Prior to having epilepsy, I led a full and active life. But after my son was born, I started experiencing headaches which progressively became worse. My GP initially thought that it was due to stress, when in reality I had a tumour the size of an orange growing in my brain. My surgeon had to act quickly, and I was operated on in May 2015.
The surgery resulted in me being in an induced coma for three days. It was the weirdest thing to wake up from the operation thinking everything was fine and that it was the same day. I then realised I was unable to speak, read, write and I was partially blind in my right eye. I had to relearn how to do it all and other things did eventually come back to me, although my full vision never did return. This is also where my epilepsy journey began.
The removal of the brain tumour caused my epilepsy due to the scar tissue formed during the surgery. I was initially prescribed an anti-seizure medication called Keppra. I had some side effects from the medication and my dosage had to be increased eventually as I was still experiencing drop seizures, absence seizures and tonic-clonic seizures. Just when we thought we had found a medication and dosage that worked, I’d have more seizures and we would have to increase my dosage again. The worst thing was that I never knew when the seizures were coming, which made them very dangerous as I often injured myself. I broke my feet twice, had ligament damage, and sprained my wrist. I’ve had drop seizures more times than I can count.
I once had a massive cluster of seizures which left me hospitalised, even though I was already on 15 or so tablets a day (I’m currently on 17, although my doctor hopes to decrease them soon). At one point in the hospital, I had 200 seizures, putting a huge strain on my body. The doctors increased my medication again which, thankfully, reduced the seizures.
Surprisingly, whilst I was pregnant with my daughter, my seizures stopped. The medication seemed to work and I felt like my epilepsy was finally under control. It was a welcome break, although I was constantly worried that the seizures would return. And a few days after my daughter was born, they did. I had a tonic-clonic seizure and as a result my medication was again increased. It felt like I was back to square one.
It was in 2022 when my neurologist first told me about Vagus Nerve Stimulation (VNS). She sent me home with some information and I did some research of my own. VNS is a form of epilepsy treatment which involves a pacemaker-like device called a generator (or stimulator) being connected to the left vagus nerve in the neck. The stimulator sends regular, mild pulses of electrical energy to the brain, to help calm down the irregular brain activity that leads to seizures. A hand-held magnet can be used to send an extra pulse of electrical energy, when you feel a seizure starting or when you are having a seizure. The magnet is about two inches long and you use it by sweeping it over the stimulator.
To find out if I was suitable for the surgery, I had to do lots of tests. Thankfully, I was, and a date was set for the operation in September 2022. The surgery went really well, and I was told that the stimulator would be switched on in a month’s time.
The VNS was switched on with something that looked like a big wand that was connected to an iPad. When the wand – which was a magnetic device – came into contact with my VNS, it would activate it
and make me cough – which was apparently a sign that it was working! Switching it on was really exciting because I knew it would be the start of a new beginning. I was also nervous because I didn’t know how it was going to feel! One thing that happened was every five minutes or so my voice changed as the VNS is learning my habits, but I’ve gotten used to this and so has everyone around me. I now go to the clinic every three months and between that they turn it up remotely every two weeks. So far, even though I am still having seizures while being on the VNS, they are nowhere near as bad as before.
I hope in the future that there is an alternative where the VNS can be fully monitored and adjusted from the comfort of your home. Although there are people that don’t mind coming to the clinic, there are some people that can’t reach hospitals and it’s sometimes so far to go for such a small amount of time. I also think that there should be a lot more awareness to let people know that people with epilepsy haven’t been forgotten. The hard work of researchers, doctors, healthcare professionals and the people who make these devices has changed my life for the better and undoubtedly the lives of others. I am so grateful for the positive impact research has had for not just me, but my family too. Thank you, epilepsy research!