Yesterday marked 10 weeks since my Vagus Nerve Stimulation (VNS) Device was first switched on. Although the implantation surgery and the few weeks that followed it were very difficult (read more here) the difference I’ve noticed in just 70 days makes it all worth it.
When my consultant first suggested VNS I was highly sceptical, all my life surgery had been an unviable treatment for my epilepsy, I felt as though it was a last resort and I had to come to terms with the fact that I was ill enough that we turning to our last option. However, after my initial appointment with the surgical team, I began to see VNS as a potential light at the end of the long dark tunnel called 2019. I knew VNS would never cure me, I came to terms with the fact that I will forever be a person with epilepsy a long long time ago, but there were two things I hoped it could improve.
The first was the extent of my clusters. All my life my seizures have been mainly nocturnal but the clusters have become so large (reaching 30 in as many hours) that they continue throughout the day too. This is completely debilitating, each seizure is physically like running a marathon so the more I have the longer it takes to recover. It also means I have to take more additional medication, draining me of the final ounce of energy I have left. Since my device was switched on the largest cluster I’ve had is five (this past week). Although that is still a lot it seems to be a bit of an anomaly when it comes to seizures post-surgery. Last month I excitedly messaged my best mate about the fact that I’d only had one seizure. He couldn’t understand why I’d be celebrating a seizure at all but that was just it, I’d had a seizure. I don’t remember the last time I only had one, so even after a tough week I’m clinging on to that. The concept of just one seizure still blows my mind but it is possible!
The second thing I hoped for was more control. I hoped that if, whilst out and about, I experienced an aura, I could trigger the device and consequently reduce the severity of or even prevent the actual seizure. Since being switched on, all of my day time seizures have so far taken place at home whilst my magnet was in another room. I’ve not been able to prevent any seizures but I’ve not become unconscious or experienced what I’d refer to as a ‘full-blown seizure’ either. Although I don’t yet have enough evidence to prove that on-the-go control is a possibility, VNS has given me hope and consequently confidence. I now feel safe travelling/commuting alone, I no longer have to be escorted every time I leave the house. This is the key difference that VNS has made, it’s given me back my hope for independence.
One improvement I wasn’t necessarily expecting is the fact that my recovery time has reduced drastically too. Last week after having a seizure, I’d got up, gone to the loo and was pilling my cat within five minutes of coming round. This combined with the overall increase in control rapidly increases my employability. I’m no longer requesting two weeks off every two weeks but rather one or two days every three weeks or so.
However, it is important to say that these improvements are not solely down to VNS, it’s equally due to finally find an Anti-Epileptic Drug (AED) that actually does it’s job. It’s this combination that highlights just how amazing modern medicine truly is. I know I will always have epilepsy, which means I will always experience seizures. But for the first time in a long while I can finally begin to look forward to a brighter, more exciting future.