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Amanda - I'm hopeful for an improvement

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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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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.

Event Date: 
Thursday 19 June 2014 - 11:59

Comments: read the 4 comments or add yours

Comments

This is my Mum's story. Writing this has been a big turning point for her. The whole surgery was a massive decision to make and it didn't come without its doubts. It's been a long journey to this point so I couldn't be prouder of my Mum wanting to share this story with everyone. Epilepsy doesn't get talked about much out in the open as though it's a condition that should always be kept on the quiet but it's time to change that and get people talking about it more. The VNS isn't something that will suit everyone's specific type of epilepsy but it's certainly one worth considering!

Submitted by Hannah Page on

Amanda what a heart felt letter. You will and always will be my strong besutiful best friend. Through it all you have been dignified and im pleaded to say because of the VNS my old mate is back on the road to recovery. So onwards and upwards and a big thank you to the Queens Medical centre for giving my mate a chance x x

Submitted by Teresa Harvey on

I am very friendly with Mandy’s mum and I know how stressed and worried she was for her daughter. This debilitating condition was very difficult to live with and had totally destroyed Mandy’s life. It is wonderful news that there is light at the end of the tunnel for Mandy and that normality had been restored to allow her to live the life she deserves. It took real strength and courage to discuss her life story on this website but I am sure that it will give hope and help to other sufferers.

Submitted by Shirley Davies on

This is very encouraging to me. I've had epilepsy since age 3 but over the past couple of years it has gotten significantly worse and I have been told that no medication will ever fully control my seizures, my medication would just have to be re-balanced every 12 months or so. I've finally been referred for VNS and I'm hopeful that I will have the surgery before the year is out (I'm seeing my Nero surgeon next week!). I really relate to your story and I'm hopeful that I will be as lucky as yourself and see an improvement in my seizures :-)
Best wishes for the future x

Submitted by Jade on