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
My recent hospital ordeal, where unnoticed seizures nearly cost me my life, really opened my eyes to the critical importance of understanding and advocating for seizure disorders, especially severe ones like what people often call a 'grand mal' seizure. While my initial seizures were absence seizures, the cascade of events and the danger I faced felt just as terrifying and life-threatening. A grand mal seizure, medically known as a tonic-clonic seizure, is one of the most recognized types and is incredibly serious. It involves two distinct phases: the tonic phase, where you lose consciousness, your muscles stiffen, and you might cry out; and the clonic phase, where your limbs jerk rhythmically. After this, there's often a post-ictal period of confusion and exhaustion. The risks are huge – falls, injuries, and if the seizure lasts too long or occurs in clusters without recovery, it can lead to a life-threatening condition called status epilepticus. This is why when I was 'losing time' and my seizures were getting worse, as caught on 'absence seizures on footage,' it was a ticking time bomb. What I learned from my experience is that any cluster of seizures, regardless of type, needs immediate, serious attention. The danger of SUDEP (Sudden Unexpected Death in Epilepsy) is real, and uncontrolled seizures increase that risk significantly. It’s not just about convulsive movements; internal changes can be just as deadly. This brings me to the crucial point: patient advocacy. When I encountered 'a nurse annoyed' by having to watch me, or heard snippets like 'what did she come in for?' or 'sorry she's not my patient,' it became clear that not everyone understands the urgency. It's frightening. Here are a few things I now swear by: Prepare a Seizure Action Plan: Have a clear, written summary of your epilepsy type, usual seizure pattern, medications, and emergency contacts. Share it with anyone who might be involved in your care. Bring an Advocate: If possible, always have a trusted friend or family member with you. They can be your voice when you can't be, ensuring your information is heard and that you're being taken seriously. Don't Be Afraid to Speak Up (or Have Your Advocate Speak Up): If you feel dismissed, politely but firmly reiterate your concerns. Ask questions like, 'Can you please document my concern about these seizures?' or 'What is the plan if my seizures continue?' Request to Speak to a Supervisor: If your concerns are still ignored, ask to speak to the charge nurse or a doctor supervising the team. The 'kindness of one nurse' eventually made a difference for me, but it shouldn't take that. Document Everything: Keep a mental (or actual) record of who you spoke to, what was said, and when. This helps track your care. My journey through two comas taught me that healthcare is a partnership. We need to be informed and empowered, even when we’re at our most vulnerable. Never underestimate the power of your voice, or the voice of someone advocating for you, especially when dealing with critical conditions like clusters of seizures.
Im so sorry girly, may the Almighty make it easy for you. Stay strong💪🏽💯