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Amanda - I'm hopeful for an improvement

Seize Control Seeing a doctor Events Stories Toolkit

I first had a seizure when I was 19 (1986). I was in the armed forces. It was just one single seizure, so I wasn’t diagnosed with epilepsy. This meant that I was able to return to my job.  

Ten years passed, when I had my second ever seizure (1996). I was diagnosed with epilepsy and I started taking lamotrigine. Everything was fine, and I had long period of seizure freedom, broken up by a seizure in 2001, 2004, 2007 and 2010. I seemed to have a seizure every three years or so.

Many changes ahead

By now (2011) I had left the armed forces and was working in social services. My job was hard but rewarding.  I also moved from Cardiff to Nottingham.

Around the time that I moved - I had another seizure. This seizure was the start of the lowest part of my life. In a short period of time my seizures worsened and became more and more frequent.  At first I had one tonic-clonic seizure, and a few absence seizures a month. This quickly increased to two tonic-clonic and many absence seizures a month, and then to at least one tonic-clonic seizure a week and one or two absences every day, and finally, to a daily mixture of seizures.

The next three years were the worst of my life. I tried many epilepsy medicines in increasingly high doses – but nothing controlled my seizures. I was left tired and exhausted.

My quality of life was very poor, and I grew anxious about my seizures. I began staying home more and more, until I rarely left the house.  I was a prisoner in my own home.

I can’t honestly explain exactly why, but in February 2015 I attempted suicide. Shocking but I want to be honest with you.

While I was hospitalised, my epilepsy medications were ‘tweaked’. This led me to have fewer seizures but I still wasn’t seizure free.

Would a Vagus Nerve Stimulator (VNS) help?

My supportive epilepsy team is based at the Queen’s Medical Centre in Nottingham. At a recent epilepsy appointment my epilepsy specialist and ESN (epilepsy specialist nurse) asked: ‘Would you ever consider VNS?’ I replied yes!

My ESN gave me a DVD to watch. This explained what VNS was and how it worked.  Watching the DVD, I decided that I had to try it.  Yes – I was having fewer seizures now – but I still was having a fair few. And I need my quality of life back.  VNS wouldn’t be easy, but having my medicines constantly changed wouldn’t be either. There’s all the upheaval and risk of having more seizures and drug side-effects.

At my next appointment I met the neurosurgeon. He told me more about the model of VNS I had agreed to have implanted (model 106), and answered my questions.

I left my appointment with the neurosurgeon, and expected to wait months for the VNS operation.  Wasn’t I wrong! Within two months of meeting the neurosurgeon I was on a ward and waiting to go down to surgery.

And now

I’m so pleased that the QMC team were able to treat me so quickly. I can’t fault how great the epilepsy and surgery team have been. The two incisions [that were made to fit my VNS] have almost healed. And I’ve been a little bit hoarse but haven’t had any issues with swallowing or anything.

It’s too early to tell whether VNS might further reduce the number of seizures I have.  It was only switched on two weeks ago.  But, honestly, I don’t feel it when it’s working. I couldn’t say to you ‘oh it’s sending a pulse right now’.

I will go back [to see my specialist] every two weeks. At these appointments they will check whether the pulse level is right for me. They will look at how many seizures I’ve had and whether I’ve had any problems. Depending on how I’m doing they might turn up or reduce the pulse rate, until we’ve got the right balance.

My advice…

This might not make you seizure free, but it might reduce the number of seizures that you have so it’s worth considering. For me, it’s given me hope. I’ve recently applied to do a degree in social work. I’m hoping that my seizure control is better in time for September 2015, but if not, I’m hopeful for an improvement by September 2016.

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Event Date: 
Thursday 19 June 2014 - 11:59

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