Epilepsy & VNS Awareness

/ Shannon DeRose

I have epilepsy! I have seizzures daily, I’ve had them for most of my life.

I’m autistic so the doctors had told my parents that’s why I would stare off blankly a lot. Sadly that mistake the doctors made. It cost me a lot when I seized for 7 and 1/2 hours. And doctors didn’t know what to do.

I’ve been in five comas due to Going into status epilepticus for hours on in! I had strokes during these times, other times too.

My Neuro dr is one of the best doctors ever and I’m honored to have him as my doctor.

The first time I saw him I had a “stare off” seizure and from that moment on he never questioned anything. We did a 48 hour EEG which showed something far worse than We thought.

I was having a stare off seizures every two to three minutes at all times. My brain never stopped or went down to most people’s brain waves. It was utterly bad.

After medicine seemed to only help some the dr told me that he wanted me to have a VNS (Vagus nerve stimulation )

So I had surgery to place the VNS and I have had less seizures because of it! It’s been wonderful!

The VNS Pulse is what I have meaning it goes to my heart and brain. When my heart rate goes up it sorta like shocks my heart into a better rhymeth and/or lower heart rate. Same with my brain if my brain waves seem weird the VNS shocks it back into normal or more normal brain waves for me.

It’s amazing!! I have a magnet that if or when I have a seizure thatthe VNS doesn’t stop which happens and is normal some seizures are harder to stop then others. My magnet I carrying with me I can swipe it across my chest where the VNS battery is. It’s confusing I’m sure to people who don’t know what I’m trying hard to explain. Truly I don’t even get some parts of it either.. so I might not be as confusing as you but I am confused… (laughs)

The VNS has helped me sleep, and not sleep walk! I have been able to start reading and remembering reading!

Now this isn’t a fix all I still have seizures daily, I have between 10-20ish stare off seizures but you need to realizes that before this I was having seizures “stare off” ones every two to three minutes daily. So this is a big jump And I’ve been joyful too have this.

I will never have the VNS lead removed since it’s wrapped around a nerve that goes to my brain.

The tonic-clonic seizures I have aren’t gone they are fewer then ever but they shorter and not as bad.

I’m on a few seizures Meds and I have to be careful doing some things others wouldn’t.

Epilepsy is scary.. VNS helps meds help and amazingly enough a dr helps.

Shayweasel with magnet out..

5 thoughts on “Epilepsy & VNS Awareness”

      • Thank you. I was diagnosed with epilepsy when I was 7 (32 years ago) when I was having “stating spells” in class. They progressed to grand mal seizures a few years later. In my twenties I stopped having them and thought they were gone forever. I had a huge one 8 years ago and they have now progressively gotten worse. I have JME and medications just aren’t helping. I am so hopeful that this VNS will help.

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      • JME is hard to deal with I’m sure. It’s amazing how seizures can go away and then come right back worse. I’m so sorry for your progressive seizures. It’s difficult trying to handle. What happened 8 years ago to restart them? Or do you or them notknow? I pray this VNS helps so much. Is it a plus VNS as well?

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      • JME is tough since we can’t just target the part of my brain that is causing seizures. They fire from every nook and cranny and I have every kind. I think it was probably stress that triggered them again and then in the past three years when they have gotten so much worse it has most definitely stress and lack of sleep. I have tried to eliminate as much of that as possible. I’m not sure what a plus VNS is??

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