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Should We Settle For A Diagnosis Of Non-epileptic Seizures?

Should We Settle For A Diagnosis Of Non-epileptic Seizures?

Long story short, my 19 year old daughter began having occasional seizures during middle school. About two years ago we went to a reputable epilepsy clinic and were given a diagnosis of non-epileptic seizures. This was after having to leave college after three weeks because the seizures became uncontrollable. She did NOT, however, have a seizure during the EEG at the clinic. She's had clean MRIs, also. After returning to college this year she has begun to have seizures multiple times a day, and… read more

posted January 24
A MyEpilepsyTeam Member

You guys are the best ppl to pretty much come up with correct diagnosis in this scenario...ive had similar experiences with eeg showing up not much at all i think because i was out of my comfort zone...when im home and relaxing is when its happening..sorta had docs look at me weird then diagnosed non epileptic seizures...i was always hoping id have 1 in front of doc that was long time ago.. had daily seizures since.. trialed lots different meds too....hang in there ..very frustrating time for yr family stick with it

posted January 24
A MyEpilepsyTeam Member

Right. She loves it there but I'm sure it's more stressful than hanging out at home.

posted January 24
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
You mentioned how her seizures went crazy after she left for college. That’s how I would always be after school started. I would go all summer with just a couple seizures. Then when school started I would have them more often. The biggest reason is because I would be more relaxed in the summer not having to think about all the schoolwork. As soon as school started I’d get more stressed and have more seizures. Same with EEG’s, we just lay there and don’t think about much so we don’t have as many seizures.

posted January 24 (edited)
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
Long story short. Any other clinic would do the same thing. But I know exactly what you are talking about. I had several EEG’s where I didn’t have a seizure. One of them was even a surgery where they drilled holes in my head and attached wires to my brain. What I chose to do is have an RNS surgery (Neurostimulator). The RNS is like a 24/7 EEG. It records my brain activity all day and night. Each night, before I go to bed, I turn on the monitor and stick a wand on my head. It will download all of my brain activity for the day. When it’s complete I hit send and all of the information goes to my doctors. When I go see my doctors they look at their computer and can see everywhere I had a seizure and gather information. So if you’d like to know more just ask.

posted January 24 (edited)
A MyEpilepsyTeam Member

I suppose non epileptic could be triggered by that, too, though?

posted January 26

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