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Electircal activity/abnormalities along with EKG abnormalities directly linked with Seizures on VEEG, being dismissed as "nothing there".

A MyEpilepsyTeam Member asked a question 💭

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

September 21
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A MyEpilepsyTeam Member

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.

September 23
A MyEpilepsyTeam Member

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

September 23
MyEpilepsyTeam

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

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 that warrants urgent, specialized attention. Seizures of that length fall into a category that neurologists treat as a medical priority, and that alone should be opening doors, not closing them. When one major center dismisses you, the path forward is to seek another Epilepsy Monitoring Unit (EMU) at a Level 4 epilepsy center. These are the highest-tier centers recognized for handling the most complex, treatment-resistant, and diagnostically challenging epilepsy cases. Mayo is not the only one.

Some well-regarded Level 4 centers worth researching include:

- Cleveland Clinic Epilepsy Center (consistently ranked among the top in the world)
- Johns Hopkins Epilepsy Center
- UCSF Epilepsy Center
- NYU Langone Comprehensive Epilepsy Center
- University of Michigan Epilepsy Center

When contacting them, lead with the documented VEEG findings, the seizure duration data, your decades of logs, and the EKG correlations. That is a strong, evidence-based case for admission to an EMU. It is also worth knowing that about 50% of EEGs in people with epilepsy can appear normal — but yours are not normal. You have correlated electrical activity, clinical symptoms, and camera documentation across a 72-hour period. That is significant, and a specialist who focuses on refractory or complex epilepsy will recognize that weight.

Bringing a clearly organized summary to any new appointment — timestamps, seizure durations, aura descriptions, and the VEEG correlation points — can help a new team get up to speed quickly and take your case seriously from the start. For peer support from people who truly understand long-term epilepsy and medical dismissal, MyEpilepsyTeam is a space where members share exactly these kinds of experiences — the exhaustion, the disbelief, and the fight to be heard. Many members there have navigated decades of complex epilepsy and can speak to what has and hasn't worked in finding the right care team.

You are not imagining this. You are not overreacting. Keep pushing.

September 21

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