Onsies for Epilepsy

Hey There!

To all my fellow warriors, fighters, and those who love and support us; November is Epilepsy Awareness month. I challenge YOU to post a selfie or a group photo in your onsies with one epilepsy fact to your social media page. Tag it with #onsiesforEpilepsy this November to help spread awareness and for a chance to be featured (with your permission of course). Please join us in spreading awareness all throughout November and feel free to drop a photo below in the comments!

14650300_10211139212736322_832220277355812493_n

←All types of onsies are welcomed; as well as pets→


Seizures In Public

0010363618v-849x565

“Where am I? How did I get here?” – does this sound familiar? What do you after you had a seizure in public. “Did anyone notice? What do I do now?” Here are some quick tips on dealing with Epilepsy and Seizures in public


Before a Seizure

  • Medical Alert ID: If your seizures come without warning, are frequent in nature, or you become disorientated and confused for a while after a seizure – it would be beneficial to invest in a medical alert band. This way if anything does happen in a public place, you will have some basic information in visible sight. Information usually includes: you name, your condition, medication(s), and an emergency contact. If you have rescue medication – may place that as well.
  • Spare Medication: If you are unsure whether you will be back in time for your next dose or a chance you may stay elsewhere for the night – bring extra medication. This is your first line of defense against a seizure and you should always be prepared. Sometimes we do not know who we will run into or where exactly we are going so having at least one extra dose on us can be beneficial.
  • Rescue Medication: Carry your rescue medication (if prescribed), wherever you go. You never know what may happen or what may send you off. Be sure to have specific directions along with it or on an index card in a med-pack or a bag that you use so others may administer it to you in an event of an emergency.
  • Eat, drink, and sleep: Sometimes we get busy and tend forget about our basic needs. Sometimes we may think “well, I can wait until the next meal.” Before going out, be sure you have ate something, are staying hydrated, and have plenty of rest – especially if you have a long night ahead of you. Of course, if you are going out to dinner or lunch, you do not want to have a full course meal but be sure you have had a little snack at some point beforehand. This will help increase your seizure threshold, meaning it will make it harder for seizure activity to occur, and help keep you going strong. You need to give your body and brain the best possible chance.
  • Bring a med-pack/First aid kit: It does not have to be anything major and tailor it to your specific type of seizures. See here for what is in my med-pack if you need help getting started – reminder: this is tailored towards me and I made it more on the universal side. I have tonic-clonic seizures without auras, therefor I prepare for injury. I do not wet myself or lose control of my bowels, therefor I did not state packing extra clothes. It depends on your specific situation.
  • Auras: If you have auras; do not ignore. If something does not feel right, take the warning. Whether this means going back home or finding a less stimulating area – do so. Do so in a place where you can get low to the ground and away from objects if possible to promote personal safety. If your seizures do not involve convulsing – still do find a less stimulating place to relax and try to keep as calm as possible.
  • Go out in pairs: If you have frequent seizures; there is no harm in making sure you have someone to go out with you. While yes, this can be annoying you, it is a matter of your health and safety. If you just feel “off,” when you usually do not or know that you have not gotten a lot of sleep and that is a trigger – do not be afraid to phone a friend or family member to tag along with you.
  • Call/Text: If you are going out alone, let someone know where you are going. If you feel off, call or text someone so there is a time frame of reference and someone will be aware of where you are in case of an emergency.

After a Seizure

  • Disoriented and Confused: If you have no idea where you are or who is around you; do not panic. Take in some deep breaths, try to relax, and ask someone what happened. If there is no one around – take time to relax and slowly reorient yourself. Try to remember the last thing you were doing or place you have been. Check recent texts, calls, and even receipts to see what you can remember last.
  • Phone a friend: If a seizure had just occurred, it may be beneficial to call a friend to accompany you, pick you up, or simply talk you through your postictal phase. This friend may be able to help reorient you and will be able to help you track your seizure.
  • Check for injuries: If you are alone, check yourself for injuries. If someone is with you, if you feel comfortable have them also check. You want to make sure no harm was done and assess if medical attention is advised.
  • How long was I out for? If you do not know or do not have a frame of reference – call your neurologist if it is during regular office hours. If it is late at night, assess yourself or have someone else assess you. There is no harm in taking a visit to the ER or walk-in if you are unsure but not all seizures may require medical attention immediately. Regardless, phone your physician or specialist as soon as you can so they are aware or if you have a plan to document occurrence, just do as your care plan states.
  • Do not drive: Right after a seizure had occurred, I strongly suggest to not drive yourself home. Ask a family member or friend to come meet you to either pick you up. You may have enough assistance where someone else could drive your car home; if not, talk to the security of the facility you are located at or manager on what to do with your vehicle. I am sure they will be understanding and if anything, call your local police department. They would rather you be safe than attempting to drive home
  • Rest: Take your time, take things slow – do things at your own pace. When you get the chance, be sure to rest. It can be stressful having a seizure out in public, especially by yourself. For myself, when I have a seizure alone, it leaves me uneasy with a lot of unanswered questions and this may happen if no one is with you during the time you come to. Just remind yourself: you are safe, you are alive, and you are doing okay.

