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Murray’s epilepsy treatment journey

Murray’s epilepsy treatment journey

Murray Goulder had been suffering from epileptic seizures from the age of 16 and had exhausted all available treatments when he booked his initial consultation with a Consultant Neurologist at our hospital.

Murray's patient journey

Murray shares his personal experiences, from the initial strange sightings to the moment he realised he needed help. Learn about the common drugs for epilepsy he was offered, such as Epilim and Lamotrigine, and why they didn’t work for him. Discover why he chose to book an initial consultation with a private Neurologist at our hospital and how easy it was to do so.

Can you tell us about your epilepsy history?

“My seizures started when I was 16 and when they first started happening, I was having strange sightings. I didn’t know how to tell people because I thought I was seeing ghosts. In the middle of the night, I’d see someone standing at the end of my bed or I’d be walking around during the day and see people in front of me who weren’t there.

“One time I was driving and I lost control of the car. Luckily there was someone in the car with me and in a split second we were 20 seconds down the road and I didn’t even know how we’d got there. After that event, I was told that I’d put my foot down whilst I was having a seizure. At that moment, I realised I needed to get help so I visited my GP. After having various tests and scans, I was diagnosed with epilepsy.”

What other medications were you offered for your epilepsy before coming to Benenden Hospital?

“After my diagnosis, I’d been offered the common drugs for epilepsy such as Epilim. These medicines control brain chemicals which send signals to your nerves so that seizures are reduced. However, Epilim didn’t make much difference, it just led to weight gain. I was also prescribed another drug called Lamotrigine which didn’t help my epilepsy either.

“I’d been to a longstanding Neurologist in the NHS and been offered resection surgery for quite a while. Each time I’d visit, they’d ask if I’d like the surgery, but I found the prospect of surgery too scary to consider. The chances of reducing the epilepsy with the surgery were low and it could leave me with physical disabilities.

“I was having approximately six to ten seizures a month and I needed to find out how to reduce these seizures as other avenues had been exhausted.”

What made you book your initial consultation with a private Neurologist and how easy was it to do this?

“I returned to my GP and explained my situation and that I’d like to go private. When I said I wanted to use my Benenden Health membership, my GP referred me to Benenden Hospital for a neurology appointment. It was very easy and quick to have an appointment booked with a private Neurologist.

Can you tell us a bit about your Benenden Health membership and how you’ve used their services in the past?

“I became a Benenden Health member in 2012 and then Parcelforce signed me up as part of their staff benefits in 2018 when I joined them from Royal Mail. So far, it’s been invaluable and I’ve used it to access the private neurology service at Benenden Hospital twice – the first time for my epilepsy and the second for my migraine diagnosis. I’ve used the physiotherapy service twice and I also used the counselling service when my mother sadly passed away.”

What happened during your initial consultation?

“My initial consultation in 2016 was with Dr Sam Chong who no longer works at the hospital, but the Neurologists at Benenden Hospital are all highly experienced. Before my appointment, I researched him to understand his history.

“During my appointment, he put my mind at ease and was very approachable. He referred me for an MRI scan on the same day so I stayed at the hospital for a few hours as we waited for the results to come in. Dr Chong prescribed me a relatively new medication at the time called Vimpat. Before I left the hospital that day, I was also given a copy of my MRI on a CD.

“This medication dramatically reduced my symptoms and I still take this medication today!”

Can you tell us about your SubQ implant?

“In 2021 I was asked to join a trial of the SubQ implant which sought to collect data from my seizures and use algorithms to predict them and adapt my medication when required. UNEEG medical asked me to wear it for 15 months of monitoring, day and night. The solution consists of a subcutaneous implant, and a recorder, with secure data transfer and EEG analytics. It would also let me know if my own seizure recording was correct. I was given my second implant on 16 March 2023.”

“SubQ is a 24/7 EEG device that I wear every day. I’ve got a 10cm wire that runs down the inside of my head that sits just under the skin but outside my skull. This attaches to a black disc and the wire runs down to a device that sits just behind my clothes. It monitors my seizures and my brain waves – I thought I was having six seizures a month and it turns out I was having about 25 seizures a month!

“Hopefully this trial will help not only myself but other epilepsy sufferers as it can adapt medications in real time and it makes such a big difference to my quality of life. It’s a great piece of equipment.”

How was your experience at Benenden Hospital?

“It’s a lovely hospital and they chose a great place to build it! If you’re waiting for an appointment or staying overnight after surgery, you’ve got beautiful countryside to look out on. It’s a peaceful and calming environment.

“The staff at Benenden Hospital were very helpful. When I arrived, I checked in very easily and then was directed to the Out-patient Department. I was asked if I was feeling okay which was reassuring. The facilities were outstanding and everything went smoothly.”

What would your advice be to anyone struggling with epilepsy or neurological issues?

“For anyone living with epilepsy or anyone who’s been struggling with neurological problems – don’t wait, speak to your GP and get referred to a Neurologist. Don’t let your epilepsy define you! Speak to your friends, speak to an epilepsy charity, and speak to someone else who may have your condition to learn about their experience. Make sure you get the treatment you need as it looks different for everyone. Benenden Hospital is the perfect place to get help.

“For me, at the age of 43, I know I’ll never be cured. But I will be able to get help with my SubQ implant and with the help I received through Benenden Health and Benenden Hospital, I know that I can access specialist advice and have my medications adapted so I can have a good quality of life.”

Would you recommend Benenden Hospital?

“I would definitely recommend Benenden Hospital because it has a lot of different services to offer. It can offer you a diagnosis and treatment, it’s quick, efficient and it’s helped myself, my family, friends and my colleagues.”

Access our Private Neurology Services

Our neurology specialists support the diagnosis and management of disorders that affect the central nervous system (the brain and spinal cord) and the peripheral nervous system (nerves and muscles which trigger movement and transmit sensations from all parts of the body to the brain).

We understand that it can be worrying to come to the hospital for neurology treatment, but we’re caring, discreet and easy to talk to. Alongside our Neurologists, our Neurophysiologists will work to support you with a speedy diagnosis so you don’t have to wait and worry and can get back to being you as quickly as possible.

If you need to access a private neurology service appointment with one of our Neurologists please complete our online booking form, contact us via Livechat or call our Private Patient Team on 01580 363 158.

Published on 04 August 2023