I Had The 4 Day Seizure Study When I Was First Diagnosed Then Via Eeg With Temporal Lobe Epilepsy. No Seizure Activity During The Study | MyEpilepsyTeam

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I Had The 4 Day Seizure Study When I Was First Diagnosed Then Via Eeg With Temporal Lobe Epilepsy. No Seizure Activity During The Study
A MyEpilepsyTeam Member asked a question 💭

My new neurologist is telling me I don't have epilepsy based off this four day test. Thankfully I don't have the brutal seizures many of you have but I've had partials, absent, black outs and bizarre behaviors. I'm under control with the typical stabilization meds. Any four days of an epileptic's life varies, that's why I can't buy life time diagnosis from this. I'd love to say I don't have epilepsy but I'm not going to go jumping out of his office when I think he's wrong. Feedback?

posted August 27, 2018
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A MyEpilepsyTeam Member

Listen, I used to have seizures every night. Now (with msds, vitamins, and cbd oil) I have 1 almost seizure a month or 2 months.
I have hired and fired many drs because it doesn't feel right.
Sometimes a seizure are a day, a week, a month, or even a year before the next seizure. Just trust your gut. If something doesn't feel right and you know it, then you need another option.

posted September 3, 2018
A MyEpilepsyTeam Member

Ma'am not to hurt you happines my neurologist told me the same thing during two EEG study as he put it the strikes on the testing werent high enough to register for epileptec seizures but we do see seizure activity, but all the while I was kept on anit-epileptic medication and the third testing rated epileptic seizures all the while i was having the same symptoms, migranes, auras, fall-outs, black-outs, loss of consciusness,contusions, sprains from falling while seizing so if I was you RUN and get a second and third opinion!!

posted August 28, 2018
A MyEpilepsyTeam Member

I suppose good and bad news. Since you want to know but good news to have heard that you not a person with epilepsy

posted August 29, 2018
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member, I like your advice. It took 8 years to finally diagnose my epilepsy. It was strange to have a tonic-clonic seizure while in a tube-type MRI. Very difficult to immediately comprehend where your at and what's happening. It may take effort and years to find a professional, who truly understands the seizures.
Seizures are not necessarily epilepsy. Yesterday, a great-nephew scared the family with a Febrile (high fever) seizure. My Texas A&M physician and College Station psychiatrist believed my seizures were psychogenic, not epilepsy.
Putting forth the effort to find a professional, who really knows epilepsy and seizures, may take years and a Spirit of Life blessing.

posted August 28, 2018
A MyEpilepsyTeam Member

I well understand that seizures alone are not epilepsy, which is something he mentioned. I have more than just a basic knowledge of epilepsy as a cousin has dealt with it for decades. Then I get diagnosed and I read everything I could get my hands on.

I have what I need from this Dr., I'll move on. I just found his diagnosis nonsensical based on a four day study. My psychiatrist has been treating me the whole time anyhow so I can find a new neurologist.

Thanks for the feedback!

posted September 3, 2018

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