Purple Day 2017 – Don’t Fear the Purple

Purple Day was started in 2008 by a nine-year-old in Canada by the name of Cassidy Megan. This is a day that those with Epilepsy and those who support us come together and spread awareness. This day is observed globally each year on March 26th to show support for our fellow warriors. While Epilepsy can be a wild ride and sometimes intimidating, know that you are not alone. Here is a a little reflection of my journey with Epilepsy and with a quick search of #PurpleTogether, you can find other inspirational stories about those who travel a very similar road.

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Th Beginning of a Journey

I was 19-years-old when I was first diagnosed with Epilepsy, which was six years ago this year. I was a performer with InProv Winter guard, switching into a new college, violist for New Bedford Youth Symphony, and heading out with friends every weekend without a care in the world. Then out of left field, all of that changed – worst part is, I cannot even remember what happened.

Last memory of that day prior was going to a cookout with my friends from InProv and taking a quick stop at Target – next thing I remember, I am in a hospital bed with my friends’ staring horrified and my father just arriving. I had no idea what hospital I was in, what time or day it was, why I was there, could not recall names, and slowly I began to panic.

When I was finally proved to be alert and oriented, the doctor came in to explained what happened. My friends then started stating what they witnessed and at that moment everything was a daze. I remember my dad’s face turning pale, my friends’ were still in shock – now what? I was told I had a seizure in my friend’s car, while she was driving. She immediately pulled over and called 9-1-1 and luckily a nurse pulled over to aid me and them through my first seizure. I had blood coming from my nose, convulsing uncontrollably, completely unconscious, and let out a scream before the event took place. My tongue was currently swollen, I could not remember even getting back into the car and at least an hour or two had passed and I do not remember anything since being inside of Target, which was 20-30 minutes before the seizure. My behavior was fine, I acted normal, then suddenly I screamed and everything took place. The doctor stated I experienced a grand mal/Tonic-clonic seizure. Then quickly reassured me that it was probably a fluke…at least so he thought.

I continued life as normal, of course my parents were quite hesitant. Both my brothers had seizures, although only in early childhood. I grew up around having to help my parents care for them and the painful wait for paramedics. I was already well aware of this life, but their seizures were not like mine – and that was concerning; this normality became unfamiliar. Then about a month later, it happened again.

I was in the bathroom, last I remember I had just entered the bathroom. I was told I let out this scream that you could not  ignore. The dogs started going crazy and my parents began trying to unlock the door. I bet you could guess what happened; I was seizing in the shower. My dad worked on the door while my mom called 9-1-1; they had no extent of my injuries or if I was submerged in water. Paramedics arrived and my dad went with them and yet again, my next memory is waking up in the hospital – but it was different. I did not feel like I was all there. I was way more groggy and confused. I remember my dad pleading with the nurse to not leave me alone as she sent me for a urine sample. I asked her if I should leave the door open, to which she stated I did not have to – I would not have another seizure. 19-year-old me who was desperately grasping for independence shut and locked that door because of that RN told me. Well, guess who again let out that scream in a locked bathroom? Guess how many security guards came to knock that door down? Guess who then got placed in a medical induced coma?

(Once I woke up from my slumber)

A bit over 12 hours later, I finally woke up to my friends and parents surrounding me. I guess they have been there a while, they all took a deep breath in to see me open my eyes. I was convinced it was still the previous day, my dad opened the windows and everyone kept telling me it was a new day. My dad told me what happened in the ER after I went to the bathroom.  He was upset and angry, he knew as soon as a code was called, it was for me. I just sat there, staring at my hands and the wires thinking, this is now my life. This was not going away, this was not a fluke – this is now my life.

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The Sun still Shines

For quite some time, it felt like Epilepsy did nothing but slow me down. My memory has worsened over the years, I can not work as much as I would like, I interfered with my children’s sense of security, I almost lost my own life, and I am no longer graduating with my peers. But in the grand scheme, things were not all that bad. For every negative, there is a positive – you just have to look for it.

Met my wonderful Partner – His name is Adam. He looked passed my diagnosis, accepted the fact I was a single mother trucking through school and working a basic job. When the seizures came, he stood by me and took us in as well as his family, just so I could rest even if my stubbornness fought hard against that. He reminds me that I am only human, that I am still like anyone else. For someone with Epilepsy, sometimes that is exactly what we need to hear. We are people too. Even with my waning memory, he is patient with me and even aids me. He is a reminder that I am safe and I am not alone. When my medication side affects decide to take over, and I will never forget this, he held me. He reminded me this is not me and he knows that. He reminded me that no matter what, we will get through this and we will get me. For the first time, someone understood. He understood. I will never let that memory fade.

