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

 

 

 

Embarrassment and Humility: Taking Control

Epilepsy comes in many different forms and strike us in many ways. Some people have auras, which allows them to feel when a seizure is coming on. Some people, like myself, have no idea when a seizure is coming until you wake up in a hospital bed not knowing what day it is or who is around you. But something we can all to relate to on at least one occasion is having a seizure in public. No matter what type of seizure, it can be humiliating, embarrassing, or overwhelming for that person. We all have our own ways with dealing with these type of situations, but here are some tips, tricks, and methods to get you through the post seizure madness.

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Looking at our emotions

Some people may report feelings of embarrassment, humiliation, or feelings of being overwhelmed after a seizure. To help better ourselves and ease these feelings, we must understand where these feelings may arise. Embarrassment itself is a very self-conscious emotion. No one else will experience this emotion but you and not everyone will experience it in the same manner. Embarrassment usually arises from someone feeling as though they failed to act appropriately socially, a sense of guilt or shame, and a feeling as though their guard was let down and their pride was hurt. It tends to be triggered in social situations, like having a seizure in public.  It is also a very socially connected emotion.

In my opinion, having a seizure is a very vulnerable state. You lose control of your body, your thoughts, and your surroundings. You no longer can protect or shield yourself; you can no longer care for yourself and well-being. Your body is just there, on display, for some undetermined amount of time, without you having any control. This can be very overwhelming and trigger a range of emotions. But luckily, there are different ways to deal our feelings.

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Remember: Take Control

How do you take a control when you completely lost control of yourself in front of a crowd of people? People are social and emotional creatures, they will mimic what you project after a traumatic event more often than not. One way to take control is by changing the mood of the situation. One way to do this is by displaying confidence. People will ease their tension and divert attention when they see that you are aware of what is going on and show a level of competency. Everyone will have their own way of taking control of their situation and easing the fears of those around them; another example would be through laughter. While yes, why should you have to worry about how those around you feel; you will find that being able to break the tension and having a sense of control in the smallest ways will help ease your feelings of embarrassment. Even if you only start with taking control of your own thoughts after a seizure, in due time, you will be able to apply it to the masses.

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Laughter

Laughter is the best medicine While yes, there is nothing funny about having Epilepsy or a seizure, laughter can be used as a coping mechanism. If a seizure was to occur around friends or with someone whom you are close and comfortable with, try making light of the situation. I have heard some people say “yeah sorry, my brain malfunctioned” or “what do you mean, you do not pee yourself too?” While this can be very hard for some people to poke some fun at, especially early on in a diagnosis, some people find this a way to deescalate the tension and worry within those around them.

When people see you crack a smile or treat a situation in a relaxed manner, they also tend to relax – seeing it as not an emergent situation. They tend to stop trying to overcompensate for your feelings by being overly concerned and overbearing. Some people want their space after a seizure – a good way to make someone feel safe and give you that space is to make the situation light. This does not have to be directly through laughter of course, one could just simply explain, “oh this happens a lot, nothing new” then point out a positive in the situation. That person or the surrounding people will see that you are handling the situation in a positive way, therefore make it easier for them to feel positive about you.

 How to apply to self: You can apply these methods on a personal level to. Take a moment to lighten the situation from within whether it is through laughter, pointing out positives, or simply telling yourself “here we go again, I got this.” Be positive, be uplifting – you are doing amazing.

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Education

Education? Who is in the mood to give a lecture on Epilepsy and seizures after having one? Probably no one, but there are some beneficial factors for giving a brief synapse of your condition or type of seizures to those around you. Quite similar to what I mentioned in laughter, it helps people ease up and feel confident in your ability to care for yourself. It eases the tension and in return will help you feel less embarrassed or overwhelmed due to being moved out of the spotlight.

Have you ever noticed that nurses tend to give a sigh of relief when they know you have a history of seizures? They are able to make the mood lighter for you and give you the proper time that you need. Aside from the fact that it is probably less work on their behalf, they have confidence that you know what to do to care for yourself. This diverts attention away from you and allows you to reconnect with yourself. This is even more true for the everyday average Joe. If you can show off your knowledge, their attention will go elsewhere and ease the feelings of embarrassment.

