Bad week.

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CyberCafe - 07 Dec 2004 16:34 GMT

I'm pretty much recovered from a bad week and a half (don't know if they
were simple or complex partials). I forgot how bad it feels. Not just
the seizures, but all the in-between sensations that were really quite
uncomfortable. Of course, nobody can see my seizures, so I suppose I
looked just fine and normal to everyone else.

I think I'll be on people's case even more because of this reminder. We
have no idea what the person is feeling and how much of the in-between
stuff is present, how chronic it is, how intense it is, and everything
else. I just don't understand parents who are only concerned about the
actual full-blown seizure but seem to be oblivious to all the chronic
stuff that might be present. If there is stuff going on in-between
seizures and the parents have decided not to treat because of infrequent
full-blown seizures, that is like torture in my opinion.

Barb

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gaross - 07 Dec 2004 17:08 GMT

> I'm pretty much recovered from a bad week and a half (don't know if they
> were simple or complex partials). I forgot how bad it feels. Not just
> the seizures, but all the in-between sensations that were really quite
> uncomfortable. Of course, nobody can see my seizures, so I suppose I
> looked just fine and normal to everyone else.

** I was sorry to hear that. I thought you were just out shopping for our
'goodies' ... :-> G./

> I think I'll be on people's case even more because of this reminder. We
> have no idea what the person is feeling and how much of the in-between
[quoted text clipped - 5 lines]
> full-blown seizures, that is like torture in my opinion.
> Barb

** I remember quite a few times when I used to get auras at places I didn't
*want them.
Lisa-1 used to say some time ago, it was like a noisy younger sibling we
had to take along with us, and we Never knew when they're going to act up or
try to embarrass us. But it Often happened without warning or at places
where we'd least want them to act up. I hope your 'sibling' behaves more
for you.

Were any of your's ever aggravated by weather? (Low air pressure as
snow or rain moved in.) As I got closer to more control I found I could
'predict' the weather just by the auras I got even before the forecast was
on the radio. Another place that seemed to aggravate 'my' type was heated
shopping centres or large crowds around me. I'd often have to go outside
(even in cold weather) to clear the dizzy, or perspiring sensation, that
would sometimes warn of a possible onset. Even as I got closer to full
control and they *didn't progress to a full Complex Partial, the 'aura' or
discomfort was enough to strike fear into what had been an otherwise decent
day.
I hope your's clear up for you. /G.

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Mary Fisher - 07 Dec 2004 17:34 GMT

>> I'm pretty much recovered from a bad week and a half (don't know if they
>> were simple or complex partials). I forgot how bad it feels. Not just
[quoted text clipped - 4 lines]
> ** I was sorry to hear that. I thought you were just out shopping for our
> 'goodies' ... :-> G./

Yes, I was sorry to hear it too.

Please don't think that nobody cares, we do and we're always here.

Hugs,

Mary

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turbinado - 08 Dec 2004 00:03 GMT

> >> I'm pretty much recovered from a bad week and a half (don't know if they
> >> were simple or complex partials). I forgot how bad it feels. Not just
[quoted text clipped - 12 lines]
>
> Mary

Here's hoping next week will be better! :)

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CyberCafe - 08 Dec 2004 01:58 GMT

Thanks guys for the responses. It really makes me feel better
emotionally/mentally just to know you understand; all of you know what it
feels like.

They did a blood level. It was down, so they upped my Dilantin 100 mg, and
I have a couple of doctor's appointments before Christmas to see what's
going on, if anything.. This whole thing seemed to coincide with the refill
right before the one I'm on now. It felt like I wasn't taking Dilantin at
all. As soon as I started taking a fresh refill, I started getting better
even without the extra 100 mg. Very fishy to me.

Gaross, I did get to do some XMas shopping today with my husband. I also
ordered some stuff through Amazon, first time ever, and if everything comes
and nothing goes wrong, I want to do more online shopping.

Love you all!

