I went to visit "Dr. Welby" (a childhood friend
who became a neurologist, one with his own
clinic) recently, and spent almost a week at his
house under observation, with a 4-day ambulatory
EEG on (results not yet in) - and I was also seen
by an associate of his, a neuropsychiatrist. I had
had "odd" events occur occasionally since early
childhood, but these became a daily problem
(with multiple events of at least six different types)
about nine months ago, about the time of a heart
arrhythmia. In that nine months, my local neurologist
has seen me only three times, has given me the
5-minute neuro exam twice, and he sent me for
an MRI and short EEG only upon suggestion.
He did send me for a sleep study, which proved
important (four heart specialists had seen me
at the time of the arrhythmia, two noted the enlarged
heart, one offered in his notes possible causes
[including sleep apnea], but NONE mentioned this
to me, or pursued the cause!). My (new) GP, who
had seen me for a total of about 20 minutes (ever!),
referred me to the neurologist for "pseudoseizures",
a very prejudicial referral. I had no idea at the
time that neurologists tend to be more concerned
that they do not take seriously a case of
"hysterical/dissociative/conversion-disorder" and
look bad, than in looking for causes for unusual
looking cases without well-defined and recognizable
symptoms. I had been unwittingly "set-up" from
the beginning, and the "corker" was the referral to
a "big-shot" neurologist (the "mentor" of my
neurologist...) in another city. His job, it appears
now (since he bothered with little in the exam),
was to convince me I had this disorder, and to start
the 7-10 year course of psychiatric therapy to try
to rid myself of this "disorder".

A friend very recently went to the same local
neurological office as I did ("the best in town"),
but saw a different neurologist. Her complaints
were moderate headaches (that could get bad),
and sometimes feeling dizzy. Result: on the *first*
appointment, she gets the 1-hour neuro exam, an
AED prescription, and is sent for an MRI and the
long-form EEG! I would have been "cooling my
heels" still, if I had not suggested some of this to
my neuro, well after the first appointment, and with
continuous seizing! My neurologist friend had been
observing my treatment here and had been feeding
me the suggestions for my neuro, or *nothing*
would have happened for me. When even this
technique came to a stop (my local neuro has me
on appointments many months apart, and will do
no more - and why would he, since this is "in my
head"?), my friend sent me a supply of Depakote.
One month in, soon after 1500mg/day, I suddenly
felt great, and free of all this nonsense. It "fell
apart" after six days, and was gone by the 9th,
but it felt great while it lasted. The insecurity
about mental state and ability to move reliably
was gone for a while. During the visit in another
state, while with him, both he and his associate
observed me in seizures, and called them that
(nurses had seen me in them here, but that info
was ignored by the neuros here...). When I was
taken off the Depakote (while on the 4-day EEG),
I seized and was returned immediately to it, but
things have not yet stabilized again...

Best current guess as to what happened to me:
a bad set of coincidences got me into trouble, not
a specific disease or syndrome. Pre-natal brain
damage set me up for sensitivity to some types of
assaults (and for minor seizures); sleep apnea
caused some more brain damage; the arrhythmia
plus treatment plus lengthy 02-deprived sleep for
weeks afterward got me into more trouble; catching
the apnea stopped that source of problems, but by
then, I was seizing as many as a dozen times a day.
Now, I'm back where I was a few months ago,
unable to go out of the house alone, drive, or even
walk reliably (complain. complain...;-), but at least
now, there is hope that with careful use of the
CPAP gear for the apnea, with determining a useful
dose and type of AED, and with careful taking of
it (including avoiding things that upset levels, or
trigger events), that I may get some of my life back.
Meanwhile, I don't walk near glass objects or near
high edges...;-)

--DR