 How to apply to self: Remind yourself, you know yourself and your condition best. You know what to do; you know how to manage your seizures. Boost your confidence through what you know. You are a smart cookie, and a tough one at that!

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Getting Answers

Sometimes we get embarrassed when we do not know how things were perceived. The unknown can be quite scary and in the realm of Epilepsy and Seizure Disorders, that unknown realm can be our best unfortunate friend. Finding answers gives us a sense of security and helps us feel calm. Sometimes after a seizure, you need to do just that. Ask what happened, ask who was around, do not be afraid to approach people. You may not see it in the moment, but they want to help – most just do not know how. They are willing to answer and be there for you. They are not passing judgement; although it may feel that way because we did something atypical, yet typical for us. Gain control by getting answers and making the unknown known. You will have a better sense of realizing how people actually feel and that the situation was not as bad as you think.

 How to apply to self: If you are uncomfortable with approaching people, ground yourself. Look at yourself, feel what hurts, see how much time has passed, think of the lease severe seizure you had. Try to answer your own questions by observation and feelings, give yourself that validation that it really was not as bad as you thought. Let yourself breathe.

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Moving Forward

This may be easier said then done for some. How do you just “move on” from having a seizure and becoming what you perceive as a public spectacle?  First, take a moment and breathe. Ground yourself to the present, remind yourself that you are okay. Collect your thoughts and feelings and when you are ready, move one. Literally and figuratively. Just get right back up and keep moving forward. Thank those around you for their help and support, reassure them that you are okay, and walk away like it never happened.

Now, this may require quite a bit of practice and the “fake it till you make it” theory, but there is no reason to linger on something that is not making you feel good. Let your mind move forward, do not dwell on what happened or could have happened, do not put all your focus on the seizure itself – at this moment focus on yourself and your well-being. You are safe, you are secure. This will also no longer make the seizure the focal point. When people see you moving on, they know it is safe for them to move on too. When people see your bravery, even if you must fake it at first, they will be brave for you. You have a lot more control than you think.

 How to apply to self: While even doing this on a personal level only may be difficult, just give it a shot. Let your mind go. Do not get wrapped up on focusing on the seizure and the event, focus on the now and go from there. Prioritize your safety and find comfort in knowing you are still here, you still have a pulse, you still have life left in you. You can get through this, you will get through this. Redirect your attention and focus elsewhere

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Forgive Yourself

You may not feel like you are mad at yourself or that you are blaming yourself, but on a deeper level, that just may be the root cause Even if it is not the situation for you specifically, still take the time to remind yourself, this is part of you – this is NOT you. Epilepsy and Seizure Disorders do not control you or your life. It may try for 5 minutes or maybe even 10-20 minutes, but remember, you are a fierce warrior and you will take your life and time right back and hold onto it longer than it ever could. We cannot control every aspect of our life, with or without seizures – unexpected things will happen, but if we can make peace with ourselves, we are one step ahead.

You are a Warrior.

Keep strong.

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Looking for how to handle with Seizures in Public?

Click the link below!

http://thestorminsidemyhead.com/2016/10/seizures-in-public/

 

Possible Precursor to Epilepsy

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There is not much of a surprise when you hear Epilepsy and Psychiatric Disorders are connected. People would expect that due to receiving the diagnosis or if there was a structural abnormality that may interfere with the brain’s normal processing. There has been a lot of research showing a clear comorbidity between the two. A thought I have always held onto and had not looked into further was if psychological conditions could serve as precursors to Epilepsy. A member reached out to me personally asking if I could do a little research which ended up dabbling into my own questions. I will present to you quick synapses and links to research articles that may make you begin to ask questions.


 

  • Schizophrenia-like Psychosis and Epilepsy: The Status of the Association

Source: https://www.ncbi.nlm.nih.gov/pubmed/9501741

Date: 1998 (yes, technically deemed outdated – but for reference purposes)

What is it saying: Epilepsy may be related to schizophrenia-like psychosis due to structural brain abnormalities (e.g. cortical digenesis or diffuse brain lesions). Seizures may modify the presentation pf psychosis and psychosis may modify the presentation of seizures.

