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Finding hope after years of misdiagnosis: Jammie-Lee’s epilepsy journey

Epilepsy patient Jammie-Lee standing smiling with her epilepsy team from Austin Health

3 July 2024

At just 29 years old, Jammie-Lee has endured more than most.

For 11 long years, she sought answers for her seizures and hallucinations, and finally, after a 12-hour drive to Melbourne, she found them in just 20 minutes.

Jammie's journey with epilepsy began when she was only eight months old, experiencing a febrile convulsion—a seizure triggered by high fever. This early episode was a precursor to a challenging path ahead.

By the time Jammie was four, she started experiencing hallucinations, specifically remembering “a metallic taste in her mouth and vivid mental images of being in a different place”. Unbeknownst to her, these were actually epileptic seizures. Throughout her school years, these hallucinations became her "normal."

"I had no idea about epilepsy. I’d be in class and have these weird hallucinations and I just thought it was normal, that everyone else maybe had it too," Jammie recalls.

The turning point came at 16 when she woke up in a hospital bed after a nocturnal tonic-clonic seizure. It was her first direct encounter with the term 'epilepsy', sparking a journey for answers that spanned over a decade. Despite consulting multiple neurologists, she was misdiagnosed with mental health issues instead of psychogenic non-epileptic seizures (PNES).

Jammie’s seizures remained relatively mild until 2022, when she experienced a tonic-clonic seizure while having a coffee with her partner, Bradley.

"That's when the rest of it completely went downhill," Jammie recounts.

With her seizures escalating in frequency and severity, Jammie reached out to Melbourne-based Epileptologist Dr Moksh Sethi. Supported by her family, she made the long trip to Melbourne with her mum, leaving behind her partner and two children, Bailey (seven) and Byron (six).

After assessing her symptoms, Jammie was finally given the correct diagnoses; temporal lobe epilepsy, secondary hippocampal sclerosis, mesial temporal sclerosis and PNES.

Dr Moksh referred Jammie to the Austin Health Epilepsy Unit, which is home to the Bladin-Berkovic Comprehensive Epilepsy Program; one of the leading units for the management of complex epilepsies in Australia.

Under the expert care of Epilepsy Neurologist Dr Saul Mullen and the epilepsy team, Jammie underwent two weeks of thorough scans and testing. The diagnosis revealed significant damage to Jammie’s hippocampus, the brain component essential for learning and memory, resulting in irreversible short-term memory loss and speech difficulties. It also revealed that she would be a great candidate for surgery.

"I was given all the answers that I didn’t get for 11 years… I was completely shocked," Jammie shares.

The journey to this diagnosis was a collaborative effort between Dr Moksh Sethi, Austin Health's epilepsy team, and the Australian Epilepsy Project (AEP) at the Florey Institute of Neuroscience and Mental Health. As a participant of the AEP, Jammie benefited from advanced testing including imaging, cognitive assessment, and genetics.

Jammie-Lee receiving epilepsy testing at Austin Health and The Florey

Faced with her diagnosis, Jammie has made the decision to undergo a left temporal lobectomy. This decision, driven by her desire to be able to do more with her kids, was a relatively easy one to make.

"I just looked at my kids and thought, I’ve got to do it. If it gives me a chance at being a better mum and I can live more with them and do more with them, then that's what I'll do."

Dr Moksh Sethi says, “I am very pleased to know that she is an excellent candidate for a left temporal lobectomy with good prospects for an excellent outcome. I recently saw her via a tele-video consultation after her Austin Health admission and was very pleased to see the transformation in her outlook and how positive she felt.”

Reflecting on her experience, Jammie believes that early access to expert epilepsy specialist care and timely consideration for epilepsy surgery could have drastically changed her situation.

"I believe that if I went to the Austin as soon as I was diagnosed with epilepsy, I'd be in a completely different situation."

One of the hardest parts of Jammie’s journey has been the impact on her children. Striking a balance between shielding them from worry and helping them understand her condition has been an ongoing challenge.

"As a mum, seeing your kids in pain is the worst torture you can possibly come across."

Throughout this difficult time, Jammie’s family has been her rock. Her mum, Lynda, “changed her whole life” to be with Jammie during this journey.

"Without mum, I don't believe I would've survived. She's seen her only daughter at the lowest of lows and no matter what she had going on with herself, she would always pick me back up, regardless of how difficult it was for her," Jammie shares.

Jammie-Lee with her mum Lynda
Jammie-Lee with her mum Lynda

Her dad, Nigel, her partner, Bradley, and her brother, Corey, have also been pillars of strength, offering constant support.

Despite the hardships, Jammie is profoundly grateful for the care she received at Austin Health.

"I was just blown away by all the specialists that I had and how professional they were. They came to check on me every single day, even if it was just to say a few words. It literally just blew me away compared to what I was used to."

Now, Jammie hopes her story can inspire and help others facing similar struggles.

"If I can help at least one person, that means the world to me."

Jamie-Lee with her partner, Bradley, and her two children Byron and Bailey
Jammie-Lee with her partner Bradley (left), and her two children Bailey and Byron (right)