Why Add Your Story?

This section of the site is for women with epilepsy (WWE) who want to share their stories about having seizures/epilepsy and being pregnant/giving birth. The European Registry for Antiepileptic Drugs and Pregnancy (EURAP) study published in 2006 showed that about two-thirds of WWE (total pregnancies: 1,956) experienced no change in seizure frequency during pregnancy. Of the remaining WWE, 16% of them experienced a decrease in seizure activity during pregnancy and 17% experienced an increase. Similar results were found in other WWE pregnancy registries. One of the conclusions of the Australian registry showed that the best predictor for seizures during pregnancy was if the WWE had been seizure-free during the year prior to becoming pregnant. However, there are many factors that can contribute to the potentiality of having increased seizures during pregnancy. This topic still lacks a considerable amount of research and understanding.

I am not a scientist. I am a WWE that has already experienced pregnancy and childbirth. I couldn't help but to wonder what other WWE had experienced. I think the details of our experiences offer perspective. I recall reading forums about WWE who took Tegretol when they were pregnant to see what they were saying about their children's health, specifically, if their children had any physical or developmental problems. I read a variety of stories and afterwards I felt more relaxed.

It is often true that forums attract those who have more problems than less. WWE who either stayed the same as they were during pre-pregnancy or did not experience an increase of seizure/epilepsy problems during pregnancy are equally important for us to know about, as those who did experience such problems. There is a lot of information in the details such as age, seizure type similarities/differences, and medication. Knowing these details about other WWE can sometimes differentiate the difference between offering perspective --good or bad,-- and sometimes hope.

I am a believer that knowledge is power and that is why I want to edit a book written by WWE and their experiences with pregnancy and childbirth. I think there is a lot of value in the details of our collective stories about having epilepsy and pregnancy to offer both perspective and peace of mind.

Therefore, I am collecting written personal accounts by women with epilepsy (WWE) and their experience with pregnancy and childbirth. Click here to see an example of the type of story I am interested in collecting.

Areas of particular interest include (but not exclusive):

• What happen to WWE who had epilepsy during multiple pregnancies?
• During all of your pregnancies did your seizures/epilepsy remain the same as pre-pregnancy, or increase or decrease during pregnancy?
• Did you have an increase in seizure activity/epilepsy-related events during one pregnancy, but not during other pregnancies?
• What changes occurred?
• Did you experience new symptoms?
• If so, what happen differently?
• Did your epilepsy-related events/seizures improve or get worse?
• How long did it take to improve?
• What did you do differently?
• What medication changes did you make and at which point during pregnancy?
• Were there any negative outcomes on the fetus/baby?
• Did you try any alternative treatments while pregnant?
• If so, what worked and what didn't work?

What will happen to your story once sent to Women With Epilepsy.Org?

• Depending on how many stories I receive, depends on how they stories will be published.
• If you want anonymity, please do not use you real name.
• I am collecting stories through 2010.

Please send your stories to info@womenwithepilepsy.org, or email if you have questions.

Thank you for your interest and participation.