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My VNS isn’t yet a cure, but life is definitely better – Richard’s journey

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Richard was diagnosed with epilepsy as a baby. Unfortunately he has never been seizure free despite taking many different epilepsy medicines. In this feature, Richard talks openly about his treatment with a vagus nerve stimulator (VNS). He also shares his frustration at waiting so long to be told about other possible treatments.

My journey to a new treatment started with my epilepsy specialist nurse. Over the years, she went through (prescribed) every drug available for my seizure type. Sadly, none of them ever controlled my seizures. Finally, she asked my neurologist to organise a long video electroencephalogram (EEG) for me.

Not long after my EEG started - I had a seizure. Thankfully, the doctors and nurses collected all the evidence they needed during my seizure. So I went home and waited for my next appointment with my neurologist.

At this point, we finally considered other possible treatment options. Unfortunately I was told that brain surgery wasn’t an option. I was really upset at this news. I expected to have brain surgery and - in a way - I had got myself ready for it. However, I was found suitable for VNS.

My consultant and surgeon described the VNS and how it worked. But the way they spoke about it terrified me. I thought that it would be implanted in my brain – which I didn’t like the sound of.  Despite being worried I decided that I wanted the operation - anything to reduce my seizures.

When the day of my operation finally arrived I was scared but determined.  After the operation, as I came out of the anaesthetic, I had a seizure. This resulted in a bit of damage to the top of my throat. As a result, I wasn’t discharged until a few days later when I could eat and drink properly.

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My surgery wasn’t a cure – but a definite improvement. Currently, instead of having around two or three tonic-clonic seizures a week, I have two or three a month. (I might have a few partial [focal] seizures too – but I can’t be sure exactly how many). My seizures are now much shorter in length, and I also recover faster without a 24 hour headache afterwards.  At first I felt a tingling, whenever my VNS ‘worked’. Now I don’t really feel it at all.

Due to my improvement, my drug [epilepsy medicine] doses have been reduced. I think that this has improved my memory. All in all, I feel a lot better in myself. It’s really hard to put into words. I just feel more aware, less tired and generally better.

There’s just one question that I can’t shake.  Why did I go on, having seizure after seizure, for so long without trying other treatment options? I worked hard in my thirties, to gain qualifications in IT. However my epilepsy has stopped me from working or developing a career. So it’s not just the seizures - it’s the whole impact of my uncontrolled epilepsy that has lasted years.

I want to be clear – my epilepsy specialist nurses have always been wonderful. They really listened, and knew how bad my epilepsy was. But I just don’t understand why I wasn’t referred for other treatments sooner.  The fewer drugs I take, fewer ambulance trips to hospital, less time in A&E and fewer appointments with my specialist, all save the NHS money in the long run.  And a better treatment helps me to feel better and get on with my life.

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Event Date: 
Thursday 19 June 2014 - 11:59

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