Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Catamenial Epilepsy -- Birth Control?
Mon, 01/30/2017 - 16:29Topic: Women With Epilepsy
Hey guys! I've had epilepsy for a while now, but I am super new to these forums. This has probably been brought up before but I wasn't sure how to find it.
My seizures were usually around day 26-28 of my cycle. I am currently on Lamictal XR 800mg/day with a side of Progesterone 600mg/day. However, nothing has worked. As time goes on, my seizures have worsened and they are more frequent. It was recommended to me to try a type of birth control that will eliminate my period as a whole.
Has anyone tried this out? Has it been successful? I am not against it in any way whatsoever, but I would really love any feedback/information from you guys!
Hey, I got my period when I
Submitted by m.gillman on Thu, 2017-03-16 - 20:36
Hey, I got my period when I was roughly 16 and my first big seizure was around the same age 15/16. I started on Epilim, then Keppra, am now on Topamax, Lamictal, and Tegretol. I have complex partial seizures diagnosed from the temporal lobe. I have my seizures in clusters and they usually occur from day 22-25 of my cycle. If you google hormone graph/chart then you can see that around this time progesterone dips in the body and this is what we think is a trigger, not a cause but the trigger. I have tried taking progesterone-only-pills that are meant for contraception to see if they would stop the seizures because they would be keeping my levels of progesterone constant, however, this didn't work. When I did some research the oral contraceptives which are synthetic aren't absorbed very well in the body which is also affected by the AEDs affecting their metabolism. I am going to try on the first day of my next cycle, so the first day of bleeding, the combined oral contraceptive, but at a higher level that what is normally prescribed to people without epilepsy to keep both hormones constant both estrogen and progesterone. If this doesn't work I will keep researching and talking to my neurologist and hopefully find something that works. Download and app/keep a diary of when your period is occurring as well as your seizures. There is apps I use for both. I have an app I use just for seizures which is called 'My Simple Seizure Diary', and a really good app to put all your period/bleeding details in is called 'Clue'. You can add seizure info as a tag. It will show you what day of your cycle you are on/when you ovulate/how heavy your bleeding is etc which will be helpful when you're visiting your GP etc. It may sound a bit OCD but I've also got an excel page where I have my seizures counted for each year and month. Eg. 2017: Jan-1, Feb-2 etc. so I can compare then with other years and see if different meds were actually working.