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

 

 

 

A Very Special Announcement

It has been some length of time since I last stopped by, I am sure this may lead to some of you wondering why. Well, between being a student and working, I have been blessed once more with a beautiful gift; I am expecting baby number three! As you may know, I have previously blogged about Epilepsy and Pregnancy (click here to take a peek); now I will be able to post my experience as I go along and answer questions in real time. I hope this helps some of you who are thinking about pregnancy, are currently pregnant, or are curious about pregnancy and Epilepsy.

 

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Wait, how long have you known? Why the wait?!

Truthfully, I found out back in November. I had the inkling that I was pregnant due to an increase in nocturnal seizures (which is typical for me and typical for some others to have an increase in seizure activity due to hormones). We were indeed actively trying due to other health circumstances that have been bestowed upon me. These health circumstance will impact my ability to carry children and sadly this will have to be my last pregnancy for the sake of my health. This time around, I was actively seeing an ob/gyn due to the circumstances and began taking folic acid at 4mg and prenatal vitamins before conceiving, as well as continuing with my B6, fish oil, and Keppra. During this time my Keppra dose also seen an increase due to being diagnosed with myoclonic seizures – which did aid in decreasing the frequency of these seizures. In due time, I had one large nocturnal seizure, noticed a huge decline in myoclonic jerks, and soon enough seen a positive pregnancy test. My partner and I could not be any more thrilled as we welcome a new child into our life.

Currently, I am 18 weeks and 1 day and due date is still set for August 1st, 2017. I wish I could say it has been smooth sailing, but we had some bumps early on. While my health issues reproductive wise do pose a threat, I was also diagnosed with a fairly large subchronic hemorrhage (abbreviated as SCH), also known as a subchronic hematoma. A SCH is an accumulation of blood between the fetal membrane, next to the placenta or between the uterus and the placenta itself. It can cause light to heavy spotting, but some women have no bleeding at all.  SCHs typically tend to affect 25% of all women in the first half of pregnancy and will typically resolve on their own. Unfortunately there is no direct cause or way to prevent this from occurring; it is one of those events that “happen” and is due to the egg slightly separating or tearing from the uterus. Sometimes you will also hear it referred to as a threatened miscarriage – as yes, there is a possibility for a miscarriage to occur.

(Photo pulled from Google as an example; for reference my SCH was the size of the gestational sac)

Thankfully enough, when my bleeding start I was at work and the ER was just downstairs. I tried my best to remain positive when I saw the blood, but as it got heavier, thoughts rushed back from my first miscarriage. I could not shake it, I could not bear going through it again. Unfortunately, and realistically, I knew there was nothing I could do but hope. So that is what I did, I kept faith and hoped. Soon enough I had an ultrasound, I was relieved to see the heartbeat. The bleeding had slowed so I assumed everything was going to be okay. Not the case. The doctor came in and explained the fetal heart rate was quite low and to expect a miscarriage within the week. My heart sank. It sank even harder because everything seemed okay. Everyone told me not to worry, everything looked fine. Moments later, here came the doctor to rain on my parade. I broke down immediately. I could not believe what I was hearing. The flicker I just saw would soon be blown out, yet again.

With a heavy heart I went home to await my early meeting with my new found life. I did exactly what I was told: rest, stay on pelvic rest, hydrate, and try to relax. Easier said than done, but I did just that. My ob/gyn did a follow up, that whole week seemed to drag. To my surprise, there was the flicker with a healthy heart beat. S/he proved the ER doctor wrong; they were holding on. Unfortunately the SCH was still there, but all that mattered was that flicker.

Due to this, I chose to delay announcing. I did not feel comfortable explaining to everyone if a negative event occurred. Around this time, I was still having nocturnal seizures (which is atypical for me) and did not feel like I was going to have a positive outcome. But here I am, with my little one snug inside, telling you my story.

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What about your Seizures?

As of lately, I had not experienced any tonic-clonic or myoclonic seizures. Although, I have experienced a couple more nocturnal and this is becoming concerning as usually all forms stop during pregnancy. To be fair, I did work more than my recommended amount due to missing days. Now I am back on my normal schedule and things have been fine.

I will not lie and say I have not had any anxiety building up as I approach the halfway mark. In my other blogs, I talk about some scary episodes where I had seizures and very well could of compromised my children’s life. This is the unfortunate reality of those who wish to parent and live with Epilepsy. Due to this anxiety, I am starting to look into seizure alert watches as well as requirements for a service dog. I do not think I will meet the requirements for a service dog realistically, but hopefully a watch will be reliant enough. My partner will also be moving in, which will be in itself a huge help and makes me feel safer. As he says “we’re in this together.” I also started to do yoga again and music helps as well with unwinding. I will do everything in my power to keep my family safe – even if it is from my own condition.

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               Doing anything different this time around?

Aside from the fact I was more proactive with folic acid and other supplements and intend to invest in a seizure alert system – I am planning on giving breastfeeding a chance. This will be a completely new experience that again, raises some anxiety. Since the birth of my first child and being strongly advised not to breastfeed while on Keppra, I have been following research carefully. With my second child, it was a more “up to you” response when I approached health professionals, so this time I dug as deep as I possibly could. One site stated that during lactation, doses up to 3500 mg daily produce low levels in breast milk and would not be expected to cause any adverse effects in breastfed infants (https://www.drugs.com/breastfeeding/levetiracetam.html). Luckily, I am under that quota at 2000 mg daily so it would be considered relatively safe by those standards. However, the infant will need to be monitored or drowsiness, weight gain, and developmental milestones as a precautionary. Although, in my case, my children were monitored for this regardless due to being on Keppra during pregnancy. If you have not had children yet, doctors may use the wording “sleepy baby” to describe babies born to mothers on Keppra. Babies tend to sleep more, are drowsy, and/or be more calm than those not born to Keppra mothers.