Gaining independence from Epilepsy can be hard, but is doable with the right support system. Never give up hope

What if you are the friend/family present during the seizure? What if you were a stranger walking by? Do you know what to do? Check  here

Coping with Epilepsy – Social Acceptance

excision-33594_1

The Social Side Effects

Epilepsy affects many parts of our lives; friendships, family, work, school, relationships, and so on. There can be negative social ramifications such as losing what was once best friends, family distancing themselves, or coworkers and colleagues becoming hesitant when around you. Some of us deal with stigma in our daily life followed by shocked faces and funny looks. But there are also positive outcomes like finding new friends, building stronger relationships, and finding new opportunities that you never knew existed. I have recently written a post on self-acceptance of epilepsy and the journey it takes to get there – which can be quite long. But how do you deal when others are having an issue of acceptance? How do you cope with the loss of friends and the distance of family members? You will be surprised with how similar both roads are. Here are some tips I have learned along my journey.


Self-Acceptance

First and foremost, you must accept Epilepsy to a degree within yourself before you try to talk to friends and family about it. Of course it is possible to go ahead or simultaneously travel the route of personal acceptance and social acceptance but things will become easier if they are already accepted within. I often find topics to be easier when I understand them for myself. Even if you do not completely accept the idea of Epilepsy entering your life – at least begin the process of understanding Epilepsy or perhaps your process will start here.

Educate

As I said in my last post – education is key. Educate your family, friends, coworkers, and colleagues on Epilepsy and your type of seizures. This will help them gain confidence in your knowledge about you condition as well as giving them personal confidence on how to help you. People are terrified of the unknown – they do not like to be caught off guard and some do not like the feeling of responsibility that they did not ask for

  • Erase the Stigma: Education is also helpful in removing stigma. “You have Epilepsy; I am not sure if you can do that” – have you heard this before? This blank statement usually comes from people who do not bother to ask you about your Epilepsy or do not listen to you but rather hear the term Epilepsy and revert to what they know. There is a lot of information out there, but from personal experience I noticed people tend to become fixated on the worst case scenario. They will avoid giving you a chance at something or inviting you somewhere because it avoids a potential risk. While yes, in some cases this is the best way to go, but unless the risk is involving your life being placed in harm’s way, then vouch for your right to have a chance. Educate them so they know how Epilepsy affects you. Step by step, this will help erase the stigma we face daily. That person may become inspired and tell three other people “did you know a person with Epilepsy can_____” Because we CAN and we WILL break these walls – give yourself a chance and others will follow.

Reassurance

While the idea of consoling someone older than you such as a parent or caregiver or consoling a friend on your condition may seem funny; they need reassurance just as much as you do. Some parents/caregivers may place the blame of Epilepsy on themselves or feel that it is their fault. They may feel that if they did something differently, you would not have to go through this journey. They may begin to harbor guilt which can manifest itself into arguments or unwanted distance. It may be beneficial to sit down and reassure them that this is not their fault – it is a random circumstance. Do not forget to remind them that no matter what, you appreciate what they do – they are going through a hard time right along with you. This can become emotionally overwhelming for you – as you may not understand why they are emotionally all over the place when YOU are the one going through Epilepsy in the literal sense. Do not forget they travel this road too as they watch every step you make.

Communication

Always keep a clear line of communication. Communicate your feelings, your concerns, and do not be afraid to ask them about how they feel or what their concerns may be. Sometimes this can be an emotional experience – you may hear things that upset you or you may not know how to react. This is okay. It is better to have things said and try to work through it as a team then harbor feelings of resentment, guilt, and/or fear which can add stress that is not needed. This can be therapeutic to both yourself and the other person.

