Hello everyone! In light of Purple Day (tomorrow) March 26th, a day to recognize and celebrate those living with Epilepsy; I am addressing the most frequent topics I have been asked about the past 7 months: “How has it been going? How is Epilepsy affecting your pregnancy so far? ” I want this post to be a source to those with Epilepsy that have found absolutely nothing regarding real experiences of pregnancy. I came up empty handed when researching what would happen to me compared to everyone else the next 9 months. At first, I also asked how Epilepsy would affect pregnancy…but I didn’t know I was asking the wrong question. I should have been asking how pregnancy would affect my Epilepsy. Even so, there is no information on that either. Friends and family members may think I can be too open about personal topics sometimes; but I choose to be open because 1. Someone needs to create awareness about those who live with a disability that is invisible. It is hard to empathize with the fear Epileptics have every single day, and now there is a major change potentially creating a recipe like my cooking…horrendous. And 2. I am not a child anymore, but in fact, an adult that experiences shared female biological processes-no need to hide 🙂 Lastly, I intend to make this helpful for those without Epilepsy because I experience all non Epilepsy symptoms, too; but not even close to similar scary stories that I read about. Main point as I am in my third trimester now: Epilepsy isn’t the villain here, but rather, pregnancy has been the villain to Epilepsy.
“I bet you are so excited, right?”
Not quite something to Google, but something I was asked a lot. Of course I am! But also not totally. Google was the first to find out my news that I would be incubating a human. This news opened the door to the panicked search of doom even though I followed all preparation precautions. What I mean by this, is those with Epilepsy have to do a lot more specific planning before “regular” pregnancies, but also have to plan beforehand the action plan for med changes/managing triggers immediately after the baby is born. News flash-Epilepsy does not stop once the baby is born! As mentioned, all I found on Epilepsy was the cookie cutter “call your neurologist with any concerns” type answers. In this case, I would call and not hang up the phone! I found absolutely NOTHING in depth about certain pregnancy medications, or the real concerns I had. I continued searching and tried every phrase combination, including trying different ways to misspell it since I have seen “Epsilpy” and “Epilepcy” more times than you’d think.
I also felt/feel pending guilt because I know that those who live with, know someone, or are about to be grandparents/uncles & aunts to a child coming from someone with Epilepsy are depending on me. I know there is an unsaid fear that the baby will be “messed up or not normal.” This is not a lack of better term. I have already heard it a time or two. The only thing I can give comfort about is the fact mine is not genetic, but rather, the result of a brain infection from chronic Lyme Disease that was discovered by going to an alpaca farm. Just a tad bit different! (I went down the Lyme Disease googling rabbit hole, too.)
“Are Epilepsy medications harmful during pregnancy?”
I am no doctor, so do not quote me in APA format, or any format, for your research papers. This topic was 100% the one I googled the most. I even considered pausing my meds for 9 months by telling myself “focal seizures aren’t that bad! I will resort back to staying up all night which will prevent the Grand Mal and fear of them happening.” This was my life before my diagnosis, and living in sleep deprivation + fear of my own brain probably would not work out! Giving up meds isn’t like giving up caffeine, cold cuts, or a cold one. Grand Mal seizures are high risk and potentially fatal to an unborn child because unconsciousness cuts off oxygen to the baby. Epilepsy medications can impact fetal growth with a teeny tiny chance of abnormalities such as preterm birth or defects, but I have been directed a few times to the maternal fetal medicine specialist because of this. I made Zach go with me because navigating new places and parallel parking is scary…oh, and to see our baby (moments like these make it seem like I am not the adult I said I was earlier.) This has nothing to do with anything, I just thought this needed an intermission from seriousness.
Thankfully, my focal seizures don’t affect baby because I stay conscious, but I made sure I came off the walk-the-line- harmful meds, and increased the dosage of the said to be “safe meds.” This brought me to my next question to dig deeper into Google.
“What Epilepsy medications are okay for pregnancy?”
