It's hard to prove epilepsy to the doctor when the EEG is normal

Posted by lsittll @lsittll, Wed, Jul 1 5:27pm

You have lots of seizures so they do an EEG. But then during the EEG you have no seizures. How often does this kind of thing happen to us? It’s just like you feel sick so you go to the doctor and at the doctor;s you don’t have the problem/symptoms? We can’t show them the problem.

Liked by Leonard, lynette1975

@lsittll
Hi there,
Excellent question. Unfortunately this happens about 50% of the time. Many doctors and even some Neurologists claimed that if you have a normal EEG you don’t have epilepsy which is often far from accurate. Frequently the doctor will just tell you it’s PNES (Psychogenic Non-Epileptic Seizures) and caused by stress which does happen but I don’t believe it happens as frequently as some doctors claim.
Which if your diagnosed correctly means your seizures are psychologically induced however you can have both epilepsy and PNES at the same time or one or the other.
So just because your EEG is normal doesn’t automatically mean you don’t have Epilepsy. Epilepsy is caused by abnormal electrical activity which is unprovoked.
Take care,
Jake

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Mine are always abnormal. I have never had one without some indication of seizures. I have read though a normal EEG does not rule out epilepsy. I had to look it up but it is on the Epilepsy Foundation website. Here it is…I wish I could give you the link…

"A normal EEG does not mean that you did not have a seizure. Approximately one-half of all EEGs done for patients with seizures are interpreted as normal. Even someone who has seizures every week can have a normal EEG test. This is because the EEG only shows brain activity during the time of the test. If you aren't having a seizure at that time, there may not be any unusual brain waves for the test to record." (1)

1) https://www.epilepsy.com/learn/diagnosis/eeg/what-if-its-normal

Ok I figured out how to get it to you so now the disclaimers…never open up a link from an unknown source.

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@mxyzptlk32
It would be nice if some of the physicians would read the epilepsy forums. Epilepsy is such an individualized condition but just because someone isn’t showing symptoms that the doctors think they should isn’t an indication that they don’t have the condition. But many people have told me after they went to an epilepsy center and they had a seizure that was actually recorded the doctor was finally willing to except the diagnosis of epilepsy. There are some specific signs of PNES vs Epilepsy which is one reason why taking a video of a seizure is very beneficial.
Take care,
Jake

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@jakedduck1

@mxyzptlk32
It would be nice if some of the physicians would read the epilepsy forums. Epilepsy is such an individualized condition but just because someone isn’t showing symptoms that the doctors think they should isn’t an indication that they don’t have the condition. But many people have told me after they went to an epilepsy center and they had a seizure that was actually recorded the doctor was finally willing to except the diagnosis of epilepsy. There are some specific signs of PNES vs Epilepsy which is one reason why taking a video of a seizure is very beneficial.
Take care,
Jake

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@jakedduck1

It never crossed my mind a physician wouldn't already know this. I guess I expect a certain level of intelligence and reasoning ability from a doctor. I would accept it as a challenge but that is me.

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@mxyzptlk32

Mine are always abnormal. I have never had one without some indication of seizures. I have read though a normal EEG does not rule out epilepsy. I had to look it up but it is on the Epilepsy Foundation website. Here it is…I wish I could give you the link…

"A normal EEG does not mean that you did not have a seizure. Approximately one-half of all EEGs done for patients with seizures are interpreted as normal. Even someone who has seizures every week can have a normal EEG test. This is because the EEG only shows brain activity during the time of the test. If you aren't having a seizure at that time, there may not be any unusual brain waves for the test to record." (1)

1) https://www.epilepsy.com/learn/diagnosis/eeg/what-if-its-normal

Ok I figured out how to get it to you so now the disclaimers…never open up a link from an unknown source.

Jump to this post

@mxyzptlk32, I noticed that you wished to post a URL to a web resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, so I added it to your post and here.

– I have seizures, but my EEG was normal. Why? https://www.epilepsy.com/learn/diagnosis/eeg/what-if-its-normal

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Jake:

it also would be nice if physicians would share information more among other doctors they know. I had seen a neurologist in Florida while in college years.
Somehow the topic of me drinking coffee was raised. The neurologist told me coffee has a chemical in it that causes seizures. I was having seizure monitoring while at Johns Hopkins after my second brain surgery and wasn't having seizures for nights. Then I remembered what the doctor in Florida said. I drank coffee before bed. Boom! I had a seizure that night. I told the neurologists what I did. They said they never heard of such a thing. Doctors at Johns Jopkins?! "the Best".And the worst.

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