Grievance and denial

This may be difficult to deal with when it comes to family – even peers. Some people may not believe you at first – this could be out of their own fear and/or wanting to avoid the situation. Some may truly not believe you and see it as “attention seeking” and more of a behavioral issue. One of the hardest things you will have to do, but yet one of the boldest and bravest, is to sit with these people and explain to them what is happening. I know it may sound cliché or redundant, but have a serious heart to heart, let them know how this makes you feel and ask them why they feel that way. This may be something that can be easily worked out or something that time itself may have to work out. Know that just like you, family and friends will go through a period of grievance that their loved one’s life will be changed and acknowledging that difficulties are going to come. It is hard to watch someone go through a condition like Epilepsy where they can feel helpless at times.

  • My perspective: I remember when my brothers had seizures – way before I developed Epilepsy myself. I remember standing there feeling like I could not do anything and with my elder, younger brother being essentially non-verbal – I wanted nothing more to experience what he did. Granted, I may have cursed myself at a young age but I wanted to help him and help others understand what he was going through. Family and friends will go through these emotions as well – they do not know what they should/can do. It is going to be part your job to help them along and educate them. This can be done either by giving them pamphlets, links to support groups and blogs, having them come to neurology appointments, or simply talking about your condition with them.

Loss of friends and distance of family members

While I wish I could say this will never happen, realistically it could and is something to be prepared for. Epilepsy is a lot to handle on your own – there will be times where you need help. Some people may have very mild cases and may not need the extra reliance. But for those of us who will – friends and family may not always be the most understanding. Once they go through the initial shock of the diagnosis – some may decide to make their distance. This can be an emotional time as well as close friends and family members may become non-existent. If talking to them and giving them some education on the topic does not help them cope; unfortunately, you cannot force them to stay and you should not have to. This acknowledgement can be hard to cope with but remember this; you do not need people like that in your life. If someone cannot accept you for both the good and bad – they do not deserve to be in your life. A true friend and real family will never walk out on you. They will never degrade you and they will never talk down to you. You DESERVE better than that. You WILL find new friends and new support – you may become closer to some people who were originally distant. With every person who walks out, a new person will walk in. You deserve nothing but the best; remember that.

  • Friends that leave and want to return: On occasion this may happen; a good friend might take a hiatus and come back into your life expecting you to welcome them with open arms after they left you at a low point. I will say that I cannot counsel you on what to do – this is a personal decision. What I will say and recommend is you have an open conversation without judgement and keep an open mind. Everyone copes differently. Perhaps they rethought their actions or maybe they came to a point of acceptance. It is hard and difficult decision to make; but everyone copes differently. It is entirely your choice to let this person back into your life and no one should ever judge you for the decision you make.

Strength, Courage, & Positivity

 Another subject that may sound rather silly but does help a lot is staying strong and courageous throughout your journey as well as keeping a positive attitude. While you should do these things for you own self-acceptance – it promotes social acceptance as well. When someone can see that you have a control on your feelings towards Epilepsy – it gives them comfort and gives them courage to take on this journey with you. No one else can experience Epilepsy the way you do and everyone will experience it differently. If you can take it on with a positive attitude; it will attract the masses and give them strength and courage to stand beside you as well as give them hope. As a family member, friend, or caregiver – it can be hard to stay positive at times; especially when you are witnessing low points of someone you love. But the positivity you have held all along will shine through another person when you cannot keep your head up on those low days. You will have encouraged and built a strong support system on pure strength, courage, and positivity.

Social Acceptance

While the journey may be tedious and may have to be restarted with every new social situation – it is worth every step. You will find out the strength of your support system, friends, family, and caretakers. You will begin to understand others better and on a different level than before. You will also meet new friends and extend your support system. Each day, you will begin to knock the walls down of the stigma that surrounds Epilepsy and Seizure Disorders. With every step you take, you are one step closer to not only helping yourself, but everyone around you and the Epilepsy and Seizure Disorder community as a whole. You are a warrior. You are a fighter. It may be tedious – but you will get to where you need be. Promise.