Friendships Grow – I have made some wonderful friends through Epilepsy – whether it was through support groups or becoming close to those around me already. There is one person I would like to mention specifically, that is my long-time friend, Maria. She may not know it, but she did pull be out of a spiral. After my accident in 2016, I was lost – I worked very hard for 4 years to be told I could no longer continue because of something I cannot control. My daughters’ would cry every time I left the house thinking I would not come back or come back in blood as I did that time. My partner was worried about me when I would not respond – as that is what happened shortly before the seizure. I had a lot of guilt that became depression – I also had anxiety flaring up alongside it. Maria stood by me, she listened, and she pulled me up – probably unknowingly. She got me back into music which was a huge outlet for me growing up, she made more of an effort to check in, she came by now and then, and she brought me back into reality. There is a lot I never say out loud, but she still understood. I could never thank her enough

Passion for Pediatric Nursing Grew – I always liked pediatrics, but I had an amazing experience in Maternity and though perhaps that was my calling- until pediatrics. I will not forget the amount of children there for their first seizure or had been diagnosed with Epilepsy already. These children were afraid, theses families thought of it as a dead end, and in that moment, I imagined my family. I remember being in their shoes, just older. I took time with these patients, one patient I walked with around the halls just talking about Epilepsy and our seizures. They were grateful, they had hope, they saw a light – and I will not forget that. If I could instill that in more people, I could never complain about my job. In that moment, I found my calling.

Family Growth – Although, I hate to admit my girls may of had to grow up quick in some aspects and I see it every day in my oldest. Once they were able to grasp that mommy had “accidents” (what they term seizures), they had never left my side. My oldest does not like the idea of me sleeping alone, she sleeps besides me when my partner is not there. My youngest watches and reminds me to take my medication, she even learned which bottles were which. They grew interested in the medical field, my youngest always dressing up as a doctor during play time. My oldest is always hugging me and reminding me that “it’s okay mommy,” and I have her. Each moment we truly cherish, even at their young ages. While yes, I have a lot of guilt their first memory will be mommy being unconscious and convulsing, I am thankful for the bond that formed.

Meeting Fellow Warriors– It took me a while before I started seeking support from others with Epilepsy that may be around my age. For a long time, I wanted nothing to do with my condition and wanted it to just go away. I went through being made of, losing my independence, losing my license, almost losing my job, and feeling like I was incapable of functioning on my own. That was far from the truth in reality, but at that time, that felt like my reality. I struggled alone for quite some time, then I finally found support within a group and a girl I met online. Along with others we formed our own support group and it has been nothing but a blessing. We are able to be there for others so they do not have to struggle alone and we are there for each other when we go through times of darkness.

Gaining Self-Confidence – I chuckle when I reflect on how Epilepsy gave me confidence after turning me into a hermit. I was at a low that no one quite realized, but as I grew with Epilepsy – I started to gain confidence and resiliency. I became determined to not let it stop my ability as a mother, student, partner, and musician. I became determined to prove that I can still take care of myself and work. I stopped listening to the negativity that surrounded me. I wanted to be more than my illness, I wanted to be me. Of course, I understand all of this is still within limitation, but I can still have a fulfilling life.

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Remember, you are never alone

At the end of the day, at this present time, Epilepsy is here to stay for most of us. Whether it is having seizure or the side affects from medication and repeated trauma, it will be part of us forever. We must learn to embrace it and spread awareness in hope that one day, there will be a cure. Embracing Epilepsy can be hard, but you are never alone. Take a look at the #PurpleDayProject – support came in from the United States, to the United Kingdom, to Austria, and back again. There are support groups for just about every country and region. There are support groups online, in person, and wonderful medical professionals out there who will help you along your journey. You are never alone.

Your journey is what makes you,  you. We will have bad days, and we will have good days – that is human nature. It is okay to not be okay, it is okay to wish for a different path. Just remember, you are here because you are a warrior. You are strong and you are reliant. You did not  choose to give up, even if you were on the brink of making that decision.  Cherish the moments of happiness and embrace the moments of sadness with positivity.

You will prevail.

Promise.