  • Bidirectional Relation Between Schizophrenia and Epilepsy: A population-based Retrospective Cohort Study

Source: http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2011.03268.x/full

Date: September 19, 2011

What is it saying: Incidence of Epilepsy is higher in those with Schizophrenia and Schizophrenia patients have a higher incidence of Epilepsy. Thus, the two conditions may share a common cause

  • The Secondary Schizophrenias

Source: http://onlinelibrary.wiley.com/doi/10.1002/9781444327298.ch9/summary

Date: March 08, 2011

What is it saying: Epilepsy may/can cause Schizophrenic-like signs and symptoms which can lead to Schizophrenia-like psychosis

  • Schizophrenia Like Psychosis in Patients with Epilepsy Case Report

Source: http://www.ucms.com.np/journals/vol2/SCHIZOPHRENIA%20LIKE%20PSYCHOSIS%20IN%20PATIENTS%20WITH%20EPILEPSY%20CASE%20REPORT.pdf

Date: 2013

What is it saying: Epilepsy and Schizophrenia are both due to altered cerebral functioning and their history is often connected. Focuses on generalized tonic-clonic seizures presenting with schizophrenia-like symptoms

  • Recurrent Schizophrenia-like Psychosis as First Manifestation of Epilepsy: A Diagnostic Challenge in Neuropsychiatry

Source: https://www.dovepress.com/recurrent-schizophrenia-like-psychosis-as-first-manifestation-of-epile-peer-reviewed-article-NDT

Date: May 03, 2010

What is it saying: Studies have been done on Schizophrenia-like psychoses in Epilepsy since 1950s. It has been well documented that Epilepsy may be associated with psychotic disorders but, less widely recognized that the relapsing psychotic phenomena may be the first and only symptom of Epilepsy. This case study was focused on two patients specifically with an initial diagnosis of Bipolar Affective Disorder and Schizophrenic Psychosis. Treatment began using more epileptic tactics and during a follow-up, patients were free of Epilepsy and psychotic symptoms.

  • Epilepsy, Suicidality, and Psychiatric Disorders: A Bidirectional Association

Source: http://onlinelibrary.wiley.com/doi/10.1002/ana.23601/full

Date: August 07, 2012

What is it saying: Psychosis, depression, and anxiety significantly increase before Epilepsy diagnosis and after as well as one year after diagnosis. This shows that an underlying pathophysiological mechanism seen in both that lowers the seizure threshold and increases risk for psychiatric disorders

  • Hospitalization for Psychiatric Disorders Before and After the Onset of Unprovoked Seizures/Epilepsy

Source: http://www.neurology.org/content/78/6/396.short

Date: January 25, 2012

What is it saying: The risk of developing an unprovoked epileptic seizure is highest less than 2 years before and up to 2 years after a first psychiatric diagnosis (includes: depression, bipolar disorder, psychosis, anxiety disorders, and suicide attempts). Higher prevalence with those having depression and psychosis.


Wait, what does this all mean?

While yes, this is open for individual interpretation to some degree – you cannot deny there is a strong correlation between psychiatric conditions and psychosis with Epilepsy. At times, it appears this may be the initial or only sign of Epilepsy and could serve as a precursor to an eventual epileptic diagnosis for some people. Unfortunately, there is a gap between psychiatry and neurology that may allow some people to fall between the lines to be conveniently pushed into one section or another. I believe that this is what also makes Psychogenetic Non-Epileptic Seizures (PNES) so difficult and avoided. What if PNES is a soft-name for a precursor to  Epilepsy? What if we can catch Epilepsy through psychiatric disorders before the onset of a seizure? For me, this has opened up a lot of questions and I hope it made you think too. If you feel as though your psychiatric diagnosis does not quite fit your situation, do not be afraid to question your doctor. If you feel as though your PNES may be more epileptic, again, question them. Of course, this situation may not be for everyone, but questions get answered. Don not be afraid, advocate!


What are your thoughts or opinions? Did this get you thinking?

Share in the comments below!

 

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!

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


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!

Working with Epilepsy

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Barriers

As much as I would like to say discrimination does not exist; it does. It is part of human nature to analyze and judge effectively, but it is not part of human nature to ignorance as a form of judgement.

Epilepsy can be scary. It is scares employers, teachers, friends, family, coworkers, and those who bare the diagnosis themselves. It is the unknown of when the next seizure will strike or the unknown of what the root cause is. It is the unknown of how the future will forever be impacted.