Never Let Anything Stop You

image-1

Here are some of my accomplishments despite the stigma and despite Epilepsy

  • Top left: I got accepted into a Leadership program at my college
  • Middle Left: I was a volunteer at a pediatric oncology clinic and became camp counselor at a pediatric oncology camp
  • Bottom Left: I currently work at a local hospital
  • Middle: My little family – my two beautiful girls and loving partner
  • Top Right: I was inducted into Sigma Theta Tau International – a nursing honor society
  • Middle Right: My first love will always be music. This year I finally had time to get back into it with a help of a close friend. I currently play French Horn for a local Portuguese Band
  • Bottom Right: I am senior in a BSN program to become a RN

Share your thoughts and your accomplishments! Together, let us knock down the walls of stigma and become one step closer to social acceptance

 

Acceptance.

 ←PeaceLoveAcceptance→

 

Something we all strive for as social creatures. Acceptance from peers, colleagues, and coworkers. We even strive for self-acceptance – for example an acceptance of a new condition or issue within. For some of us, coming to terms with Epilepsy can be a challenge. For some, this challenge is extended to family and friends while we struggle with accepting it ourselves. How does someone ‘accept” something they never asked for.


Education

I could never stress this point enough; education is key. It is the key to acceptance within social standards and within ourselves. Things become harder when you do not know the root and cause or how things will play out. For some of us, myself included, we never get the “cause” or satisfaction of knowing why Epilepsy decided to choose us – it just happened. But for some, they know – they have some understanding. While this does not mean one is harder than the other, educating yourself on either personal factors or possibilities can help ease your stress of the unknown. If you are newly diagnose and do not know much about Epilepsy and other Seizure Disorder, look it up! Educate yourself as much as possible. Never be afraid to ask your specialist a question or to rule out possibilities you come across – that is part of their job and you may think of something they could have overlooked!

Look up stories, check out credible sites, talk people who have been living with Epilepsy, join support groups – do anything you need to in order to educate yourself and get a better understanding. The unknown will slowly become the known and you will be one step closer to acceptance

    Be Honest with Yourself

At first, we may be a little bit in denial about the extent of our condition. We may not want to accept that it will/has changed our lives or the true severity of it. We may feel embarrassed or overwhelmed with everything going on – but we will not get through it if we cannot be honest with ourselves. This can be hard, very hard. It is okay to feel overwhelmed, angry and upset. It is okay to wish this has never happened. But be honest with yourself on how you feel and try to find out why. “Why do I feel this way?” It could stem from a lack of understanding or social rejection. It could stem from watching a close family member or friend go through it. You will never find an answer if you cannot be true to yourself.

It took me years to accept my condition entirely. Does this sound silly? Maybe. But it was not until I saw the impact of sharing my story – even if it was the tiniest bit of information, it still made a big impact for someone else. Only then did I realize I was not being honest with myself. I told myself I accepted it when I truly never did – I was afraid of the stigma. I told myself it was not big deal, when in reality it was. It changed my way of life, my friends, my support, and my interactions. I was in denial that it ever affected me at all; but every hero falters, everyone has a heart, and everyone feels – it will affect you in some way and that is okay.

Grievance

Grieving? We are not dying, but simply have Epilepsy. You are right – but this still can be an emotional and upsetting time when the diagnosis is given. You are right, it could be much worse – but let us have time to adjust to the changes, the constant appointments, the medication, the brain fog, and the stigma. Let us have our moment of sorrow for something we never asked to be placed upon us. We all grieve differently and we all take different losses with Epilepsy – a loss of independence, loss of the ability to drive or to work, loss of a dream we were chasing…it is okay to be upset.

More importantly, allow yourself time to be upset and time to let reality set in. You will not be able to accept something you harbor hate or dislike towards. Talk it out with family, friends, significant other, or even your doctor/specialist. If you need some extra help, go seek it – go to counseling if you have to, it is okay! Epilepsy and mental health go hand in hand more often than not. You will be surprised how many of us have mental health conditions alongside our Epilepsy, reach out to us – we exist.

Perspective

When you first get a diagnosis that may potentially change the usual flow of life – do not dwell on what is lost, but focus on what is gained. Yes, allow yourself time to be sad but then allow yourself to be happy. You may have met new friends, you may have a stronger support system, or you may finally have answers to questions about yourself that you have been afraid to ask. Perspective is everything some times and with any type of new diagnosis, try your best to keep a positive outlook. While yes, Epilepsy may be part of your life, it is NOT your life and it is not YOU. You are you, and you need to be the best you that you can be. Do not let Epilepsy stop you, but empower you. There are positives to this. Remember: You can still live a normal life, you just might need to do things little differently or take things a little slower. But life will go on, and you will too.

