Hating My Seizures, Loving My Family... and Finally Getting a VNS

Nothing – and I repeat nothing – has provoked more hatred from me than a particular restriction that was imposed upon me because of epilepsy. Likewise, nothing has aroused the love in me that epilepsy has. You've likely heard that love and hate are the same emotion, and both were reasons I got a vagus nerve stimulator.

There's a scientific basis for that love/hate statement. Both emotions use the same neural circuitry to commit bold and possibly irrational behavior. The keyword that's never mentioned is passion. Because we passionately think of true love to the same degree as true hatred. I recently learned that in a psychological journal.

What's VNS?

A couple of years before my daughter Alana was born, my epileptologist suggested that I get a vagus nerve stimulator (VNS) in another attempt to control my life-long seizures. A VNS is a small device that emits a rhythmical electrical stimulation for the brain, similar to the way a cardiac pacemaker limits heart attacks. Since someone would cut into me, I was a buffoon and shot it down without the slightest consideration!

I failed to do ANY homework. Holes wouldn't be drilled into my head or brain matter be removed. It's a 3-hour outpatient surgery, nothing like I had imagined in my resistance. The VNS device is implanted into the left breast, and its electrical stimulus is carried by wires to the vagus nerve in the neck, and from there into the brain.

But it would take a few years and a big scare before I would even consider VNS as an option.

A scary seizure that changed everything

One afternoon, my wife was shopping with her parents from China. They lived with us, so I savored taking my precious Alana for a daily stroll by myself. She was too small to sit in the stroller, so I snuggly tightened her into the car attachment that fit onto the stroller.

It was heavenly to see her grinning up at me. Our quiet subdivision had no sidewalks, but the few slow cars made it safe to walk in the streets. I didn't do any of that "goo-goo, ga-ga" nonsense. Our "conversations" were about what kind of a boy I hoped she'd marry, exciting career opportunities 30 years from now, and places our family would visit together.

The next thing I know, I'm standing in a residential driveway with EMTs and firemen poking their noses into my face. They'd been dispatched after a 9-1-1 call from the family in the distance, who I was slowly beginning to recognize. Responders were quizzing me with things like, "Who is the president? What year is it?" Even after I'd satisfied them with my name and told them I was okay and they could leave, I still wasn't aware of Alana’s presence or condition. I'd had a seizure.

The risks were too high

They eventually got me to agree to join them in the ambulance and at least get Alana examined. That's when my stomach got empty about what kind of trouble I'd gotten my baby into. Later, witnesses told me that suddenly I started running and the stroller bounced in front of me – eventually turning over. Thank God, she was strapped in tightly, and because her carrier's handle was raised, it provided her with the same protection as a roll bar on a race car!

My wife Yan and her parents met us at the hospital ER. Doctors approved both of our releases, but the silence in the car home was heavier than a mountain. Upon arriving home, Yan took Alana and turned from me. Her glare over her shoulder at me made me breathless: "If Alana had gotten hurt, I would divorce you." I understood.

Consequentially, she banned me from taking Alana outside by myself unless she or my in-laws could see us from either the front window of our house or the kitchen window on the side, limiting me to an area of about 150 feet.

I hated my seizures... and had to do more

My wife has always been the primary breadwinner. I'd been caring for the house – and whatever I could with Alana, who still needed daily walks. Few people want to take daily walks with their mother- or father-in-law, especially when neither speaks English and you aren't allowed to push the baby's stroller. I tried it for 2 weeks, but surrendered to letting them be the ones to walk her. I watched their departure from the front steps until I was too enraged to remain!

My prohibition remained after Alana started walking. My eyes threw daggers at their backs when each took one of Alana's hands and walked her around the block and out of sight, which I was forbidden to do. Her father should be taking her on 30-60 minutes walks a couple of times every day, not her grandparents! It was unreasonable of me, but I truly hated them.

I understood my wife but didn't have a satisfactory counter-proposal to suggest. That's when I determined that I had to do more about my epilepsy if I was to enjoy Alana more.

Getting a VNS for seizure control

I started researching VNS. They're not much bigger than a stacked pair of half-dollars. They should never be expected to be a "cure" for seizures, although some people become seizure-free. The majority of recipients had a reduction in the frequency and/or severity of their seizures. And for some recipients, VNS is totally ineffective.¹

My VNS was implanted when Alana was 3 years old. The first time I had an aura after having it implanted, I used a magnet conveniently clipped to my belt to "fire" the VNS, which possibly stopped it from becoming a seizure. Even though we were all riding closely in our SUV, no one was aware what had happened to me until later when I told my wife Yan.

A few months later, Yan and I were reading a book to Alana when I had a very brief seizure and neither of them realized it. Every seizure before the VNS was noticeable.

For the love of my daughter

I hated her grandparents' time with her as bitterly as ever. It wouldn't be until Alana was 5, when her mom had confidence that Alana could stay out of trouble if something happened to me, that I was finally allowed to walk her out of sight. Although she didn't seem as talkative or joyful with me as I'd seen her be with her grandparents, who moved out around that time, it meant so much to – at last – be alone with this young person who I love more passionately than anyone.

If your epileptologist makes a treatment suggestion for you to consider a VNS, don't make the foolish assumptions I did, and seriously consider it.