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Sunday 13 June 2021 05:52:05 GMT

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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

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

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