HI-Looking for some insight & maybe support on PCOS and Epilepsy

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Hi,
I'm Cassandra and I've been diagnosed with epilepsy since age 4. I've been a bunch of different AEDs and am currently taking Keppra, Carbatrol and Topamax. After a clean MRI and some blood work recently my doctor referred me back to the GYN. My testosterone came back elevated. Keppra, thyroid and Carbatrol levels were fine but testosterone weren't. Everything I've been looking at kind of points to PCOS. Of course I don't want to diagnose myself, I'll leave that to him. But I'm getting freaked out since I've been married for 3 years and eventually we want kids. Just the fact that we might not have any is eating at me! I always try to look at the positive side but it's starting to get hard. Anyone on the same meds that have kids?
 

Cint

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Hi Cassandra,

I'm quite bit older than you, but I've had E for 30+ years now. My seizures started when I was in my 20's. I married and had two children. My daughter was/is healthy and is now on her own and my son grew up with asthma and was in and out of docs, as was I with my seizures.
When my seizures started, I started taking Dilantin, and that took care of my CPs until after my son was born. Then they became more intense. I noticed back then that my seizures were occurring during "that time of month", but back then the docs didn't think hormones and seizures were linked. But now that is a different story. They're saying there is a HUGE link between seizures and hormones. They now call those seizures catamenial seizures.
And since my seizures stem from my left temporal lobe, they say that can lead to hormonal problems. I ended up going thru an early menopause, with a lot of bleeding and horrible mood swings (still suffer from depression). And I still have occasional seizures and am taking Keppra and Topomax.
But don't let this scare you. They have done a lot of research and made lots of progress since then. If you work with you ob/gyn and your neurologist, things can go smoothly. Make sure everyone is on the same page.

And read here for more info:

http://www.epilepsy.com/information/women/all-women/hormones-and-epilepsy
Is there a connection between seizures and hormones?
Yes, sex hormones can influence the excitability of nerve cells in the brain and thus influence seizure control. Estrogen can excite brain cells and can make seizures more likely to happen. In contrast, natural progesterone breaks down into a substance that can inhibit or prevent seizures in some women.
http://www.epilepsy.com/information/women/all-women/polycystic-ovary-syndrome
How is PCOS related to epilepsy?
One explanation for the connection between PCOS and epilepsy is that women whose seizures begin in the left temporal lobe may be more likely to have certain hormonal abnormalities that prevent the follicles in the ovary from maturing. This leads to anovulation, the collection of cysts, and the release of more male hormones—all the criteria for a diagnosis of PCOS.

PCOS has another link to epilepsy: it may increase or worsen seizures. The hormonal abnormalities related to anovulation include a lack of progesterone, which the ovaries usually produce in the days after ovulation. Progesterone has antiseizure and mood-stabilizing properties. The ovaries of women with PCOS, on the other hand, continue to produce estrogen, which promotes seizures and anxiety.
 
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Thank you for all the info Cint. You've given me some hope. My neurologist has diagnosed me with catamenial seizures. I keep track of them and they are always worst around that time of the month. I'll be seeing my GYN and neuro about the possible PCOS and epilepsy next week. I'm just a little scared to start any hormone pills or anything they might prescribe because I have a steady job, just got accepted into a 2 year college program and still have my license. I know how easy all those things can be ripped from epileptics because I've been suspended from college before due to becoming tolerant to my AEDs. But I gotta try. Like you said, don't let this stuff scare me. Thanks for sharing those links with me.
 
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