Howdy Mary!

Have you taken a look at my Maritime site?

I have a whole page of links dedicated to maritime employment and crewing
agencies!   ;->

Not lost.

Not overboard.

And if I said "YEAHEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEHHHHHHH!!!!!"
you'll get a good idea of the outcome of my exam :-)

He just turned 18, and although his language skills aren't too bad, he
struggles a lot with expressing abstractions and expressing how he
feels, both physically and emotionally.  "My head hurts." "I've got a
brain ache." "My bones are creaking." are pretty typical Daniel
statements.  As you can see, sometimes they take deciphering.

He only started really relating to his seizures in the past year,
although he's had them, except for a break from ages 6-13, since he was
two. Up until last year, he took at face value that he had had a
seizure when we told him he had one, and he would just say "I had a
seizure? I'm tired. Let me rest," but couldn't tell us what happened
from his own experience and honestly didn't seem interested.

But last summer he started saying, "I did NOT have a seizure!" or "My
ARMS had the seizure, *I* did not have the seizure!"  It seems that as
he's matured, he's started to think about his experience of the
seizures for the first time and he concluded that if he didn't remember
the seizure or only remembered how it began with his arms tremoring,
then it didn't happen.  From his perspective, his arms shook and then,
presto, he was in the nurse's office.  We had to have quite a long talk
about how seizures "erase your memory" (which is a gross
simplification, but the most he can understand), and he's finally
accepted that even if he doesn't remember the seizure, it still
happened.  I hadn't thought until he began to deny the seizures about
how terrifying it has to be to lose time like that and have everyone
but you be in on the reason why.

One big positive of this increased self awareness is that he's finally
able tell us when he's feeling a possible seizure coming on, for the
first time.  He is now able to say "I don't feel well," or "I was
shaking" or "I'm feeling cranky," any of which can indicate oncoming or
hidden seizure activity.  (We haven't quite gotten to "I think I'm
going to have a seizure," but we're working on it.) Because this kind
of reporting was new, it took a while to adjust to these being valid,
and not just
teen-boy-wanting-to-stay-home-and-watch-tv-instead-of-going-out kind of
comments, but we learned the hard way that when he said he didn't feel
well enough to do something, especially earlier this summer, he meant
it.  A few times, we did things when he said he didn't want to and he'd
end up having small seizures while we were out in public.  Now, if
Daniel says he doesn't feel well, we stay home.  (And we never go
anywhere without his Ativan, even if he is fine when we leave.)

Most of the time, his pre-seizure symptoms seem to be headaches and
sometimes something to do with his stomach.  (What, I'm not sure, since
the best we get from is a moan and "Oooooh, my stomach!!!!" followed by
more moaning.)  He rubs his head a lot, complains about his brain
hurting, and usually starts suggesting any ailment other than seizures.

We also suspect he may have some light sensitivity issues with
fluorescents.  He does not react to strobes, but he's had an unusual
number of seizures in the local Walmart and in the brightly lit kitchen
at his school, enough so that we now make him wear dark sunglasses and
a hat any time he is going to be in flickering light conditions
indoors.  It has seemed to help.

This has all become more of an issue this summer as his seizure
frequency went up dramatically in the past year, with a real peak this
summer.  The most worrisome thing was that his post-ictal periods were
REALLY long earlier this summer.  I mean like 5 and 7 1/2 hours long,
with him still not feeling well when he would finally wake up from
them, and they would wipe him out for the rest of the day even once he
woke up.

We are in the process of changing meds again, though, from topomax to
depakote, and so far (although it's only been three weeks), so good
(not so much as a tremor!),  so we're keeping out fingers crossed.  The
second week on the depakote he voluntarily went into a store for the
first time in MONTHS, because he felt well enough to deal with the
people and the lights, and he didn't seize.  This makes me hopeful, but
I'm not counting any chickens until he's been the depakote for a long
while since he has a history of doing well on a drug for the first
months and then suddenly degrading.

Sorry for the lengthy post.  I guess I needed to talk about it!  ANd
thank you for sharing what the inside headache experience was like.
That sounds a lot like what he acts is happening sometimes.  I have
migraines when it is going to storm, so I know with my own body what
that kind of aura feels like, and I sometimes think that Daniel's
seizure activity is like that as well.  

Jacque1in