Re: Catamenial Seizures

Hi Again Sofie,
>
> Oooh, you really do get them badly don't you! I mean I get most of those
> you described, but at least I don't sit seatbelted onto my chair! I
> usually slouch around on my settee most of the day surrounded with my
> soft cuddly toys and hubby sitting next to me, and only switch to my
> computer later on in the evening - with hubby never too far behind.

Well, they haven't gone so far as to *actually* seatbelt me to my
chair, but all hard objects around me have either been moved or
there's pillows all around the floor - but only at certain times of
the month.  The rest of the time I can usually *catch* myslef before
anything drastic happens and go sit in my comfy lazyboy, take some
Ativan and/or Clonazepam and try to relax.  Sometimes I can stop the
bad "waking seizures" I get that way.  Usually not though.  I kinda
just have to wait them out.
>
> I hope you don't mind, but I also just had to show my hubby, Graham your
> post - just to prove to him that he wasn't the only man in the entire
> world that was in exactly the same situation and caring for a disabled
> woman in her 40's.

Sure.  no problem.  The more people understand about this wacky
problem, the better <IMO>.
>  >
> That's nice - I think this means if I ask my neuro' for a burst of this
> drug for just before and during my period, which is the times my
> hormones usually start going haywire, then it should either calm them
> down... or I'll lose my eccentric funny personality and go completely
> dull & boring! :-)

Unfortunately, I don't think it works that way.  I got a shot in the
butt that lasts three months, and then I have to get another one.
Actually, the doc said he was going to give me one every two months to
start with.  It increases your amount of Progesterone *throughout*
that three months, time released.

I think there are Progesterone creams and stuff and there *might* be
Progesterone that you can take only at certain times of the month, but
everything I've read says it's a long-term kinda thing.

I don't htink it would make you lose your eccentric funny personality
though.  I don't seem to have lost mine.  It's getting worse - or
should I say better?  LOL
>
> Ouch sounds like you're having a violent seizure while you're still
> conscious - something I hope never to experience! Anyway I do hope the
> Mirapex is working for you, or at least cutting those awful tremors
> down a little. I don't know much about them myself, but I'm sure if you
> stick with us, there's bound to be somebody on the newsgroup who does!

I have that kind quite often, actually - I'm *sort of* conscious the
whole time, but my whole body shakes violently and I can't communicate
at all, except to moan or mumble or grunt or whatever.  It *is* quite
scary - even after having what seems like 100s of them, I still feel
totally scared and alone and basically whacked out while it's
happening, and for a while afterwards.  I don't know what happened,
where I am sometimes, what's going on . . .

But like I said, I usually just have to kind of wait it out.  I take
Ativan to calm myself down afterwards, and usually sleep for quite a
while.  It also HURTS, cuz I shake pretty violently when it happens.
> >
> LOL! Well, maybe it's just as well I live across the pond in England, UK
> then, so you'll never actually have to meet me!! :-)
>
> Sofie

Or you me, Sofie.  ROFL  What a pair we would be out having coffee
together, with our cushions all around us and our bike helmets on in
case we fell and hit the floor.  We could cause some mischief, I'm
sure!!  LOL

I'm thinking of writing Medic Alert on my forehead!  LOL

Take GOOD Care,

Jane
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