Barb

> I'm pretty much recovered from a bad week and a half (don't know if they
> were simple or complex partials). I forgot how bad it feels. Not just
[quoted text clipped - 12 lines]
>
> Barb

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Satch - 12 Dec 2004 09:09 GMT

> Gaross, I did get to do some XMas shopping today with my husband. I also
> ordered some stuff through Amazon, first time ever, and if everything
> comes
> and nothing goes wrong, I want to do more online shopping.

Amazon is quite good. They ship to The Netherlands as well as opposed to
loads of other US webwinkels. Then when I ordered some books / CD's (I order
lots of stuff through the web; I even bought myself a washing machine when I
broke my arm but that was not on Amazon; just a fancy website here in The
Netherlands), the conversion rates dollar / euro were pretty favorable to my
part of the ocean. You find books that are not (yet) there in our local book
stores or maybe I am too lazy and I did not search hard enough -too cold to
go outside!

> > I think I'll be on people's case even more because of this reminder. We
> > have no idea what the person is feeling and how much of the in-between
[quoted text clipped - 4 lines]
> > seizures and the parents have decided not to treat because of infrequent
> > full-blown seizures, that is like torture in my opinion.

I believe we had a discussion about this topic a couple of weeks ago:
parents asking us in this newsgroup whether their child "really" needs to be
treated. Another good argument to do so (other then seizures might get
worse, etc.). So, good catch!

Signature

Thanks.

Marco
The Netherlands

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CyberCafe - 17 Dec 2004 00:20 GMT

> > Gaross, I did get to do some XMas shopping today with my husband. I also
> > ordered some stuff through Amazon, first time ever, and if everything
[quoted text clipped - 3 lines]
> Amazon is quite good. They ship to The Netherlands as well as opposed to
> loads of other US webwinkels.

How long does it take to get your stuff, Marco?

> Then when I ordered some books / CD's (I order
> lots of stuff through the web; I even bought myself a washing machine when I
[quoted text clipped - 3 lines]
> stores or maybe I am too lazy and I did not search hard enough -too cold to
> go outside!

Everything came and pretty quickly too. I'm impressed. I'm going to buy
through Amazon next year again. Sure is nice shopping in a nice warm home and
no traffic, no gas expense, no parking nightmares, no crowds. They have a much
bigger selection of things than we have locally.

Barb

> > > I think I'll be on people's case even more because of this reminder. We
> > > have no idea what the person is feeling and how much of the in-between
[quoted text clipped - 15 lines]
> Marco
> The Netherlands

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Satch - 17 Dec 2004 05:06 GMT

> How long does it take to get your stuff, Marco?

Two weeks and sometimes later depending on what I ordered. I usually order
something that is not "hot" which means they will have to order it as well.
For instance, I "preordered" a book with the "how to play Joe Satriani's new
CD" guitar book and that book isn't even produced yet so I have been waiting
for ages now. LOL

Signature

Thanks.

Marco
The Netherlands

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Satch - 12 Dec 2004 09:15 GMT

I am sorry to hear this -hopefully you feel better soon or you are already
feeling better soon! I guess the testing machines in the Neuro's office are
starting up again and you are currently waiting for the outcome with results
of the testing of what might have caused this? That period sucks as well but
remember there will always be a next week / next month when everything calms
down again.

Best to you.

Signature

Thanks.

Marco
The Netherlands

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CyberCafe - 17 Dec 2004 00:25 GMT

> > I'm pretty much recovered from a bad week and a half (don't know if they
> > were simple or complex partials). I forgot how bad it feels. Not just
[quoted text clipped - 10 lines]
>
> Best to you.

How sweet of you. My Dilantin level was a little low, so they upped it 100 mg,
but I had to reduce the amount back to what I had been taking after I felt
better or my prescription would run out.. I have an appointment right before
Christmas in the epilepsy center. Everything is back to normal except I'm still
startling way too much.

Barb

> --
> Thanks.
>
> Marco
> The Netherlands

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