Women with Epilepsy

Information

This is a forum for women suffering from epilepsy who can share information and experiences re: pregnancy, research, drugs, and family planning.

Location: Philadelphia, PA
Members: 233
Latest Activity: May 6

24 members like this

Discussion Forum

Epilepsy, Pregnancy & TTC

Started by Jeanette Savo. Last reply by Jeanette Savo May 2. 1 Reply 0 Likes

Hi! I love this group and have learned so much! I've noticed that a lot of us have questions (or experiences) about being pregnant, TTC, breastfeeding anything mommy related, so I started a group:…Continue

Scared to Become Pregnant

Started by Mary Kay. Last reply by Jeanette Savo May 2. 8 Replies 0 Likes

Hello,I have 3 children already (before I started having seizures). I recently got married, and my husband and I really want to have a child together. I am so ridiculously scared. I take Vimpat, and…Continue

New Dr?

Started by Jeanette Savo. Last reply by Jeanette Savo May 1. 2 Replies 0 Likes

I feel like I need a new Dr. I recently left my Dr of about 15 years because he was more of a pediatric neuro and since I'm trying to start a family I wanted a Dr that specialized in Epilepsy and…Continue

Ovulation & Menstrual cycles!!!

Started by Lizzie Markel. Last reply by Lizzie Markel May 1. 12 Replies 0 Likes

Really having a bad day! Seizures and auras have been lingering all day. All because this stupid "ovulation." I hate being a female for that one week lol! It is by far the worst week for me I have…Continue

View All

Comment Wall

Comment

You need to be a member of Women with Epilepsy to add comments!

Comment by Rachel on May 2, 2013 at 12:08am: K.L. - I take the generic form of Zonegran which is Zonisimide. The generic worked better for me. I used to take trileptal and lamictal. They did not work. I now take Zonisimide 2x in the morning and 2x in the evening. I also take Zarontin 2x in the morning and 1x in the afternoon. I also had weird sleep problems at first. They altered my meds to adjust accordingly. The loss of appetite is actually a side effect...and a good one (if you want to loose weight). Then, I was pretty much doing good. I am now 3 yrs seizure free!

Comment by Katrin Golightly on January 23, 2013 at 3:49pm: they say lamictal, tegretol and one other one, but i know those are two of them. Check out my gf site as she is blogging about her becoming pregnant with epilepsy. partiallycomplexblog.blogspot.com

Comment by Mary Kay on January 23, 2013 at 8:00am: What is the safest AED to be on if you plan on becoming pregnant?

Comment by Rebecca Smallwood on December 14, 2012 at 4:35pm: I had a neurologist that changed my meds everytime a new one came out and I am gonna tell everyone now DO NOT GO TO HIM BECAUSE NOW HE IS THE HEAD OF NEUROLOGY SOMEWHERE so do not go to DR.DANIEL HOWLEY

Comment by K.L. on December 13, 2012 at 4:15pm: Anyone taking Zonegran and had good success controlling their seizures with it?? I just started taking it, I am only on 200mg, so far had some trouble sleeping and some decrease appetite my doc is going to take me off trileptal i am going to be on zonegran and keppra. I have had two seizures so far on the zonegran. and wondering what peoples successes rates were coz i have heard it works really well and am excited about trying it. And pray it works and am also trying to get prego. Thanks for any feedback. :) Best wishes to all. E is a storm like no other sometimes :(

Comment by monyette on December 10, 2012 at 6:09pm: i am 38 i just started having them last year anc i can not drive or be byself at all ant being to work yet is killing me bad have anyone been able to get finecaln help

Comment by Curly on December 10, 2012 at 6:04pm: I developed mine at the age of 8 and not hit my head either. We never know what causes some of theh "unfortunate" things to happen. Hope you are getting along fine with meds.

Comment by K.L. on November 29, 2012 at 11:38am: Anyone with genetic seizures been pregnant and passed it on to your baby? I got seizures from my moms side of the family and concerned I may be a carrier and pass it on to my child Lord willing I am able to get pregnant my Neuro seems to think that I wont being it is far removed.

Comment by K.L. on November 17, 2012 at 8:29pm: me and my husband are trying to get prego and i am not able to drive coz of my seizures has anyone had this issue not being able to drive, with children dependent upon you because of seizures?? I havent been able to drive since about 2004 I am ok with it i have wonderful parents and husband who is willing to transport me to work and everything but when it comes to children bottom line is i will just need to one day, and my neuro knows that, it is so hard to find control i have had surgery and VNS therapy and been on every drug out there, yet the storm rages on in my brain.....

Comment by K.L. on November 8, 2012 at 4:16pm: oh my i was on 3000mg on keppra then dropped it by 750 to try and and see how it worked coz that was the max and i didnt think the keppra was helping you know maybe i was becoming immune to it coz i have been on it 10 years. but i also take 600 mgs of trileptal, just so much medicine. i had brain surgery for my seizures last year, that was rough, it helped maybe 30%. then i got blood clots in my lungs after the surgery, shouldnt have taken my BC while i was having the surgery. HAHA, now when i get prego i will have to taken heparin shots. God bless, having epilepsy is trying for sure. Can you drive? I havent been able to drive since about 2005. Probably will never be able to get behind the wheel again. But i remain hopeful. :) miracles can happen.