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.

Epilepsy Blog Relay: 5 Things You Need to Know About Running With Epilepsy

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Jewel’s Story

Jewel is a Brooklynite who is married to her college sweetheart. She is the mother of two handsome boys who keep her very busy. Jewel is always moving but she is content knowing that she’s striving for balance and not perfection. She has decided to share her story as a millennial woman learning to navigate being a wife, mother and career driven woman living with a seizure disorder.

Excerpt

Last year, I participated in The United Airlines Half Marathon as part of The Epilepsy Foundation of Metropolitan New York’s team. Excited about participating in a cause that is very dear to my heart and being a part of something bigger than myself I signed up immediately. After the adrenaline rush subsided and I was thinking with the full function of all my brain cells, it dawned on me. I haven’t been to the gym in years and I haven’t run since the track team in high school. My mind began to race and then the most concerning thought entered my head …

Automatically, I began to talk myself out of running. I mean, this was a HALF MARATHON!! Not just 1, 2 or 5 miles but 13.5 miles of my legs and feet pressing against the concrete jungle of New York City for 2 to 3 hours. I had no clue if I could mentally and physically handle participating in the marathon. I didn’t consider how my seizures might effect my performance, energy or if I would have a seizure while running.

READ MORE


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

Epilepsy Blog Relay: Brain Surgery for Epilepsy-How did we get here

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Nancy Jane’s Story

Since the 3rd grade, my husband has dealt with seizures. Although the doctors insisted he would grow out of them, no matter what he has tried, epilepsy and seizures are still a daily part of his life. He has tried everything from extreme self-care, medical cannabis, traditional meds, and pretending they don’t exist. Nothing has worked.

Last year, another medication failed either because the med didn’t work or the side effects were too significant. So, at my husband’s quarterly neurologist appointment our neurologist said, “Maybe we should think about brain surgery. You are definitely medicine resistant, and we can’t get control of your seizures.” At that time, he was taking five meds a day (not including medical cannabis). I sat there, stunned brain surgery?!?! That was where we had landed brain surgery!? I had not expected the doctor to say that!

When brain surgery is suggested

Unfortunately, seizures have become a regular part of our lives. My husband doesn’t hold a job because of his seizures. He suffers from depression, overwhelming exhaustion, anxiety, brain fog, and aphasia. Not to mention, the brain effects we don’t even know about. So when the doctor said brain surgery was our next move after the initial shock, we both said yes how soon can it happen.

“when the doctor said brain surgery was our next move after the initial shock, we both said yes how soon can it happen.”
We have shared his brain surgery with friends, and they have all commented on how cavalier we seem about the whole thing. It is easy to be cavalier when your quality of life is near zero.

But it isn’t all doom and gloom. My husband is one of the most sensitive, caring, kind, generous people I have ever met. Because of his struggle with epilepsy, he is more empathetic and understanding than most. His ability to be patient, listen, and attune to other’s emotions is incredible, and I believe one of the gifts of his epilepsy. His creativity is off the charts; unfortunately, due to his meds, shaky hands, and a challenge with concentrating makes those creative endeavors more challenging. So the fact that we have hope that he may one day be seizure free and best-case seizure free without meds is a medical miracle.

Preparation for surgery

There are several hoops to jump through before the surgery is for sure. They only have 16 candidates a year. Over the next few months, he will undergo neuropsychological testing to map how his brain thinks. Then he will have two weeks in the Epilepsy Monitoring unit where they will drill burr holes into his head to attach electrodes so they can map where his seizures are located in his brain. All to determine whether his seizure activity is located in an area where they can perform an ablation on the brain tissue. Note of disclaimer: that is my non-medical license understanding of what is happening.

To raise awareness of this process and hopefully help others in the meantime, I will be writing more about this topic as we move forward.


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

Epilepsy Blog Relay: Will Drum for a Service Dog

This post is part of the Epilepsy Blog Relay™. Follow along all month!

This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the November 2019 Epilepsy Blog Relay.

Denise’s Story

When my son Brett was diagnosed with epilepsy, I had a terrible feeling of déjà vu. That is because my older son, Brynnon, also has epilepsy, so my family has dealt with it a lot. So much so, that I once caught my daughter tucking all her dolls in before bed and whispering, “Make sure you have your emergency medicine near you.”

 

While I was disheartened to hear that Brett would also have to live with epilepsy, I felt prepared because of my experience with Brynnon. Brett’s seizures were different from Brynnon’s so I had to learn how to address that. Unfortunately, Brett’s seizures were more severe and took more of a toll on him. Luckily, I knew what to pack for Brett to have everything he needed in case of an emergency. I memorized his list of medications backwards and forwards, so I could tell them to an EMT or a nurse if Brett was having a seizure and my brain was scrambled with worry. I had done all this before. I thought I was ready. But I wasn’t ready for drums.

 

Brett takes up the drums

About two years ago, Brett decided he wanted to learn to play an instrument, just like his older brother. He tried to pick up the guitar, but his fingers were too short to reach the strings. So, he settled on drums.

This is most mothers’ worst nightmare, but I saw it as a motivator. Due to some other health issues, Brett required physical therapy. So, my husband and I went out, bought him a drum set, and put it down in our basement. That way when he wanted to play, we could help him up and down the stairs, and it would be good for him.

Brett took to the drums quickly. He watched internet tutorials, and his brother helped him as well. He loved it, and I loved seeing him so happy, even if it made for some noisy nights.

Sometimes after a cluster of seizures, the next time Brett practiced, he would discover he’d lost some of his drumming skills. All that hard work and knowledge just washed away. This would always depress Brett, and I couldn’t blame him. I worked with Brett’s doctor so we could choose medications that worked, but did not aggravate his depression or cognition issues. Fortunately, Brett is resilient. Normally, something would reignite his passion –a cool rock performance on TV or just a song on the radio with an awesome drumbeat. He would get back to it, relearning everything he lost and then some. I was, and am, so proud of my boy.

 

Four-legged roadie

Every rock star needs a roadie, and Brett decided that he wanted the four-legged, furry kind: a service dog. It was going to be tough to come up with the money for a service dog. That’s when Brett took matters, and his drumsticks, into his own hands.

With a little help from us, Brett set up a Facebook Live event. He let people know he would be drumming for donations to get a service dog. With that, he launched into his performance. It was all his idea, and his bravery was stunning to our whole family.

This tale ends with a tail, Taylor’s tail to be exact. Thanks to help from others and Brett’s drumming, we raised the money to adopt Taylor. Taylor is a beautiful yellow Labrador that has helped Brett feel safer and more confident. Seeing him playing with the dog that he earned doing something he loves warms my heart.

Although Brynnon’s journey taught me what seizures looked like and how to communicate effectively with his doctors, I couldn’t prepare for every twist and turn in Brett’s epilepsy journey. Yet, through it all, there have been some wonderful surprises along the way.

 

© 2019 Sunovion Pharmaceuticals Inc. All rights reserved. 11/19 NPC-APT-US-00013-19

This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the November 2019 Epilepsy Blog Relay.


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

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