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Scott Dainty has been living with epilepsy since he was two years old.
"It's kind of a double-edged sword," he says. "I feel kind of lucky that I didn't get it as an adult and have a very life-altering change happen.
"But, I've had it since I was a kid. It's just always been my reality."
Epilepsy is the most common serious neurological disorder in the world, affecting approximately 300,000 Canadians and 50 million people worldwide.
Many experience debilitating seizures, sometimes up to dozens of times a day. The treatment is often one or more anti-seizure medications. But for 30 per cent of patients, the medications are not effective in controlling their seizures.
Other treatments or treatment options include resective epilepsy surgery (where a small portion of the brain, where seizures are initiated from, is removed), deep brain stimulation, vagus nerve stimulation and ketogenic diet.
"As long I can remember, I have always been on a combination of medications," says Scott. "My seizures are tough to control and doctors have never been able to pinpoint where the seizures are coming from, through EEGs and MRIs."
So, when Scott, now 31 and a naturopath, heard about a new clinical research study by Dr. Marjan Rafiee and Dr. Taufik Valiante of the Krembil Brain Institute and Toronto Western Hospital at UHN, looking at the effectiveness of a specific Mozart sonata on reducing seizures in patients with epilepsy, he knew he wanted to be involved.
The study titled "The Rhyme and Rhythm of Music in Epilepsy" was recently published in the international journal
Epilepsia Open, and looks at the effects of the Mozart melody, "Sonata for Two Pianos in D Major, K. 448" on reducing seizures, as compared to another auditory stimulus as the control piece.
The control piece was a scrambled version of the original Mozart composition, with similar features, but shuffled randomly and lacking any rhythmicity, so it sounded like noise.
"In the past 15 to 20 years, we have learned a lot about how listening to Mozart's compositions in individuals with epilepsy appears to demonstrate a reduction in seizure frequency," says Dr. Rafiee. "But, one of the questions that still needed to be answered was whether individuals would show a similar reduction in seizure frequency by listening to another auditory stimulus – a control piece – as compared to Mozart."
Thirteen patients were recruited to participate in the novel, year-long study. After three months of a baseline period, half of the patients listened to Mozart's Sonata once daily for three months, then switched to the scrambled version for three months. The others started the intervention by listening to the scrambled version for three months, then switched to daily listening of Mozart.
Patients kept "seizure diaries" to document their seizure frequency during the intervention. Their medications were kept unchanged during the course of the study.
What the researchers found has them feeling optimistic about this area of study.
"Our results showed daily listening to Mozart K.448 was associated with reducing seizure frequency in adult individuals with epilepsy," says Dr. Rafiee. "This suggests that daily Mozart listening may be considered as a supplemental therapeutic option to reduce seizures in individuals with epilepsy."
"As a surgeon, I have the pleasure of seeing individuals benefit from surgery, however I also know well those individuals for whom surgery is not an option, or those who have not benefitted from surgery, so, we are always looking for ways to improve symptom control, and improve quality of life for those with epilepsy," says Dr. Taufik Valiante, senior author of the study and the Director of the Surgical Epilepsy Program at Krembil Brain Institute at UHN and co-Director of CRANIA.
"Like all research, ours raises a lot of questions that we are excited to continue to answer with further research and support from the epilepsy community."
While these results are promising, the next step is to conduct larger studies with more patients, over a longer period of time.
"Our goal is to disseminate the knowledge we gain, and to create novel research studies through which we can create the opportunity for individuals with epilepsy to experience the potential benefits from listening to music, in addition to providing us the chance to improve our understanding about the impact of music on epilepsy and the brain," says Dr. Rafiee.
For Scott, who did see a reduction in his seizure frequency, participating in the study was a way to give back and help reduce the stigma for others living with epilepsy.
"I think the more we can do to try to understand epilepsy and help people living with it have a better quality of life, it's a step in the right direction," he says.