In another study in 2005, results yielded that levetiracetam does transfer into the mother’s milk, but does not pose any risk or harm to the infant due to very low serum levels. These serum levels were actually lower than what was found in the umbilical cord, therefore breast milk contains less than what the infant was originally receiving (https://www.ncbi.nih.gov/pmc/articles/PMC1363376) . A 2013 study that was published in the Italian Journal of Pediatrics also supports this claim if the dose is below 3000mg a day (or 3g a day as the study states; https://ijponline.biomedcentral.com/articles/10.1186/1824-7288-39-50), it will pose no harm to the infant .

You will find sites stating to not take Keppra while breastfeeding and this may become concerning. Unfortunately, the reason for this is due to lack of studies to completely verify Keppra as safe. You can equally find an number of testimonies of women who breastfed on Keppra and their child having no complications. I suggest talking to your ob/gyn/midwife as well as your neurologist. Often, we have to see a maternal-fetal specialist who you may also ask. From my personal experience, they could never give me an actual answer other than it being my choice. Although, after doing research as well as seeing other mothers who have been through it, I have decided in my circumstance that the benefits outweigh the risks.

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Do you have any information you would like to share?

Any questions you may having regarding Epilepsy and Pregnancy?

Leave a comment below!

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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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!

Epilepsy Med-Pack

       Always be prepared

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I was greatly inspired by my good friend Tori on making an Epilepsy Toolkit. After my recent accident and knowing that if it was not for a firefighter being involved; there is no promise I would have been as well off as I was. Then I started thinking some more – what if I am able to drive again and get into an accident while having a seizure? What if I saw someone else having a seizure (this has happened before)? I decided to take the next step.

This is my Med-pack; essentially a first aid kit tailored to your liking. I found these nifty little bags at a local Rite Aid and they had coupons inside for things that one might buy. Here is the run down on my version of the Epilepsy Toolkit.


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  • Note book and pen – that might be silly as someone having a seizure may or may not be able to communicate. But timing a seizure is very important! When an emergency situation occurs, it may be hard to remember dates and times while tending to someone so take a second and write it down! This is very beneficial for the person you are helping, their medical provider, and for you! Remember: After 5 minutes call an ambulance – or if there is no medical alert ID can be found.
  • Alcohol wipes and gloves (latex free preferably) – For me personally, I have tonic-clonic seizures that come without warning. So yes, I will fall and usually there is blood. If someone else was bleeding I would also wanted gloves and something to clean their wound with. If you are making your own first-aid kit or med-pack be sure to use latex free gloves. You never know who will be helping YOU in an emergency and you do not want two emergencies going on at once
  • Bandages of all sizes – Some people with epilepsy will hurt themselves and bandages can become quite useful!
  • Butterfly closures – okay, so some of you might be like “what in the world is that” (see picture below). It helps hold skin in pace for small wounds that might need more than a bandage. If you think someone might need stitches, slap a butterfly closure on them until help arrives

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  • Gauze pads of various sizes – This is mostly because of my car accident and seeing the mass amounts of blood everywhere. If someone is bleeding a lot, these will be more beneficial to you. If you needed to set yourself up a little field to lay things out, hey gauze pads work for that too. Also, if someone is puking and you want to give them a little bib, gauze pads can help
  • Paper tape – I say paper tape over cloth tape because it is easier on the skin and less chance of a reaction to occur. If you need to tape gauzes to someone or something is not sticking well, use the paper tape
  • Tissues – Some of us may foam at the mouth, drool, or vomit so it is helpful to have these laying around.
  • Scissors – not every day kitchen shears but something you would see in the medical field. If someone is seizing and the clothing around them is too tight – use scissors!
  • Antibiotic Ointment – for those wound that bandages would fix up. The more you can help clean out wounds the better to decrease the risk of infection.
  • Hair tie – if someone seriously injured their face or part of their head you would want to get hair out of there or if the person is vomiting.
  • Survival Wrap – okay, this coming in handy probably sounds very slim as a wrap but it is meant to help prevent heat loss. Well, if you are waiting for an ambulance in the winter this actually could be very helpful. But it is also super reflective and could be used to warn oncoming traffic or grab attention. This can also be used as shade and prevent over exposure to the sun. I just had this in my house and hey, you never know

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     I got lucky and my medical ID came with its own little pouch. It has the medical alert symbol on it and in there I placed an index card with my full name, date of birth, emergency contact(s), diagnosis, type(s) of seizures, list of medications, name of my neurologist, types of insurance I have, when to call an ambulance, where my med-pack is located and a brief run through of epilepsy first aid. I always have my insurance cards on me as well as a picture ID so I do not worry about placing them in there. I also listed my children’s names on the card in case they were ever with me. I carry this pouch everywhere with me and I will bring the med-pack if I am traveling.

This might seem a little over the top (did I mention I am a nurse in training?) but after my experiences with Epilepsy I would rather be over than under prepared. Also, this can be used for just about any situation and it is always just a good idea to have something similar with you in your car or on your travels. I hope this was able to help some of you out and maybe have some of you start your own med-pack.


Did I forget anything?

Feel free to leave a comment below on what you think should be included. Also, check out Victoria’s Epilepsy Toolkit here and see what she has: https://chroniclesofkeppra.wordpress.com/2016/09/11/the-epilepsy-toolkit/

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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