Fear of Permanence

A fear that I did not know existed within me.  I do not like change too much either within my personal life, but permanence terrifies me. This fear for me rises from anxiety with the idea that good and pleasant things will fall through. It also rises from a fear that I will not be able to change something I do not enjoy – but instead, find a way to make it mediocre.

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Epilepsy is permanent. Have you ever imagined waking up one day, knowing you will never get better? Imagine being told that at 19, just a few months into being diagnosed with something completely out of left field. There is no magic pill to erase it, just to tolerate it. There is no guaranteed surgery or interventions. All you have is hope. To hope it gets better, to hope it becomes tolerable, and to hope it will not be your downfall. Coping with the permanence of Epilepsy is exhausting. For some, yes – they do “grow out” of it and able to live a normal life; very common for childhood diagnosis depending on the type. Some live completely seizure free with medication. Some do have success with surgery. Then there are some that may have less seizures, but they still come. And for the unfortunate few, nothing helps.

Even if we are not actively seizing, we still suffer. Epilepsy does not end when the seizure ends. For myself, head trauma is included every single time accompanied by blackouts and lost memories. With each seizure the time to recover is longer and lack of memory worsens. Then let us not forget the pills that lessen these events – they slow down cognition processes and understanding. They too affect memory storage. Then there are the mental health side; both condition and medicine induced. Sometimes we lose ourselves for the sake of tolerable life.

This is permanent for most of us. This is permanent for myself. There is no reversal; my memory will not come back. Memories lost will need to be triggered and constantly triggered to reform them. Without medication my learning processes may improve, but will equally be hindered by seizure frequency. Perhaps the constant seizures would have a worse effect. My family has been permanently affected and opportunities are forever missed. This is our reality.

  • “Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these” (source)
  • “The overall risk of dying for a person with epilepsy is 1.6 to 3 times higher than for the general population” (source)
  • “Epilepsy-related causes of death account for 40% of mortality in persons with epilepsy” (source)
  • “Neurologists say sudden unexpected death in epilepsy (SUDEP) is second to stroke as a cause of years of life lost because of a neurological disorder” (source)
  • Tonic-clonic seizures are an important proximate cause of SUDEP” (source)
  • SUDEP takes more lives annually in the United States than sudden infant death syndrome (SIDS).” (source)
  • Perspective wise: 47,055 people died in 2014 from drug overdoses of various types and 35,398 from motor vehicle accidents in the U.S. (source). Epilepsy takes 50,000 lives each year (source).

These are permanent facts we have to live with every single day. These facts have not changed and without support and awareness, will not see a change. All we can do is hope and confine in those close to us in our times of weakness.

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March 26th is Purple Day; a day in which we must raise awareness for Epilepsy. A day in which we must take a moment to realize that such a common phenomenon is underfunded and takes lives without notice. We deserve more than mediocracy.

Wear your purple with pride

 

 

 

Parenting with Epilepsy

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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.


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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!

Relationships and Epilepsy

getty_rf_twofinger

My Experience

“Five years with Epilepsy, you must of went through a lot!” You are right, but not in this department. I have had two relationships from my diagnosis till now and hopefully no more (hint hint, haha). Relationships can be hard and difficult for the average person, but what about dating someone with Epilepsy?

When I first got diagnosed with Epilepsy, it was the right before the start of a new relationship. I was struggling to accept the diagnosis at this point, hiding it from everyone I could and only telling those who had to know. So when I started dating this new fellow, I was not sure what to say or how he would even react. Well good thing for me I did not have to tell him; I actually had a tonic-clonic seizure right in front of him within a week of dating. Thankfully, he kind of knew what to do and we were at his house with a few mutual friends. I eventually came to and I still remember how pale his face was. I must have had a dazed look as I struggled to recognize the faces around me. He started pointing to our friends asking their name and then pointed to himself and I remember yelling out “some dude that I’m dating…I don’t know, I can’t remember, but I know I am dating you” (this became a running joke between us for a while). The next morning, we had a little chat about Epilepsy and my seizures. He was intrigued and concerned, but reinforced me that it was okay and he wished I told him sooner. He willingly drove me to and from work so I could keep my job, let me sleep at his house so it would be a shorter drive and I could have more sleep, and wrote me notes every day when my memory started to fail me. Now I cannot say he was always this sweet. Eventually the epilepsy became a common occurrence before it was under controlled. Side effects from the medication had put stress on our relationship as well as welcoming two children. The pregnancies actually triggered seizures as well as stopped my seizures and that was a terrifying and stressful time. We eventually went our separate ways for very good reasons. Although, one reason on my behalf involved my Epilepsy but that is a story for a different time.

