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Undo Diagnosis? I Need Some Support!
A MyEpilepsyTeam Member asked a question 💭

I was diagnosed with complex partial seizures in 2005. It was with an EEG test. I have had a couple since then that didn't catch any seizure activity. was told by the head of Neurology that EEG's weren't really a good tool and were archaic. I moved to another state, had another EEG which showed nothing. And now they want me to have another one to catch the seizure I had earlier this year and as lately as Thanksgiving. If they don't capture anything, they will take me off my medications. So… read more

posted December 29, 2022 (edited)
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A MyEpilepsyTeam Member

Thank you. I haven’t had all these done.

posted December 30, 2022
A MyEpilepsyTeam Member

Jennifer, I am a retired nurse, and have had epilepsy since my childhood. I am the only one in my family who has it, so mine was definitely not hereditary, which is not common in people (dogs, yes). I learned at a young age to insist on knowing all about my care and medications, and I realized and had verified when I went to college for my RN, that my medical treatment is essentially up to me. Be firm with what you know is real for you, and the doctors will respect you for it. Who really knows more about your condition than you? (Just as an aside, I have 4 kids, all grown, all without problems).

posted August 22, 2023
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member , You might have had most of these tests done but maybe there’s a few you haven’t & so I thought I’d share it with you. Good luck. Your friend in Texas, Becky

posted December 30, 2022
A MyEpilepsyTeam Member

I feel that I’m just going in there and my luck has been they haven’t found anything. But I’m not in my normal stressful environment. I’m not at work among the normal noise and loudness that causes me stress. The same light going on and off that causes me to be overwhelmed. So I wish they would do an ambulatory EEG to give it a real chance of capturing something. Make sense?

posted December 30, 2022
A MyEpilepsyTeam Member

Jennifer, the EEG is a device created by human beings, thus just like us it can make mistakes/miss things.

The problem is that unless you are not "lucky enough to have a seizure" and have the EEG pick up the changes, then it can be missed.

An excellent example is Kurt Eichenwald (his book about this is: A Mind Unraveled -- A Memoir
One of the doctors explained to him that when extremely too much anticonvulsant is in your blood, then your anticonvulsant becomes and organ killer. They had to pump all of the blood out of his body while pumping in fresh blood to keep him alive and did so fast enough that no organs were killed.

He had previously been diagnosed as having epilepsy (by a few neurologists), but while in the hospital recovering (with EEGs attached), he was having grand mal seizures but the EEG never registered any of them.
An arrogant neurologist told him that he did not have seizures but rather that it was all hysteria. He was staying in the hospital for recovery because his previous neurologist did no blood test after the first and kept increasing him anticonvulsants any time he had a seizure such that he ended up having to go to the ER. He went to a psychiatrist and after asking him a few questions, the doctor told him that he did not have hysteria. He explained there are certain traits of hysteria that cannot be hidden.

And this is just one example of thousands, perhaps millions, where I neurologist ruled that because the EEG showed no changes during the seizure, then it is not an epileptic seizures. And this includes perhaps thousands who had a previous neurologist who had diagnosed them as having epilepsy.

Unfortunately, there is no other equipment that can verify an epileptic seizure. And their are many (PNES) that can look so much like an epileptic seizure.

posted December 30, 2022
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