Introduction | Electric superpowers

Hi there,

I’ve been blogging a couple of months now about my life with epilepsy. Due to social media, I’ve noticed some followers are from overseas. – I’m from The Netherlands – So therefore, I’ve made the decision to write one in English! If it works out, I will write more blogs!

First, I will introduce myself. I’m Chantal, the one behind the blogs and the proud owner of these electric superpowers. I was 13 when I was diagnozed with Epilepsy. It all started with Juvenile Myoclonic Epilepsy and after about a year, I was diagnosed, I had my first Tonic-Clonic seizure.

I have had several types of medication, which wasn’t always a pleasure. I guess we all are familiar with the side effects! I’ve been struggling for several years now. Seizures and trouble with finding the right medication.

From the age 21 until 24, I was free from seizures, for the first time after all those years!

Unfortunately, the seizures started again. At that time I had a full-time job, transport and logistics, which I loved! Because of the seizures, I had to quit my job. They came to often, and I wasn’t able to fulfill my job as before. As the time passed by, my seizures came more often. I had to go to a clinic for a couple of months. They did some tests, also gave me other medication. The results from the tests weren’t that nice, but good to hear what the problem was. I had two different types of seizures, with the two I already had. Simpel Partial and Complex Partial seizures.

After my months at the clinic, I still had seizures but not as much as before. This lasted for about six months.

Since my first seizure, after being seizure free for years, I’m now 7 years later struggling with finding the right combination with medication. In 2015 my Neurologist, suggested VNS (Vagus Nerve Stimulation). Although this was surgery, I did not doubt for a second and said “YES”. There was no guarantee if this would work for me, but I needed to do for my own well being.

December 2015 I had my surgery! Now, several months later. My VNS hasn’t giving me any results. I still have seizures, well.. lucky for me, only the Simpel and Complex Partial! At least 10-15 a day. Which is exhausting. Don’t get me wrong though, not every day is that bad, I’ve got my good days, which I enjoy to the fullest!

If you are familiar with VNS, my current status is 1,8 minutes off and 30 on, intensity is 1,25mA. As I said, it isn’t working for me (yet), so my epilepsy-counselor and I are still searching for an establishment that hopefully will give the results we want!

The reason I started blogging about epilepsy, is to create awareness. That it’s not just seizures and medication. It’s more that that. Due to personal experience the last couple of years has changed my life as never before. But, I won’t let the epilepsy win, it’s my life and not its… Yes, I had to change things, not the way I intended to. But for now, how I changed it, it works for me. I’m chronically ill, but I’m definitely not a sad person! Writing about this, noticing that it also can be an inspiration for others who suffer from epilepsy, it is an mager to my life! As I said before, I had to quit my job. I still don’t have a job, it’s the reality, I’m not able to work (not yet?). So to keep myself busy, I write (also for other foundations) and I also volunteer as a receptionist at the Foodbank 5 hours a week.

Well, that’s all for now. I hope you’ve enjoyed reading this. If there are any questions, I’d love to answer them. You can send me an e-mail: levenmetepilepsie@gmail.com

Kind regards, Chantal