Now with my second and current relationship, things were little different.  I was now a single mother with Epilepsy and in college. To me, I felt like this was already a lot of baggage to be bringing someone. I was always very open and not afraid to tell people I had children at the age of 22. I told him that right off the bat without a care. They were my world. But when it came to epilepsy I hesitated. He already took one suitcase, can he really take another? My seizures were controlled at the time and not frequent. When I went to tell him I made sure to emphasize that part and he was not fazed by it. He told me how he had family in the medical field and he actually went into telling me about his medical problems. It was actually really nice and he made me feel accepted.  It was a while into dating before I had a friendly reminder that I have Epilepsy, but it occurred in my sleep while we were apart. I dreaded telling him but I did the following day. He asked if the girls were okay and told me we would have a relaxing weekend together. A few months later I had another nocturnal, I had always had my myoclonic jerks, and then I finally had my typical tonic-clonic seizure while bathing the girls. This is when he started to really worry.  He worried with the others too and with every jerk, but the severity of the tonic-clonics and the what-ifs worried him more. This was his first experience with my typical seizures. I went on to having a nocturnal again the beginning of this year and he begged me to get a new neurologist as I was fighting to see the one I had at the time. Eventually the next tonic-clonic hit and sent me into a brick wall. That was it for me. I went right to a neurology clinic and got seen the following week.

Now this has put some stress overtime on our relationship. He was constantly worried about me as I still had driving privileges prior. He would be sure to text me and I would be sure text him that I was okay and made it to where I had to go. He would call me every night and every morning. He told me about the day I crashed my car a little later; “I didn’t hear from you that you got to your friend’s house and I started to worry, but then I told myself ‘she’s probably busy studying, she’s always alright’ and you weren’t. I still feel awful. I love you” and tears fell from both of our faces as I never truly understood he was so worried. I typically try to push Epilepsy to the back of my mind. It was not until my pediatric rotation I started to be a little more open and it was not until the accident that I truly stopped caring about judgement with coming forward. This is our reality and people needed to know.


My Boyfriend’s Perspective

You having Epilepsy did not bother me, that does not make you any different. I think the hardest part is the side effects of the medication; I noticed the difference as soon as you started them. It can be stressful. Yeah, I worry every day that something is going to happen to you or that could potentially die; but I know that can be avoided. With the medication, I do not know how to help you with your side effects. I am not sure what to do sometimes. Epilepsy itself does not make you different.


So what do I do?

Be honest – First and foremost always be honest, and tell them BEFORE a seizure happens. If they truly love you or want to be with you, they will want to be with you no matter what. If their opinion changes of you after you tell them you have epilepsy, do you really want to be with someone like that? You deserve better, much better, and there will be better out there for you. You do not need someone like that in your life.

Take the time to explain – Do not just walk up to your partner or potential partner and tell them you have Epilepsy and walk away. Sit down with them and explain to them the type of seizures, the frequency, what they should do for you, and what the medication you take is and potential side effects from them. This will help alleviate their stress and give you a peace of mind. Also, if you ever had a seizure in front of them they would be well prepared in knowing what to do and this could help give them a sense of confidence about your condition. I know it may sound overwhelming but honestly if they are a good person and are right for you, they would listen because they care.

Do not settle – I did not quite mention this but there was a point in my first relationship where I settled. I literally said to myself “who else would want me, I have Epilepsy.” I had a hard time accepting the diagnosis myself and did not have very good experiences with telling others. I felt like no one would ever accept me, so how could they possibly attempt to love me. But trust me, they will, someone will – I promise.

Take care of yourself – Sometimes we do need help, other times we do not. But knowing a seizure could happen without warning can be a stressor for both of you. Be sure to take care of yourself first! Take your medication, avoid triggers when possible, go to your regular appointments, and be on top of your care. This will allow your partner to relax and let you relax too knowing you are doing your very best to prevent a seizure from occurring.

Do not let Epilepsy stop you – Do not feel like you are any less deserving of dating or a good relationship just because you have Epilepsy. You can still go out, you can still enjoy yourself, and you can still enjoy the company of others. You are just the same as everyone else – you are beautiful, you are deserving, and you are amazing.


But wait, when do I tell them?

There is no set time limit on when to tell someone and this varies depending on yourself and when YOU feel comfortable. For me, the first time I was in denial – I probably would have waited a long while before telling him if my Epilepsy did not beat me to it. For my second relationship, I figured I might as well lay it all out on the table. At this point I learned if someone could not accept me for all of me, then I deserved better. I told him in the very beginning – perhaps even at our first date – that I had Epilepsy.

