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dvirah@yahoo.com

Video EEG frustration

I am new to the boards, and would like to get some feedback about some frustration that I recently experienced with an apparently inconclusive impatient video EEG.

About four months ago, I started experiencing symptoms of what could be temporal lobe epilepsy.  I would experience déjà vu more frequently, and would experience strange, depersonalized states where I would have some confusion and inability to understand language shortly afterwards.  The weirdest part is that when I look at strangers (which I get the opportunity to do multiple times per day because I take the train to work), I sometimes "recognize" them even if I've never seen them before.  It's sort of like a false memory.

I have been on an anti-seizure med for years to help control mild mood swings.

The first neurologist I went to saw that I had a history of depression and almost immediately told me to "speak to [my] psychiatrist."  I got a second opinion and the new neuro said right off the bat that she thought I may be experiencing temporal lobe epilepsy.  Two MRI's showed mild mesial temporal sclerosis in my left hippocampus.  Outpatient EEG was normal.  My neuro suggested I complete a 5-day inpatient video EEG, which I just did.

The video EEG experience was honestly somewhat baffling.  They pulled me off my anti-seizure med to see if they could trigger something.  My symptoms generally come in clusters, so of course none of them really came up during the week.  They did see on the EEG some interictal epileptiform discharges.  At first they saw these in the left temporal lobe, which would have correlated with the MRI finding.  Then, however, the discharges started to generalize across the brain.  This mystified them, because I've never had a generalized seizure.

The nail in my coffin, however, was this.  I was encouraged to report any weirdness at all so they could check the readout for any seizures.  Yesterday I was talking to a visitor when something he said triggered a memory.  However, the bizarre thing was that I could not tell whether the memory was "mine" or whether I had seen it on TV or a movie or something.  This had never happened before and was quite unlike my other symptoms.  I reported it to them, and of course nothing appeared on the reading.  Inevitably, this one instance (despite the MRI findings and interictal spikes) led the attending to conclude that my symptoms must be psychogenic, and that again, I should "speak to my psychiatrist."

How could seizures have been dismissed so out of hand like this??  I did not experience any of my regular symptoms during the week.  I showed epileptiform spikes.  My regular symptoms correlate with the MRI findings.  Who knows why the one episode I did experience in the hospital occurred...I mean, it could have just been low blood sugar or something from not eating much of anything for several days.

I'm just upset that with all the evidence, I still got written off as psychotic.  My psychiatrist absolutely does not believe this is a "psychiatric" issue and she's been working with me for ten years.  I'm just at the end of my rope here.

Any feedback?