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I’ve lived with seizures for 45 years, documented with EEG abnormalities and decades of logs. but Mayo Clinic dismissed me last week despite all of this. I’m here to connect with others who understand dismissal and long‑term epilepsy, not surface‑level advice. Where do I go for support and for help in figuring out what is causing the chronic daily seizures and why the duration is now over 75 minutes per seizure with clusters lasting as long or longer. I don't know what to do with the dismissal… read more
I'm sorry to hear that, that is all invalidating, dismissive and harmful. that's not medicine that is more trauma. I had a lazy read from an inpatient VEEG nearly 10 years ago which again showed electrical abnormalities all consistent with my seizures...but this was before they were as bad as they are now. And despite that, the neuro tried to classify them as functional seizures, as well. That misdiagnosis follows you around and with epilepsy it is so difficult to get something like that off of your record and for someone to hear you and actually do an independent investigation and study without being clouded by past mistakes made from horrible doctors who are harming you. I keep everything logged, I do video myself as best as i can. but still, i had this doctor who focused on one feature out of an hour long seizure and tried to call it functional for ONE feature where as everything else was typical epilepsy. That is so harmful, dismissive and invalidating. Thank you for your response.
It’s been an uphill struggle for me for 10 years since I had my third traumatic brain injury that was severe. My skull was broken in five places. And I’ve been written off as having non-epileptic psychogenic fits because of the TBI, complex PTSD from childhood, sexual abuse, neglect and negligence and from the PTSD I got the service and autism. I have many contributing factors since my new neurologist to me having epilepsy. He just wants more testing new testing so that he has his own baseline. Swedish neuroscience at Cherry Hill campus told me I had cluster seizures, left hippocampus, sclerosis and atrophy and massive frontal lobe lesions, but then they sent me on my way without any medication or education on what any of that meant and then I went with the Alaska Native Medical Center because they were the one sending me to Swedish neuroscience and they didn’t really care once they said it was psychogenic. They were like oh have a nice life. Those are hard to get rid of. I guess my down is not logging any of my events, keeping a journal trying to find friends who will actually videotape me your family members who actually care
45 years of living with seizures, meticulous logs, and documented EEG findings — and still being dismissed? That is not just frustrating, it is genuinely harmful, and that experience deserves to be taken seriously.
What you are describing — seizures lasting over 75 minutes with clusters of similar duration — is something Show Full Answer
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