Remember, it is entirely YOUR choice when you tell someone. It is not an easy topic for some to talk about but do keep in mind it also may affect your partner the longer you wait. Just know that no matter what, they will still care for you and love you. They will also be mindful of your feeling about the topic. And if they do not, then take the advice a friend once gave me from a picture she had found:

“Some people will only love you as long as you fit in their box. Don’t be afraid to shove that box up their —”

(well, you get the idea)

Keppra Toxicity

Accidental Overdosing.

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                If only we lived in a perfect world without mistakes or errors. If only people took the time to listen or reevaluate their decisions. But this is not the world we live in and none of us are without error. What is important is learning from past mistakes and educating yourself about warning signs and how to prevent them if possible.

                When I first got diagnosed with Epilepsy in 2011 at the age of 19 I had already had about 3-4 tonic-clonic seizures within a month. Some I told people about, some I suffered in silence wishing they would go away. There might of even been more but you see, this is when my overdose happened. Part of my life is nothing but bits and pieces. Part of my life I struggle to recall and perhaps also one of the most important parts because this is how it all began. As years went on, more seizures occurred, and side effects from medication began taking their toll, it became even hard to recall the event that occurred that year.  Excuse me if numbers and figures are not exact relating to dosages.


My Story

I had started a new job that I loved, got into a new relationship, connected with old friends, looking into starting college – things were going good; aside from being recently diagnosed with Epilepsy. For me, that was the elephant in the room. I should have been happy with myself and with life, but truthfully I was not. I was started on Keppra after my first seizure or two at a low dose of 500mg twice a day – this is usually the standard starting dose. I listened to the lecture of how I should not drink, reconsider pregnancy, and be careful in my everyday life. I should not drive, I should take breaks when needed, and I should go easy on myself. Most importantly I should NEVER miss a dose. And I never did…perhaps that was the problem.

I obeyed my neurologist word for word. Avoided grapefruit and cough syrup. Took my medication on time, but that did not always stop the seizures. Every two weeks I went back and he increased my dose. Higher and higher it went. I do not remember what my last dose was from that time period but I remember it being a pill and a half in the morning and a pill and a half at night. At this point something did not feel right. My seizures were sort of under control, but something else was going on.

My job became a chore that I dreaded. I could no longer remember how to make drinks or where things were in the café – mind you I have been here for a little while now. My coworkers did not want to work with me because I took “too long” and they felt like I was a responsibility. They started calling me the “seizure girl” and notice I had a little tremor. Eventually my name became nonexistent, I became “seizure girl.” I would forget constantly when I had to go in or what time my shift started. My manger became curious what was going on and I would simply reply “I do not know, but don’t worry, I’m fine.”

Being awake became a task. I was always so tired and wanted to nap. It was hard to learn new things – probably due to the memory lapses and generally feeling “slow” – and I began giving up on going to college. How was I going to manage school when I could not manage my life? Remembering the previous day started to become a task. Have you ever saw 50 First Dates? That was basically my life. My boyfriend would have to leave me notes or else I would not remember he had left for work. He would leave me notes of what we did or talked about the night before. He would leave me notes about my work schedule. Slowly I began not to remember conversations or places I have been and it began to scare me.

What was going on? Was I dying? Did I have a brain tumor? I became frustrated and lashing out at people. I did not want to leave the house or go out in public. Coworkers began to tease me more as it got worse and I would try my best to hold it in. Simply being alive felt like a chore. I was fed up with having to do daily task such as shower or eat. I had no will to function. I had no will to try and socialize. Eventually everyone started to notice. I became a zombie. My memory was nonexistent. I could not recall names at times or words I wanted to say. I barely remembered to take my pills. One day I decided to look up the side effects in detail:

“Max recommended dose: 3000mg/day. Side effects: SUICIDAL THOUGHTS, aggression, agitation, anxiety, apathy, depersonalization, depression, dizziness, hostility, irritability, personality disorder, weakness, drowsiness, dyskinesia, fatigue, coordination difficulties, STEVEN-JOHNSON SYNDROME, TOXIC EPIDERMAL NECROLYSIS” (Davis’s Drug Guide – side note: I capitalized life-threatening side effects)

Alright. So the lack of desire for daily functions and constant sleep made sense, but what about my memory? What about this tremor? What about not being able to find the words I want to use? I am 19 year old, I should not be like this. I was an honor student. I was in advance placement classes. What was wrong with me? I started getting anxious and paranoid at work. I did not want to be there. I no longer cared about work or being in a relationship. I did not care about going back to school. I honestly did not care what happened to me. Then one day I woke up – suddenly I cared. Frantically, I called my neurologist and demanded a blood test – they asked me if I had any recent seizures and they said “your dose is fine then, it is the side effects.” Paranoid still, I moved onto the next in line, my primary care physician and he gladly agreed to do a blood test to check my levels.

