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Anyone Here Have ESES? Electrical Status Epilepticus During Sleep. A Kind Of Epileptic Encephalopathy. Seeking Others.

A MyEpilepsyTeam Member asked a question 💭
San Leandro, CA
November 21, 2022
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A MyEpilepsyTeam Member

I have Nocturnal Epilepsy, also known as Autosomal Dominant Sleep-related Hypermotive Epilepsy, previously known as Autosomal Dominant Frontal Lobe Epilepsy, previously also known as Sleep Dystonia. The only time I had status epileptic seizures was on SSRI, SSNRI, Tricyclics, Depakote, Keppra and post-op surgery. I was put on stroke alert for several hours, unconscious for around eight hours. Doctors in the hospital could not wake me up with what they called "noxious manuevers." I woke with myclonic status epilepsy seizures for two days while in hospital under observation. Unfortunately, they were my gallbladder surgery doctors not epilepsy neurologists. So, they did not know what to do. Other than take x-rays of my heart and chest, mri of my brain, give me respiratory support. I had hypercarbia per their respiratory doctor who monitored me and my blood levels. I do have Frontal Lobe Atrophy. Other than concussions, no one ever stated it was encephalopathy. I have had reactions to medications and anesthesia for decades. Frontal Lobe Atrophy was discovered in 2009. As a Veteran, the VA doctors actually rarely give a diagnosis. They were even monitoring my gallbladder for more than a few years and would not operate until I had to go to ER for vomiting blood, coagulated blood not fresh blood from the esophagus. For years, the fresh blood was just okay for them. I had to be in so much pain for them to operate. Basically, Frontal Lobe Atrophy is the only thing that the doctors annotate, no diagnosis just awareness.

July 5, 2023
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A MyEpilepsyTeam Member

My first seizures were in my sleep I don't know if this what you are talking about or not
I'd wake up in the floor afterwards not knowing how I got there with my tongue chewed up and all my nails bent back... I never knew I had a seizure condition until this happened a few times. Don't know how much help this is.My seizures have only gotten worse since.

April 5, 2023

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