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Epilepsy Blog Relay: Leonieke lives with a thick fog until she gets VNS in Belgium

This post is part of the Epilepsy Blog Relay™.

Leonieke’s Story

When I was 9 my dream of joining the navy was crushed. I was told that I’d probably never be able to drive. I was also told if I wanted to have kids I’d need to consult my neuro at least 1 year before. I was not allowed to take a bath, swim alone, bike alone… Basically be alone.

According to the doctor 24 years ago, even he didn’t say it, I ended up in a prison. Luckily my mum and stepdad never took all the advice. They were cautious, but let me go to school by myself, on my bike, without a helmet. I’m a Dutch girl after all.

VNS in Belgium

They started me on meds that didn’t work and had too much side effects. They started other meds, other combinations, other doses. Basically they’ve been trying for the last 24 years and here we are, still not seizure free. In 2015 we started the VNS proces. We started all the examinations and in the beginning of 2016 I heard that I was a candidate for the VNS. I didn’t do the surgery though. I wasn’t ready yet. Taking the VNS meant, for me, that there was no pharmaceutical solution left. And I wasn’t ready to give in to that idea yet. Especially since you have no clue about the results. They can be from non-existent to seizure free.
My epilepsy has always been fluctuating. Good periods were alternated by lesser periods to serious bad ones. I have had some status seizures and am very grateful that I survived them. However we never know the reason of the fluctuation. The end of 2018 a lesser period occurred. And although the seizures weren’t that bad, the situations were. I scratched my hand on a nail, I fell on a crossroad, during rush hour, right after a bus passed by… That’s when I decided it was time. That’s when I decided I didn’t want to continue like this. I was ready for the VNS.

The VNS Experience

Fast forward to May 17th 2019. The VNS was implanted. Surgery went well, scar in my neck is healing very nicely. The scar on my breast is not, I’m well rounded, and as I was warned by fellow VNS patients, the scar shows a little tearing due to gravity.

June 4th, they turned on my VNS. It has been a life changing experience. But really, I’m not kidding. From the first moment I feel more energetic and vivid. And a very nice result for me… I hardly ever have the hiccups anymore. I used to have them very often and they were always loud and very uncomfortable. How about my seizures? I don’t know. I have absence seizures with irregular tonic clonic seizures. My absences are very short so we have to wait till June next year.

Life today

Are all the results of the VNS good? No. Off course I have the known vocal chords problems. But there is something they never warned me for. For 24 years I lived in a bubble of brain fog and seizures. For 24 years I experienced not everything in this world. And now? This world is so full of noise, smell, lights… Wow. And it’s clear I don’t know how to handle it…. yet(?). On top of that, I don’t know how to handle the powerlessness of not knowing how to handle it. So far… it just makes me angry. However when I enter a 4D attraction in Disneyland Paris I did dozens of times before and I smell things I never smelled before and I feel fine when I come out after using the magnet. I forget all the anger and I am so totally happy with my decision.


NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.

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