For the next few days I anxiously awaited that phone call. Was this me or the medication? Am I just crazy? Is all of this a dream? I was constantly checking, just waiting for the call…then finally it came. The conversation went something like this:

                “Is this __________”

                “Yes..”

                “We have some news for you, you blood draws came back”

                “…yeah..”

                “Cut your dose in half immediately, your Keppra levels are too high. Something is not right and we will notify your neurologist right away. Please do not continue your prescribed dose and make an appointment as soon as possible. If things worsen, come in right away, this is atypical.”

                “..huh….”

                For a minute my world was spinning…what just happened? I was not understanding. What do you mean my levels were too high, my neurologist knows best…so I thought. “It is basically an overdose – it has not made its way to your respiratory functioning yet but if you keep take your prescribed dose it could progress.” All I remember is replying with “oh.” I did not know how to feel. So what do I do? Cut my dose and endure seizures repeatedly? Do I deal with this until I can speak to my specialist and hope I do not end up in the hospital? Now what.

At that point it was too late to cut my dose I already took my pm pill and then next day I still took my usual dose…what did that nurse know? She was not a specialist. So what if something happened, I am sure the hospital could fix it…right? Or maybe this medication was doing everyone a favor. Maybe I should keep this dose. I felt like I was a burden to everyone around me. Maybe this was my fate. Something changed the next day and I immediately called my neurologist, but things were different.. this I do recall:

                “Can I speak to Dr._____”

                “Sure what is your name? Hold on.”  (few minutes had pass) “Hello? Actually…on second thought he does not want to take the call at the moment but you can speak to me. He knows this is about your levels.”

                “..Okay…so what do I do?

                “What do you mean?”

                “What do I do? Should I lower my dose?”

                “I cannot tell you what to do, I am not your prescriber.”

                “Can I talk to my prescriber”

                “He does not want to take your call today.”

                After this game of back and forth and her telling me she cannot help I hung up. So NOW what? I closed my eyes and swallowed my next prescribed dose and called the office again. Same nurse answered I presume. She had the same story. I tried to book an appointment but he was “too busy.” I then purposely left voicemails for appointments and callbacks – nothing. They wiped their hands clean of me. So really, now what? What was I supposed to do? I sat down and thought about it…is this really my fate? Should I listen to my primary care physician? What do I do? I sat down and planned out how to wean myself. Against medical advice, I weaned myself off of Keppra. I also had to look for a new neurologist. And luckily, it did not end worse.


About Keppra Toxicity

Now I can only speak from personal experience and I can tell you what websites say.  Symptoms according to websites include: extreme drowsiness, agitation, aggression, unconsciousness, difficulty breathing, shallow breathing, and coma. I did not have an extreme case nor did it last long enough to get worse. Symptoms from other people include: mobility changes, stuttering, changes in speech, changes in memory, and increasing difficulty with processing information. I was never told how high exactly my blood levels were but it was enough to affect me. I was a small girl at the time, 5’1 and barely 100lbs. Dosages are different for everyone as well as how the medication may affect them. My side effects that told me something was off: severe memory problems and trouble communicating. I cannot definitely say the tremor or issues with learning was completely related to the high Keppra dose. My mood definitely got worse but I cannot say for sure again if that was toxicity or because everything happening at once. I also developed a little bit of a rash as well as the dose increased. It is hard with antiepileptic drugs (AEDs) because a lot of what are usually toxicity signs for other medications are what AEDs usually cause. If you EVER feel like something does not feel right or something is off, do NOT hesitate to phone your neurologist or primary care physician. If they do not listen to your request, do not hesitate to ask for a second opinion or go elsewhere. Always advocate for yourself if something does not feel appropriate.


Do you have any experience with Keppra Toxicity? Leave your story below!