If you are struggling with keeping a positive outlook, I challenge you every morning or every night (or both!) to say three positive things about yourself and one about Epilepsy/Seizure Disorders. It can be small thing such as “I am alive, it is sunny, I have a home, and I did not have a seizure.”

Strength & Pride

Once you begin to look at things with a more positive outlook, you will slowly begin to find strength in new places and a new sense of pride. Your journey may test your limits but it will only make you stronger with each passing day. You will gain pride in every accomplishment, no matter how small or large – you were able to still continue on despite your adversities. Take pride in your journey, take pride in your strength and let your strength keep pushing you forward as it continues to help you grow.

Acceptance

Once you understand, once you allow time for your emotions to pass, and once you change your perspective – only then can you begin acceptance. Only then, will you fully accept your diagnosis for what it is and start to wholeheartedly accept yourself. Like I said, it took me years to get here; everyone will have a different time line, but you WILL get here. The more light that gets shed onto the unknown, the easier it is to accept and navigate through. Just take it one step at a time, there is no rush. If you need to stay a while on one step, that is okay – I will stand with you, we will get there. Just breathe, tomorrow is a new day and with every day, you are one step closer. Promise.


What Ultimately Helped You?

For me, it was the moment that I shared my experience with others, face-to-face, and gave them the confidence and positivity that I never received in the beginning of my treatment. I treated them in a way I wish I was treated and gave them a real life example of life continuing on. I was able to give them hope. It was in that moment I realized that I was not honest on how I personally felt, that I tried to ignore it as others have done when I tried to reach out, and that educating myself would only go so far. At that moment I made a promise to myself to be more accepting of my condition and use it help benefit others. Over time, I gained acceptance of myself.

Remember, acceptance does not mean you will not struggle. There is a lot that comes with Epilepsy/Seizure Disorders and yes, struggles will arise – but accepting those struggles is part of the journey. Accepting the good with the bad and always being honest about it is part of overall acceptance. And you will get there.


Feel free to share you journey to acceptance below and what helped you along the way

Parenting with Epilepsy

image1

What’s it like to be a mother with Epilepsy?

It is hard some days. It is hard work being completely healthy but imagine having a chain-linked fence in the way. You can reach through this fence but you are barely touching your child’s hand as they reach out for yours. Imagine having to console your children every night that mommy will be okay. Imagine your children being afraid to go off to preschool because mommy might have an “accident.” Imagine your children’s morning motivation to get up is to help you take your medication. This is motherhood with Epilepsy.

There is only so much I can do at their ages of 2 and 3 to help them understand. They try their best and try to help me. Some people question why I allow them to help me; it has helped them cope. Even though my accident has now been almost a month ago – I still have marks and every day my 2-year-old asks to see them and kisses them to make me better. They have not picked up on mommy’s jerks and probably see it as normal due to frequency but one day I am sure they will ask.

There is guilt. There is anger. There is joy. Guilt for me comes from having Epilepsy. I had a seizure and thought I dropped my newborn but luckily and probably subconsciously as well as instinctively, I placed her down to sleep. I had another seizure while they were both in the tub and the reality is that they could have drowned. There is guilt I carry from those almost events. There is guilt I carry for every tine my children worry. My anger stems from guilt. I get angry at Epilepsy. I do not want my children’s first memory being that mommy had a seizure. Unfortunately, the reality is that it was traumatic for them and that might indeed be their first memory. But alas there is joy. They are more aware, more forgiving, and kind. They understand sometimes people need help; even adults. In one aspect it brought us closer, if that’s even possible.

They are my heart and soul. They inspire me. They push me forward. I would be lost without them. They make me fight harder every day. They are the sun on my rainy days.


How do you explain to a child about your seizures?

This will depend on the age group and what YOU as a parent feel comfortable disclosing. Let us take a quick glance over the development of children.

