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Re: Catamenial Seizures

On Jul 28, 6:36 pm, Sofia <pinkmonster2000REM...@ALLCAPSyahoo.com>
wrote:
> Janey Pooh wrote:
> > This won't COMPLETELY stop my seizure disorder, of course.  I still
> > have a lot of trouble with flashing on tv, flashy ads on the internet,
> > regular stuff like that, that usually brings on seizures.  I take
> > Tegretol and Clonazepam and probably will all my life.  But I didn't
> > have any extra seizures this month.
>
> Hi Janey, nice meeting you, but I'm afraid although quite a lot of
> women, including myself suffer from Catamenial seizures, several of us
> have all types of other seizures to join them, and therefore also need
> other meds to join them too.

Yeah, I have all different kinds of seizures too, but the Progesterone
seems to have calmed the worst Tonic Clonics that I've been having
during menstruation.
>
> I am also on tegretol like yourself combined with other meds, but my
> tonic-clonic's come mostly during my menstrual cycle, my tonic's come
> almost every time I have a bath because it's so bloody steamy and
> humid, and my absences, and Complex partials come several times a
> day, - aaaarrrggghhh!! :-(

Arrgghhhhh! is right!!!  I have Complex Partials and Simple Partials
of all sorts - incoherent talking, stumbly walking, crying seizures
sometimes and laughing seizures sometimes, totally confused states,
blank staring, etc.  I was having them several times a day as well for
a while, but it's calmed down to several times a month now.  But I was
having HUGE Tonic Clonics, sometimes five or six a day during my
period.

It sucks needing a Guardian when you're 45.  :o(  At one point my
husband decided the only way the doctor could help me was if he
invented some kind of seatbelt for the chair I'm sitting in right now,
cuz I kept falling out of it during seizures and bashing my head on
things around me.  I got a concussion twice, from my head banging the
chair leg over and over.

I hate those, cuz I was alone at the time and was so totally confused
when I 'came to', and I also had goose-eggs on my head.  Sorry to be
indelicate, but I pee myself sometimes too when this happens.
Arrggghhhhhh!!
>
> I have no idea what this drug could do for anybody like me, but thanks
> for the info' anyway!
>
> Sofie

Well, Sophie, the way it works is - all women have 'normal' levels of
Progesterone and Estrogen that raise and lower at certain times of the
month.  Estrogen is an Excitatory - meaning it excites the neurons in
our brains.  Progesterone does the opposite.  But when you're
ovulating and/or just before your period, your Progesterone levels
drop so that the 'normal' Estrogen levels can do their thang.

For us, unfortunately, that means we don't have enough Progesterone to
protect us from the Excitatory function of the Estrogen, so we have
seizures from our brains being over-excited.  If you ADD Progesterone,
it protects you against the effect of the Estrogen all month.  That's
what Depo Provera does.  You can't take it if you plan to become
pregnant in the near future, or if you're breast-feeding.  I'm well
past that stage.  ;o)

It doesn't protect against all the *other* things that cause our
various seizure problems.  But it's better than having all those extra
seizures at that time of month.

I'm taking Tegretol and Clonazepam daily, and always have Ativan on
hand too.  I also take a pill called Mirapex, which stops my Restless
Leg Syndrome.  I had more like Restless Body Syndrome - my leg or arm
wouldn't stop shaking or tapping, or just my head, or whatever.  It
happened a lot throughout the day and sometimes led to seizures.
Mirapex was originally designed for people with Parkinson's disease,
to stop their tremors, but it works like a hot damn on my RLS.  I hear
they're in third or fourth stage testing now to use it for epilepsy
sufferers too.

So far I've tried Dilantin, Topomax, Neurontin and a fourth I can't
remember right now (starts with an L) to take in addition to my
Tegretol to calm those Biggies, but so far the Progesterone has worked
the best.  And I had really bad reactions to those other four anyway.

I can't wait for the day I'm allowed to go for a walk alone or ride a
bike or ANYTHING.  I've been feeling like a shut-in, because I have so
many seizures it's not safe for me to be out on my own.

Until my aneurysm grew so large that it started putting so much
pressure on my brain, I was an out-going vibrant woman with a very
full life.  I'm a writer and journalist (WAS) and it's too hard to
deal with the day-to-day stress of all that.

So I sit here writing long, boring posts instead.  LOL

Thanks for getting back to me, Sofia.  It's nice to hear from someone
else who knows what Catamenial means.  LOL  Even my family doctor
didn't know, and my Neurologist and Epileptologist are over two hours
away (I live in a small town in Canada).  So this has been mostly
guesswork for me, based only on my own experiences and those I read
online.

Take GOOD Care,

Jane


>
> --
> Please visit my deviantART page:http://sofen.deviantart.com/

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