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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.

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”

Blog · Dealing with epilepsy

How is education influenced by epilepsy?

I’m part of a few epilepsy awareness and support groups on Facebook and there are a few topics which keep popping up in discussions, one being education. People are asking if they were discriminated during school, if they were prohibited for entering school (mostly college and higher), if and if and if… Continue reading “How is education influenced by epilepsy?”