There are discrimination laws put into place by the Americans with Disabilities Act (ADA) and Epilepsy does fall under the protection of the ADA; but some places can find loopholes. When they find these loopholes they do not bother to ever ask the person “how does this effect you? How does this effect your work?” They start making assumptions, then base decisions upon these assumptions. My main goal today is to help those who may be new to epilepsy or do not know where they stand under the ADA when it comes to employment.


The Interview

Working with Epilepsy can be a challenge. First question that tends to pop into one’s mind is “am I allowed to work? Should I work?” While we would love to answer that question for ourselves, we do still need to seek an expert opinion. Talk to your neurologist and see if you are cleared for work first and foremost. As much as we love to be independent and make our own choices, we need to make sure we are safe and we are able to keep others around us safe. Also, this documentation that you are cleared for work protects you – an employer cannot use the excuse “well I do not think you are fit to work” based on you having seizures when your specialist says otherwise.

Next question most people have is “when do I tell them?” This can get tricky but if you understand your rights under the ADA, it gets a little easier. When you are applying for a job, an employer “may not ask questions about the applicant’s medical condition or require to have a medical examination before it makes a conditional job offer.” What does this mean exactly? They cannot ask you about epilepsy, if you have seizures, frequency seizures, or if you are on prescription drugs during the interview process. They CAN ask you if you have driver’s license or if you can operate machinery and that portion you must answer truthfully. As for anything else, the employer at that point would be crossing boundaries with the ADA. Before accepting a job offer, you still do not have to disclose the fact that you have Epilepsy or a seizure disorder. ADA does not require those with disabilities to voluntarily disclose their disability UNLESS they will need reasonable accommodations during the interview.  Also, an employer cannot ask questions about your Epilepsy if you have voluntarily disclosed it. They cannot as about treatment either, but the employer CAN ask if you need an accommodation.


After the Job Offer

“What if I start working and realize it is too much and did not request accommodations?” You may request reasonable accommodation after becoming an employee as long as they are made aware of your condition. Now once you have accepted the job offer, they may ask you questions about your Epilepsy,  but since you now have the job, if any repercussions occur it will fall under discrimination. Although, it will not be considered discrimination if you cannot perform the job you were hired to do due to you condition or pose as a direct threat to health or safety of self or others that cannot be reduced or eliminated through accommodations. Employers may not disclose anything about your medical condition or accommodations to other employees either, as this is a breach of confidentiality.

“What exactly are reasonable accommodations?” Some accommodations listed may include: adjustments to work schedules, extra breaks, checklist to assist in remembering tasks, permission to brings a service animal to work, place to rest after a seizure, reassignment to a vacant position if the employee can no longer perform the original job, and so on. Do know than an employer may request a documentation stating that the employee has epilepsy and that accommodations need to be made. Also note that an employer does not have to provide these accommodations if doing so will cause hardship to the company (difficult to do or expensive). Now things here can become grey and it is a fine line to walk upon. If the employer decides it cannot meet the accommodation, they may choose an easier or less costly accommodation as long as the employee needs are met.


My Experience

I have not let Epilepsy stop me from working as my Epilepsy is also not severe enough to keep me out of work. Everyone will have a different experience with Epilepsy and the workplace due to severity, frequency, and type of seizures – but we all still consider the same questions of when to tell. For me personally, I do not require accommodations for work. Do I qualify? Yes. But I do not feel my job is impaired by my condition. Due to this, I decided to withhold the fact I have Epilepsy upon the interview and pre-empolyment process. Once I was officially offered the job and had agreed to take the job, I told health services when I went for my health screening. They asked if I needed accommodations, I said no and I have not heard anything about it since. They were really nice about everything and appreciated the fact that I told them. Since it is on my file, in the event that I ever needed accommodations, I would be able to have them. Ironically enough where I go for my neurologist and where I work is in the same place and under the same company. So if anything was to ever happen, everything possibly needed is already there.

A rule of thumb that I use is if they do not ask, they do not need to know unless it is putting someone else or myself in direct harm. I always tell employers after accepting an offer due to the event if, by chance, I had a seizure at work, they would not panic (this has not happened yet thankfully). I have been dealing with this condition for 5 years so I have a good handle on how this will effect me and my neurologist also has confidence in my knowledge of my condition.