Thankfully, more research has been done on Epilepsy medications and 2 out of 3 of my medications are Class B (pretty much known to be perfectly fine during pregnancy). These are Keppra and Lamictal. The third one I am on, Oxcarbazepine, one I have worked hard to learn to spell, is a Class C drug. This means no research has been done at all. Basically, I have to risk it for the biscuit – or rather, the bun in the oven. For those of you on Oxcarpazepine; this is my first hand experience saying all my anatomy scans, heartbeat checks, ultrasounds, and baby heart echo have been completely normal. My biscuit/bun is cooking well! But, for the slim amount of people, like me, that need to be on more medication than one to control seizures; this increases risk. It can get frustrating knowing that the way my Epilepsy responds to medications is totally out of my control, and I won’t know the impact it has on other traits until the bun can come out of the oven.
Remember how I said I had to do more to prepare? Before getting pregnant, I had to start taking an abnormally large dose of prescription folic acid for neural tube growth. I was warned that Lamictal is the ONLY drug proven to respond like a rodeo rider during pregnancy because it breaks down quicker than the body can absorb it, and makes folic acid do the same. I didn’t give that much thought, as I thought it was like one of those commercials stating Ibuprofen’s potential side effect could be death aka unlikely. This is the part where pregnancy is the villain, and I got bullied very quickly. Once I hit 5-ish weeks, I started having uncontrollable focal seizures during the day. Considering mine are nocturnal, this was terrifying for me, and royally screwed up one day in particular with family visiting. I resorted to hiding away because my seizures aren’t easy to watch, even for myself. It was hard to explain to family that week why my Epilepsy was a dumpster fire without revealing our secret that pregnancy was the cause, or without making up something sounding like a bad excuse paralleling to a dog ate my homework!
I have always been embarrassed for anyone to see what my seizures look like, even my own parents, heck, even my dog used to look at me like what are you doing to yourself? It was that exact day I saw side effects are real and I realized pregnancy & Epilepsy were going to interact like water and oil. As I sit here writing today, I still struggle with stopping my focal seizures and have to adjust Lamictal almost monthly.
“How terrible is first trimester?”
Once my meds somewhat balanced out my Epilepsy, I braced myself for my romantic dates with the toilet and every other general terrible symptom I read about. To prove I am still a psych nerd; there is a concept in psychology called the negativity bias which states that more negative experiences are reported than positive because that is how we make sense of the world in a primal way. Bad=avoid=stay alive. We totally dismiss the good. Knowing this concept very well, I still convinced my brain that nothing good comes from the first trimester even though I know 50% of people do have good experiences. To all the folks looking for a good first trimester account, I am your real proof! My first trimester was delightful (like actually, I am not being sarcastic like I usually am). I still resumed going to the gym everyday, work, no cravings, and had dates with Zach instead of the toilet. The only symptom I experienced was being repulsed by grilled chicken, almond butter even though I never eat it, and popcorn. So what did my Epilepsy do to the first trimester? Absolutely nothing, except remove popcorn while watching a movie. My first trimester was my best one…but what comes up, must come down.
“Is it true that Epilepsy gets better with pregnancy?”
With the little information I found, yes it does for “normal” folks due to hormones stabilizing in second trimester! For those of you with Epilepsy reading to confirm this information…do not confirm so fast. My second trimester was the weirdest in the sense that if I did not have Epilepsy, it would have been perfectly fine with the perfect pregnancy glow and perfect energy surge and all other things perfect. Again, pregnancy swooped in and bullied my Epilepsy. I did not know my brain would gift me with pattern-like vertigo after taking my meds everyday, last until exactly noon, then magically stop. It started being a once a month type thing, usually on Sundays before church (the Lord did not provide me any help while putting eyeliner on, spinning in the mirror.) Eventually this weird “thing” turned into a daily routine. This made me have to rely on rides anywhere before noon, and needed assistance walking among other tasks until noon. Then, I could do all those things myself again.
I can report that it is still ongoing in the third trimester. The lovely part that I have learned is drinking water does not help as water cures all things in most people’s minds, but rather, makes it worse and put to use the man’s job of being a human pony tail holder. To those with Epilepsy, or care takers; the dangerous part here, along with morning sickness if experienced, is medications need to stay down otherwise that equates to not taking a dose of meds. I learned that even one missed dose screws up the occurrence of my seizures. This strange spinny symptom, hands down, is the worst part of my pregnancy and is a warning!
“Can I drink coffee while pregnant?”
