Geoff shares his story of life before and ten years after vagus nerve stimulation (VNS).
My first seizure came out of the blue, at the age of 16. I was in the house, when my cousin noticed that my lips had turned blue and that I was completely still. Recognising that I was having a prolonged absence seizure, he phoned for an ambulance.
Five days later, I returned to the hospital for a series of tests. The doctor asked me about my medical and family history. I was now 16, but as a 10 year old, I fell from a moving bus. I hit my head on a kerb and was rushed to intensive care. We also spoke about two of my relatives who have epilepsy.
My scariest ever seizure
My experience gets better eventually, but I really want to share the story of this seizure....
I was 23, fit and had just played in a five-a-side football match. After the match, I went into the changing rooms. Apparently, I was acting odd and yelling all sorts of random things, when I suddenly collapsed onto the tiled floor and had a seizure.
My jaw took the full brunt of the fall, which knocked my teeth out of alignment. I came to, terrified and covered in blood. I was rushed to hospital as a medical emergency, and admitted to a ward where I spend five days drinking through a straw. I should have been sitting my final university exams with my course mates.
That seizure marked the start of a struggle to control my seizures. I was terrified of having another accident during a seizure. My doctors started me on many different epilepsy medicines and different combinations of medicines. But the seizures just continued for years. Many days, I had around nine seizures. It was a time of unemployment, never-ending seizures and low self-esteem.
Is brain surgery a suitable option?
I was referred to a hospital in London (2004). Here, I had a number of tests to look at whether brain surgery might reduce or stop my seizures.
Unfortunately, the results showed that brain surgery wasn’t a suitable option. The piece of my brain causing my epilepsy was in the area responsible for my communication skills. Any attempts to remove this piece of my brain carried a very high risk to my speech and language skills.
Not the end but a different journey
We chatted about vagus nerve stimulation (VNS), which I was told was a possible option. To be honest, I was scared about VNS. I was worried about having an operation and about scarring. But I wanted seizure freedom.
In 2004 I had the operation to fit my VNS. I remember a few seconds, just before the op, when I was being put to sleep. I remember them injecting me.
The next thing I remember was when they removed my blanket, two hours after the operation finished. So it was done. I was the proud owner of a VNS.
I stayed in hospital for five days – mainly due to exhaustion – but I improved pretty quickly. My voice was really hoarse, but the hoarseness quickly faded, (although even now my voice goes a little funny if I swipe the magnet across my VNS). I was worried about scarring, but the scar is minimal. The only real thing I’m aware of is that I’ll need another operation to fit a new battery in 2016. So in the meantime I’ve stepped up the effort to make sure I’m fit and healthy.
So what were the benefits?
I’m still not seizure free, but quickly after having my VNS implanted, I saw a massive improvement in the number and length of my seizures. I no longer have cluster (groups of) seizures or prolonged seizures (I used to have nine seizures in a few hours – leaving me exhausted). I haven’t had a tonic-clonic seizure since, and I recover much more quickly after a seizure.
Now I tend to have one, quick absence seizure a day. It lasts around 15 – 30 seconds. A huge improvement! My family and friends no longer panic when they see me have a seizure, and ambulances are no longer called.
My VNS has allowed me to do many things during the last ten years. I have taken part in a ‘Sleep out’ for a homeless charity and joined a local theatre company. I also spent five years teaching English in Slovakia and the Czech Republic - something which I really loved doing. My epilepsy wasn’t a barrier at all, and my teaching colleagues were very supportive.
I’m more positive since having my VNS implanted
I’m much more positive about my epilepsy. I can talk to people and potential employers to show that my seizures aren’t an issue. I hope that my confidence and low seizure frequency will lead to full employment in the health and social care sector.
There were so many times that I was depressed and anxious. I hope that I’ve shown that – honestly - there is light at the end of the tunnel. I’m still searching for seizure freedom. My consultant and I are now considering the use of the epilepsy medicine, Vimpat alongside my VNS and other medicines.
My advice for other people looking to seize control
Don’t be afraid to try new treatments – the odds are so much in your favour. Just go with it. If your tablets aren’t working, then it’s time to speak to your consultant. Don’t be put off by how busy they are, or because you think that you take up too much of their time. Go and talk to them. Tell them about your seizures and their impact, and ask them to help you find out what can be done to help you.
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Supported by Cyberonics through an educational grant. Cyberonics developed and markets Vagus Nerve Stimulation (VNS) therapy system. Cyberonics has no editorial control on the content.