Epilepsy & That Time Of The Month
Yep. I’m going there. That awkward, not-often talked about subject coupled with epilepsy. First thing’s first. That time of the month sucks. An unwelcome guest that barges in and makes itself home every month, with us ladies. Sometimes we feel sleepy. Sometimes we experience belly aches or are… to put it politely, cranky.
Seizure triggers are situations that can bring on a seizure in some people with epilepsy. For example, sleep deprivation. Caffeine or stress. Maybe a culmination of these. Do you know your seizure triggers? Surprisingly, a woman’s menstrual cycle can be a seizure trigger as well. This form of epilepsy is called “Catamenial Epilepsy”
What is “Catamenial Epilepsy”
This form of epilepsy is a subset of epilepsy, which includes women whose seizures are exacerbated by their menstrual cycle. Women with catamenial epilepsy are unusually sensitive to hormonal changes.
Let’s break this down a little further. A woman with this type of epilepsy might only experience seizure activity around that time of the month. Talk about a double dose of “Not cool” right? It’s a rare occurrence, but if you tend to notice a heighten in seizure activity before or during that time of the month, even during ovulation, you might want to jot that down as a potential seizure trigger.
“Menstrually related hormonal fluctuations in estrogen and progesterone underlie the patterns of catamenial seizure exacerbation. Estrogens facilitate seizures, whereas progesterone protects against seizures. During the menstrual cycle, serum levels of estradiol and progesterone fluctuate.” – epilepsy.com
After two years, I began to take notice of an addition within my seizure triggers. Seizure activity amplified at the time of ovulation. Before and during. Sometimes simply auras, sometimes, complex partials, once in a blue moon, like a right hook, a grand mal seizure. I wasn’t ready to claim it a trigger at the time because I couldn’t make sense of it. That is, until over time, the pattern began to make itself boldly noticeable. What do we call that? How do we research that? Where do we begin? We wondered. Tirelessly we studied until we got our answer and determined that this indeed was a trigger to add to the list for me.
Uncommon. Yes. You won’t find this on most websites under types of epilepsy. It is my belief, I want to make it clear that I am not a medical professional, that more studies on the topic must be done.
Women, I know that it may feel or seem like an awkward topic to discuss but guess what? As advocates, as fearless fighters of epilepsy, we do not cower to any matter revolving around epilepsy.
I have catamenial epilepsy. The seizures I endure before and during are annoying, and frustrating on top of the belly pain and exhaustion. It’s my without a doubt “Me-Time”.
What Do I Do During This Time:
- Drink plenty of water in order to stay hydrated and energized
- Get plenty of rest to restore my body and brain’s energy
- Limit stressful activities and situations in order to avoid provoking seizure activity
- Do stretch exercises to alleviate stress, tension and/or pain caused by that time of the month and/or seizure activity
- Drink non-caffeinated teas (Personal favorites: Green Tea, Ginger Tea, Chamomile Tea) for relaxation and restoration
I also have refractory epilepsy which include multiple forms of seizures. This is the journey that I refuse to let take me down.
Speak up. Speak out. Even about the tough stuff. Let’s show epilepsy and the world that we are tough stuff when taking on this challenge.
Share your thoughts and takeaways in the comments section!
Tiffany Kairos
I am a happily-ever-after wife, an epilepsy diagnosee, advocate for epilepsy awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!
6 Comments
Sharon West
Hi I was never happier than reading your post? Knowing I’m not the only woman struggling through life with seizures aggravated by time of there month! I had my 1st fit at 12yrs old diagnosed with generalised juvenile myoclonic epilepsy at 14yrs, also to be told it’s genetic epilepsy on my mothers side but only in the females hitting puberty wiv lovely extra hormones! Lol! Was never given a name for this part of it & I’m almost 40yrs now and as I got older my seizures got worse with hormones gone crazy especially after having my son who’s 21yrs now that was hard? Kids & epilepsy think he raised me more! Lol! Anyway I’ll stop babbling now and thank you again for your post, iv tried for yrs to get peeps to read my posts bout hormonal epilepsy but get ignored so the more of us talking would be awesome! Keep it Purple! Big luv Sharon X
Denise Boville
I have had catamenial epilepsy also. In addition to past hx of withdrawing anti seizure meds (which are sometimes needed after a few years but never worked for me) I am now thinking about it again. Post menopausal. Possibly no more seizures. But after two trials weaning med with recurring seizures afraid to try. Plus I drive for my home health job. I guess at $4.00 a month it is just easier to take the meds.
Rhonda G
I have Catamenial Epilepsy. I have Juvenile Myoclonic Epilepsy (muscle jerks mainly in my arms as well as grand mals) and my main trigger is by far hormonal. Almost all my seizures have been when I’ve been menstruating, and my seizure activity is also heightened during ovulation. Another huge trigger for me is soy. Soy imitates estrogen and should be avoided by people with Catamenial Epilepsy. I am part of a Catamenial Epilepsy Facebook group and so I feel that there is support for those of us with this type of epilepsy. However, I was the one who had to bring it up with my neurologist, and it doesn’t feel like he knows a lot about it, so I definitely agree that more research needs to be done, and more educating of the doctors needs to be done.
Mandy K.
Thanks so much for posting. I personally developed PCOS, and the OBGYN feels that it may be due to the epilepsy medications. I was either bleeding for over a month straight or bleeding so heavily that I would pass out. We found that taking progesterone helped keep it in check. I agree that maintaining your stress levels and getting plenty of sleep is key! Our bodies react to this triggers and we hardly realize it. I do yoga or go to the gym and for me, that alleviates a lot of stress. So I agree with your post! God bless and I’ll be waiting for the next post. ❤️
Jade
I have Catamenial Epilepsy and it truly is a pain. Not only is that time of the month awful on its own, but knowing that for at least a week out of every month that I’ll basically be worthless is so frustrating. I have to be very careful with any form of birth control, because anything containing estrogen will send me into a whirlwind seizure activity. I have used Nexplanon (which is Progestin only) for 3 years. It works well and has even made my extremely heavy flow just a day or so of spotting, but it has not stopped the seizures that come with my body’s natural rise of estrogen. I still may have seizures from other triggers other than menses, but for now I’m down to just 1 or 2 a month. I am happy to see someone actually talking about a topic that is taboo even in the epilepsy community.
Tiffany N Andrews
Hi Tiffany, My name is Tiffany Andrews I feel like I’m talking to myself (LOL) I have had epilepsy since I was 8 years old. I appreciate you for sharing your journey. As a mom who’s epileptic, it has been really hard. When I was pregnant with my daughter, I had a seizure. I was so scared!! Needless to say, she is now 5 going on 6. Anyways, I want to thank you for making me feel that I can do any and everything despite me having epilepsy. I’m sorry for this long message but I am crying as I write this to you. Although I have family, my boyfriend, and my daughter, I still feel alone. I promise I’m almost done. LOL.. You have taught me about loving myself even though I have epilepsy. For that, you are an angel. GOD BLESS YOU!!