Two years ago today I walked through the doors of the National Hospital of Neurology and Neurosurgery feeling scared, frustrated and desperate. I was in a dire situation and was running out of options. That day I had my Vagal Nerve Stimulator (VNS) implant surgery and 24 months on I still can’t quite fathom the colossal difference this tiny device has made to my life. So here’s some reflection on my life post-VNS and everything that came before that.
Life Before VNS
Back to Basics
I was diagnosed with focal epilepsy when I was three years old. Focal refers to the fact that the irregular activity that causes seizures only occurs in part of the brain. However, that does not make it any less severe or dangerous. In my case, it’s the left temporal and frontal lobes that are affected.
Over the years I’ve experienced a variety of seizures. My most common seizures take place nocturnally or when I’m asleep. They mainly consist of me uncontrollably screaming and convulsing whilst also biting my mouth. I still haven’t worked out how it is anatomically possible to wail at the top of one’s lungs whilst simultaneously almost biting off your tongue but somehow, it is.
I also experience absence seizures. These are less common and also harder to notice. I essentially blackout for about 15 minutes but continue on doing whatever I was before. When I come round I tend to be agitated and confused, however, it’s often only with hindsight that I’m aware it’s even happened.
On top of all this, I also have what are known as auditory features. The best way to describe these is when you stretch in the morning and hear a ringing in your ear. Only I feel the sound. Back when I was doing my GCSEs I could have over 200 of these a day, which was very irritating and disruptive.
Being diagnosed so young I’ve never known a life without seizures. Epilepsy has followed me everywhere throughout every stage of my life. It’s part of who I am and always will be no matter what.
The Decline of 2019
To put it politely, 2019 was a rubbish year for me. It started with a cluster of 30 seizures in 30 hours and things didn’t improve from there. When I say I spent that year fighting for my life, even my own family think I’m overexaggerating. Until I remind them of everything they’ve dissociated. All the seizures, injuries, medication side-effects and suicidal thoughts. All that fear and worry I lived with during that year. And I’d run out of options.
VNS felt like a last resort when my consultant first suggested it. I couldn’t quite accept that we’d reached that point. There had to be something else I could do, another drug I could try. But there wasn’t because I’ve tried them all. I went through two med swaps in the first six months of 2019. The first medication gave me such bad toxicity that I lost all my balance. I could barely walk and even struggled to get dressed in the morning.
My consultant is normally very positive, she sees potential in me and likes to encourage me to keep moving forward. But when we agreed on the second med swap and I asked, ‘what if this new drug doesn’t work?’ the look she gave me said it all. Despite being the top in her field, even she had run out of ideas. That’s when I knew, I had no choice but to go through with the surgery and hope that it worked.
Life After VNS
When I walked through those doors two years ago, I knew there was a 2/3 chance that VNS would improve my seizure control to some extent. And as I said in the introduction, it still blows my mind just how significant that improvement has been. When discussing VNS I always emphasise how small the device is as that helps highlight how just big the change has been; it’s like David and Goliath all over again.
I won’t go into full detail about the improvements, just in case the DWP happen to read this. But it’s fair to say that those few traumatic hours in hospital were all worth it. It’s been life-changing and every time I look in the mirror and squint to see my scars, I feel an intense sense of gratitude.
With everything that’s happened in the past two years I know that if I hadn’t had my surgery when I did, I’d still be waiting now. The pandemic has been scary enough, however, without my VNS I know it would have been much harder. I’d most likely have been in and out of the hospital and there’s a chance I may not be here today.
In two years I’ve gone from being in a constant state of fear, unsafe in my own body, to someone who is ready and able to start moving forward. The idea of being seizure-free has always scared me. For a long time, I thought that was due to the fact that epilepsy is such a large part of who I am. All my life this condition has defined me so much, so without it, I don’t know who I’d be. However, with VNS and the steps I’ve been able to make, I’ve realised it’s nothing to do with that at all. Instead, it’s linked to something my grandfather said a few months ago, ‘it’s easier to never have something than it is to lose it’.
VNS means there is a chance that full seizure control is a possibility (we’re not there yet). I could learn to drive, be seen as employable and datable but this device isn’t a cure. I could build a whole new life for myself and lose it in a split second. That’s what I fear, learning what a seizure-free life is like but not being able to live it.
Everything that VNS does
The thing about a VNS device is that it does so much more than just help control seizures. I wasn’t aware of any of the additional benefits before my surgery but I’ve definitely felt them.
If you google Polyvagal Theory you’ll find a lot of confusing articles about psychology and anatomy. But once you get past all that it’s fascinating. I came across this when I was researching trauma and all of a sudden so much made sense. Essentially, the vagal nerve plays a large part when it comes to coping with emotions and also empathising with them. And because of this research has shown that VNS not only helps with seizure control but also depression and even autism.
A while ago I wrote about how something just clicked in my head. How out of nowhere I emerged from the rut I’d been in for over 15 years. When I relayed this information to my consultant, she confidently responded, ‘yes, that’s the VNS’. I’m by no means ‘fixed’, my anxiety is still prominent every day and I know I have a lot of past trauma that needs to be dealt with. But I am happy thanks to this tiny device. To be honest I think a lot of what I feel comes from the simple fact that I’m still here. After all the struggles, every morning that I wake up feels like a blessing and two years ago I was praying that I wouldn’t.
On top of feeling mentally ‘stable’, VNS has also helped with my autistic behaviours. I keep noticing small things, like not going mad when the cleaner rearranges the items on my sink or exploding when my dad puts my glass in the dishwasher before I’m finished with it. But the biggest change is my meltdowns. I still get overwhelmed and sometimes lose control but I’m able to pull myself out of it. With distraction and space, I’m able to calm myself down. No more self-harm, no more sitting in the hallway waiting for help, no more screaming and fighting. I’m the one in control now.
These past two years have been an absolute rollercoaster. Going from severe depression and uncontrollable seizures to stability and then back around again about four or five times. No journey is ever smooth but there isn’t a single minute of mine that I would change. VNS has given me something I never had before. It’s given me hope, a future I can see, a light at the end of the tunnel. I have no idea where I’m going next but what I do know is this little buzzer will be with me every step of the way, keeping me sane and safe. And that is something I’ll forever be grateful for.
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