Epilepsy Lived Experience - Iain

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11 min 29 sec
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Living with Epilepsy: Ian and Diane's Story

Understanding Nocturnal Epilepsy

Ian shares his experience of living with nocturnal epilepsy and tonic-clonic seizures, describing the challenges and misconceptions.

Nocturnal Seizures

Ian: Despite having nocturnal epilepsy, seizures don't always occur at night. They happen during sleep, and I'm often unaware of them.

Caring for Ian

Diane: As Ian's carer, I monitor his seizures and assess their severity. Some episodes require urgent medical attention, adding stress to our lives.

Identifying Triggers

Diane: We've learned to recognize triggers like tiredness and high temperatures, which can exacerbate Ian's seizures.

Impact on Daily Life

Ian: Epilepsy affects my memory and ability to drive, adding psychological challenges to daily life.

Dealing with Seizures

Ian and Diane navigate the challenges of dealing with seizures and the support they receive from medical professionals.

Response from Medical Personnel

Diane: While paramedics offer support during seizures, we encounter challenges, including language use and oxygen level monitoring.

Emotional Impact

Ian: Seizures are terrifying experiences, both for the individual and their loved ones, impacting emotional well-being.

Lack of Understanding

Diane: Social misconceptions about epilepsy persist, leading to misunderstanding and difficulty in acceptance, even among close family members.

Seeking Support

Ian and Diane reflect on the initial lack of guidance and support upon Ian's epilepsy diagnosis, highlighting the importance of patient-centric care.

Challenges in Diagnosis

Diane: Initial diagnosis lacked adequate support and information, leaving us to navigate the condition independently.

Importance of Patient Input

Ian: Listening to patients' experiences and needs is essential, given the diverse nature of epilepsy.