had a few dates, met some interesting people, but didn’t connect with anyone.

My dating/work life: well, paying rent and eating is expensive, apparently, and you actually have to have money. So, as I said, 170% of the time. Financially, it is worth it and … I actually get to eat.

My personal life: gaining some “quarantine” weight seems to have been normal last year. For me, it seems that it was normal also. Unfortunately, for me, it meant about 20+ kilos of quarantine weight. I need to drop those before I feel comfortable starting dating.

What’s your secret in dealing with dating?

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”

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Legitimate questions and 2020

I don’t have a lots of followers for this blog or a huge number of view – about 150-200 views/day. And most of these go to a post about humanity that I wrote in 2013.

However, how I wrote in my previous post, I get questions from time to time. Some stupid, some not. Some from lazy people (as someone commented to my post), some from people who just stumbled upon my blog and don’t care about epilepsy.

At the beginning of each year, I take some time to go back through the questions I got. With 2020 being a hard year on all of us, some of the “good” questions were a bit weird.

Here you go my top three favorites:

  1. What is epilepsy and why should I care about it? My (honest) response: you shouldn’t care if you don’t know anyone who has epilepsy: friend, family, colleague. Epilepsy is a disorder, not a disease so the only thing you could do is be there and be a friend that person.
  2. Why are people afraid of people with epilepsy? My (abridged) response: I’m not sure what you mean. I only met people afraid of someone having a (grand mal) seizure while they are with them. But that’s it. Unfortunately, I see that people actually consider those with epilepsy as inferior because we can’t do some things aka drive (for some of us), drink (I wouldn’t drink if I didn’t have epilepsy) etc.
  3. Is epilepsy dangerous? My response: yes, it is for some of us. For epileptics, imagine having a seizure in the middle of the street. It doesn’t matter if it’s grand mal or absence seizure. You could get hit by a car. For non-epileptics, it’s mostly the scare: imagine you are in a car with someone having a seizure (grand mal). If s/he sits next to you, you might lose focus/attention and get into an accident. But 95% of the time there is no problem.