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.
Daughter w/ catamenial seizures
Mon, 04/05/2010 - 12:51Good morning all. I have been having seizure since I was about 4 or 5, but because there are a lot of quack doctors out there I was not diagnosed until I was 20.
I recently overheard something that my 13 year old daughter was saying. She mentioned that she has been having a lot of deja vues. I began to ask her questions about these deja vues and she described to a tee one of my partial seizures (auras) Turns out she has been having them for about a year now. It started around the time she got her period.
She is scared about it, but I think she sees that w/ medication I am able to function like a 'normal' person. I am so upset about this. I can't help but think what is her life going to be like? What challenges will she face because of this... I told my husband that I will finally know how he felt when I started driving again.
It seems that when something happens to me its no big deal, but it is a huge deal when it happens to my child. They're learning about ailments in class and her teacher said to the whole class that epilepsy is a disease... I can handle it and I can handle ignorant people telling me I have brain damage, but I'm not so sure how well she will handle it....
I've been so calm about it on the outside for her, but I am just screaming on the inside.
I don't know what to say to her to reassure her that all is going to be okay.
Re: Daughter w/ catamenial seizures
Submitted by GodivaGirl on Sun, 2010-04-25 - 20:54
Hi There, I've been epileptic since age 5. Most recently all triggers are under control except hormonal. I'm 35 & it has been that way for 5 yrs. I can pretty much call it every month when my period will happen. Within 1-2 days before I go through absence seizures. It sucks, but is what it is for me. Not to say there are not medical strategies that can't be tried. Your daughter is 13, so this isn't something that you or your husband want to think of but for awhile it did work for me (stress is a major trigger...so medicine & treatment changed up). Anyways, for awhile I was on my seizure medicine & birth control pills, then during the "7 days off", I'd double up on the seizure meds. Doesn't sound like your daughter is as severe or anything, so perhaps even just birth control pills to regulate things hormonally and some seizure meds during the "7 days off" and all of the sudden life comes back to what it should be. The only difference, one extra pill all month, and conversations that often times parents don't want to have about being on the pill at age 13 may happen. It was a strategy that treated that for me well when I was 25-29. Problem was my doctor added another seizure med to help with stress & for me Keppra & Ortho TriCyclin I was on together made me feel sick. Seizure meds always take priority. I gave up finding a birth control pill that didn't make me feel sick. Lately though, I'm thinking of talking to my doctor about putting something like that in place, now that I'm used to Keppra & hormonal is my only trigger left to manage. Hope this helps a bit. ~GG