  • Infancy (0-1 year) | Coordination sensory experiences with action
  • Toddler (1-3 years) | Egocentrisim, questioning through play,
  • Early Childhood (3-5 years) | Rudimentary conscience, knowing right from wrong, magical thinking
  • Middle Childhood (6-12 years) | Perceive past and future, questions others point of view, question beliefs, trial and error, problem solving
  • Adolescence (13-18 years) | formal operations, strategic interventions, interpretation of earlier experiences

(Note that this goes a lot more in depth and by theorist; again this is a brief and simple overview)

 

For my children; they are about the age of magical thinking – what this tends to mean is the child may blame themselves for why something has occurred. The believe that their words have power. Also they are still routine orientated so when something gets interrupted it is an anxiety provoking experience. For me personally, I saw how much stress this caused my children. I saw their confused and tearful looks – curious if mommy was going to be okay. I decided right there I would be honest, use as many proper terms as they could grasp, and communicate with them in their own words. They call my seizures “accidents;” when I used the word seizure they automatically connected it to accident and that is how I explained it to them. When I talk about my medication, my two-year-old calls them “beans;” so that is how I explain it. It is important to explain things in a way that THEY will understand. It may sound silly but this also alleviates their stress and you know they understand what you are saying to a point.

I also decided I wanted to be transparent. I want them to know; I want them to know what to do. I feel that this would be easier for them as I am a single parent. No one else would usually be there to help them in an event or shield them from the truth so for me it was best to prepare them. Plus, they will be able to get some form of help if needed. Again, this is entirely your choice and your decision.


Did this affect them?

I cannot say for sure to what extent but as of the most recent one, truthfully it has. They worry still every day. Just earlier today my three-year-old told me she would buy be a special present if I did not have any accidents. They check on my old wounds and confirm that they are going away and they make sure to watch me take my medication. They are a lot more concerned when routines get disrupted or things have changed. My oldest refuses to sleep in her room since the accident. My youngest is starting to follow in her footsteps. I reassure them the best I can in a way they can understand but it is not that easy.

Some people may automatically blame their stress on my transparency – but I ask you to think about this situation. You are by yourself with your child/children and you fall to the floor unconscious and convulsing for 5 minutes, possibly bleeding due to an injury. What is more traumatizing? Not knowing what is happening or knowing that there is help and this can be fixed? It is a personal choice and preference and I respect everyone’s opinion, please respect mine.


From my Three-Year-Old

“What’s it like with mommy having Epilepsy/accidents?”

Kaylin: Lots of doctors…and more doctors.

“Are you scared mommy might have an accident?”

Kaylin: Sometimes..no more accidents. You have to be a good girl.

“How do you feel about mommy’s medicine?”

Kaylin: I like your medicine. It keeps you safe


From my Two-Year-Old

“What is it like that mommy has accidents?”

Autumn: Beans and doctors. Doctors give you beans

“Do you get scared?”

Autumn: mmm (did not want to respond)

“How do you feel about mommy’s beans?”

Autumn: Your beans, B6 and Keppra! Can I help tomorrow?”


What can I do to keep them Safe?

  • Dress/change young children on the floor
  • Bathing young children on a mat or towel and give them a sponge bath
  • Get a wrist attachment for a stroller or purchase a jogging stroller (typically comes with one)
  • Feed a baby/young child in the lowest position possible. If breastfeeding, feeding them in bed is a good option
  • Keep your house as hazard free as possible (“baby proof”) if the little ones are mobile. That way if you are alone, less of a chance they will get themselves hurt.
  • Keep medication in a secure place away from little hands
  • Develop a seizure action plan if the child is old enough and if you feel is necessary
  • Have emergency contacts posted somewhere for easy access for older children as well as what to do during a seizure
  • Do not be afraid to ask for help if needed after a seizure. Your health and your child’s health are key priorities.
  • Reduce your own risk of having seizures by taking care of yourself!

Feel free to leave your thoughts, comments, or experiences below

Pregnancy with Epilepsy

Warning

Before I get into this I will place a warning for anyone who has had miscarriage. I will place a warning for anyone who does not feel comfortable about reading about loss. I will do my best to keep that section short. But there is a positive outcome. I promise.


pregnancy-and-birth-defects

My Experience.

So, if you have read some of my older blogs you will see that my first neurologist advised me to not get pregnant.  At 19 years old, with dreams of being a mother – sorry, you have Epilepsy in the form of generalized tonic-clonic seizures. Of course, some of you may know that I did not listen too well.

I am very keen on researching. I like to know what exactly I am getting myself into before I do it. I decided to look up pregnancy and Epilepsy and saw some sites recommending to take folic acid. There was and still is a lot of research promoting it. Fun fact: Folic acid can reduce the rate of neural tube defects by more than 70% (https://www.health.ny.gov/publications/1335/). These defects can be associated with antiepileptic drugs (AEDs) so many obstetrician/gynecologist  (ob/gyn) and midwives will suggest folic acid when you are trying to conceive.  The trick is to start the folic acid BEFORE getting pregnant because a lot of development happens in a short amount of time before you typically discover that you are pregnant. Some sources suggest starting folic acid a month before you start trying to conceive. I started folic acid when I started Keppra, so it was a few months prior.

