I had two seizures in the waiting room within an hour. My husband told the front desk and the doctor asked a nurse to watch me in the staff area.
She came out visibly annoyed that she was forced to watch me. She’s not in this video.
I had advocated to the nurse that I had epilepsy, the types, that I’m completely unaware of my seizures, and even the genetic mutation I had for epilepsy. She rolled her eyes. When I asked for my husband to sit next to me in the empty seat of the staff area, she said NO.
I never saw her again. I didn’t know I had that many absence seizures until watching the videos back.
She never returned. No one knew anything about me but my name. Other nurses were not told I had epilepsy and had been having seizures.
We went to the emergency room for an actual emergency. My labs were terrible, my cultures were positive, and it was triggering epileptic seizures.
It’s dangerous to let epileptics have clusters of seizures like this. It might not have became convulsive until the end but they are still dangerous especially in repetition. SUDEP can be an unfortunate result of uncontrolled seizures in epilepsy.
I’m thankful for the nurse that paid attention to her surroundings and to me. She was the reason everyone else took the situation more seriously.
I could see some of the staff were visibly frustrated from this video and maybe they were tired, understaffed, and there were too many emergencies at once but I ended up in two comas due to uncontrollable epilepsy triggered from a central line infection after this and no one took it seriously until I was fighting for life.
Be kind not dismissive.
This is healthCARE.
#EpilepsyAwareness #SeizureDisorder #Advocacy #HealthCareMatters #PatientAdvocacy #InvisibleIllness
Epilepsy is a neurological disorder that affects millions worldwide, characterized by recurrent seizures that vary in type and severity. Among seizure types, absence seizures involve brief lapses in awareness, often unnoticed by others, yet they can indicate serious underlying neurological issues. A genetic mutation can also influence epilepsy severity and seizure types, complicating management. Clusters of seizures, where multiple seizures occur in a short timeframe, are particularly dangerous. Even when seizures are non-convulsive, repetitive episodes can significantly increase the risk of Sudden Unexpected Death in Epilepsy (SUDEP), a devastating and sometimes preventable outcome. Immediate recognition and intervention for cluster seizures are critical to patient safety. Healthcare settings pose unique challenges for epilepsy patients. Staff awareness and training about epilepsy are essential. Unfortunately, as illustrated by patient experiences, dismissive attitudes and inadequate communication among medical personnel can jeopardize care quality and patient outcomes. Nurses and doctors must be informed about patients’ conditions and treat them with empathy and professionalism. Advocating for epilepsy patients includes allowing support persons to stay close during vulnerable moments and ensuring that the whole care team receives clear information about the patient’s seizure types and risks. Monitoring patients carefully, especially those unaware of their seizures, is necessary to prevent unnoticed episodes and deterioration. The importance of kindness and attention by healthcare workers cannot be overstated. Even when hospital staff face exhaustion or understaffing, prioritizing respectful, informed care preserves patient dignity and can be life-saving. Healthcare is a human right that demands compassion, education, and vigilance. Raising awareness about epilepsy and seizure disorders through hashtags like #EpilepsyAwareness, #SeizureDisorder, #PatientAdvocacy, and #HealthCareMatters helps foster understanding and reduce stigma. When healthcare providers, patients, and communities collaborate, they improve safety and quality of life for people living with epilepsy worldwide.
Im so sorry girly, may the Almighty make it easy for you. Stay strong💪🏽💯