This is a general pregnancy question, but I quickly learned Epilepsy is involved in the weirdest way; and no, not increased seizures like I was worried about. Coffee may not be your cup of tea, but if a cup of tea is your cup of tea; just stick around for the caffeine part. Yes, 250mg of caffeine is perfectly fine during pregnancy (this is the tea part-it has caffeine. Chocolate does too! Sorry to report that.) My 8 ounces of coffee everyday is not even close to 250mg-perfect! I am all good, I thought. But (there’s always a but), I have learned that if I wake up before 8am, take my meds, and then take even one sip of coffee, Zach is back on duty as pony tail holder, and my meds are gone. After this lovely experience, I am fine and can go back to sipping on my coffee like nothing ever happened. No nausea at all. This never happened before pregnancy, but now this pattern happens every time, and I have no clue why! 8:15? Perfectly fine. 7:45? Not fine. The only equation I can chalk this up to is Pregnancy + Epilepsy meds + coffee + certain sleep cycle?… = a bad start to my morning. If anyone is good at this kind of math, please help me.
“Can I still workout while pregnant?”
For those with Epilepsy, maybe give this a try. The rule of thumb here is if one works out at a certain intensity before getting pregnant, then it is perfectly fine/even recommended to do so throughout the 9 months. On the converse, if you are not an active person and decide you have a craving for running a marathon instead of craving pickles; that would be a very large issue. I wish I had learned this tidbit of the ability to transfer intensity before freaking out at the fact I started sweating during a cycle session. I did in fact call the doctor to see if sweating meant I overheated and cooked my biscuit/bun. Warning: to all my heated yoga girlies- this is the only part where cooking yourself cooks your baby). Working out is important for my Epilepsy, and always has been, because working out is my method of stress relief. Every person with Epilepsy has certain triggers that make their condition worse. Mine is stress, and straying from routine. My habit of working out daily since I trained 20 hours a week starting in 5th grade is why this helps relieve stress. It is what I am used to and I enjoy it! Working out in general has helped me dodge the swelling of my limbs, and a lot of other symptoms due to core strength and blood circulation! For those struggling with those symptoms- give this a go!
“Is it true that I have to sleep on my left side?”
This may be a thing that only relates to my type of Epilepsy. As I was spending my mornings googling, I stumbled upon information saying that it was better to sleep on the left side to help with blood and oxygen flow, rather than the right side. I had to make sure this was real, but I couldn’t find anything concrete. According to WebMD, it was true. The fact I considered WebMD being correct means a lot, because I physically can’t. Most people’s issue with sleeping on a certain side is due to preference or avoiding their spouse’s bad breath…but because of my Epilepsy, I can’t sleep on my left side. Sounds odd, right? Again, another reason why a demand of pregnancy affects my Epilepsy. Sleeping on my left side has always been a trigger for me, and never fails to fire up a focal seizure. Why? I can confidently explain this to you as I have no clue. This still remains no matter how much medication I am on. My focal seizures turned into “unconscious spells” as I called them before I knew they were Grand Mal seizures every time I was on my left side. Knowing this information actually helped me get my Epilepsy diagnosis. All I had to do was sleep on my left side for my overnight sleep study because I knew this trigger. I try to sleep on my left side occasionally to reap the said benefits. The only comfort in this is knowing that Zach will grab me to stop it all if my body decides to behave like a terrible two toddler.
“Do I have to eat differently with Epilepsy during pregnancy?”
No insightful answer here, it’s a no on my end. For some, Keto may be required (fun fact, Keto was “made” for Epilepsy, not for getting rid of your lovely love handles). But a tip to everyone in case you forgot, eat a vegetable today!
To sum this whole post up, which I probably could have done in one sentence instead of lots of paragraphs; Epilepsy does not affect pregnancy if the established precautions are taken, but rather, pregnancy is more of a threat to Epilepsy. This is all the fortunate and unfortunate personal research I have gathered along the way as someone with Focal Onset Frontal Lobe Epilepsy. I hope this brings peace to some, or a warning for what to look out for. I can tell you, I have googled many many many many more things but will not list them here because of their stupidity. I will always continue to spread awareness whether that be in small ways, making MN bridges purple, and now I can add my story being featured on the National Epilepsy Foundation social media channels to the list. If you remember, feel free to join me in all things purple on March 26. Wear something purple, drink grape juice, eat a purple potato, or cuddle a Barney stuffed animal…is it just me that has one of those?…Forget I just said that.
Thanks to all those who made it to the end here and continue to follow my adventures with Epilepsy and our little boy coming in May!
~Lauren
Life of Lauren 