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Ian shares his experience of living with nocturnal epilepsy and tonic-clonic seizures, describing the challenges and misconceptions.
Ian: Despite having nocturnal epilepsy, seizures don't always occur at night. They happen during sleep, and I'm often unaware of them.
Diane: As Ian's carer, I monitor his seizures and assess their severity. Some episodes require urgent medical attention, adding stress to our lives.
Diane: We've learned to recognize triggers like tiredness and high temperatures, which can exacerbate Ian's seizures.
Ian: Epilepsy affects my memory and ability to drive, adding psychological challenges to daily life.
Ian and Diane navigate the challenges of dealing with seizures and the support they receive from medical professionals.
Diane: While paramedics offer support during seizures, we encounter challenges, including language use and oxygen level monitoring.
Ian: Seizures are terrifying experiences, both for the individual and their loved ones, impacting emotional well-being.
Diane: Social misconceptions about epilepsy persist, leading to misunderstanding and difficulty in acceptance, even among close family members.
Ian and Diane reflect on the initial lack of guidance and support upon Ian's epilepsy diagnosis, highlighting the importance of patient-centric care.
Diane: Initial diagnosis lacked adequate support and information, leaving us to navigate the condition independently.
Ian: Listening to patients' experiences and needs is essential, given the diverse nature of epilepsy.