But how much do you take? Again, recommended standard according to the Epilepsy Foundation is 400 mcg (0.4mg – http://www.epilepsy.com/information/women/all-women/folic-acid) to start. The dose will vary depending on your dose and type of AED – always good to visit an ob/gyn prior to conceiving, but if not starting on 400mcg (0.4mg) is a good place to start. This is where I started along with taking a prenatal vitamin, but when I finally saw an ob/gyn and had a new neurologist, they placed me on 1,000 mcg (1 mg) of folic acid. That was a big jump that I was not expecting.

It took a few months before I saw a positive test. I was not really sure if this was due to the AED or just coming off birth control. I was honestly fed up and about to stop; maybe my neurologist was right. Then one morning, I saw the strong pink lines, it was positive and I was over the moon. I could not believe this was finally happening. Then slowly fear sunk it – now what? At the time I was living in North Carolina, I quickly set an appointment up for my first visit with the local ob/gyn. After about two weeks I noticed some abnormal bleeding that soon turned bright red. My heart sunk; due to my studious nature, I already had an idea of what was to come.  I tried to ignore it and hoped it would go away. Every day it got heavier and eventually I ended up in the emergency room. I will never forget sitting in the ER with my head low, embarrassed. I sat quietly  for  hours until my eventual miscarriage occurred and the hospital ‘confirmed’ it. My heart broke. I felt like I was not a proper woman, that maybe I was not healthy enough to bare children after all. I tried everything to make sure I had a healthy pregnancy and still failed. I was filled with disappointment, anger, and just sat and thought “this is because of Epilepsy.” I was mad at myself, now wishing I had listened to my neurologist. Wishing that my Epilepsy would go away. Now I had to set up a new type of appointment with the ob/gyn; one I was dreading.

With fluctuating hormones in pregnancy it can produce or reduce seizures. My appointment was only a few days later and in the office it happened. I had a tonic-clonic seizure in front of everyone. Last thing I remember was standing in front of my partner at the time, next thing I knew I woke up in a hospital. If I was not embarrassed and disappointed enough to be there for a miscarriage, this topped the cake. They told me it was due to the ‘dropping’ of my hormones from the miscarriage. Wonderful, two things I did not want to talk about or deal with, but now I had to.

About a month later I was still spotting. I was confused. I thought maybe my body got really messed up from all the stress and went to a walk in; they confirmed I was pregnant but looked baffled when I told them my history. They immediately sent me to the ER. There was no way. I did not engage in any type of activity as everything that happened sent me into a depressive low. The ER ran blood work and the doctor came in and looked at me apologizing “actually, you have been pregnant this whole time. I am not sure who told you that you miscarried, but you did not miscarry completely.” He told me he thought I miscarried a twin. At this point I was over trying to have a child, I had no idea how to react. My partner’s face turned white and I was in utter shock. He went on to tell me my seizure was due to the rise of hormones and immediately checked to make sure everything was okay by ultrasound. Now what? I asked the doctor is the seizure would affect my child. He could not give me an explanation if the seizure would and started to avoid eye contact. He said there was not enough research to guarantee a healthy baby. Now what?

I moved back to my home state and immediately got an ob/gyn. A hospital in another state oversaw my pregnancy as they were preparing for the worst case scenario due to having Epielpsy. I had to go to weekly neonatal stress tests at an earlier rate than a typical pregnancy, had to see a genetic counselor due to my family history and to go over possible birth defects from Keppra, I was told a cesarean section (c-section) would be a better option as there is a risk I could seize during labor, and I had to go to different cities and out of state for more tests to make sure my baby would be okay. There was a plan made if the baby needed a neonatal unit, there was a plan made if I seized during delivery, there was a plan made if I needed a C-section – plenty of plans, but nothing really made me feel safe or consoled my worries for my child.

The day of birth came. It ended up being a scheduled c-section because my little one was breeched – the doctors were relieved almost by that. I was very adamant on wanting a natural birth. I was also adamant on breastfeeding but was told not to as the effects could be harmful with the medication; there was not much research done. Although, at the end of the day, I can happily say I gave birth to healthy baby girl and that is all that mattered. Although, after the c-section my body was trembling and they thought I might have a seizure so I could not hold her right away after the initial meet.

