Non-epileptic seizures
 

Hi everyone,

Is there anyone out there who has been diagnosed with these? I have just been diagnosed with them and wanted to hear some actual examples of other people's experiences. Thanks, M-i-m

I had non-epileptic seizures from PCS in high school. I was treated with Dilantin (phenytoin) and later phenobarbital when the Dilantin caused trouble with my gums.

Are you experiencing absence seizures, m-i-m?

Hockey,

I was not told they were absence seizures, only that they were not epileptic, or caused by abnormal electrical brain wave activity. The actual term they used at the Epilepsy center was Paroxysmal Non-Epileptic Seizures or PNES.

Can you describe what happens?

How did they determine this? Im assuming they witnessed it.

Kev, don't they usually chalk up these type of seizures to anxiety and treat them with stuff like Xanax?

No clue. Ive been trying to figure out mine. They only gave me a 20 minute eeg which was fine. The neuropsych seems to think they are frontal lobe seizures, but obviously cant confirm. He recommended to the neurologist I have a multi day take home eeg. Neurologist has been saying for months they sound like seizures as well, but refuses to do anything because the 20 minute eeg was normal. Who knows what the next step is.

I can, for the most part control mine. They only happen during sleep, or when my headaches are insanely bad (like being in a low crowded place, or to much stimulation) or when im extremely tired. I usually feel them coming, so I can take myself out of that environment and that sometimes works.

Hockey and Kevbo,

I went to the Epilepsy Center and was on a video EEG for 5 days as an inpatient at the hospital. Not only did they do the traditional electrodes on my scalp, they inserted 1 into each cheek at a hollow space by my jaw to try to capture a deeper temporal lobe seizure. They finally caught one of my typical episodes on the third night after I was sleep deprived the night before.

My seizure from my perspective begins with me suddenly getting confused and I don't know what I'm doing or what I'm supposed to be doing. Then everything just gets very slow; my speech gets worse (word-finding), reaction time, very slow mental processing and it begins. My family and friends tell me my head turns to the right, and my eyes roll to the extreme right. Although I can hear what's going on around me, I cannot respond to questions and I cannot move. Sometimes I don't know what's going on around me, and I have no concept of how much time passes between this stage and the next, which is a deep breath, followed by my confusion as to where I am and what's just happened. At this stage, my vocabulary is usually only , "Well" or "That's the thing", which I say again and again, even though I want to say something else. This lasts a few minute, then I fully return to normal state.

I was told my seizures have a psychological basis rather than abnormal brain activity basis, and that a good percentage of people who get video EEG are determined to have these types of seizures vs. epilepsy, which may have been previously diagnosed, but not getting better with anti-epileptic meds. The seizures can be almost identical to epileptic seizures.

I will be seeing a psychologist or psychiatrist to treat these. No meds that I know of, at least for now. And no anti-epileptic meds for sure. They believe these seizures are brought on by many factors, including trauma (physical or emotional), sudden change, great loss, or insufficient coping skills, speaking in general terms.

I hope someone here who has been diagnosed with these can tell me what to expect. I am grateful to finally have a diagnosis. M-i-m

It's great that you were given such comprehensive testing. I grew weary of hearing "probably," "maybe" and "wait and see."

Yes, some seizure meds, like carbamazepine, are actually contraindicated for these types of seizures.

I hope you see improvement.

Just started dilantin today. Was at doctors office and doctor said I started zoning out and just staring and kind of lightly smacking my lips (something ive been complaining about for well over 8 months) when I finally came to I kept repeating the word "was" over and over he said and eventually zoned out again.

This is after my wife told me sunday night around midnight (I remember having an static electricity like feeling in my head and seeing flashes of light) that I was laying in bed and flopping around like a fish for a minute. then I was would rambling about weird stuff and mumbling and kept getting tremors and zoning out.

Doctor had me on klonopin for a few weeks because he thought the electric jerk (I get a quick like shock of electricity in my body and my whole body jerks, happens throughout the day) but it didnt really do much.

After witnessing this today he is 100% certain im having seizures. He went into more details but I cant remember, was really foggy and still am. In an appt a few weeks ago he says eegs dont always show seizures for people, and most doctors end up chaulking it up to being anxiety. Well, they tried the anxiety routes a few months ago and it did nothing.

Who knows.