When her epilepsy was at its worst, Alanna Ind was having seizures several times a day and her neurologist warned her if they could not find a solution there was a "very high chance" she could die.
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Ms Ind, 33, was diagnosed with epilepsy when she was 11 and could go months without having seizures, then lapse in to periods of having multiple convulsions each day as well as absent seizures.
Unfortunately she is one of about 30 per cent of people with epilepsy whose seizures are resistant to the drugs available to treat the condition.
But since August she has been seizure-free after having a device implanted into her chest and neck that sends electrical impulses through her brain every five minutes to prevent seizures.
It feels like a fog has lifted and I feel like a normal person. It's given me so much hope for the future
- Alanna Ind
The only side effect is a "funny voice" which lasts for a few seconds because one of the vagus nerve stimulator implants sits close to her vocal chords and vibrates when the electrical pulse is triggered.
"For me, since having it in I haven't had any seizures ... it feel like a fog has lifted and I feel like a normal person," she said. "It's given me so much hope for the future."
And she passes that hope on to the patients she works with as a nurse in the oncology ward at Ballarat Health Services.
She first qualified as a primary school teacher, then decided to study nursing.
"When I was studying teaching I always had the thought in the back of my mind that I wished I was doing nursing. But I wanted to see teaching through, then I got quite sick with epilepsy so I decided one day when it got more manageable I'd go back to do nursing because if I didn't do nursing I'd regret it."
When her epilepsy stabilised she worked as a casual relief teacher while studying nursing and has now worked at BHS for three years.
Despite being classed as having drug resistant epilepsy and the SenTiva implant Ms Ind is still on medication and has been since shortly after she was diagnosed as a child.
"There was a period back in around 2013 where I was having multiple tonic-clonic seizures a day. I was trying so many different medications and it got to the point where my neurologist said to me if they didn't find a solution to what was going on there was a very high chance I could die, which is very confronting for someone of that age," she said.
"I really had tried pretty much all of the medications, and had a lot of reactions.
"At the moment I'm on three different medications and they still make me tired and nauseous but i don't really know any different because I've been on medication from such a young age."
When her epilepsy was stable Ms Ind managed to get her drivers licence in 2007 but in 2010 had a seizure while driving and suffered multiple severe injuries. After a year of no seizures she regained her licence but after suffering a seizure walking through her front door after driving home in 2012 she decided driving was too dangerous.
"The risk is just too high for me; I don't think it's worth it and I don't know what I would do if I hurt someone else," she said.
There is still a lot of social stigma and exclusion being experienced by patients. The unpredictability of epilepsy reduces patients' quality of life and affects mental health
- Alison Ottrey
Ms Ind raised the possibility of the vagus nerve stimulator with her neurologist after doing lots of research and, after a period of waiting "to see what happened" she was eventually referred to Professor Terence O'Brien, program director Alfred Brain and deputy director of research at Alfred Health and president of the Epilepsy Society of Australia, who confirmed she was a good candidate for the device.
"It can take some time for patients to receive a drug resistant epilepsy diagnosis, and even more time for them to be referred to comprehensive epilepsy centres. If we know patients are not responding to antiepileptic medicines, we need to explore other options earlier," he said.
"We want to see technology like vagus nerve stimulation therapy become an important pillar in the way we manage drug resistant epilepsy in patients who have been evaluated in a comprehensive epilepsy centre and are found to not be suitable for resective epilepsy surgery. It will help to raise better awareness of DRE, encourage earlier diagnoses and allow patients to benefit from new and advanced therapies."
The electrical impulses stop the electrical misfires of the brain that cause epilepsy, and if a seizure does occur it triggers or a bystander can swipe a magnet over the implant and it will stop the seizure.
SenTiva is said to be the first epilepsy device of its size and weight approved by the Therapeutic Goods Association for use in Australia that prevents seizures before they start and delivers extra therapy to stop seizures.
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"The implant is just below my left collarbone and I've got wires running up my neck and a little licorice bullet-shaped implant in my neck. I had it put in in August and have had no epilepsy activity since," Ms Ind said.
Alfred Health epilepsy nurse practitioner candidate Alison Ottrey said raising public awareness about drug resistant epilepsy was an important step in reducing the stigma that patients face.
"There is still a lot of social stigma and exclusion being experienced by patients. The unpredictability of epilepsy reduces patients' quality of life and affects mental health," she said.
"Depression and anxiety are some of the most common mental health co-morbidities associated with epilepsy and they are directly linked to the frequency and severity of seizures. Introducing new therapies that can prevent seizures is crucial to elevating epilepsy patients' wellbeing."
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