You do not own me

Dear Epilepsy,

I hope you are happy; for once more you got in the way of my hopes, dreams, and plans. I planned on graduating in May 2016 with my nursing degree and moving forward with my peers. I planned on trying to get into a pediatrics position while specializing in neurology or oncology. I planned on moving in with my boyfriend and having a proper home for my girls and finally having our family together. But life does not always go as planned.

I now sit at home during what would be my class time. I see posts of people in their scrubs, talking about exams, and anticipating graduation. I sit here alone, while my children are at school, truthfully envious but proud. You all worked so hard to get here and you all deserve the best. But I cannot help but wonder what I did to deserve such a delay. To deserve watching everyone move on without me. Where did I go wrong? Am I not allowed to have dreams?

Epilepsy, you do not own me, but you unfortunately may still have some control. You have stunted my growth in my studies and in my experiences, but you have not stopped me. Epilepsy, I will prevail you and I will succeed. I do not care if you slow my memory down or if I have to read that book three times, I will read it three times more to prove you wrong. I do not care if I have to make extra time to study or ask ridiculous questions – I will ask them proudly and show you I can still do this. My teachers may question my sanity, but in reality they are questioning you. “Will Epilepsy stop her?”

Epilepsy,  you do not own me. I will not let you control my life. I will admit that you have dictated three and a half years and it was not until I saw other patients with Epilepsy suffer the way that I did. They were scared, fearful – their parents were the same. You stopped me from performing, going for jobs, and properly performing tasks. You dictated my relationships, my self-worth, and future plans. You embarrassed me and made me lie. But no longer will you do so. No longer will I hide behind your name. Epilepsy you do not own me.

And for this delay, I will show you no mercy. I will exploit your name and tell everyone about your cruel ways. I will tell them how unforgiving you can be. But you know, you are not all that bad either. You have found me real friends and helped me chose a career path. You helped me find strength within myself. You taught me that asking for help does not make you weak, but makes you strong. You taught me how to be bold and brave and take each day as it comes. You taught me to never take life for granted and live in the moment. Epilepsy you do not own me, but you are part of me. Part of me that I cannot change – but a part of me that makes me who I am.

Thank you Epilepsy.


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“It’s okay mommy..”

An Open Letter to my Daughters

Dear Daughters,

As you grow and get older every day, you make mommy more and more proud to be your mother. I am grateful to have two perfect little girls enter my life. I am sorry mommy cannot be around as much as she likes between school and work; trying to make the best life that I can for you both. But one day, I know you will understand.

What you may not understand is that mommy has a little battle. I know you know how to say the words “seizure” and “epilepsy.” To my three year old, you call it “accidents” and mommy appreciates every time you try to help mommy avoid “accidents” by moving chairs and sleeping by my bedside. To my two year old, you just picked up on calling them “accidents” and you always ask me if I had took my medication. You both ask me to show you each one as you call them “beans” and try to pronounce the name back to me and realize that this helps mommy. I appreciate both of your kisses on my scars from these “accidents” every morning before school and telling me “it’s okay mommy if you have accidents, I love you.”

I know I was “yucky” when I came home but that never stopped either of you from your hugs, kisses, and cuddles. Mommy is sorry she was sleepy and sore and could not be there for you as much for that first week but as you both tell me “it’s okay mommy, you have accidents, I love you.”

When you were younger, mommy had accidents too that scared her. I did not know how to go about telling you when you got older. I was afraid of how you would react to my “yucky” face and having to wait until mommy took all of her “beans.” I was terrified of the day you would witness one. When you were younger you witnessed mommy’s “accident” but you will probably not remember. You thought mommy had fallen asleep until Grammy and Grampy came in. Every day I thank whoever is watching out over me, over us, that you both were okay. Just like how I am thankful you were not in my car when I had another “accident.”

I am sorry you get worried for mommy at the ages of two and three. I never wanted you to be afraid or wonder when or if I will come home. I know going back to preschool was hard for you but you got better and stronger every day. Mommy wanted to reassure you and every day, despite the pain, I came to get you so you would know I was okay. It broke my heart the day you said “Mommy, I don’t want to lose you again,” as much I would love to reassure you that ‘you never will’ that is not always the case. But I will do everything I can so that  you will never lose me. For you both are my heart and soul; there is not a thing I would not do. And I will never forget the words you say to me every day so I can stay strong:

 

“It’s okay mommy if you have accidents, I still love you.”

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This was incredibly hard to write, but this is my reality and now their reality too

One wish

“What is one thing you wish people could understand about your epilepsy?”

