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After years of perplexing symptoms, Darryl finally got an answer – and relief

No one could explain Darryl Fontanna’s extreme dizzy spells until he was diagnosed with a functional neurological disorder (FND) at Sunnybrook.

What started as a friendly sparring match with a friend led to years of disabling neurological symptoms for Toronto resident Darryl Fontanna, now 29.

“I was boxing with my buddy for fun,” says Darryl. “I was 21 [years old].”

The two friends had donned boxing gloves and playfully exchanged some jabs and punches in an open field. Although no acute injury occurred that he was aware of, Darryl awoke the next morning with head pressure and impaired vision. “I could barely even think,” he recalls.

It got much worse. As the months wore on, Darryl began to suffer from extreme dizzy spells, insomnia, fatigue, brain fog and severe anxiety attacks. He was diagnosed with post-concussive syndrome, a condition that can occur after a brain injury and typically resolves over months. But though Darryl’s neurological tests all came back normal, his symptoms didn’t go away. He withdrew from his friends, could no longer work and spent days bedridden.

“There was a period where all I could do was lay on my couch and stare at the ceiling,” he says.

After getting no answers from traditional medicine and spending more than $10,000 on unhelpful alternative treatments over seven years, Darryl came across an online discussion. His symptoms matched perfectly with a disorder called persistent postural perceptual dizziness (PPPD), a functional neurological disorder (FND) characterized by a disruption in brain circuits that can be treated.

PPPD often occurs after an injury to the balance system, causing the brain to overreact to normal signals from the eyes, inner ear and muscles and joints. This causes the individual to feel long-lasting dizziness and unsteadiness.

“That’s when all the pieces started falling into place,” says Darryl. He was referred to Dr. Matthew Burke, a cognitive neurologist in Sunnybrook’s Hurvitz Brain Sciences Program.

That first day he saw Dr. Burke for a video consultation in May 2020, Darryl sensed he was coming to the end of a long, confusing and emotionally-draining search for answers. After a lengthy assessment, Dr. Burke confirmed that many of his symptoms could indeed be explained by FND.

“It was such a relief,” Darryl says. “He told me: ‘It is possible to get better.’”

Darryl works out regularly, which helps keep his focus off his symptoms.

A collaborative approach to treat brain disorders

At Sunnybrook’s Garry Hurvitz Brain Sciences Centre, top brain health experts will come together to provide care for patients like Darryl. The Centre, which is currently under construction, will employ an innovative, collaborative approach to diagnosing and treating the most complex brain conditions, bringing together psychiatrists, neurologists, neurosurgeons, ophthalmologists, otologists and other experts in brain sciences.

Thanks to the ongoing and generous support of donors, Sunnybrook’s community of world-leading experts will collectively focus on developing transformative approaches to brain disorders including mental illness, dementia and stroke, as well as neuropsychiatric conditions like FND.

“The major brain afflictions of our time – mood disorder, stroke and dementia – are all interrelated,” says Dr. Anthony Levitt, psychiatrist and chief of the Hurvitz Brain Sciences Program.

“So it makes sense for us to understand and treat them with meaningful collaboration between specialties that have previously functioned separately and in silos.”

The Garry Hurvitz Brain Sciences Centre will house the Harquail Centre for Neuromodulation, where clinicians will employ focused ultrasound (FUS), a revolutionary and less-invasive image-guided therapy that can influence faulty brain circuits. FUS is in clinical trials to treat conditions such as severe obsessive-compulsive disorder, treatment-resistant depression, post-traumatic stress disorder and alcohol use disorder. Also housed in the Centre will be leading-edge facilities for treating mental illness and sleep disorders, as well as multidisciplinary clinics where research will impact outpatient care for stroke, ALS, traumatic brain injury and more.

Dr. Burke is enthusiastic about the Centre’s collaborative and exploratory approach – essential for treating poorly understood disorders of the brain. With a large multidisciplinary team in a state-of-the-art facility, the experts at the Centre are able to investigate and develop novel treatments that are individualized to each patient’s needs.

Dr. Burke says that many of his patients are relieved to finally have their perplexing and disabling symptoms validated and explained, having previously been told their illness is all in their head.

“Functional neurological disorders [are often] hard to wrap your head around and stigmatized,” he says.

Dr. Matthew Burke says that people with FND are often relieved to have a diagnosis, having been told their symptoms are all in their head.

New hope for patients

Dr. Burke notes that many FNDs are triggered by a physical injury or infection, introducing the brain to new symptoms. Even after the trigger has cleared up, dysfunctional brain circuits can amplify these symptoms, causing them to become worse, which in turn lead to anxiety and insomnia, further compounding the problem. The patient then enters a hypervigilant state, where they feel every sensation and symptom very keenly and hyperfocus on the symptoms they’re experiencing.

“It becomes a vicious cycle,” says Dr. Burke.

The new Garry Hurvitz Brain Sciences Centre will be instrumental in tackling these kinds of disorders, he says. As researchers increasingly make connections between the brain, mental health and physical health, there is a need to bring researchers and clinicians together from a diverse range of specialties together in one place.

For his part, Darryl is excited by the prospect of the new facility, noting that it will help educate patients and their families about how disorders like his emerge and how best to treat them.

“It will make FNDs more mainstream – currently there is so little support,” he says. He’s also excited about so many different brain specialties coming together under one roof, to help doctors find additional ways of more efficiently and accurately diagnosing conditions.

With the help of Dr. Burke and the Sunnybrook team, Darryl has made a lot of progress over the past few years. Through physiotherapy, medication to lift his mood and psychological therapy, he’s learning how to control the sensations in his body. In addition to FND, he was also diagnosed with obsessive compulsive disorder, a condition linked to anxiety.

Now, he works out regularly – a pursuit that he says helps to keep his focus off his symptoms. He has resumed working as an electrical apprentice and he can drive again.

“It’s a huge change,” Darryl says.

Dr. Burke notes that the field of functional neurological disorders can be very challenging as it falls into “grey zones” between neurology and psychiatry that have largely been understudied in medicine.

“However, cases like Darryl’s are extremely rewarding and provide strong motivation to continue the work needed to improve the care for these complex patients,” he says.

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This story was produced by the Globe Content Studio with the Sunnybrook Foundation and was originally published in the Globe and Mail online.

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