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PeggyS

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Hi, My name is Peggy and I'm new here. I'm 45 and I've had epilepsy (complex partials stemming from the temporal lobe region) since I was 15. They are and have always been uncontrolled. They are also catamenial. I've been on 20 or more medicines and none have completely controlled my seizures. One of them actually turned my complex partials into gran mals. That was keppra. :cry: Needless to say, I wasn't on that one long. I'm looking forward to having another place I can come to meet others that can relate to what I go through.

Peggy
 
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Hi Peggy, welcome to the forum. :hello:

Stacy's seizure patterns have changed drastically over the years. Lately, she has been getting grand mal seizure clusters that appear to be catamenial (tied to her period). Since she started this (and upped her Dilantin and maintained her neurofeedback sessions) she hasn't had seizure clusters (or single TCs) since late August.
 
:hello: Peggy!

Welcome to CWE and welcome to the Club!
I'm in the same boat as you are in. But at
least for me they've found a weirdness,
Zonegran (a conjunction AED) ended up
being a Primary AED and with Clonazepam
(generic for Klonopin) for the side-kick,
and with Folic Acid.. and it worked.
Then they were focusing on the menses
cycle, until June 28th Cop pursuit that
resulted us being the 2nd victims (and
the end of the pursuit), which caused
a whole new set of problems. *sigh*.
Makes you wonder if it ever ends?

But the only thing we can do is keep
HOPING and keep PRESSING FORWARD
that one day they will find something!
 
Hi Peggy ~ Welcome to this great board.
 
Hi Peggy,
My daughter is the one with seizures, and they use to be catamenial in nature. We are using a bio-identical progesterone that seems to be doing the trick. She still has a couple TC seizures a month, but I am now wondering if they might be related to the increase in her meds. Waiting and watching. She started having seizures at the age of 14.
 
Thanks for the welcome and the info

Thanks for the welcome and the info. I'm always looking for new ideas to present to my dr. I want to try the natural progesterone, but she wants me to do it through a research program because I don't have insurance. So....I'm waiting. We'll see what happens. I'll keep you posted if I hear anything. I have to go for now, but I'll probably be back in the next few days.

Peggy
 
I looked into the research program through USC, but was told my daughter at 15 was too young. I hope you find something. I use it too, as it helps with my migraines.
 
PeggyS said:
... I'm always looking for new ideas to present to my dr. I want to try the natural progesterone, ...
Click to expand...

You might ask your doc about trying pregnenolone. It's a building block that your body uses to make progesterone and DHEA. It's available at most vitamin shops (no prescription required).
 
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Welcome Peggy

Glad you found our site, ther are plenty of helpful and supportive folks here. Make yourself at home!
 
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