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One thing I wish people could understand is that the medication can be just as bad as having epilepsy. Antiepileptic Drugs (AEDs) help reduce the probability of a seizure occurring by reducing and alternating the excessive electrical activity (or degree of excitability) of neurons. Note that different AEDs work in different ways and have  different effects on the brain. Some AEDs may affect how neurotransmitters send messages or how fast the connection is. The medication I am on currently, as many of you may know, is levetiracetam/Keppra. The best part about Keppra is that they have NO idea how exactly this medication works on the brain – but it does not behave like a typical AED. All they know is that it forces brain cells to fire more slowly to prevent a seizure from occurring. Keppra is still, in comparison, fairly new and still needs more research.

Since my AED slows the brain down completely, I feel this is why my memory and comprehension is so greatly affected. It takes me a while now to understand things and this becomes extremely frustrating. I have trouble recalling things which can become embarrassing. I also have issues with getting words I want to say from my brain to my mouth – granted I did have two (well, three I suppose) events to the head that were considered traumatic and this could be why – I still feel that Keppra may be more to blame. I also wish people would understand that the brain fog we feel is real and comes along with AEDs and Epilepsy.


What is Brain Fog?

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       Brain Fog is not a medically used term, but does sum up what most of us feel from time to time or on an everyday basis. Symptoms usually include: irritability, low energy or fatigue, trouble concentrating, forgetfulness, memory problems, anxiety, confusion, low motivation, mild depression, and trouble sleeping at night. I can definitely vouch and say I feel this way daily but not everyone will. AEDs effect everyone differently but it is good to research and know what to expect. Is it manageable? Yes, for some people. You just need to give yourself time and make proper accommodations. But if you feel that this is unmanageable, talk to your doctor. There may be an underlying cause or a better solution.


Stop and Think

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       Before you start bantering at someone who is taking longer than normal to speak, write, or do a task. Stop and think. Do you see a medical alert bracelet? Do you know this person personally? Haven you had a conversation with them? They might be someone with epilepsy or they might be someone with an illness or disorder that cause similar symptoms to the ones listed above. Please remember to be patient with people; for we all have our own journeys and battles that go unnoticed.

 


More Information

For more information or information on your specific medication, check out:

Feel free to leave comments on your experiences or about how AEDs effected people you know, love, or care for

Keppra – levetiracetam

“Well for your age group – its the safest”

       And they are right. At the reproductive age of 24, it has been deemed safe (will link credible article below and there are more articles on that site) than most medications used to treat epilepsy. I even volunteered to be in a trial to study the side effects of Keppra on pregnancy. But man does it make you agitate/angry/aggressive/overall everywhere on the emotional spectrum. 
     Keppra – levetiracetam: onset rapid. Duration 12 hours. Peak 1-1.5 hours. Common side effects: aggression, agitation, anger, anxiety, apathy, denationalization, depression, dizziness, hostility, irritability, personality disorder, and weakness. Life-threatening side effects: Suicidal thoughts, Steven-johnson syndrome, and toxic epidermal necrolysis. Used for: partial onset seizures, primary generalized tonic-clonic seizures, myoclonic seizures, status epilepticus, and neonatal seizures. Can be given by mouth in tablet or oral solution form or via IV. This has been engraved into my mind due to school and being on the medication. I know enough to know the drug can cause these side effects for others but when it comes to myself, I hate admitting the medication has changed me. I wish I was immune to these side effects but it is a sacrifice I take for wanting a “safe” drug. As stated in a previous blog, B6 – also known as pyridoxine, is supposed to help even out the side effects. I am really hoping so because the last two days have been rough.
     I got upset with a worker at a local grocery store because she said I could not go through the express line although I did qualify for the express lane. I got upset with a fast food worker because they forgot my drink and swore at me under their breath. Usually I am very nice and would never say anything to them out of respect but man did I sail right into them. There was no holding back and in the moment I just did not care. Once I left, I felt a little bad and embarrassed I acted that way. I feel bad blaming the medication but honestly since they upped it I just have zero tolerance for people. It is not like I can say “sorry, the meds made me do it” although it may be true. Cannot wait to get through this phase…if it is a phase. 
    My memory is still having some issues. Not too sure if its still from the accident or the medication..time will tell
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(Photo credit: Self – thanks to apps)

As promised, here is a link to one website (out of many) where you can find credible research articles on current medications – such as Keppra – and other things going on in medicine/medical field: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3854744/ 

Let me know your experiences!