It can be scary to tell you employer, as not everyone will be kind. Telling coworkers is another issue. I have told coworkers in the past and have gotten ridiculed over it so it takes me a while before I find someone I can tell. It is good to have at least one person who knows that works with you, if not then wear a medical ID bracelet/necklace as a precautionary measure. Although, have confidence in knowing you ARE protected and do not be afraid to fight for your rights. You define Epilepsy.


All information was gathered from the following sites, also feel free to visit them to learn more

←For those in the U.K. seeking information→

You may also call the Epilepsy Foundation’s Toll-free Helpline and ask any questions at:

1-800-332-1000
(en Español 1-866-748-8008)

Calls are answered 24 hours a day, 7 days a week.

We are your 1 in 26

“But you don’t look like you have Epilepsy”

     I have heard this line more times than I would like. I cannot help but wonder, what does Epilepsy look like? What do people think we are supposed to look like? Do our faces or our bodies look different? If I showed you some faces, could you pick out who has seizures and who does not?

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     We are your 1 in 26 (U.S.) and we are your 1 in 103 (U.K) who have developed Epilepsy. Were you able to see the difference between yourself and us? Were you able to see similarities if you too have Epilepsy? Truth is, we are not different. Epilepsy does not have a target. Any one, at any age, of any background can develop Epilepsy. Epilepsy is not rare, we cane found anywhere. 65 million people around the world have epilepsy yet there is no definitive cure. There are ways to sustain ourselves and hope that one day it will go away – while for some people, they are able to overcome and become seizure free, others are not so lucky.

       We live our days normally as everyone else. Some of us have families, work, go to school, and volunteer. We have hobbies too. We are people, just like you. We have feelings, just like you. But we face judgement, we face discrimination, we face the looks and the gasps. According to Science Daily; people with Epilepsy are more at risk for facing discrimination than those with other chronic health conditions (https://www.sciencedaily.com/releases/2016/09/160919103618.htm). But we keep going. We keep living our life, but more cautiously. Sometimes we may ask ourselves “why me” but at the end of the day, if it was not for Epilepsy, we would not be the people we are today. It may be part of us, but it is not us.


This is our reality.

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      These pictures range from just hours to a couple of days after the top images. Think about 26 people you know; within hours their life can change. It may come without warning, without cause. We live with uncertainty and worry. This is the reality of living with Epilepsy.

      What else is part of our reality is SUDEP (Sudden Unexpected Death in Epilepsy). Those who are at risk according to the Center of Disease Control (CDC) are those with generalized tonic-clonic/grand mal seizures and those with uncontrolled seizures. Granted the chances are slim in controlled Epilepsy – 1 in 1,000. But for those with uncontrolled activity, the rate is 1 in 150 per year (http://www.epilepsy.com/learn/impact/mortality/sudep). SUDEP does not include deaths due to injuries from Epilepsy – just Epilepsy itself. Some of us wonder what if we become that ONE person? What if our friend or someone in our family becomes that ONE person? It is something that is in the back of most of our minds.


Even as time goes on, not everything fades

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       These photos range from 2.5 weeks to a month after a seizure that resulted in a hospitalization. We bare our marks and we do our best to bare them proudly. Some of us bare marks you cannot see – mental health issues are closely related to those with Epilepsy. With every person who questions “what happened” comes a story about our journey and the journey of others like us. If we can make one person understand Epilepsy and its severity, then we can make the world learn in time. Awareness is key and education is the door we need to get through in order to end discrimination and find a cure.


For more information and statistics/facts about epilepsy visit:

I want to give a huge thanks for everyone who as brave enough to share their pictures; click on the images below to visit some of their blogs and learn more about their journey

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Help!

Do not be afraid to ask for help

Help – a simple four letter word that can grab the attention of almost everyone, yet so many of us are afraid to use it. For myself, I am one of those people. When you get first diagnosed with a condition, in my case Epilepsy, you notice people will start to treat you differently and act different around you. You are more carefully watched and more restricted. While we know it is in good faith, we miss our independence and being our own person. For myself, this made me resent the word “help.” Granted, I did and, to a point, still do need it. For me personally, has been very hard for me to accept. But I did. I asked and I do not regret it.


What type of help is available?

