Catamenial Seizures

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Janey Pooh - 27 Jul 2007 12:23 GMT

Hi All,

I'm new here, but not new to Usenet or Newsgroups. I suffer from a
seizure disorder brought on by having a Giant Repaired Aneurysm in my
head that's pressing on my Temporal Lobe. I've had it about 2 1/2
years now.

Anyway, my seizures were getting worse and worse, and I started
charting them to find out when they happened most, what might be
adding to the problem, etc. Lo and Beyold, about 90% of my seizures
were happening in the two or three days before my period and one or
two days into it. I was having 10 or more Tonic/Clonic seizures a
month in those five or six days, plus bunches of Complex Partials.

I did some reading and learned about "Catamenial Exacerbation", which
means that your seizures are made worse by hormones. It's very common
in women with seizure disorders, apparently.

I've read that some people tried birth control pills and they didn't
help. That's because birth control pills have Estrogen in them, and
Estrogen is what causes the excitation. So The Pill could actually
make things worse.

The *problem* is that Progesterone keeps our Estrogen levels "in
check" most of the time, but Progesterone lowers a few days before
your period and also during Ovulation, allowing the Estrogen to excite
your brain too much.

So I got my doctor to start me on Depo Provera last month. It's a
shot in the butt that lasts three months and is Pure Progesterone,
made from Soy. There's no Estrogen in it. It has the added advantage
in some women that they stop having periods while they're on it. Mine
stopped completely - a few days of spotting mid-month, but no sign of
it otherwise.

And no sign of seizures either!!!!

I can't believe it! I feel lke a free woman. I've been completely
housebound, basically, unless my husband or 23-year-old son is around,
because my doctors told me they didn't want me to go out without a
guardian. It had gotten that bad.

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.

I'd learned to tell when my period was coming because the seizures
would start happening. Now I don't have the period OR the seizures.
Oh Happy Day! :o)

Just thought I'd tell you guys, because I did a search on Catamenial
Seizures here and couldn't find a discussion about it since 2002.
Don't know if you've all discussed it more recently and already know
all this. But if you don't and you have this problem, you should look
into Depo Provera and Progesterone.

Feel free to mail me privately if you want more info about it or
anything. I'll check back here in a few days to see if there are any
responses or questions.

Take GOOD Care,

Jane

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Sofia - 29 Jul 2007 01:36 GMT

> 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.

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!! :-(

I have no idea what this drug could do for anybody like me, but thanks
for the info' anyway!

Sofie

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Janey Pooh - 29 Jul 2007 10:49 GMT

On Jul 28, 6:36 pm, Sofia <pinkmonster2000REM...@ALLCAPSyahoo.com>
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,
[quoted text clipped - 6 lines]
> 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

> --
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Sofia - 01 Aug 2007 01:59 GMT

> Arrgghhhhh! is right!!! I have Complex Partials and Simple Partials
> of all sorts - incoherent talking, stumbly walking, crying seizures
[quoted text clipped - 10 lines]
> things around me. I got a concussion twice, from my head banging the
> chair leg over and over.

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.

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.

> 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.

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! :-)

> 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
[quoted text clipped - 5 lines]
> they're in third or fourth stage testing now to use it for epilepsy
> sufferers too.

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 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.

Funny, we dream about the same things as we get older - I never got the
chance to ride a bike as my epilepsy hit me as a child of 9 so I always
wished I could. And I've had seizures in the middle of the high roads
of London so many times now whilst out on my own, hubby just refuses to
allow me out without himself by my side anymore - usually clutching his
arm in case of another fall again!

> 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

I know how you feel - I used to be a fantastic Mural Painter full of
life, and painting giant pix of primary and nursery school children
inside and outside of their school buildings. Climbing high
scaffolding in social clubs was my downfall though, and I left the job
for safety's sake, and haven't picked up a paintbrush since the my
mid-twenties. Now I sit around doing fanart with colouring pencils, and
replying online to other people whom have quite a lot in common with
myself! :-(

> 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.

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

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Janey Pooh - 01 Aug 2007 16:42 GMT

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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