Fast forward two months, guess who had another seizure? Guess what that meant? I was pregnant; already about a month pregnant by that point. Again the same fears flooded back but there was some reassurance since the first time went alright. Doctors were well prepared after having my first child. There was no way out of a c-section this time with how close they were. Now I did not mention this the first time around as I came back halfway through my pregnancy but they increased my Keppra with both pregnancies. It was some time after the first trimester that the dose went up. They checked my Keppra levels more frequently to make sure I did not get to a toxic level as this could harm the baby and myself. I was still on folic acid from before as I requested to be so there was no change there. This pregnancy flowed a lot better because they were well prepared. Again, a second hospital out of state watched over my pregnancy. Again, I had to travel out of state for testing. I was placed into a research study on the effects of Keppra on pregnancy this time around, still no new information could be given. Everything went fine..until birth.

Now I am not sure exactly what happened but I remember being halfway during the c-section and feeling dizzy. I remember my body temperature dropping and I started shivering. My heart rate and blood pressure was doing something they were not supposed to because the nurses had a look of concern across their face and kept asking me “are you okay? keep your eyes open okay” There were student nurses in the room and they whisked them right out immediately. They hurried their way through the c-section and started pushing things through the IV I did not remember from before. They started getting concerned I might seize and did everything to get my temperature back up and body under control. All I could think was “please don’t seize, not now, keep it together.” Luckily nothing came of it. Again, another healthy baby girl. But I guess my first neurologist had a point, it can be risky to give birth with epilepsy.

Again, a month or two after the birth I had another seizure. This one scared me. I did not remember where I had my newborn last. I had no idea if I fell with her. I had no idea if she was in my room or hers. I had no idea where I even was for a few moments. I rushed in and out of rooms and saw both my children asleep peacefully in their separate beds. They were safe. I sat by my door and just cried. I knew it was not going to be easy, but I did not think it was going to be this tough. No, I was not pregnant this time. It was due to the fall of the hormones.


What to remember if you are planning to conceive

  • Seek an ob/gyn prior to becoming pregnant and trying to conceive as well as informing you neurologist. You want to set up a plan and you want to make sure you have enough folic acid to promote healthy growth of the developing fetus and some studies show this can take about a month prior to build up enough in your system. You will also want to take prenatal vitamins to make sure you are getting enough nutrition not only for yourself, but your little one too.
  • Do not stop your medication if you become pregnant. While the possibility that some sort of defect or issue can occur is scary, what can be more worrisome is not knowing how a seizure effects a fetus. You need to be as healthy as you can be and take care of yourself first and try to limit the amount of seizures/seizure activity you have
  • Pregnancy will affect the amount of medication you receive. As the pregnancy goes on, you will more than likely see an increase like I experienced. This is due to multiple factors involving pregnancy – including weight changes, hormones, and the developing fetus.
  • If your seizure have been well controlled – do not be afraid to ask your specialist if you can decrease your dose before trying to conceive. This might ease your mind and limit stress levels but even if that is not an option for you, you can still go on to have a healthy pregnancy.
  • Breastfeeding is possible – but discuss this prior. Some medications advise against it as the effects to a newborn are not well known or are known to have adverse side effects. There are options such as trying a different medication, lowering the dose, temporarily coming off the medication, donor breast milk, or doing formula if none of the option are applicable.
  • Do not be afraid to ask questions. This is new and can be a scary experience. Feel free to ask all the questions you need.

Facts Behind Epilepsy and Pregnancy

  • 15-30% of women will have an increase in seizure activity in the first and third trimester
  • Seizures that occur during your menstrual cycle will no predict if you have an increase in seizure activity during pregnancy
  • Women who have been seizure free for 9 months prior to pregnancy have a high chance of staying seizure free during pregnancy
  • Partial seizures do not carry as much of a risk as generalized seizures. Tonic-clonic generalized seizures carry more of a risk to mother and baby if a seizure was to occur
  • Most specialist feel that AEDs are a safer option than risking a seizure
  • There is a 4-6% chance that a malformation may occur that cannot be predicted
  • Family history of congenital malformation will raise the risk of a malformation occurring
  • Vitamin K may be give to women with enzyme-inducing AEDs in the last month of pregnancy
  • 90% of women with Epilepsy go on to having healthy babies

For more information visit:


What is your experience with pregnancy and Epilepsy? Leave a comment below!