There are many sources of help for people with neurological issues. There are government funded programs, programs by state and country, support groups, help lines, help at school, aid if your condition does not allow you to work, counselors, and so on. Follow the link below to a little directory I made where you can find resources in your area for Epilepsy.


What type of help did you need?

While it may be debatable if I should be working at this current moment according to some people and questionable that I should even be in school this semester. I am in school and I will be going back to work this week – all cleared by my neurologist. Some people will look at me and ask me why I would need help if I am functioning as normal. While yes, I am functioning normally in one sense – my brain is still not up to par. Reading takes a long time, comprehending things becomes time consuming, and information recall/memory recall is still a struggle. Now, what if I am taking a test that is timed (which all of my exams and test are) and I do not finish because my brain is in slow-motion due to medication I HAVE to take in order to prevent seizures from occurring? Is it fair to penalize someone over that – especially when it is not their fault? Of course not! This is the type of help I need. It is still considered help and is still something I had to come to terms with. I did not want to feel different or feel like I cannot handle my workload but the truth is; it is simply not my fault. Neither is it yours. And only now, have I came to terms with this. I have been battling this feeling since 2011 and there is not a thing wrong with asking for help.


What if I need help in school?

Do you think your condition or medication is effecting you and your ability to learn? A good place to start is talking to your primary care physician or specialist. They will need to write you a note with the following information: a statement of condition or diagnosis from a licensed professional, description of how the condition was diagnosed and how it may/typically progresses, some places may require a description of the diagnostic criteria and what tests were done in order to diagnose you, information on how the condition limits your functioning by severity and frequency, your current treatment plan, and the recommendations for reasonable accommodations and an explanation of the need for specific accommodations. This letter will then go to your disability office and they will tell you what resources are available. Note that this is not just for people with Epilepsy, but anyone who may need a reasonable accommodation.


Wait, what is a reasonable accommodation?

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Reasonable accommodations fall under the Americans with Disabilities Act (ADA) and protects those with disabilities against discrimination whether it is in school or in the work place. A reasonable accommodation is “any changes in the work environment (or in the way things are usually done) to help a person with a disability” (https://www.eeoc.gov/laws/types/disability.cfm). It may be requested orally or in writing at any given time (tip: Schools really appreciate this at the beginning of the semester as soon as possible so they can make the accommodations. Sometimes this cannot be helped). Although, there is a loophole for employers; they can deny the accommodation if “doing so would cause significant difficulty or expense to the employer.” This goes by the size of the company and their finances.

A reasonable accommodation may be wheelchair access, extra time on exams, color-coded filing system, flexible work schedule, telecommunication devices, bigger fonts, and so on. It never hurts to ask an employer or school if they can make accommodations so you can perform to your true potential. If you have further questions about if you qualify or want more information on the topic, check out the following links:

←For those from the UK→


Even if you do not need these services now, you never know what the future will hold. It is always good to be informed in case you or a loved one needs an advocate. No one can speak better for you than yourself. But do not worry, there is help along the way

My Little Black Book

So close, but so far..

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So I keep this little black book as my “possible” seizure diary. I do not normally keep one for my tonic-clonic seizures since they happen infrequently compared to when I was first diagnosed. I say possible seizures because they do not know yet if they are actual seizures. I have these myoclonic jerks almost daily that increase in frequency before my typical tonic-clonic seizures – so people around me tell me. To me, they happen daily so I do not notice them increasing and when I do i chalk it up to something else going on in my life. I, for the first time, went three days without a jerk. I was so excited. Then my brain decided to remind me it was part of my body and whoops, I only made it two days – which for me is still an improvement. Since the Keppra they decreased in frequency, so “go Keppra, go!” So did I lose anyone yet?


What is a Myoclonic Seizure?

Myoclonic seizures are brief jerks of movement, almost like a shock, that involve a muscle or group of muscles. They do not typically last longer than 1-2 seconds and can happen as a single episode or multiple episodes. People without epilepsy can actually experience these with hiccups or a sudden jerk before nodding off. In epilepsy, they can cause abnormal movements in both sides of the body; usually in the neck, arms, and shoulders. The person is conscious and aware of what is going on. These usually begin in childhood, but again can occur at any age. These seizures are often overlooked because they are tossed up as tics, tremors, or as the person being clumsy.

