Community Forum Archive

Hormones and epilepsy

Hi everyone! I didn't know how to edit my previous post since I made a mistake on some dates I had mentioned. My epilepsy journey is kind of long and complicated. It all started at 13 years old (less than a year after starting my period) when I would lose my memory for a day and was aware of my name, surroundings but would forget very short term things like the name of someone I just met. I went to a neurologist and was diagnosed with epilepsy and prescribed Topomax. The medication gave me twitches and jerks and wasn't helping whatsoever. I was disgnosed with juvenile myclonic epilepsy. After a year of taking that I was prescribed Keppra. It seemed to be helping a lot better except for when I had my seizures it was grand mal without any twitching. My seizure types changed for the worse. Some of my trigger seizures include lack of sleep and very loud music. After seeing an herbalist I decided to take the natural route and I had never felt better in my life. With the help of herbs and diet changes I was able to reduce my Keppra medication from 1250 to 500 mg and was seizures free for 22 months. About 2 months ago I underwent surgery to remove an ovarian cyst and experienced 3 seizures in a matter of 45 days, something that never happened. All my seizures took place either on my period or when I was ovulating. My surgeon warned me that my hormones were going to be wack until a few cycles. I'm starting to think my seizures are hormonal and due to hormonal imbalances. Have any of you ladies experienced this? Does anyone have success battling this? Any input is appreciated!

Comments

I have type two catamenial

Submitted by Trillian on Thu, 2017-11-09 - 16:59
I have type two catamenial epilepsy. I was diagnosed aged 17, but my seizures stopped aged 20, roughly the same time I had a progesterin implant for contraception. I always thought they might be linked, so she’s 34, thinking of starting a family, I saw an obstetric neurologist who assured me there was no correlation. I had the implant removed, three weeks later the first of a long line of tonic clonic seizures. Always 12-14 days before my completely irregular periods. My neurologist (make) at the time actually told me I had NEAD because I was petrified of becoming a mother, but I knew it wasn’t. I found a different nhs neurologist who prescribed keppra and I’m now 1 year seizure free. Maybe progesterone of some type might help. I know there are some natural sources.

I have type two catamenial

Submitted by Trillian on Thu, 2017-11-09 - 17:00
I have type two catamenial epilepsy. I was diagnosed aged 17, but my seizures stopped aged 20, roughly the same time I had a progesterin implant for contraception. I always thought they might be linked, so she’s 34, thinking of starting a family, I saw an obstetric neurologist who assured me there was no correlation. I had the implant removed, three weeks later the first of a long line of tonic clonic seizures. Always 12-14 days before my completely irregular periods. My neurologist (make) at the time actually told me I had NEAD because I was petrified of becoming a mother, but I knew it wasn’t. I found a different nhs neurologist who prescribed keppra and I’m now 1 year seizure free. Maybe progesterone of some type might help. I know there are some natural sources.

I also use a period/ovulation

Submitted by Trillian on Thu, 2017-11-09 - 17:00
I also use a period/ovulation tacking app on my phone, but if your hormones are fluctuationing that probably won’t help you atm.

I can't take anything with

Submitted by Bailey18 on Tue, 2017-11-21 - 11:21
I can't take anything with hormones or I have horrible grand mal seizures. No birth control, steroids anything like that. The e.r. gave me steroids for swelling one time even though my records said no. I had the most horrible seizure later that night. 

Oh yeah and my neurologist

Submitted by Bailey18 on Tue, 2017-11-21 - 11:29
Oh yeah and my neurologist said my pregnancy would be difficult because of the hormone changes but i started having seizures almost every day after i got pregnant. Difficult, but she was worth going to the doctors all those times. 

Please excuse this long post,

Submitted by Tinafair10 on Fri, 2017-12-15 - 01:16
Please excuse this long post, but I thinkcan truly relate. I began having seizures when I was 12, within a few months of beginning my monthly cycles. From that time on, I would have seizures any where between one or three a month, usually at that time of the month. My other trigger was high stress. This continued over the next few years, with occasional  changes in medications. During college, surprisingly, I went three years without any seizures During that time I also got married and pregnant as well. I went to s high-risk OB/GYN specialist who, through God's grace, got me through my pregnancy with no seizure activity! Unfortunately, within y 6months of thst, I was forced to divorce my husband. My baby and I moved in with my parents. I began having seizures again from that point on.This continued for the next 21 yrs. from 2010-2013, my seizure activity picked up due to an increase in high  stress levels as well as monthly hormonal changes. I was having them every other week or more. I stopped working in December 2013. From that point on, I've had maybe 3 seizures. I also going through menopause at that time. My monthly cycles stopped in  2015 and I have not had a seizure since then! I still take the seizure meds daily. They have always been high levels. At this time, I have no plans to stop taking them. I've heard that if a person goes a certain number of years without having a seizure, they can try to go off the meds (with a doctor's assistance). Maybe I will be brave enough to try it. Who knows? A girl can dream!

I want to add that I had not

Submitted by Tinafair10 on Fri, 2017-12-15 - 10:28
I want to add that I had not planned my pregnancy. My pharmacist told me that it was possible the seizure meds had diluted the birth control I was taking. My son was born 6wks premature and was in the NICU for two weeks after he was born, in order to back him off of my seizure meds. I cried over it and felt so guilty for putting him through it, but the doctors reassured me that it wasn't my fault. It was just a medical issue to take care of.

Hi, I'm Lorraine and I also

Submitted by LoriNorris on Sun, 2019-05-26 - 08:29
Hi, I'm Lorraine and I also have epilepsy. There are a lot of things we have in common especially having seizures occurring during ovulation and periods. I want to write a book that focuses solely on all types of women with epilepsy.  If you want to talk more please feel free to email me at lorraine.malek27@gmail.com. I look forward to hearing from you. 

Join Our Newsletter

Stay up to date with the latest epilepsy news and stories from the community.