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That is exactly what I meant Meetz. Sorry to confuse the conversation.

I was just never told about catamenial seizures. I had to go to my favorite place, The University of Google, to find the answers. We no longer have that neurologist. We have one at USC that is a specialist in hormonal seizures. Rebecca uses a bio identical progesterone. Now we are working to fine tune the dose.

Yet I am working past that with my personal research, and finding out why women would have an imbalance in the first place. So far, I am concentrating on the adrenal glands and the liver. You can search the forum and find some info.

Hi Robin,
I'm sorry I didn't understand your other post. Anyway, what's the link to the forum you are doing your study on? Is it this forum or is it the link you have at the end of your posts? I'm sorry for my stupidity. I'm not sure if I still feel uneasy about talking about this so freely or what, but you guys here are all wonderful.
 
Don't worry I feel uneasy talking freely as well, I am hoping it will become easier over time, but talking to people on CWE is definitely helping my confidence. I really surprised myself when I joined.
 
Don't worry I feel uneasy talking freely as well, I am hoping it will become easier over time, but talking to people on CWE is definitely helping my confidence. I really surprised myself when I joined.


The people on here are great, and it's like an online support group. I don't have a group anywhere around me. Four hours away is the closest and I can't trust my car to go four hours. It's starting to see it's days and the same with my husband's car.
 
Hi Michelle, welcome to the forum. :hello:

You can read about our experience with having children in spite of my wife's epilepsy (and the history thereof in her family) here: Stacy's Story

There are some very serious potential side effects of many AEDs on babies and you will need to consider whether you are willing to take on the responsibility of handling a child who might incur birth defects.

I'd highly recommend trying EEG neurofeedback, diets or ideally both to try and gain better seizure control and hopefully eliminate some of the drugs before getting pregnant, but I'm all about minimizing risk.
 
Hi Michelle, welcome to the forum. :hello:


There are some very serious potential side effects of many AEDs on babies and you will need to consider whether you are willing to take on the responsibility of handling a child who might incur birth defects.

I'd highly recommend trying EEG neurofeedback, diets or ideally both to try and gain better seizure control and hopefully eliminate some of the drugs before getting pregnant, but I'm all about minimizing risk.

Bernard,
Thank you for your post. I'm all about minimizing risk too. I do want to find out about alternative treatments, but then I was just thinking of talking to our doctor and seeing about him putting me on another medicine while trying to take me off the other three. This medicine is not known to cause birth defects, like the medications I'm on are known to. This medicine is supposed to treat both kinds of seizures that I have.
 
Welcome Michelle

:cheers:

Though I don't have much experience with medication/pregnancy issues, there are plenty of other members here that can help you. This must be such a difficult choice!

One of our daughters was born in my pre-epilepsy life and two after. We have never found anything that indicated my dilantin would cause issues as a father, though it always worried me.

I hope you enjoy our home. Have a seat and I'll get some coffee.

:cheers:
 
Ok, I'll answer this post first, then go back and cover something I missed. :roflmao:

I suppose in the grand scheme of things, it IS better that I have them in my sleep cycle. It's not as embarrassing, that much is true. Doesn't make mine any less dangerous, as I tend to break things, including my own bones when I have them. The neuro is comfortable with me driving because mine are strictly in my sleep cycle. When I DO have one, I automatically take myself off the road for months, and he knows it. He doesn't even have to ask. I just do it. Because I regress and turn into a 2 year old. There's no way I could drive. And if I am too tired, I flat out refuse to drive. I hitch a ride with someone else, and go back and get my vehicle the next day. I just won't take the risk.

HOWEVER, I DID have ONE during the daytime.....it was because of a screwed up sleep cycle....I'd only slept 2 hours in 48 hours, and I was PREGNANT, with my first child (7 months), catering my grandparents 50th wedding anniversary/family reunion. Big mess that was. OY. :noevil::ponder:

In terms of sleeping..........hmmmm. Well, it wasn't too hard to sleep, until recently, when I started having some twitches that started waking me up. And, I had something that I can only call a "jello wave" one night. That freaked me out so badly, I got up, put a pillow on the floor, and slept there, waiting. I just recently (last month/beginning of this month) finished a 4 day portable EEG...and they found activity on it. OF COURSE. So, I've been put on Klonopin. Which I was on before, but went off of because I didn't like it... in combination with Lamictal and Dilantin. Now, we'll see how it goes with the Carbatrol and Topamax. Now, with the Klonopin, and the help of melatonin, I actually SLEEP. It's sooooo COOL. You have NO IDEA. Now, I may be adding 5-HTP to the mix so that I can get my dreams back....but I have a cyst in my pineal gland, so I have some research to do about that first...



I was born and raised an Italian Roman Catholic........but I have been a bad one as of late. HOWEVER, I am married, WITH THREE KIDS. They're 22, 20 and 19. (If you wanna share the college tuition, feel free. I'll be happy too.) And I've had E all my life except.....well, I was diagnosed at 13 months.

Originally, I was told I was sterile from my meds (YEAH RIGHT!) Imagine, when 3 months into being married, and using NOTHING, I end up PREGNANT. UH HUH. Hubby, who's also a German Roman Catholic, actually brought up the idea of an abortion because of the dangers to me. I said no. After the first, Abby, I went on 2 have 2 boys......using THREE methods of birth control each time. That's what the meds did. I even used barriers, too. No help. Sooooooo, be careful.

Are my kids OK? Well, Abby has messed up fingernails and toenails from HYDANTOINISM......from the Dilantin I was on. Matt, the oldest boy, had a slight heart murmur, some asthma and that was it, other than an injury from a tornado. Andrew, the youngest...........Hmmmmm. Well, he's had a multitude of problems. I can't attribute them to my meds, either. Possibly one.....It was thought at one point that he had spina bifida (he doesn't) and that would have been from my meds. But all of his other issues were just .... there. His autism issues........I suspect those were from the shots that he got. Can't prove it though.


You have a LOT more...oh what's the word I want...ways to access information now than I did at your age. There are even ways to track during pregnancy what goes on, and be part of register for a particular drug now, especially for AED's. I know it's scary. I do understand where you're coming from. But this is a decision only you can make for yourself. I wish you luck.

Meetz
:rock:
 
Hi Michelle! Welcome to CWE. :) As you can see, a friendly group. So feel free to ask questions, vent, or just give us your two cents worth. :) Like you, I have grand mals. Unlike you, I'm only on one med now....used to be on 2. My hubby and I have been trying to have children for several years now. I don't know that it will happen....but if it does great! And if not, well, there's always adoption. My hubby knew about this before we got married....so he was always willing to adopt if we couldn't have any of our own. Good luck talking to the priest. :)
 
Thank you all for your replies. I will let you know what we decide to do after we talk to our priest which will be in a couple of weeks. You guys are a very friendly group of people. Thank you for being so welcoming to me.
 
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