In my experience, now I am not officially diagnosed, these “tics” come randomly. I have had them before my tonic-clonic seizures and before my diagnosis. I am aware and conscious when they occur. I only have had single episodes at a time, but sometimes more than one episode a day. My head, neck, arms, and sometimes upper body/chest is effected and jerks. My head will turn to the side, my arms will sometimes contract in or move upwards, and my upper body will shake. I can feel my body get tense when it occurs and I cannot stop the “tic.”

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Can you have two different types?

Yes! As unfortunate as it may sound, it is perfectly possible. Some people will have seizures that change with age and puberty and others can have multiple types. Now, I did not start having tonic-clonic seizures until after a car accident where my head suffered a laceration needing staples. It is plausible I may have had a seizure disorder before that and perhaps the car accident changed or brought on new seizures. While nothing is definite yet, I have a gut feeling the neurologist is going to lean that way, especially with the frequency and that it happened before I suffered any head trauma. I am not the happiest person ever when I got the news but it could be worse, right?


      Do you have myoclonic seizures or more than one type of seizure in your diagnosis? Comment below and tell me about your story!

Seizure First Aid: How to Respond

What do I do?

       Watching someone have a seizure can be terrifying. They can happen to anyone, at any age, any time, at any place. Would you know what to do?

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  • Airway & Breathing: If you see someone having a seizure, check their airway and breathing. Make note if they are struggling to breathe, if there is blood or drool/foam coming from the mouth, and if they are vomitting. You want to make sure they have a clear airway through this process. While you may not be a medical professional, an easy way and a huge help is to place the person on their side. This allows fluid to drain out of the mouth and keep their airway clear. Some people vomit during their seizure so it is extra important that if you have any uncertainty on what to do, place them on their side.
  • Remain with them for the entire duration: Unless you have someone else there or can get someone else there, do NOT leave them during the seizure. Some types will cause people to completely lose control of their body and consciousness. It is also important that if you saw the seizure begin that you remain or pass on information to the next person so they can get an accurate depiction of what happened.
  • Time the seizure: As soon as you notice someone is having a seizure, make note of the time and when it is over, note what time is ended. This can be very beneficial to the person and medical professionals. If a seizure lasts over 5 minutes – call an ambulance; they need medical assistance and could result in a medical emergency.
  • Prevent Injury: You want to try your best by helping the person avoid additional harm. Move hard objects out of their way, if they are not on the ground already (and depending on the type if it makes them a fall risk) – lay them down on their side or sit them down, loosen tight clothing around the neck, and cushion their head if possible. Do NOT place anything into their mouth as this will cause harm. Do NOT  restrain or hold the person down as this could also cause harm to the person or yourself.
  • Remain Calm: Easier said then done but it is important for you as a caregiver to remain calm. Take a few deep breathes for yourself and focus on getting through each second and each minute until the person comes to. You do not have to call 911 unless the seizure is over 5 minutes, the person is injured in the process, person has back-to-back seizures, not waking up or regaining consciousness after the seizure, or there is another underlying issue that requires emergency personnel.
  • Be Supportive: After a seizure a person may become embarrassed, scared, worried, anxious, distraught, confused, disoriented, tired, or emotional. It is important to listen and remain with the person until they are fully aware and feel safe. If you cannot stay with them, be sure to call someone to be with them during this time. For some types of seizures, you will have to explain everything that happened to the person since they will not remember. Remember: be patient.

Helpful Tips

  • Look for a medical alert band. Not every person will have one but this is an important device with the person’s name, condition, and medication. Some bands will also have contact information – if able, be sure to contact these people to make them aware. If someone is having a seizure and does not have an alert band – if you feel uncertain, call 911 as this may be their first seizure.
  • If this is someone’s first seizure – take them to the emergency room. There might be an underlying condition associated with it and it will give a baseline to their neurologist and physician.
  • Do NOT give the person food, water or pills (basically anything by mouth) until they are fully awake and alert and orientated. This becomes a choking hazard and sometimes can even send food and water into the lungs and cause other issues. How do you know if someone is alert and oriented?
  1. What is your name?
  2. Where are you right now?
  3. What year is it? What month is it? What day is it?
  4. Who is the current president?

     Hopefully you found this helpful and pass it on to your friends, family, and peers!

Remember; education is key.