Epilepsy Society
610 members102 posts

Non - epileptic Seizures

Hi. I am new on this community. I have NES - non epileptic seizures. The kind that medicine does not control. I am so tired of people calling 911 when they see me have a NES. Responders and ER visits do not help me. I do try my best in educating people about NES. My psych meds got changed and now I have NES less frequently. Please write back if you can relate.

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Hi EGraceA sorry to hear that no one understands. I can relate totally because I have NES an complex epileptic seizures too. What I did was had my neurologist talk to my husband and a couple of close friends. Then they could help me talk to others.

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Hi. Good idea but the neurologist that gave me the diagnosis won't help me in teaching others. Sad isn't it.

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Hi. Yes. Was inpatient for 2 days with video telemetry monitoring. Not sure about the MRI or CT scan. Hope this helps...

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HI EGraceA, for years now I have been told that what I have along with many other symptoms was NES because that is what goes along with the other diagnosis. However Last March 2017, I brought the topic up of NES up to my Neuro indicating that when they did the testing (EEG) it was during the day when I wasn't having as much or any seizure activity, that they were mostly at night when I went to bed or waking up in the morning. So she did a 3 day ambulatory EEG on me, and it came back with a surprise to my doc that I was not only having NES, but epileptic seizures as well. She is currently treating my epileptic seizures with Depakote, which has dropped the number of episodes down drastically, however I am still dealing with the I believe the NES. Personally I couldn't tell the difference between the two. What psych meds are you taking that has helped. I would love to know to see if it is something I have tried or not, and if not suggest to my neuro when I see her in a few weeks. always worth a try. Tired of the sleepless nights.

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Hi I've just joined this group, I can relate totally. Please read my post

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